If you have a tip or suggestion for your fellow CH'ers or for the newbies that come here FOR HELP

Please remember, not everything helps everyone, however, that is why we are all here...to help and support.    


Serious tips only please!!  

Thank you,
Steph

Well, I'm really quite surprised of the replies I got from this, or lack there of, I should say!  Over 200 people have viewed this and I have goteen 5 back!!

(I know you people can talk waaaaayyyyy more than this and I KNOW you all are opinionated!!!)   ;)

C'mon folks...help the newbies, and/or each other out on this one!!!

"When I was first diagnosed with ch in 2003 my neuro told me that the first med he told me to take had helped 85 per cent of his patients to get to PF time. Well, I was part of that 15 which it didn't help...

My point is: I wish that he or someone else had told me at the time that it might take some time before I'll find the meds which work on my ch and treatment, which is just right. I am optimistic person, but still, I would have appreciated more if the doc had told me that. I know that it sounds like something that everyone is aware of, but at the time not being PF after starting to take that med made me feel like a failure. I would have been more hopeful about it all, if I had known that sometimes one must try several meds and treatments before reaching PF time."

---Ch Sufferer

"One of my tips is to make a jug of strong iced coffee and keep it in the fridge.  When you wake up with a hit, pound a glass or three.  Having it ready made is a lot easier than messing with the coffee pot with a kip6 and rising."

---CH Sufferer

"OK, I can't help it - this is a bit long. The main thing I would want to share with someone new to the site would be that they can't give up. When things are at worst, with multiple daily hits and the most extreme cluster headache pain - we must get relief. If thoughts of ending it for good are occuring, we should be given whatever meds are necessary to get a break from the pain. Even if it takes hospitalization at a pain clinic and being knocked out for a while. Even a small break can help you get your bearings and recover the will to find what helps specific to you. Get yet another doctor if necessary. Try EVERY treatment available if needed, but do give new meds some time to see if they will work. Always research current treatments and help your doctors make the right choices for you. Sometimes a treatment that worked previously will no longer help you. Be willing to find out a new treatment or combination of treatments that will work to minimize or eliminate your pain. And, of course, don't plan on pain meds as being the primary or long term treatment of cluster headaches. There are many successful treatments and combinations of meds that are worth trying. Find support and hang in there."

---CH Sufferer

"My tip for fighting the beast would be to have your guns ready at the first sign of an attack.

These are things I keep in stock at all times

- imitrex
- crushed ice
- oxygen

What I do when the beast first wakes me up, is grab my trex on my bedside table. I immediately make an attempt to stop the cluster from escalating. I then go to my freezer and grab one large zip lock freezer baggie I have prefilled with ice and run for my START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and turn on my o2 bottle. My regulator is already pre-set for 15 liters per minute, less than that is ineffective for most of us, thats a key factor in oxygen therapy. Without proper flow and a clustermasx, you will usually exhaust all of your oxygen and begin to inhale to much outside air, making it less effective, if not useless. I apply the crushed ice bag to the cluster side of my head, and move it from my eye to the back of my neck. When the ice begins to melt, I grab another bag if needed. I always have bags in the freezer ready to go.

With any luck, my cluster will be gone in less than 20 minutes.

My tip is to always stay armed, if you run out of oxygen, abortive, or ice, your just prolonging your agony.

For those that are unable to use medications, ice and the clustermasx have worked for me on many occations, and hopefully you too. The key is to get on the o2 ASAP, using the correct regulator and mask that will give you minimun of 15 LPM.

I hope this helps someone.

Keep the faith my friends"

---CH Sufferer

"I did not know what they were until my recent cycle began on Aug. 12 of this year. I have been told by my doctor for the last 8 years that it was allergies because they always came in the fall around the same time. Then they told me it was a sinus infections. I almost got Indoscopic surgery because my nose always plugged up during my attacks, and the reason why my headaches came at night was because i sleep on my back. "all that stuff draining into my sinus cavities" caused my headaches hahahaha.
After my recent cycle, I started studing up on my own AND I FOUND Clusterheads. Thank god! I nearly started to cry. I have dealt with this for years. I have taken all types of stuff to try and treat my clusters. The reason I am P.M.ing you is because The nasal spray "Sinus Busters" accually works for me. I am not a sales man or anything like that. I just thought it could help other people with Clusters and I feel for them because these headaches have ruined many needed nights of sleep for me. I hope this helps. Thank you for listening to my story.

      P.S. I also found out the formula in Sinus busters is just a natural form of lidocaine. So you can use it alot if you need to. I found this out from a pharmacist buddy of mine."

---CH Sufferer

Tips for making an ice "slushy"

Personally, I can't take cold for my CH, I need the hottest thing I can find, but this might be helpful for the folks who use ice for CH. This is a easy way to make a reusable cold pack on the cheap --better than peas cause once you re-freeze peas, they are a solid mass. This stays flexible. It may not stay cold as long as peas do,  but... here ya go:

Slush
In a ziplock plastic bag
-Add: 2 parts water
       1 part rubbing alcohol
-Remove excess air from bag when sealing
-Put this into another ziplock and remove extra air (i.e. double bag it) to prevent leaks
-Freeze
-Use and re-freeze.

If not slushy enough, add more alcohol.
Use as you would any ice pack (wrap in towel or paper towel and apply)

Hope this helps"

---CH Sufferer

"If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many side effects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Some tricks that I have used and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye ( Peas are your friend)
*Tons of STRONG coffee."

---CH Sufferer

"Cold air from the car's air conditioner pointed straight on my face, a fast walk at about 4.3 miles, a hot shower, ice in a plastic baggie (wrapped in a soft cloth) helps me and many people use a bag of frozen peas, and accupressure (will I describe in next paragraph) help me deal with getting hit but do not stop the mechanism of the headache.

This accupressure actually works better on the non-ch headache caused by meds.  Care must be taken NOT to press too hard and too long.

(qualification - it takes 3 pounds of pressure to get a key to work on a keyboard.  6 pounds pressure is what I use in the accupressure.)

1.  find the spot between your eyebrows.  Just above the slight bony ridge, directly in the center, press with one pointer finger fingertip straight (at a right angle to the spot between & above the eyebrows) press for 30 seconds  (anything from 20 to 40 seconds will work, but I use 30).
2.  from that center spot, move each pointer finger over (outward from the center, over toward the arch) the width of one fingertip along the top of the slight bony ridge in the eyebrow and apply 6 lbs pressure for 30 seconds.
3.  repeat two more times, moving each fingertip over (the distance of a fingertip)and applying 6 pounds pressure for 30 seconds.

This does not stop ch but it may help deal with accompanying headaches.

This can also be done at the inverted v at the back of the head"

---CH Sufferer

I have been asked about this, so I have pulled it up AGAIN for all the newbies ..I sure hope it helps ya!!!

Chuck


Part A
I think it is time to repost oxygen (O2) tips and information.  Most of this has been posted before, but I have included other information and links, all into one post, part A, and part B.  BTW, I am NOT a doctor, nor a respiratory therapist.  I am just a clusterhead who has listened, read, and tried various methods, and found some that work, for me.


If you don’t have a non-rebreathing mask
The nose canula CAN work, if used this way: Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale.  Open your mouth to exhale, and then close your lips, again, around it to inhale.  Breath only through your mouth.  Do not inhale any “room air” only the O2.

If you can’t get a moisturizer
Make your own.  Take an empty (and cleaned) mayonnaise jar (or something like that), drill two small holes in the lid, the size of the O2 air line.  Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar.  Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid.  Seal around both hoses with a silicon type sealant.  Put an inch or two of water into the jar.  No more than ¼ full!  I attached mine to the tank with a bungee cord.  BTW, if you put ice cubes into the water, it will cool the O2 somewhat.  Many feel this helps it to work.

To buy your own bubbler go here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Thank you, Mr Happy)

If you are using a non-rebreathing mask
I hold the mask to my face with my right hand.  I hold it firmly to my face with the palm of my hand.  When I inhale, my index finger goes over and covers the holes on the left side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully.  I place my thumb over the holes on the right side of the mask (the ones without the valve on them).  I use my right hand, so that my thumb covers the holes on the right side.  My thumb is larger than my fingers, so it does cover the holes completely.  When I exhale, I just lift the finger and thumb (keeping the mask to my face by the palm of my hand), and let the air out of those holes.  Some people tape over them.  It works better for me, the way I describe it, as you don’t have to lift the mask, when you exhale.

When and how long to use the O2
Grab the O2 as SOON as you feel it coming on.  Speed is the name of the game.  The sooner you get on the O2, the better the success rate.  Stay on it for 15 to 20 minutes.  If it has not killed the hit, stop using it. Bear through 10 minutes without the O2, and then hit it again.  If the O2 does not work the first time, the second time is almost always the charm for me.  Something about that 10 minute break seems to do it, for me.
You don’t need to stay on it for the full 20 minutes, if it stops the hit well before that time.  BUT, stay on it for 5 minutes AFTER the last of the pain is gone.  The first and last place I have pain is just above my cheek bone, at my temple.  I press my finger into that spot, and if I still feel some pain, I stay on the O2.
Trial and error will let you know what works best for you.

If O2 does not or stopped working for you
Try it again.  I have gone through periods where it did not work at all.  There have been other periods, where it only worked about 20% of the time.  Keep trying it.  Even if it only works a few of the times, those are hits that you did not have to take imitrex or suffer though a full hit.  It has far fewer side effects than any other medication.  It is worth it to keep trying.

(continued, below)

Part B
Peppermint Medical reference:
(16th Edition) of Harrison's Principles of Internal Medicine.   It's IN THE BOOK as a valid treatment/therapeutic (don't remember the exact wording here) use for clusterheadaches.  


Biker bob
Another oxygen tip: Don't run out, always know how long your oxygen supply will last and how long it will take to get a resupply.  At 12 lpm an E tank will only last 44 minutes. An H tank will last 8.3 hours. Here is a calculator to determine how long your oxygen supply will last:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Roxy
Like Chuck says....if it didn't work for you before....try it again.  Make sure you have all the equipment right.  There is a picture of everything here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There is also a new mask out that works great.  (to purchase, go to: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)  I also use mine without the bubbler about half the time...they don't work well with a welding regulator...  It's drying on the throat and lungs....but I never notice at the time.

Even if the 02 doesn't work real well for you, and at times if has lost it's effectiveness for me, it still helps me to get that mask on and breathe.  I use it as a focus point.  Just like in childbirth when they teach you to focus and breathe through the pain.....it works the same for a ch.  I found out a long time ago that the pacing, crying, headbanging.....it only intensifies the pain.


