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Mrs Deej
CH.com Administrator
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My life is what I make it....and it's beautiful!

   


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Posts: 523
Tips for CH Sufferers
« on: Oct 8th, 2006, 10:51am »

If you have a tip or suggestion for your fellow CH'ers or for the newbies that come here FOR HELP, please let me know and it will be added here.
 
Please remember, not everything helps everyone, however, that is why we are all here...to help and support.    
 
Simply PM me and your tip will be added.  
 
Serious tips only please!!  
 
Thank you,
Steph
« Last Edit: Oct 8th, 2006, 11:07am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #1 on: Oct 16th, 2006, 8:07am »

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

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #2 on: Oct 16th, 2006, 8:08am »

"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
« Last Edit: Oct 22nd, 2006, 1:25am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #3 on: Oct 16th, 2006, 8:09am »

"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
« Last Edit: Oct 22nd, 2006, 1:25am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #4 on: Oct 16th, 2006, 8:13am »

"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
« Last Edit: Oct 22nd, 2006, 1:27am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #5 on: Oct 16th, 2006, 8:16am »

"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 clustermasx 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
« Last Edit: Oct 22nd, 2006, 1:28am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #6 on: Oct 16th, 2006, 8:38am »

"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
« Last Edit: Oct 22nd, 2006, 1:29am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #7 on: Oct 16th, 2006, 8:41am »

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
« Last Edit: Oct 22nd, 2006, 1:30am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #8 on: Oct 16th, 2006, 8:47am »

"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
« Last Edit: Oct 22nd, 2006, 1:32am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #9 on: Oct 16th, 2006, 9:01am »

"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
« Last Edit: Oct 22nd, 2006, 1:32am by Mrs Deej » IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #10 on: Nov 2nd, 2006, 1:45am »

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: http://www2.mooremedical.com/index.cfm?PG=CTL&CS=HOM&FN=ProductD etail&PID=676 (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)
IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #11 on: Nov 2nd, 2006, 1:47am »

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:  
 
http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm
 
 
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:  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
There is also a new mask out that works great.  (to purchase, go to: www.clustermasx.com)  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.  
 
http://www.chhelp.org/mhni.html
 
 
 
I hope the above tips and information is helpful.  Thank you, fellow members for the information I stole from your posts.
IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #12 on: Dec 4th, 2006, 12:31am »

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.  http://www.naic.org/state_web_map.htm  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.
IP Logged

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

Mrs Deej
CH.com Administrator
USA 
*****




My life is what I make it....and it's beautiful!

   


Gender: female
Posts: 523
Re: Tips for CH Sufferers
« Reply #13 on: Dec 4th, 2006, 12:35am »

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:
http://us.gsk.com/health/prescription_progs.htm
 
Bridg es to Access program:
http://www.bridgestoaccess.com/
 
The third site, PPA will help you determine what programs you are eligible through both GSK and your state:
https://www.pparx.org/Intro.php
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Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

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