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Topic: Could use a little help! (Read 398 times) |
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Dizzie
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Any suggestions would be gladly accepted.
My husband is chronic, and has been so for about 6 years (CH sufferer for about 12 years). Sometimes though, the headaches are a lot more rampant than others, and right now he is in one of those phases. He takes 300mg lithium 4 times a day, and Verapamil 120 mg 2 times a day. Right now he is doing a packet of prednisone (6 tabs first day, 5 next, 4 next, etc.) and that usually kicks the out-of-control cluster for him, but not this time. He is on day 4 of prednisone and he is still getting CH's every 4-5 hours. And feeling so LOUSY inbetween.
He has used so much Imitrex in the past week, that his legs look like a pin cushion, and I am pretty worried about the effects of that much Imitrex. I hoard the stuff when he doesn't use it as much, but his supply is dwindling and he can't bear the thought of running out of the shots.
Does anyone have any ideas how to break this cycle for now? We are getting kind of desperated.
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BobG
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Re: Could use a little help!
« Reply #1 on: Dec 1st, 2002, 10:47pm » |
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The only thing I would suggest is get his doctor to up the verapamil dose. Some people are taking more than twice the much daily.
Come on folks..........help the lady out.
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Mark C
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Re: Could use a little help!
« Reply #2 on: Dec 2nd, 2002, 12:34am » |
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Welcome Dizzy,
Sorry about all of the pain in your house. Have you guys tried Oxygen? Works well for many when used correctly. Good luck.
on Oct 28th, 2002, 9:39am, Not4Hire wrote:....just thought I'd post this. It was written for the CH group in Spain and is being translated into Spanish. Thanks to jonny and Peppermint for their help. It may be useful for anybody who suffers from the MOFO........
Hello, my fellow sufferers.....I am a gringo who has some good advice about the use of oxygen as an abortive for cluster headaches. It is VERY important that this be used correctly and safely, because there ARE risks and it is important that this is understood. The air we breathe is composed of approximately 79% nitrogen and 19% ambient oxygen-the other 1-2 % is rare gasses like argon, ozone, carbon monoxide (if you live in the city  ) , etc.
The benefits of oxygen therapy for sufferers of CH is clearly documented and can be a very great help in diminishing the horrible effect of this malady. It is important to start the therapy at the very first sign of an onset of the headache. The sooner, the better. If you wait, you will suffer more.
You must have a place that has NO open flames- NO SMOKING cigarettes, NO candles, NO fire! Oxygen can saturate your clothing, bedsheets, etc. and then catch on fire when you light a match. Be very careful and wait awhile before smoking.
You must have the proper delivery system: an oxygen supply (tank of oxygen--preferably medical grade), a NON-REBREATHER mask- the type that covers your mouth and nose and has a bag below to conserve the pure oxygen (NOT the tubes that go into your nostrils!), here is a link for a picture of the correct type of mask:
http://www.clusterheadaches.org/o2_mask.htm
a “bubbler” bottle that adds moisture to the oxygen will help your sinuses and throat from dryness and irritation,
a regulator that will deliver up to 15 liters per minute (10-12LPM is usually enough, less will not be as effective),
and it is important that you cut off any elastic band that will hold the mask onto your face--if you fall asleep with the mask attached, you may suffocate if the oxygen supply runs out. If this happens, it is important that the mask falls away so that you may breathe regular air. Your body will protect you to survive.
The amount of time to breathe the oxygen is important, also. If you do not get relief in 15-20 minutes, you will probably not get relief by further use. Keep trying!
In respect to costs: medical grade oxygen is purified with filtration systems and can be very expensive. However, the companies that produce oxygen do not have separate systems for welders or for hospitals. Impure oxygen is not cost-effective. Welders need pure oxygen in the same way as do hospitals. The inspection of the tanks is the only difference. Impure oxygen makes bad welds--impure oxygen can also make you sick. Oxygen is SAFE...if used correctly.
In the USA, it is necessary to have a prescription from your doctor to use oxygen. In other countries, it may be the same. But this therapy is VERY effective. Please encourage your doctor to prescribe it and teach you to use it effectively. It is a blessing.
Fight the beast with this method and I am sure it will help.