Mr Happy (If your doctor will not prescribe a high flow regulator)

Buy your own regulators on EBay.
Think long term.........once you have the O2, make sure you have the right accessories for proper delivery. Don't count on anybody else to provide the Right Stuff.

You're gonna be at this for a while,

Common tank’s information
Tank - - - - - Tank - - - - - - Cubic - - Nom. OD - - Nom. Lgth. - - - Nom. Wt.
Name - - Pressure (psig) - - - Ft. - - - - (inches) - - - - (inches) - - - - Empty(lbs.)
- H - - - - - - -2015 - - - - - - -251 - - - - - 9.04 - - - - - - 51.00 - - - - - - -130
- M - - - - - - -2015 - - - - - - -125 - - - - - 7.00 - - - - - - 43.00 - - - - - - - 75
- E - - - - - - -2015 - - - - - - - -20 - - - - - 4.14 - - - - - - 25.75 - - - - - - -  16
- D - - - - - - -2015 - - - - - - - -10 - - - - - 4.14 - - - - - - 16.75 - - - - - - -  10


Gator
Here is something to printout for those doctors who might prescribe oxygen, but not want to give you 15lpm.  This is from Dr. Todd Rozen, one of the leaeding docs in the country for ch.  It justifies the high flow rates.

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I hope the above tips and information is helpful.  Thank you, fellow members for the information I stole from your posts.

My husband suffers from cluster headaches and has been to this site seeking help.  He told me that many of the postings complain that their insurance will not cover the medications you need to get relief.

If you don't know, and you should have been told by your insurance carrier, you have the right to appeal any denial of coverage for your medical needs.  I work for the state Department of Insurance and the laws in my state give you certain rights to appeal any denial of care or treatment.

Your insurance company should provide you with the information on how to appeal a denial of treatment.  If they have not given you this information, contact your local department of insurance and file a health care appeal or a complaint against your insurance company.  

You can find your state's website or contact information by going to the following link.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  Click on the link for your state and look for information on health care appeals or how to file a complaint.  

It may be worded differently for each state, and the laws may be different, but most states require that an insurance company provide you with the right to appeal a denial of coverage.  

In some instances you can request an expedited review and they are required to review your situation and make a determination of coverage with specific timeframes.

Good luck and God bless.

If you need more information, email us at jemmybloocher1@gmail.com and we will try to answer your questions.

Glaxo Smith Kline has a couple programs available for assistance for those who cannot afford prescription coverage for Imitrex and other drugs in the US.  I have personally used the Bridges to Access program when I went back to college and had no prescription coverage.  It is very easy to enroll in and very convienient, your doctor's office sends the info to GSK and they contact the pharmacy in your area who participates, and you go pick up your prescription.  I think I ended up paying $20 for 12 statdose refills.  If anyone is having problems paying for your trex I strongly encourage you to visit the websites below:

GSK Prescription Assistance programs:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Bridg es to Access program:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The third site, PPA will help you determine what programs you are eligible through both GSK and your state:
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I found that the 5 hour energy drinks help to reduce or kill the beast relatively quickly (7 minutes) - and have moved on and take the main ingredients are Taurine (675 Mg),Magnesium (100 Mg)  and B6 (250 Mg)  three times a day and the headaches have been significantly reduced in pain level - enough so that I can get to the O2 soon enough that the beast is kept under control.  I believe that these levels of drugs do not have any side effects - not for me anyways.

In 25+ yrs being episodic... and like most I've tried just about e/thing.   Remember too like we all say. what works for one... may not the next.

But I have found VERAPAMIL to break my cycle..(of course not b4 a few ER trips).. i take 360mg twice daily (not the extended release!)..

This is more than the recommended normal dosage.  I had to convince my dr that I needed this much..  some docs won't give this much.. because it does lower your b/p...

My 2 cents... other than that, I've not really found anything that 'helps' during an attack... sigh

I have found that some of my meds you can crush. I crush my demerol and let it absorb in my mouth. Its a horrable taste but it is worth it.  It starts working within 10 min rather than 1-2 hours when it isn't even worth it. But ask your doc or pharmacist if the pill can be crushed.  Haven't found much else that helps  

It's not easy to see a neurologist in a hurry after CH episodes start, as most neurologists have 6, 10, even 14 week waiting.  If you're caught without meds stocked up, INSIST that a CH cycle has started.  Receptionists may not understand it, so INSIST that they leave a message for the neurologist.  My neuro has squeezed me in within 2-3 days, 10 out of 10 times.

Neurologists usually have samples from salesmen.  If you don't have insurance, be sure to tell the neurologist.  You may end up with a few injections or NS for free!

If you already know what cocktail works, get your neurologist's blessing on having your GP renew prescriptions every year at the annual exam, especially O2 so that we're never caught unprepared.  We can stockpile triptans this way during off cycle too.

Don't be afraid to SHOP DOCTORS!!!

36 years, I've had docs talk me out of oxygen, too dangerous....had them flat out tell me there wasn't anything they could do, had me wait weeks for an appointment, prescribe God knows what, God knows why, etc, etc, etc. Some doctors seem to care and understand, almost share the pain, others have struck me as more interested in protocols and clinical efficiency.

My current MD/GP has taken it upon himself to understand CH. On my call, he will phone in scripts for oxygen or other meds previously prescribed. Office appointments are usually within 24 hours, and are generally around discussions of new treatments and the such. He prescribes a set number of pills, so out of episode, I can stockpile a few, so as not to run out mid episode, then to pay $25 a piece. While doing due diligence, he is quick to prescribe new drugs, when the old ones seem to have lost their efficacy. It has been my experience, headache specific drugs either work or don't work, Zomigs and Relpax of late, while with the drugs treating the episode do require patience.

If you have a previously successful course of treatment, I cringe reading posts where people wait weeks to see a neurologist. Even there, the best Neurologist I ever worked with, Dr James Dexter, had a standing order, that when a CH patient calls, interrupt whatever he is doing.

Out of episode is the time to shop for the best doctor, but if your current MD isn't providing the above level of support, perhaps you can do better.

God bless the caring healers out there, they are all the difference in the world.

This may seem far fetched to some but if taken seriously it may work for you as well. Some of my clusters I've been able to meditate them away. I took this from a lesson in Psych class that said a lady beat a tumor by imagining an army attacking it through meditation. I know, it sounded like a load to me too.
I lay down real still in a silent area and imagine men (they look like mario bro's men) setting up scaffolds on the inside of my forehead. I imagine my forehead as many square plates (approx. 8 across and 4 up and down). These plates have bolts holding them flush and some bolts have come loose when I get a CH. The mario's get to work with their air ratchets tightening the bolts as you would lug nuts on a car. As a whole plate is completed they use a drywall knife to scrape the seapage from the borders of the plate. (I use this to lengthen the job as it doesn't work immediately but it starts to feel better as you go along). Sometimes they will never finish the job but I let them keep on working because it offers me relief. never total relief, but relief all the same.
You sorta have to believe it to make it work and your environment has to allow for it. I require total silence to use this method effectively for myself.
My wife thought I was a loony tune when I explained it to her for the first time, but she now uses the same method with different characters for her headaches and it works for her.
Good luck to all.

Snapper21 wrote on Dec 22^nd, 2008 at 5:18pm:

This may seem far fetched to some but if taken seriously it may work for you as well. Some of my clusters I've been able to meditate them away. I took this from a lesson in Psych class that said a lady beat a tumor by imagining an army attacking it through meditation. I know, it sounded like a load to me too. I lay down real still in a silent area and imagine men (they look like mario bro's men) setting up scaffolds on the inside of my forehead. I imagine my forehead as many square plates (approx. 8 across and 4 up and down). These plates have bolts holding them flush and some bolts have come loose when I get a CH. The mario's get to work with their air ratchets tightening the bolts as you would lug nuts on a car. As a whole plate is completed they use a drywall knife to scrape the seapage from the borders of the plate. (I use this to lengthen the job as it doesn't work immediately but it starts to feel better as you go along). Sometimes they will never finish the job but I let them keep on working because it offers me relief. never total relief, but relief all the same. You sorta have to believe it to make it work and your environment has to allow for it. I require total silence to use this method effectively for myself. My wife thought I was a loony tune when I explained it to her for the first time, but she now uses the same method with different characters for her headaches and it works for her. Good luck to all.

Ain't no way you can lie down during ch,much less meditate.  That's when ya get them happy feets.  

          Much kinder gentler Potter

I'm 36 and have suffered from CH's since I was 22.

Verapamil has worked for the past 10 years to break cycles....except this time!

About every 4 years in the winter I get what I call "Jumpers" - they start on my right side of the head for 2 months then jump to the left.  The left hurts MUCH worse!  Strangely, when the left ones start, the right ones are done...just like that!

This is my first time ever trying oxygen and it works great except the CH always comes right back.

Relpax is the best triptan!!!  I often pop a Relpax just before bed and usually get a good nights sleep.  It typically stays in the system for 6-8 hours.  As we all know, 6 hours of sleep is priceless during a cycle!

In the past, I have ALWAYS found that vigorous exercise takes a CH away, but like with oxygen, it will come right back.

Good luck!

Tyson wrote on Dec 23^rd, 2008 at 1:11am:

This is my first time ever trying oxygen and it works great except the CH always comes right back.

Tyson,

Try staying on the O2 for 3-5 min after the pain subsides, till you are totally clear. This usually works unless if you need more flow. 25 lpm is what I call the gold standard but not everyone can take it right off the bat until they are trained to do it. Oh I almost forgot, make sure you have a non-rebreather mask like the ones you see in the ad's on this site. Look at this link for more info. You need to get 100% pure O2 to get max benefit from the O2 therapy...

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Q… we can answer, just let us know!

Roland. ;)

Forget the Sinus Buster, it is nothing but snake oil.  I tried it a few years ago and it does not work at all!!!!!!  Don't waste your money.  

If you read my post under Medications, Treatments, Therapies you will have 30 years of experience with these.  Feel free to email your questions if you need anything.

