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

"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

"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

"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

"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

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: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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)

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.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; 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.

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.

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

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.

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

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

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


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...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Q… we can answer, just let us know!

Roland.

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