If you have any questions, please contact me. I will try to to help you use this excellent method--which has very little side effects--IF USED PROPERLY!
I wish to thank my friend, Peppermint, for translating my words from English into Spanish, because I know that this terrible affliction knows no language but PAIN. Together we may conquer, or at least, lessen the awful effects.
Your friend and brother-in-pain......Steve (Not4Hire)
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http://www.clusterheadaches.org/medications.htm
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Dizzie
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Re: Could use a little help!
« Reply #3 on: Dec 2nd, 2002, 1:08am » |
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He's tried oxygen and it didn't work at all. We will up the Verapamil and try that. He isn't convinced that the verapamil works all that well for him (but I think it does, so I will have him try more. The dr. did say he can take up to 480 mg a day).
I was just hoping for a right now thing that will make it all better.
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JohnM
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Re: Could use a little help!
« Reply #4 on: Dec 2nd, 2002, 7:51am » |
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Hi Dizzie,
I had success breaking my last cycle with a detoxification diet combined with lots and lots of water.
Simply put, I ate only fresh fruit, fresh vegetables and herbs and spices (no salt/msg/etc) and drank only water and nothing else for a week. It broke my cycle in 3 or 4 days.
7 months pain free to date. If you are desperate it is worth a try.
Love J
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Azrael
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Re: Could use a little help!
« Reply #5 on: Dec 2nd, 2002, 3:09pm » |
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I agree with upping the verapamil. I was on 480mg/day, and it wasn't doing anything for me. My neuro upped the dosage to 720mg/day, and in about a week, I started noticing a definite improvement with the CH.
PFDAN................................ Drk^Angel
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headsoaker
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Re: Could use a little help!
« Reply #6 on: Dec 23rd, 2002, 12:58am » |
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I have read several stories, which remind me of years past. Last year I changed the way I handled the beast and I would like to share it with you all. Until reading some of the stories I had almost forgot what it was like then for me. Now here is what I do each night for about 6 weeks a year. When I feel it coming on (if I can catch it in time)I walk calmly (shielding my eyes from the painful light) to the bathroom and draw a very hot bath. Remaining very calm (repeating quietly "back off...easy now" (that doesn't help but I do it anyway) I sit with head between my knees splashing water on my face until I feel I can relax a bit more and then I lay back. Generally in 30 mins it is gone. Never becoming a full blown 10 (as I call it) I will do this 4 to 6 times a night. I hope and pray someone who reads this will try to remain calm and get in a hot tub and find some relief this way as well. The only way it works for me is if I can catch it before it reaches what I call a level 3. If I am sleeping to hard and I don’t catch it in time then it becomes the full blown monster. Last year I was able to catch all but 1 in time. This year I missed 1 two nights ago, hopefully I will catch the rest in time.
So go soak your head.
I hope this will help. Remember at the first sign.
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The mad viking
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Re: Could use a little help!
« Reply #7 on: Dec 23rd, 2002, 1:28am » |
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I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway
Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily
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terrylch
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Re: Could use a little help!
« Reply #8 on: Dec 25th, 2002, 10:51am » |
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I am not a regular on this site. I have CH and accidently found a pressure point to hold to prevent getting them or to make them go away. I have not had much luck trying to tell anyone as I do not know how to post a message. All I have been able to do is answer a couple such as yours. Anyway if you are interested I would be happy to tell you what I did to make them go away. my e-mail address is: terrylch@msn.com if you want to hear it. bye , terry
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terry
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Danie
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Re: Could use a little help!
« Reply #9 on: Feb 16th, 2003, 7:14pm » |
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Hi my name is Daniel
Let me start by saying i know what your spouse is going threw because i had CH for the last 15 years. It's been over a 1 1/2 years i didn't get any CH. First we tried nasal spray imitrex, also tried prednisone that was fine for periodic CH but about 4 years ago it became chronic CH. The medications i'm taking now is in the morning i take 1 apo-naproxen 500 mg and 1 novo-ranitidine 150 mg. Before i go to bed at night i take the same thing + 1 apo-amitriptyline 75 mg. I hope this can be useful for your husband and hope he get's better cause life is no fun with CH.
Sincerely Daniel
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