Larry

Also you will need to avoid triggers,,, for me triggers are Pepper, MSG, Alchohol, any form of barbiturate, peanuts, aged cheeses including sour cream to name the main ones.

i guess im different
a nasel canule is great @ 15 lpm up one nostrel suckin for all im worth. it makes things worse for just a minute but thats how you know its workin!
ive been a sufferer for yrs and had brain surgery in 2006 for this head pain issue. shockin my hypothalmus @ 3.5 volts
bp

Hi There, I've posted this on the message board but just in case you've missed it, here it is again. I suffer from cluster headaches, or rather, I did until I luckily consulted a Doctor who was himself a sufferer. He prescribed Pizotifen malate, which has the trade name Sanomigran. Although I still have the episodes every 3 years lasting about 10 weeks, the pain is reduced to almost nothing. It's prescription only, but widely available. I hope it works for you too.
                                                                            Kennie

well i have a way for dealing with the pain. since i don't have the money for meds or even oxygen, i am forced to deal with the pain the best i can. over the years i have learned that most people hold there head and rock back and forth. and i have done that many times. but i have found that putting pressure on the temple or eye only made it more painful. so i try not to touch my head at all. i try to relax as much as possible. and it works great on kip 5's and under. maybe even a 6. but anything higher and it gets really hard to sit still. i hope nobody has to try this because everyone should have at least oxygen. good luck to all.

Hi  my father suffered from clusters but what helped him was imitrex but he took like 9 pills a day that was like 10 years ago and knock on wood he has not suffered since i know now you proly cant get that much at one time but maybe a doctor could get you a prescription

sorry hope i helped in some way

Your first post. Welcome to ch.com.

I'm totally speechless.

Just let it run its course.

Hmmmm....

I huff oxygen and in five minutes it's done. no dickin around needed.

           Potter

Greetings fellow Cluster Heads.
This is my 7th year dealing with the monster.  Always toward the beginning of spring.  This time however I spoke to my pharmacist and explained the symptoms prior to the attacks.  Probably more fortunate than most, my attacks come in the evening, once a day and always at the same time.  This year, at around 8.30pm. I had suffered 2 prior attacks the previous 2 nights. The chemist suggested I try an antihistamine as a preventative.  I took home a packet of Phenergan 25mg (active ingredient Promethazine hydrachloride) a medication usually used for hayfever sufferers.  I took 1 tab that night at 7.30pm an hour before the expected onset and another at 8.30pm when the attack usually comes.  The result......... I was a blathering fool, very drowsy ( but maybe that was also due to the wine I had consumed) but the upshot is that there was no attack that evening.  It has been 5 nights now and following the same procedure, I have managed to stay pain free.
To answer the anticipated questions.......YES I have been diagnosed as a Cluster Head........YES I understand that is early days yet, but for the time being it appears to be working........ NO I dont condone taking medication with alcohol, but I enjoy my wine.  YES I am not much use for anything else at night (much to my wife's disappointment) but for the time being I am pain free and that all I care about at this time.
I just hope it works for others
Best of luck Comrades.

I suffer more than 30 years. The key is to realise that the pain is caused from the enormus stress, that we dont even understand that we have. So the brain inside us feels that he is in danger and works like a car running to the limit of his speed without stopping. It's the blood that runs in our vains in maximum speed.
So put your head into the shower and let cool water to run at your head, at the suffering area, for at least 10 minutes.
that's all.

I'm 36 and have had clusters since I was in my early 20's. I have been to hell and back with these things and they are largely responsible for who and what I am. I'm old school and have been dealing with these things before anyone knew of any treatment methods...I had to figure things out on my own. I used to cycle every 6 months but as I grow older my periods of remission have lengthened to 3.5 years. Now through diet, Triptans, o2, and methods of relieving stress I life an almost comfortable life.  Stress is definitely a factor in a cycle returning...do what ever you can do to reduce stress! I have a comment to the people using energy drinks/coffee to abort a ch...I know caffeine works to get rid of  other types of migraines but I have never known it to work for clusters. Caffeine is my number two trigger, alcohol being my first. Unlike alcohol, caffeine doesn't trigger one soon but 1 can of soda will insure that I have several headaches the next day. My advice is to try a different method of abortion and avoid caffeine like the plague. Try it for a week...it may take that long to work it out of your system but I think you will find you will have far fewer headaches. Please if anyone has any questions I would be more than honored to try my best to help.    Ray

Hi I'm new to this I have only had clusters for the past 2 year's and they are  I get them two or three times in the year and they last 4 to 5 weeks at a time. I do not see a Doc of any kind for them any more I spent 4 weeks in the hospital still paying for it and when sent home was no better off. They put me on dopeamax cost $300.00 a month with ins. I quit taking it after 2 months it did not help it just made me stupid.
Now when I get them I just use a heating pad around my neck and head that helps a little but the pain god the pain it will put me down for 4 weeks at a time I can't eat I can't do any thing. This last time the pain was so bad and it was all day every day for 4 weeks that my body was so sore I could not even touch my hair. There was a nurse when I was in the hospital that gave me heat and told me to try and rest that was easy with all the good drugs. But this time I had to do it with out any thing lucky me the pain became so bad that my body or mind just shut down.
They only thing that helps me is the heating pad my soft blanket, no sound, no light of any kind or I will go through the roof and go nuts. I do my best to sleep when I can even if it's a few min. the more I can try and relax and rest the better off I am. The more I fight it ie walking, hitting my head just compounds the problem for me and besides it scares the crap out of my husband. I'm thankful I found this site because most people don't understand what clusters do to a person unless they have seen the pain one go's through with it. I am lucky because I have a friend that has seen me in pain and how I grab he walls and hold my head and yell out in pain. When my husband can't be with me because he has to work my friend will come and baby sit me just to make sure I don't hurt my self like banging my head on the wall or something. My Doc will give me something to help me sleep when I have the clusters it helps some for a little rest. I like reading these post and will check in to some of the things I read. I just got over an attack and I know another one is on its way I feel the stabbing pains and the sick feeling coming on. And  I do think stress is the trigger for me.

Hi I'm back on the site after many years. I have had ch for 25+ years. For many years they would arrive around 12/15 and the cycle would last 4 to 6 weeks. 8ish attacks daily. Ferocious. I had a buddy drive me to a all nite clinic on pch in Malibu 20 years ago and they tried a new drug , a shot of imitrex. Worked great 2-3 minutes I guess pain free. Of course that didn't stop the next one 2 hours later.
What has really saved me was discovering (on this site) 4=5 years ago the prednisone taper!!!
I am now 58 and have just begun my ch cycle a few days ago. I went to the er and they could tell that I knew what I was talking about (Ithink it helps alot if you are not asking for narcotics) and they treated me exactly the way I asked. I got an imitrex shot and a prescription for prednisone (60 mg the 1st 2 days then down 10 mg until gone with one refill)
Drs. hate prednisone! but I tell you my $10 prescription has kept me ch free for the last 2 days. I am a periodic so for me it's a no brainer, but the way I feel aboout it is: I can't think of anything I wouldn't take regardless of the side effects or anything that would stop the torture!!

New to the site and LOVING it. 

15 yrs of CH and never met anyone, including my docs that understood it.  I think I can manage my CH without meds, though I hit KIP10 frequently but I'm episodic about 3 times a year. 
My tricks are varied but the one I go to most often are chewing two asprin and packing them into my upper jaw to cover that pain, (as bad as my eye), and keeping two baseball caps soaked in water in the freezer at all times.
When it comes, I don my 50 mission cap and try to think of my biggest problem at the moment and try to solve it as the pain washes over me.
Can't say I've ever solved any problems, but it keeps me from pulling out my hair.
I'm experimenting with massive doses of vitamin/mineral supplements at the moment.  Will let you know how that works out.
My attacks are at 7:30PM, sometimes again at 10:30, almost never in REM.  REM Shadows wake me a few times and a cold compress on the temple and cheek seems to keep him at bay.
Hope this helps.

"I have a friend who..." uses START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Stopped 2 cycles in 2009 in the pre-CH shadow period and currently broke a cycle in progress or seriously degraded the pain enough that it is essentially over.  A little caffeine helps too.  Pot of good strong green tea in the morning and some more in the afternoon (or coffee, nodoz), along with the cluster buster technique and things have been smooth sailing during this cycle for my friend (if you know what I mean). 

Psilocybes have been working for me, other natural ingredients have worked for others too.  Some cautions apply so check out all the info thoroughly and head all cautions/instructions. 

hi,
i am 35 and have suffering from CH for past 12 years. subcutaneous sumatriptan works best for me but off late i have noticed that these attacks rebound with more intensity after using sumatriptan... i have had 3 attacks per day for past few days and unable to break the cycle.. if attacks are mild compressing the superficial artery in the temple reduces the intensity  of pain....

I have suffered from ch for the last 12 years, generally getting the standard 6-8 wk cluster/year with multiple attacks each day.  Throughout the last 12 years I have tried a lot of methods to avoid and/or treat these things with no avail until this year.   My cycle begain this past 2-16-2010 and since then I have had multiple (2-4) attacks per day.  The good news is that I have been able to abort every single attack (knock on wood) by using the power of capsaicinoids.  At the first hint of an attack I swab the inside of BOTH nostriles with dried habanero powder.  Sounds crazy but it works and the use of capsaicinoids (chemicals responsible for peppers heat) is known in the peer reviewed literature (I will follow-up with the reference).   

Hi, I've suffered Cluster Headaches for around 13 years now. They come once a year during Spring and last about a week. I feel bruised for another week and then they are gone until next year. I get them about three or four times a day, worse at night and early morning. I've tried just about everything to get rid of them including the more exotic remedies. This year on day two I decided to try something I previously thought might make them worse. Cannabis. I know that its illegal but frankly I would have tried the dried and powdered teeth of an endangered white mountain lion if I thought it would do any good. Anyhow, I woke with a very bad headache that I knew was about to get unbearable within 10 minutes. I dont know why, but I decided to try eating just a tiny bit of cannabis resin. I chewed thoroughly and swallowed with water before lying down to see what happened. Within 10 minutes my headache started to ease. Withing 20 minutes I was able to get out of bed. And half and hour later my headache was just a vague shadow. I was okay until later that evening when it started to return. I administered the same treatment and got the same results. The following morning my headache was less intense than expected (perhaps thanks to a decent nights sleep) but again, I eat a small amount of cannabis resin and settled back to see if my previous results had been a fluke. Sure enough, I was out of bed and happy as a pig in mud for the rest of the day. And even better, that was the last of my headaches this time. After only two days! It seems that I broke the cycle and Im a very happy chappie let me tell you. The amount ingested was just a tiny bite (less than quarter of the amount you might use in a joint). Okay, I felt just a little stoned for an hour afterwards but no other side effects. I cant promise this is going to work for you guys but I did some research shortly after this years episode and found that it has worked for someone else too. Anyway, I'd just like to say that I feel for each and every one of you. Good luck, Paul.

ClusterFcUK wrote on Apr 20^th, 2010 at 7:40pm:

Hi, I've suffered Cluster Headaches for around 13 years now. They come once a year during Spring and last about a week. I feel bruised for another week and then they are gone until next year. I get them about three or four times a day, worse at night and early morning. I've tried just about everything to get rid of them including the more exotic remedies. This year on day two I decided to try something I previously thought might make them worse. Cannabis. I know that its illegal but frankly I would have tried the dried and powdered teeth of an endangered white mountain lion if I thought it would do any good. Anyhow, I woke with a very bad headache that I knew was about to get unbearable within 10 minutes. I dont know why, but I decided to try eating just a tiny bit of cannabis resin. I chewed thoroughly and swallowed with water before lying down to see what happened. Within 10 minutes my headache started to ease. Withing 20 minutes I was able to get out of bed. And half and hour later my headache was just a vague shadow. I was okay until later that evening when it started to return. I administered the same treatment and got the same results. The following morning my headache was less intense than expected (perhaps thanks to a decent nights sleep) but again, I eat a small amount of cannabis resin and settled back to see if my previous results had been a fluke. Sure enough, I was out of bed and happy as a pig in mud for the rest of the day. And even better, that was the last of my headaches this time. After only two days! It seems that I broke the cycle and Im a very happy chappie let me tell you. The amount ingested was just a tiny bite (less than quarter of the amount you might use in a joint). Okay, I felt just a little stoned for an hour afterwards but no other side effects. I cant promise this is going to work for you guys but I did some research shortly after this years episode and found that it has worked for someone else too. Anyway, I'd just like to say that I feel for each and every one of you. Good luck, Paul.

    I can kill one in five minutes with oxygen.  Stop playing around.

             Potter

I am taking Tramadol HCL 50 mg. It has not prevented them all night but can get me to early in the morning if I take one when I go to bed it seems to lessen the severity but the pain still wakes me up after a few hours. Then when  I take another after the pain wakes me up it seems to provide faster relief and the pain was not as severe. So far it has been a godsend! Tonight I forgot to take one and so I am up. I will not make that mistake again. I am going to ask for Oxygen tomorrow to see if that along with the Tramadol will work even better together. I also spend a lot of time walking around outside when the pain hits and that seems to help as well. I guess I have been lucky. I am 58 Y.O. and this is my second bout with these. First time I did not know what was going on and at least I am learning how to recognize and learn from the episodes. I have broken my back, had skydiving, motorcycle and about every other kind of bodily injury possible including two major heart attacks and NOTHING compares to this pain! I wish these on no one. They are a curse! Hope this helps.

What has worked for me with the night time headaches is to take 1/2 of a 50 mg. Imitrex pill at bed time and this will usually gets me 5 to 6 hours of sleep. I know you are not suppose to take it as a preventative but it works in my situation.

I read that someone could not afford oxygen, well they might want to try an oxygen tank for welding. It is much cheaper and the contents I was told are the exact same gas, it's the cleanliness of the tank that is the issue. When I have run out of the small bottle that I keep in my car I am fortunate to work at a facility with welding oxygen and just take deep shots straight from the valve than shut it off, exhale than open the valve and inhale. I repeat this for about 2 minutes and off I go. No one is any the wiser and I can go back on the floor like nothing happened.

I remember when I talked my poor husband into trying sinus buster.  It did nothing for him. I felt so bad at the time, but we laugh about it now. . .we've tried so many things over the years to help him, and that was one of the more futile tries.  We feel like we are managing this cycle better than ever.  Every cycle gets a little more manageable, because of wonderful people like you who give us hope and new things to try.  

I can not imagine suffering these without relief. I had a severely fractured vertebrae in my back and dealt with that as well as skydiving accidents, two heart attacks and this is orders of magnitude worse. Here is what I do. Someone said antihistamines and they do seem to help but take them starting well before the expected attack. If you feel an attack coming on after taking the antihistamines WALK fast as you can long as you can. That seemed to help also. I have been to the ER  for O2 three times in two weeks after hours of constant pain. The O2 definitely provided quick relief. I am convinced taking Hydrocodone and Tramadol after the pain started just made it last longer. Finally what seemed to finally end the cycle was a prescription for Amitriptyline 50 mg every evening at the same time. There may be other calcium channel blockers that also work but it is what I take. I had to ask my dr. to prescribe these by the way. Cluster Headaches are so rare I do not believe DR's are up to speed on them always so don't be shy! Anyway so far pain free but seem to have residual headaches that would bother me as to what was causing them but I had a CT scan that was clear. Hope this helps.

I think I have found my cure.  It's as simple as running my head under ice cold water at the first signs of ch, it has even stopped it while full-blown.
This has stopped the last 4 attacks in 2 days.
So now all I have to do is carry a hose or a huge bucket of ice water with me at all times!! lol

Jan wrote on Jun 15^th, 2010 at 11:37am:

I think I have found my cure.  It's as simple as running my head under ice cold water at the first signs of ch, it has even stopped it while full-blown. This has stopped the last 4 attacks in 2 days. So now all I have to do is carry a hose or a huge bucket of ice water with me at all times!! lol

Not a cure. A treatment.

To help avoid those nasty night time hits you can take a Melatonin about 1 hour before sleep if that doesn't work for you as it didn't for me (but it does for many others) you can try an over the counter allergy pill such as Zyrtec (generic form is Cetirizine) to help avoid a night time hit.  This has helped me avoid many a beastly night.

**Make sure you check with your doctor about allergy med. interactions with your CH prevents first.


Edited to add another tip I'd forgotten to include. ;D

P.S.

Feel a milder CH hit coming on ? 
Try Deep Breathing, I Mean REALLY DEEP BREATHING.  Breath in Deep and exhale all you can and repeat. Make sure you are sitting up straight or standing up straight when you do this. 

This helped to post-pone or avoid a few CH hits.  Helps when you are putting in air conditioners with help from your son and you are in no position to go running for O2 or Trex.  :o

Hi Everyone:) My fiance suffers from Cluster Headaches - he has done so for the last 8 years! and was only diagnosed properly last week with the 2nd neurosurgeon that he has seen. He used to get them once a year around April / May and for a few weeks - all of sudden he has them now again in August and has had them every day for the last 2 weeks which we know know means he is chronic!

We have been so frustrated and the 'Beast' is starting to take it's toll on our relationship, finances and outlook on life - we are getting married next month and this is supposed to be a happy time for us - but it's a nightmare! Poor Ash is suffering so badly and we are so frustrated that nothing seems to help him - I feel so helpless and he feels like a burden - it's terrible!

He has been on Medrol (we are in South Africa) which is the cortisone based med - it helps in intense doses but he can't take it indefinitely, he has also tried Sibelium - calcium channel blocker & Maxalt which haven't helped AT ALL! The only thing that does help immediately are the Imigran injections which he has learnt to divide one injection into two to save money - problem is is that he's now getting at least 2 or three headaches a day and his poor arm is bruised and sore from injecting plus it's not good for him as he has high blood pressure and the Imigran raises it. The doc is now going to give him a higher dose of Medrol 16mg which he says should help with this chronic period. He has also tried 100 pure Oxygen at 8l per minute and it didn't help either.

He also went to a chiro today who put those deep tissue massage machines on him and we are going back on Mon & Fri next week for more treatments and to test over a 2 week period if it helps at all. Ash being a fireman does put alot of strain on his spine and back and the chiro will help to alleviate some pain for him we hope!!!

In any case it is wonderful to know  (and he is relieved) to know that he is not the only one and that others understand his crippling pain. Thank you all for your advice and good luck to you all - my heart bleeds for you  :-[

Will keep you posted! Gaylene & Ash - KZN - South Africa

I stopped using the imitrex years ago due to the rebound headaches that often accompanied the imitrex dose. Also in my experience I found that the imitrex also prolonged the duration of the migraines. On the imitrex I would have episodes of CH for 6-8 weeks at a time. Once I got off the imitrex the duration went down to 2-3 weeks a year. To date the most effective thing I have found to work is bronkaid tablets containing ephedrine. They are relatively cheap and tend to knock the CH down rather quickly.

well, this is my first time on this site..i didn't spend much time navigating...but i hope that this msg would help.
in short, i've been suffering from episodic cluster attacks for the past 10 years....4-6 weeks/year....1-2hrs/day.
i've tried 'solpadeine' in the past few years (a combination of paracetamol, caffeine & codein phosphate)...it works only as a treatment (not for prevention)....it works sometimes and sometimes not.....
after my attacks started this year (mid september) i tried drinking nescafe the first thing each morning, then in mid-day in an attempt to increase the caffeine concentration in my blood....
surprisingly...the attacks started skipping days instead of coming everyday like usually.....and when they come, they would stay for a shorter duration (45 minutes instead of 90)..... so, in short, the attacks became less frequent....infact...yesterday and today where attack-free.
i hope u get this msg whoever u r....and i hope that u can help me spread it..who knows..maybe this can help u and others to get relieved from this unbearable pain that i never thought that something like it can exist.

mostafa wrote on Oct 11^th, 2010 at 5:29pm:

well, this is my first time on this site..i didn't spend much time navigating...but i hope that this msg would help. in short, i've been suffering from episodic cluster attacks for the past 10 years....4-6 weeks/year....1-2hrs/day. i've tried 'solpadeine' in the past few years (a combination of paracetamol, caffeine & codein phosphate)...it works only as a treatment (not for prevention)....it works sometimes and sometimes not..... after my attacks started this year (mid september) i tried drinking nescafe the first thing each morning, then in mid-day in an attempt to increase the caffeine concentration in my blood.... surprisingly...the attacks started skipping days instead of coming everyday like usually.....and when they come, they would stay for a shorter duration (45 minutes instead of 90)..... so, in short, the attacks became less frequent....infact...yesterday and today where attack-free. i hope u get this msg whoever u r....and i hope that u can help me spread it..who knows..maybe this can help u and others to get relieved from this unbearable pain that i never thought that something like it can exist.

     Not a treatment that I would recommend.  You need to peruse this site a bit more.

               Potter

Hi GayleneD,

You also need to follow Potter's suggestion to peruse this site a bit more, particularly the oxygen info on the 1st page of "Medications, Treatments, Therapies." Many, actually most, sufferers get their best relief from O2; 8L/min isn't nearly enough though. If the next Medrol dose-pack, at the new higher dosage doesn't work, stop using it; prednisone is really hard on your body. Congratulations on your coming marriage.

Hi mostafa,

Many here find high-caffeine energy drinks (e.g., Red Bull) to be very effective, far more so than coffee. You should also read the O2 information suggested to GayleneD. Please don't use the narcotics; they're almost universally ineffective in CH treatment and so dangerous.

If either of you, after trying the suggestions on this website, are unable to find relief, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Many are finding relief using their methods. A good introduction is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Ron

bonkers wrote on Oct 11^th, 2010 at 9:11pm:

Hi GayleneD, You also need to follow Potter's suggestion to peruse this site a bit more, particularly the oxygen info on the 1st page of "Medications, Treatments, Therapies." Many, actually most, sufferers get their best relief from O2; 8L/min isn't nearly enough though. If the next Medrol dose-pack, at the new higher dosage doesn't work, stop using it; prednisone is really hard on your body. Congratulations on your coming marriage. Hi mostafa, Many here find high-caffeine energy drinks (e.g., Red Bull) to be very effective, far more so than coffee. You should also read the O2 information suggested to GayleneD. Please don't use the narcotics; they're almost universally ineffective in CH treatment and so dangerous. If either of you, after trying the suggestions on this website, are unable to find relief, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Many are finding relief using their methods. A good introduction is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Ron

Thx so much for the tips

Inrelation to the LSD treatment by Clusterbusters which is the eating of dry mushroom, the this appear in a different form such as capsule? If yes, where can I get I get it?

I tried butterbur 3 nights ago, in the middle of a 6 week 9/10 kip scale episode.

The last 3 nights have been a 4 at worst.  The relief to go from a nightly off the chart CH to a 4...

Still apprehensive to believe an herb can make such a difference after 25 years, and not finding anyone else who has tried it, but I can't help but to admit the undeniable relief. 

i've been on maxalife fish oil capsules to alleviate symptoms. so far the intensity and frequency of my headaches have lessened. :)

OMG! thanks for the tip on caffiene you saved me a trip to the ER! the attack was less than 15 minutes! wish i would have found this site last night and i had a attack last over 7 hours on and off! resulting in a trip to the ER! cant wait for that bill as i have no insurance.

I have just come out of a 3month plus period of the most vic iouse attacks i have ever had! I like many of you other guys
and gals tried O2 and i have mixed feelings about how effective it is. I found that I had to be on the  O2 at the first sign of a CH for it to work -once the headache had started it was useless The neurologist told me not to use it for more than 15 minuets as if it has not worked by then it wasn't going to and would would make the headache worse.

I like alot of people here find an ice pack helpfull and always have one in the freezer I also keep away from bright light  as i have discovered harsh light trigers an attack and so wear very dark glasses Ok so I look like cousin IT of the Adams Family but it helps.
many people on this site are talking about imitrex (known
as Imigran in Europe) my neurologist told me not to over use it as their is growing evidence that it could turn the condition chronic-anyone else heard anything? I would love to hear from you

Quote:

...and would would make the headache worse.

I've never found this to be the case. From time to time it didn't help - usually my fault for not getting on it soon enough. But it sounds to me like your neurologist knows not of which he speaks.

gezz wrote on Jul 30^th, 2011 at 9:15pm:

I like many of you other guys and gals tried O2 and i have mixed feelings about how effective it is.

Are you using a non-rebreather mask?

What flow rate?

Have you read the oxygen info on the left?

Using it at the start of an attack I can abort a CH in about 6 minutes using a non-rebreather mask and a flow rate of 25lpm. If I use 15lpm it's almost twice as slow.

This is my first time on this website.  I have suffered with these for about 25 years and for me, the relief has come through exercise.  At the first sign of the attack, I go for a run if possible.  As my pulse increases and I start to get out of breath, the pain starts to ease.  Within 5 minutes of the onset it is completely gone.  If I can't run, I will do 25 to 40 "squat-thrusts".  This is usually enough to increase my pulse and breathing adequately to bring about an end to the pain.  I am sure this won't work for everyone, but I honestly don't know how I would have coped with the pain over the years without this relief.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If running helps a little bit....read this link! I used to go for an all out 30 minute sprint when I felt an attack coming on. Wouldn't kill the attack but would ramp it down several clicks. Now I crank on the oxygen, in 6-8 minutes I'm pain free!

Do you have any other meds you take while on cycle? A prevent like Verapamil, Lithium or Topomax? Imitrex injectables or nasal sprays? Are you working with a headache specialist neuro? We've seen the best results from going that route.

Welcome to the board, hoping we can help you skip some pain! ;)

Joe

Mike NZ wrote on Jul 31^st, 2011 at 12:54am:

gezz wrote on Jul 30th, 2011 at 9:15pm: I like many of you other guys and gals tried O2 and i have mixed feelings about how effective it is. Are you using a non-rebreather mask? What flow rate? Have you read the oxygen info on the left? Using it at the start of an attack I can abort a CH in about 6 minutes using a non-rebreather mask and a flow rate of 25lpm. If I use 15lpm it's almost twice as slow.

yes I am usinng a none rebreather mask and always use O2 at 15 ltrs per min, as I say sometimes it works while other  times it has no effect at all- but we are all different and what works for some wont for others

Brew wrote on Jul 30^th, 2011 at 9:21pm:

Quote: ...and would would make the headache worse. I've never found this to be the case. From time to time it didn't help - usually my fault for not getting on it soon enough. But it sounds to me like your neurologist knows not of which he speaks.

Well the don't use it for more than 15 mins advice was not only from my neurologist but also the technician who said the same amongst the other safety advice like don't smoke for 15 minuets after using oxygen. I remember on one occasion when I had used my two permitted injections and all I had was the O2 it didn't work. I remember that day well as I had 8 attacks in 24 hours each one was violent and I was screaming in pain.

I have had these evil things for 16 years and two of them have been pain free. 4 years ago I went to an acupuncturist to see what he could do and he did the normal multiple  needles in the face routine which had little effect. I went back the next day and this time he gave me 1cc shots of Vitamin E to 2 spots along the nerve that runs along the eyebrow and 2 more shots to the nerve in the temple...I didn't have the headaches for the rest of the year. The next 3 years I had the headaches but they weren't too bad and then this year I went back and had the same thing done and so far no headaches. My headaches start between August and September and they last 3 months and I usually get 3 everyday and they each last 3 hours. I do not know if this will work for everyone but it has been a Godsend for me. Not all acupuncturists do this because they need the MD degree so see if your doctor will do it. I still use O2 as a back up and it has been excellent at relieving the pain if caught quick enough. If this works for anyone I would like to know so I can pass it along to others.

I have been looking for the O2 information and the post says "Check out the yellow "oxygen info" button on the menu bar to the left!"
I don't see a menu bar on the left.  Please help.

I have been looking for the O2 information and the post says "Check out the yellow "oxygen info" button on the menu bar to the left!"
I don't see a menu bar on the left.  Please help.

The link is - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you went directly to the forums then you won't see the links on the left, however going in via the START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE URL you'll always see it.

Read up and ask questions...

Hi, just wanted to share my experience with anyone who reads this message, and this was the only way I was able to - Hope I'm on the right page.

I've been a sufferer for more than 12 years now. My latest episodes just started recently 2 days ago, after a 2 year pain free period! (My personal longest - thought i was cured...). Anyway, what I wanted to say that during those 12 years, I've learned to adapt especially the last 6 years. The first 6, it's exactly as everyone described in their posts, the pain is so strong, you wish to die, crack your head against the wall, stay in dark places, never go out of the house, and chew up on the pain killers like candy... I tried everything, but it seems year on year, the episodes were becoming longer and deeper...

Just up until 6 years, I was experiencing a cluster during work, and had a very important meeting which I couldn't get out off.. imagine that, experiencing a cluster while sitting down and listening to people without moving. Anyway, I excused my self to the bathroom to see what I can do, and started banging my head against the wall and shaking, and suddenly the pain was vanishing slowly, or better yet, the piercing feeling above my eye and side of my head was being diverted, and I noticed that it was because I was moving my head in a certain pattern. I kept on doing this for around 5 min, and believe it or not I was pain free... So throughout these 6 years I was using this exercise and developed it to suit me, and believe me it has made my life easier. 8 out of 10 times, I can abort a cluster within 10-20 min and during that exercise I'm not feeling the piercing pain, just a bit psychological pain knowing the cluster and some annoyance, but who would care knowing that the cluster would end after :)

A sufferer knows when a cluster is about to hit, so when you get that feeling, just wait a bit until it's about to peak, and then what you do is start moving your head from left to right quickly and non-stop (and not just moving it, it has to be in a snappy way and feel it, you have to feel your neck moving with it)... This exercise normally help the cluster to peak faster, better than waiting for it, and then you feel it. So I keep going with the exercise, and moving my body as well to a song or something to divert cause we all know that helps. A dark place helps better. I always try to make a pleasant experience out of this regardless of how painful it is, and set my mind positively like I'm on a mission, fighting and dancing the cluster away. During the exercise, which is the best thing about it, you always manage to get over the piercing pain which is the best part of it. I still feel pain during and I keep going and going, it's like having a fight with the cluster, until I get over it. Many times I get frustrated and depressed and tired and want to stop, but I never gave up on this exercise, and in the end I always manage with it to end my pain. It's all about patience and fighting for relief... (personally I was living on pain killers and meds, and oxygen wasn't always availalbe, this was my personal savior).
It's been 6 years now, and knowing this exercise always made me feel better, like having a weapon ready when the time comes. (I do it wherever possible: Bathroom is where I normally end up when outside the house, the first one I can get my hands on ;) .. )
As I said, I started having the episodes 2 nights ago, non-stop up to 5 times a sleep: Always woke up, went in my dark living room, started the exercise 20 min, back to sleep, till the next episode....

Now this is my personal experience, and so far it has made my life much better... So for anyone who reads this, trust me it's worth a shot, and I really hope it works for you in a way or another. Personally I've taken a lot of shots on whatever I can get my hands on and was advised for easing the pain. We all know that the pain is to freaky not to try anything that is available. In my advised exercise, the most important thing is not to give up, cause at the end you will beat it.

I really hope my experience would help in any way, cause probably we are one of the fewest people on earth who know the true meaning of pain....

Kojak wrote on Nov 6^th, 2011 at 12:20pm:

Hi, just wanted to share my experience with anyone who reads this message, and this was the only way I was able to - Hope I'm on the right page. I've been a sufferer for more than 12 years now. My latest episodes just started recently 2 days ago, after a 2 year pain free period! (My personal longest - thought i was cured...). Anyway, what I wanted to say that during those 12 years, I've learned to adapt especially the last 6 years. The first 6, it's exactly as everyone described in their posts, the pain is so strong, you wish to die, crack your head against the wall, stay in dark places, never go out of the house, and chew up on the pain killers like candy... I tried everything, but it seems year on year, the episodes were becoming longer and deeper... Just up until 6 years, I was experiencing a cluster during work, and had a very important meeting which I couldn't get out off.. imagine that, experiencing a cluster while sitting down and listening to people without moving. Anyway, I excused my self to the bathroom to see what I can do, and started banging my head against the wall and shaking, and suddenly the pain was vanishing slowly, or better yet, the piercing feeling above my eye and side of my head was being diverted, and I noticed that it was because I was moving my head in a certain pattern. I kept on doing this for around 5 min, and believe it or not I was pain free... So throughout these 6 years I was using this exercise and developed it to suit me, and believe me it has made my life easier. 8 out of 10 times, I can abort a cluster within 10-20 min and during that exercise I'm not feeling the piercing pain, just a bit psychological pain knowing the cluster and some annoyance, but who would care knowing that the cluster would end after :) A sufferer knows when a cluster is about to hit, so when you get that feeling, just wait a bit until it's about to peak, and then what you do is start moving your head from left to right quickly and non-stop (and not just moving it, it has to be in a snappy way and feel it, you have to feel your neck moving with it)... This exercise normally help the cluster to peak faster, better than waiting for it, and then you feel it. So I keep going with the exercise, and moving my body as well to a song or something to divert cause we all know that helps. A dark place helps better. I always try to make a pleasant experience out of this regardless of how painful it is, and set my mind positively like I'm on a mission, fighting and dancing the cluster away. During the exercise, which is the best thing about it, you always manage to get over the piercing pain which is the best part of it. I still feel pain during and I keep going and going, it's like having a fight with the cluster, until I get over it. Many times I get frustrated and depressed and tired and want to stop, but I never gave up on this exercise, and in the end I always manage with it to end my pain. It's all about patience and fighting for relief... (personally I was living on pain killers and meds, and oxygen wasn't always availalbe, this was my personal savior). It's been 6 years now, and knowing this exercise always made me feel better, like having a weapon ready when the time comes. (I do it wherever possible: Bathroom is where I normally end up when outside the house, the first one I can get my hands on ;) .. ) As I said, I started having the episodes 2 nights ago, non-stop up to 5 times a sleep: Always woke up, went in my dark living room, started the exercise 20 min, back to sleep, till the next episode.... Now this is my personal experience, and so far it has made my life much better... So for anyone who reads this, trust me it's worth a shot, and I really hope it works for you in a way or another. Personally I've taken a lot of shots on whatever I can get my hands on and was advised for easing the pain. We all know that the pain is to freaky not to try anything that is available. In my advised exercise, the most important thing is not to give up, cause at the end you will beat it. I really hope my experience would help in any way, cause probably we are one of the fewest people on earth who know the true meaning of pain....

You've been a member for over a thousand days,  you've made one post and this is your way of coping?

   Stick around and get educated.  There are way better ways to gain relief.  Oxygen in particular.

                 Potter
       

Cluster Headaches is not all about education Potter. Everyone has his own way of coping. Been a sufferer long enough to try everything, and this is what worked out for me so far. Just sharing my experience for people who might find it useful, at least until Bob Wold makes it for all of us.

Education is the key Kojak.  You say you eat pain meds like candy and that is counter productive.  How were you administered Oxygen and at what flow rate?

            Potter

Kojak wrote on Nov 6^th, 2011 at 6:54pm:

Cluster Headaches is not all about education Potter. Everyone has his own way of coping. Been a sufferer long enough to try everything, and this is what worked out for me so far. Just sharing my experience for people who might find it useful, at least until Bob Wold makes it for all of us.

Kojak,

That's wonderful you've found something that works for you, hope it continues to be of benefit aborting your attacks by the DRAGON.

However, treatment of CH's truly IS all about education.  Afterall, why do you visit this website?  Education! 

On a note of education....pain meds are COUNTER-PRODUCTIVE for effective CH treatment!

Wishing you PFDAN!

Thanks for the replies, it's just that this new cycle is a bit too tough, I'm a bit jumpy (Attacks mainly at night and hourly, never had that before in my life). Oxygen at 15 lpm sometimes does the job but is not reliable that's why I changed to other methods, and I'm not going for any injections or any of that sort of medication cause I've had enough of it. (And headbanging is not always an option nightime) So quick question:

Has any of you tried RUNNING to prevent or abort a cluster!! My new trial and here are my results:

Documented for the past 5 days, every time I feel the hit coming or wake up at the peak of one, I jumped on my treadmill, put speed on 5.5 or 6.5 km/hr, breath systematically, and the beast is down in less than 10 min!!!
100 % success. 15 out of 15 hits and counting. It's almost 8 am here, and just broke one down and thought I'd share.

I really would appreciate your comments on that.

Cheers

Getting rid of the co2 buildup by increased o2 is no doubt the best and most natural way to abort an attack.

o2 therapy hyperventilating with a NRB mask at flow rates of 25--40 lpm would abort faster than your running, but whatever works for you, fantastic you found something ;)

Hi to everyone,
This is my first post since joining the site after my last attack but thankfully ive now had about 2 weeks of PFDAN after suffering for nearly a year and finally being diagnosed about 3 months ago. My attacks would vary from 2-6 hours long and would generally be a few times a week.
I was put onto several different meds to help but found O2 to be the fastest acting remedy. This was mainly due to frequent a+e visits.
Since then i have been prescribed O2 for the home and have been on Pizotifen for about a month.

I feel the Pizotifen has been the most helpful preventative for me once i had been on it for about 3 weeks and hope this is helpful for anyone else.

Despite not having an attack since joining the site I found this site very helpful for education.

Welcome to the board Dragon, glad you found us. Do keep reading like crazy. The more back up and secondary plans you have for treating the beast, the better. his nature is to morph, what works this cycle may not work next time.

Joe

Thanks for the welcome Joe.

As for back up plans i try my best.
i am on the Pizotifen as a preventative treatment, i follow the water water water theory at the same time and i have the O2 cannisters as a final resort.

Ive still been having PFDAN so im sticking with what works for now and am so thankful for the site for support as well as the support of my Dr (who actually understands Cluster headaches) I try not to think about the morphing ability of the beast although i know this is a possibility. Taking each day as it comes and having a positive attitude to the meds.

I guess quitting smoking has helped too. The more O2 in my system the better i am so inhaling toxins is counterproductive. I was a long time cannabis smoker and have found it rediculously easy to quit by simply not buying any. Cigarettes are the next to go but that is harder to kick.

Heres hoping for PFDAN to all.

Mrs. Deej...I am new to this sight and I don't know where I should put this question but...it's a biggy...I'm directing it TOWARDS you...but I'm sure that there are a lot of other people with the same problem or some valuable advice!
I noticed in your profile picture that you have at least one child...I am a new mom and prior to getting married I always said that I'd "never have kids" because I couldn't fathom how I would ever cope with one of these monsters while catering to the needs of another... Well, I met a wonderful man with a young daughter and got married (she was old enough to semi-fend for herself...8) then I did what sometimes seems (when I'm caught up in one of my episodes) like a selfish thing...I had a baby...she's 10 months now and my question to you is...HOW DO YOU DO IT ALL!?!? I'm a SAHM but when these things strike, no laundry gets done, folded, dishes don't get done...basically, my house looks like its turned into an episode of hoarders gone horribly wrong...The depression is bad enough because my poor baby has to be condemned to her pack-n-play (baby jail) and I feel horrible because I know that sometimes it's scary for my step-daughter (now 10) to watch...then the house goes to pot and pancakes are on the menu every night for dinner (because it's all i can manage..)...I almost feel like....ok, not almost...I do feel like I am the worst thing that could happen to this family...my wonderful husband is increadibly supportive but I still feel like I'm holding him back...like he should go find someone better (i.e. anyone that doesn't experience these things would be an improvement...) anyways, I saw that you have a baby and so you must have some experience juggling the horror headaches and a family...I need help and/or "secrets" from you or anyone else that can help. Thank you so much in advance...I'm sorry that I'm sure I put this in the wrong section.
Elise

Mrs Deej,
I have suffered from Cluster Headaches for the past 35 years.  About 3 -4 yrs ago I started taking 5000 IU's Vit D3 to boost my immune system in case I got the Swine Flu. I tested my blood levels of 25(OH)D to be safe. Blood level has hovered around 65 ng/dl since that time.   Unexpectedly, I noticed that my Cluster Headache episodes stopped altogether.  I am now about 3 years overdue for an episode compared with the previous 35 years when they have always arrived on approximate schedule.  I also happened to be taking some fish oil, krill, zinc, and Vit K2 and occasional magnesium, but I always took them before and still got clusters.  It was only when I added high dose of D3 that my Cluster episodes stopped.  I have recently read a couple of Headache journal articles that have said D3 is helping people with Clusters, migraines and Tension headaches. It has a role in function of the hypothalamus that is known to malfunction in cluster sufferers. Also, clusters occur more often in fall, winter and early spring when we get the least sunlight to make our own Vit D.  So, I think this is a must for all cluster headache sufferers to get D level checked and take it up to the 60 - 90 ng/ml level as recommended treatment for headaches as well as boosting immune system.  If a headache episode does strike, Oxygen is my first weapon.  Turn up flow rate so that you get 100% O2. Need to have mask with the bag that fills up.  You are breathing out of the bag.  The flow rate just keeps the bag filled.  Don't be afraid of it.  High dose (eg., 5 grams) Fish Oil also helps reduce inflammation and eases the severity.  I had some success with that before doing the Vit D.  And last I would say, don't ever give up. You just have to keep going until you get something that works for you.  It's out there.  You'll find it. Good Luck. All of you are always in my prayers. 

Jim

Hi Jim - PA

Take a look at this thread.

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It reaffirms what you say about Vit D, lot of reading but well worth it.

Cheers
Barry

HOMADE HOT/COLD PACKS

Hot/ cold packs that are flexible can be made by putting  dry rice, beans or lentils into an old sock and tying it off. microwave for a few min for hot and it will stay hot for quite a while. It works for cold too but you have to let the the whole thing dry out completely after use before refreezing. So several cold sock are a must as drying can take several hrs.

That all sounds great to me especially the o2, but what help me ,or i think helps me is wrapping a belt around my head , somewhat tight,and a pressure point on the back and side of the neck.

After my imitrex injection, I take a wet wash cloth, microwave it for15 sec and hold it to my neck(as hot as I can stand) on the side of the ch, I do this until the beast retreats. I don't find a cold compress helps me at all. I hope this advise helps some of my fellow ch SOLDIERS.  :)

I usually use 02, but if I am out of the house and cant get there I have found that slushies/ slurpees have helped, especially if you can get a brain freeze, once the brain freeze is gone so is the pain.

I have been useing disolveable alavert and seems to combat the episode rather well, but am open to new ideas..
also running warm/hot water over the effected side of the head.

Hello all from Australia,

New to the beast. Have been dealing with it for years but never understood it as cluster headaches and thought they were tensions headaches but they have recently upped the anty on me in both severity and frequency. So this site has been really helpful so thank you to the creator and everyone that has shared.

I have read through this whole thread and taken notes, an attack plan is born  ;).

Anyway, I get some relief with heat packs/hot showers which has been mentioned. However, I recently stared seeing an acupuncturist to try and resolve these attacks and he recommended putting my feet in a bucket of warm water. This has worked very well a couple of times now completely stopping an episode. This will be specific to my particular case as I believe it has something to do with increasing circulation but there must be some of you out there that it will also work for. I have also found that rubbing Tiger Balm into the affected side of the head on the neck up to the bottom of the head (all over those tense pressure point areas) can take some of the hit out of an episode.

Thanks everyone for all your tips. I have a nice trail and error list to use now as well as a lot of good information to help understand and deal with this.

Wishing you all the best,
Enilder

Hi there.  Found this site after doing some googling on CH's. 

Thankfully I do not get clusters as frequently as some here do. Usually two or three over a week or two, then they will go away for quite awhile.

I usually get mine overnight.  I will wake up in a full-fledged attack. I haven't gotten too used to spotting the early signs yet, except for the single stuffy nostril.

Anyway, when I do wake up with a death-wish inducing headache, I used to down any medicine that claimed to be a pain reliever (obviously to no avail).  The only thing that works for me is a long, HOT shower (hot as I can stand it). 

I go into the bathroom, absolutely no light, and turn on the shower.  I focus the shower stream directly where it hurts. Too the point where I can actually feel each individual spray hitting my head.  Weird.  And I just stand there and try to breathe as slow and as deeply as I can.  Then after the pain starts to subside, I will sit down and just let the hot water wash over me, continuing to breathe slow and deep. 

After about 20-30 minutes in the shower, the pain has subsided enough (and I've relaxed enough) to go back to sleep, and the pain is usually gone by morning.

I know that a lot of you guys have frequent CHs, so if you're a chronic sufferer, it may not work as well for you, but if you are just an episodic sufferer, this may work for you.

agreed. 5 years of hot steam showers before diagnosis

Just wanted to say the red bull, coffee, ice, jumping jacks and tobasco has helped. I took tips from everyone and combined them. Lol. Tastes gross and my tongue is raw but the headaches haven't lasted longer than 20 minutes. None have been kip 10, I've been managing to stop them at about 7 or 8 using all the tricks together. I also just started on d-3, fish oil and magnesium yesterday. Tears only once this cycle so far. I'm hoping I can maintain at this level til the end. Might be wishful thinking but I'm an optimist. Will try to get oxygen ASAP. Thank you everyone for your advice and things that work for you. Too bad we all didn't know this stuff years ago. It would have saved a lot of headaches, lol.

Wonderful mental image of you doing jumping jacks, with an ice pack on the temple, Red Bull in one hand, coffee in the other and snorting tobasco up your nose.

Since it works for you, great!

The D3 routine and oxygen should make it even better, but you've something that works until then.

Hi, i'm really sorry i am posting here cos i cant read everything to find the answer, i havent slept properly since Sunday with these headaches my eye hurts so much and i need to do something. I live in Italy and went to hospital to get some relief but they were useless and i dont know what to do... last time it happened they kept me in for six days and then released me saying it was cluster headaches but there is no cure... i suffered for 21 days with multiple headaches per day. 4-5 every 4-6 hours lasting for about 45minutes. I take zomig 5mg tablets for migraines but they do nothing... i tried everything but i don't want to take too much... does anyone know if valium or something like bromezapam will help?? i have already taken too many pain killers (not od but i dont want to take more) please please there is no doctor over here who will help me and i need a home remedy or something... please please help i am due for another in about an hour and i cant even sleep... anyone??

Chrislehr wrote on Jan 16^th, 2013 at 9:25am:

Hi, i'm really sorry i am posting here cos i cant read everything to find the answer, i havent slept properly since Sunday with these headaches my eye hurts so much and i need to do something. I live in Italy and went to hospital to get some relief but they were useless and i dont know what to do... last time it happened they kept me in for six days and then released me saying it was cluster headaches but there is no cure... i suffered for 21 days with multiple headaches per day. 4-5 every 4-6 hours lasting for about 45minutes. I take zomig 5mg tablets for migraines but they do nothing... i tried everything but i don't want to take too much... does anyone know if valium or something like bromezapam will help?? i have already taken too many pain killers (not od but i dont want to take more) please please there is no doctor over here who will help me and i need a home remedy or something... please please help i am due for another in about an hour and i cant even sleep... anyone??

For aborting individual attacks, hyperventilate with oxygen at the first sign of attack.

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To prevent further attacks, get on this regimen as soon as possible. It may take awhile to kick in (some respond in days, others months):

1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/day, DHA 240 mg/day)

2. Vitamin D3 - 10,000 IU/day

3. Calcium - 500 mg/day (calcium citrate preferred)

4. Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate)

5. Vitamin K - 120 mcg/day

6. Zinc - 10 mg/day

Something else which will help with a CH is to drink as quickly as possible an energy drink with taurine and caffeine, like Red Bull or Monster. It'll help cut the pain level and duration of the CH.

1) O2: 10 bags standing upright, 10 bags kneeling down, in both cases keeping the torso upright. Makes a big difference.

2) "Pulling" the neck muscle diagonally forward and down. This means, if your CH is on the right, you tilt your head forward and down slowly towards your heart, gradually increasing tension on the neck muscle more and more to as much as you can stand. On a handful of occasions this has killed an attack completely (rare), in most case it can buy you between 5-10 sec of pain free time. Over the course of a 30 min KIP 8 I am generally able to shave off a minute or two buy doing this repeatedly.

3) Staying cold. At the onset of an attack I try to reduce my body temp as quickly as possible and with all means available. Nothing to do with local application of ice pack though. I have been observed standing semi naked on the balcony in winter and within only a few mins the attack is done. Same vaso-constricting principle than O2.

4) PH-neutral diet during episodes/high cycles

5) Zomig tablets. Useless for timely abort but helpful for night attacks as short term prevent. One, when taken at  bed time, can get me 8-12 hours pain free sleep. In my experience should not take more than 1 every 24 hours if you want to maintain efficacy and avoid rebound. Not what it says on the box and check with Dr. but works well for me.

Ok, I have a tip.  This may sound a little silly or possibly crazy, but I really do this.  This strategy has evolved over time. 

My attacks are always over in 45 minutes or less.  So if I'm going to have an attack, I started setting the timer on my microwave for 45 minutes.  No matter what, I know that when that timer hits 0, it will be over.

When I did that though, I realized I'd look... 44:30... pace a bit... look again 44:22.  OK, time is going too slowly.

So then, I decided I needed to do things to make the time go faster.  I'd force myself to load clothes into the laundry.  40:15.  I'd go struggle through brushing my teeth (this one is particularly challenging!).  37:47.  Make the bed.  31:14.  Take out the trash.  25:15.  Etc.

It's become sort of a habit, and now I kind of see it as a challenge... my way to make the best of a bad situation and flip the bird at the beast.  All my housework gets done during an attack... I'm going to be dancing around anyway, might as well be doing something productive.  :P

Brew wrote on Jan 16^th, 2013 at 10:04am:

Chrislehr wrote on Jan 16th, 2013 at 9:25am: Hi, i'm really sorry i am posting here cos i cant read everything to find the answer, i havent slept properly since Sunday with these headaches my eye hurts so much and i need to do something. I live in Italy and went to hospital to get some relief but they were useless and i dont know what to do... last time it happened they kept me in for six days and then released me saying it was cluster headaches but there is no cure... i suffered for 21 days with multiple headaches per day. 4-5 every 4-6 hours lasting for about 45minutes. I take zomig 5mg tablets for migraines but they do nothing... i tried everything but i don't want to take too much... does anyone know if valium or something like bromezapam will help?? i have already taken too many pain killers (not od but i dont want to take more) please please there is no doctor over here who will help me and i need a home remedy or something... please please help i am due for another in about an hour and i cant even sleep... anyone?? For aborting individual attacks, hyperventilate with oxygen at the first sign of attack. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE To prevent further attacks, get on this regimen as soon as possible. It may take awhile to kick in (some respond in days, others months): 1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/day, DHA 240 mg/day) 2. Vitamin D3 - 10,000 IU/day 3. Calcium - 500 mg/day (calcium citrate preferred) 4. Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate) 5. Vitamin K - 120 mcg/day 6. Zinc - 10 mg/day

I started this (except for the calcium) at the same time I started taking Verapamil along with my Depakote and my CH have been gone for 3 weeks.  I really wish I knew which it was that actually resolved my 4 month stay in CH Hell, but sadly I'm not willing to risk stopping either. 

I will say this, though.  Almost every year since I've moved to Arizona (17 years now) I get horrible allergies from late Jan to early March.  This year - no allergy symptoms.  So I'm going to keep on with this plan regardless of CH symptoms for general health if nothing else!

Verapamil usually takes 2-3 weeks to take effect, so it seems the D3 is working for you.

Thanks, Shooky.  Talking to my Neurologist the plan is to taper off the Depakote and Verapamil in about 4 months, but I'll stay on the immune system regime.  We'll see what happens long term.

OK!  four years CH free, four years no cigs (Chantix) and now the shadows are back!  Tips:

Oxygen, Oxygen and Oxygen.  I've has episodic CH since the early 1980's.  Had eye doctors tell me it was optical and my current dentist tell me it was dental and a Neurologist who actually knows what CH is prescribe prednisone taper(I declined) and intranasal lidocaine---which hurts almost as much as the CH...but not quite.

Caffeine seems to help.  Vigorous exercise seems to help.  I've done a ton of midnight planting and digging during an attack.  And walked a million miles cursing.

BUT hyperventilation level Oxygen ALWAYS aborts for me.  If it doesn't work for you---keep trying and pay attention to what Batch has to say.  Wrong flow rate, wrong mask...my former vet tech's father suffered for TWO years thanks to IDIOTS giving him the wrong mask and regulator. DO NOT LET THIS HAPPEN!   If you get the O2 script---great!!! Then spend less than $60 for a mask setup and regulator and take responsibility for your own heath.

Perhaps, an antihistamine might be in order if there is a chance it is tied to seasonal allergies.

Perhaps a decongestant might be helpful.

Alternating warm and cold compresses over the trigeminal nerve local when all else fails or isn't available.

There are several herbal/supplement regimens that have promise---try them.  Just started D3 myself.

If Oxygen isn't working try again.  Do not be a victim!

If you smoke---quit.  Try Chantix unless you are suicidal. If you have bad dreams, under Chantix they will be 3D vivid and terrifying. If your dreams involve Umma Thurman in a "non-threatening" pose...you will love Chantix.  Do six months not three.

The people on this forum know more than "most" if not all doctors.

DO NOT go to the emergency room.  They will screw you up completely.

DO NOT TAKE traditional prescription pain killers (opiats, Oxy, Etc.).  They will make it worse.

DO NOT let some quack cut into you.  NEVER a good idea.

TAKE CHARGE!  Order you own regulator---25 lpm is mandatory minimum.  You can  find them on amazon.  Rather than WAIT for a prescription, BUY your O2 at a welding supply company, Tractor Supply, Northern Tool, Harbor Freight, etc.  You "lease" the tank and then pay a nominal fee to swap it out as needed.  BUY the BIGGEST tank you can physically manage (at least a 3)---and then a smaller  backup  (a 2) which you can take in the car with you. NEVER RUN OUT OF O2!

Keep some Taurine inclusive energy drinks around for emergencies. :D

DO NOT TELL the folks at the welding supply store WHY you want O2!!!!  Tell them you breed exotic Koi and need O2 to help them "get in the mood".

For me, the sound of ice cubes is like nails on a chalkboard. I go to bed with a frozen solid bottle of water wrapped in a tea towel. When I wake up in the night, it's already there waiting. I've found that I can apply pressure and cold at the same time, and it is useable through the morning. The only thing that seems to work for dulling the pain is Goody's headache powders. They don't do much, but it's something until I get to the neuro (yay, tomorrow!!), all the things I've tried with my regular doc haven't panned out. Crossing fingers that the new one is familiar with CH.

hey guys i joined this like last week and i been doing alot of research and i just started using fish oils i reallllly recommend u guys try this i havent been to a neuroligist yet i was put on verapimil 2 years ago and this last month or 2 they been coming heavier than ever and thats when i took matter in my own hand and started searching i take a fish oil pearl capsule 1400 n its realllly beeen workin great for a week so far i just hope it keeeps up please try it and feel free to hit me up and telll me any other tips that work or ask me for tips my email is yas44izzy@gmail.com my face book name is yasser ismail gaber add me n ask ne thing i know how bad this beat is and i would love to share whats been helping me cuz no one should have to go thru this

Hi Chrislehr
There is no cure, but there is plenty you can do to control the pain.I have just started the D3 regime, and it seems to be working so far. I have never been offered oxygen so can't comment, but it seems to work well for every one else. Up till now though, I have found sumatriptan (imitrex) injections are my magic bullet and the only thing that works. Total relief in 5 - 7 minutes. Forget pain killers - my neurologist told me that even morphine won't work on CH.
Read every single post on this site, and you'll find lots of suggestions, but the D3 and oxygen are favourites.
Don't be sorry for coming here. That's what we are here for and we all suffer the same as you so we understand.
maz

Cluster headaches are the worst. And my heart goes out to all those who have to deal with them. For me I've found that acupuncture using a finger pricker has worked well for me. I poke my thumb a little above my nail and then apply pressure till blood comes out and do this to both of my thumbs and big toes. Usually the blood is alot darker when I have a Cluster Headache, almost black. Im not sure what the reason for this is. My Cluster Headaches go away in a few minutes. This method is also popular in korea for headaches and stomach aches caused by indigestion. Hopefully this might help out. For those scared of needles dont worry with a finger pricker you can barely even feel the needle.

30 yr cluster patient//new to website///new cluster just starting...has anyone used botox///i have found that imitrex injections(not pills) kills individual clusters/ oxygen if caught early can kill individual ones//decatron injection has sometimes helped reduce or one time killed cluster cycle/////have also taken decatron pills (be careful has potent side effects)//during cluster have found if you hold your breath it reduces the pain briefly

Hi All,
I found relief with Imigran 50mg tabs washed down with a
really strong cup of coffee at the first sign of an attack, and
ice applied to the back of my neck. This would abort the
[smiley=evil.gif] within 20 minute's.

Hoppy.

Hello, i'm new, i've had 'migraines' since i was 7, now 47 and i've been told i have cluster headaches. Having been given Migraleve all my life and finding them pointless i've found my best route for relief when i wake at night is to take a simple Anadin Extra and sit in the bath with the shower on the back of my neck and head. It's difficult to start as you are restless but soon calms the restlessness and the extreme pain is easier to cope with. After half to an hour i'm able to get sleep. It works for me, hopefully it can help someone else. As mine is a new diagnosis i'm yet to try any proper remedies but this has helped me cope for years

Cracked Egg wrote on Jan 30^th, 2015 at 9:05am:

Hello, i'm new, i've had 'migraines' since i was 7, now 47 and i've been told i have cluster headaches. Having been given Migraleve all my life and finding them pointless i've found my best route for relief when i wake at night is to take a simple Anadin Extra and sit in the bath with the shower on the back of my neck and head. It's difficult to start as you are restless but soon calms the restlessness and the extreme pain is easier to cope with. After half to an hour i'm able to get sleep. It works for me, hopefully it can help someone else. As mine is a new diagnosis i'm yet to try any proper remedies but this has helped me cope for years

   Take an aspirin and a shower. Not really much good but hang around and study.

                     Potter

Hi,
I have had Hortons for 2 years now and just about 6 weeks ago I got a tip about this mouth spray from a guy that have been cured from his Hortons in like 1 month time and he is still pain free after 7 months. The spray is is increasing the oxygen  on a cellular level and keeps the body hydrated. I have now been pain free for about 1 week and I am just so happy I just had to share it with you.
All the best
NoMoreHeadaches

You forgot to mention the brand name of the spray.

Hoppy.

Maybe he's talking about a topical steroid like Fluticasone. I found that it does help, especially when used as support to more potent prophylactics. 

Take 6 500mg Chlorella pills everyday and drink at least 2 litres of water per day.
Posted a new thread today about my experience.
Good luck.

Hi for everyone,

The past 10 years, every year 2 times, a month or more i was suffering from self-diagnosed CH.
Every year i come back to this forum, and website to do the study, and see the news, but mainly found treatment only for simptoms.
Doing observation on myself, and continous reading from other sufferers, i will describe my theory, and treatment, which is working, and i hope to help others.
I think the main cause is depression. It's hard to recognise on ourselfs, but from my observation, regarding the last episodes, i am sure.
For example, if you catch a cold, after recovery it's usual to feel 'blu', for me after almost for every flu, CH is coming out. First i was relating with the state of the immune system, like many people do, and treats with D3, it'ok, but not in every case is treatment for the cause.
Another example is summer-winter change, or vice-versa, can cause depression like symptoms, and in a few days CH.
So if we search for DIY treatment for depression, and we fight against this, i think we found the cause of the weakened immune system, and so on.
My working treatment looks like this:
1. Cold shower in the morning, as cold as possible 10 celsius, 20 or more seconds
2. B6 vitamine or B complex
3. 1 teaspoon proteine powder after breakfast with coffe.
4. Relax - and give yourself time to recover.

It's normal to find yourself the right way out from this state.

I think, the human body it's fully automatized "machine", so if we want, we can fix the system.

Cheers.
Ps. For me the symptomatic treatment was not so efficient, i used oxygen, imitrex, energy drinks, water, but  i feelt like it was just a delay for the next episode.
If you want i can make a whole document with my study, including bibliography and links.

Ps. For the immune system recovery i used Royal Jelly, every day, first thing in the morning, 20 minutes before breakfast.

If anyone in Canada is looking for O2, please go to medigas.com (just ensure you get a doctor to prescribe you High Flow oxygen) so you can get 15l/min...please do yourself a favour and start using O2 as an abortive (its God sent) with 0 side effects....other tips and tricks below:

ICE pack on the neck/temple/forearms and feet provides relief

hot and cold shower variation provides relief

go on Batch's vit d3 regiment NOW!!

Thank you so much for those tips

I've had CH episodes for about 20 years. The pain would kick in around 11.45 am and last for precisely 2 hours. My neurologist prescribed sumatriptan tablets and suggested I take one 30-45 minutes before the pain was due to arrive. It was effective in reducing pain but I still felt a 'heaviness' and inability to concentrate or socialise.

I went to a chiropractor who adjusted some bones in my skull, accessed via my mouth, which wasn't pleasant. Since that intervention I have been free of chronic pain but have experienced shadows around spring and autumn, the usual times of vulnerability. The trigger seems to be excessive workload overlaid with a few glasses of red wine.

I'm fascinated by Batch's work on D3 and anti-inflammatories – I suspect that histamine is a significant factor. I've ordered my supplements and will be taking them and am looking forward to monitoring the effects.

I didn't introduce myself yet. I'm a Dutchmen living in France, 48 years young. Since 2000 (30 years old) i've had many periods with attacks, almost every day, lasting about 6 weeks.
When i came to France i didn't havy any assurance medical (vivre l'europe) and i was forced to pass a period without any medication. In that time i learned how to have a litle less pain and surviving an attack. I put my hand before my mouth and put pressure with my breath (a bit like you shit) and i let a bit of air escape between my hand and my mouth. That way, i've got a bit pression in my head and that makes the bloodvessels that touch the nerve that causes the pain a bit smaller and the pain is realy less. But sometimes i have to do it for an hour and afterwards i have a bit of pain because of that. But all pain is better then the pain of an attack. I don't know if it works for you, but i hope so. Also, is start doing this direct when i feel an attack is comming. You know the signals your dents are giving you.

I hope someone takes advantage of my methode.

Greetings,

Hendrik.

I hope this info helps others.  I've been two months free of clusters headaches (which, yes, were horrible)  the two things that changed in my life were 1.  I was able to come off my meds - hydrochlorothiazide and 2. I had gone to physical therapy for a still neck.  I do think the PT has been what has helped the most.  One of the exercises was when I lay down I bring my chin to my chest and hold it there for the count of 10..  I began doing this in the morning  5 times in a row.  If I felt a headache begin to come on, say while on the train or at my desk I'd bring my chin to my chest and it would go away.  This stretches the muscles in the front of the neck under the chin as well as the back of the neck.  Ad I strengthened these muscles they had me add the lifting of my head when I did the exercises lying down. So again, lying down, chin to chest then lift the head off the bed  hold for up to 29 seconds.  You can build up to the 29.   I hope this helps folks.  I've had headaches since the 1980's and now I can go a day without or just having a mild one, which is 10times better then the clusters!!!!  May you all find relief!