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        Cluster Headache Help and Support >> Cluster Headache Specific >> i am new here and need help ??
        
(Message started by: dave..... on Nov 13^th, 2006, 9:29am)

Title: i am new here and need help ??
Post by dave..... on Nov 13^th, 2006, 9:29am

i am getting them again 5 or 6 a day.... like a base ball bat to the head.........been to thr dr. a few years ago they did not help.....i am loosing hope

Title: Re: i am new here and need help ??
Post by LeLimey on Nov 13^th, 2006, 9:34am

Dave we'll help you. Can you tell us what meds you have tried and how they were? Can you describe a hit, what happens and how long it lasts? Have you tried Oxygen at a high flow rate?
There are lots of tips and things we can tell you about we just need some info from you. Do you have insurance is another one that we need to know as there are different things we can suggest if thats a problem, hang in there, we'll help!
Helen

Title: Re: i am new here and need help ??
Post by dave..... on Nov 13^th, 2006, 9:44am

i have not tried oxygen..... i have tried everything else.. immitrex / maxalt / all that stuff the dr. gave me..... when i get hit its like getting hit with a baseball bat instant blinding crippiling pain..... sometimes they come on slow... but they end up the same.... i get them in the morning then in the afternoon in the evening,at night when i try to sleep.... the only thing that helps is a shower so hot it burns my skin..... they can last for days with varring levels of pain.......sorry for the spelling but i feel another one starting

Title: Re: i am new here and need help ??
Post by Sean_C on Nov 13^th, 2006, 9:51am

on 11/13/06 at 09:44:43, dave..... wrote:

they can last for days with varring levels of pain.......

Wow, I couldn't take the pain for days, you must have clusters really bad, I hope you get some pain free time soon Dave.

Sean.............................

Title: Re: i am new here and need help ??
Post by Guiseppi on Nov 13^th, 2006, 10:23am

You have some reading to do. What is currently working for me now, didn't work in the past because I used it wrong. The bad news is nothing will cure these but you can manage them and avoid most of the real intense ones.

Get your doctor to prescribe you oxygen. You have to do this right or it's next to worthless. You need a high flow regulator, one that goes up to 15 litres per minute flow, (Written as 15LPM) and a non-rebreather mask. You need as close to 100% oxygen as you can get. Then you need to start huffing it as soon as the hit starts. It generally won't reverse the pain for me but will stop it where it is.

I take a cafergot pill as soon as i start the oxygen or the ache comes back 10 minutes after i shut off the 02, Cafergot by itself never worked for me cuz the pain comes on faster then the cafergot can get in my system.

You mentioned imitrex, have you tried the imitrex injections? they work great for me, the imitrex pills and imitrex nasal sprays did nothing for me either.

please don't give up hope. You have to take it on yourself to learn as much as you can from this board and take charge of your medical care. very few doctors understand these things. if you leave it all up to them you are going to hurt...a lot. We won't let that happen to you if we can help it. Welcome to your new home and a bunch of new friends.

guiseppi

Title: Re: i am new here and need help ??
Post by LeLimey on Nov 13^th, 2006, 10:26am

Dave there are other conditions that can be confused with CH but that respond to other meds. I'm not questioning your diagnosis merely trying to help here because even doctors can get confused with them all being similar.
Are you saying one attack can last for days at a time with varying levels of pain? ie a constant pain but with spikes of more severe pain?
There is another condition called hemicrania continua which responds very well to Indomethacin. It might be worth trying that. Its a fast acting drug, you should be feeling the benefits within a week, if it doesn't work then you haven't really lost out on anything and what you could gain is well worth it.
I can't recommend you looking into O2 enough.

For CH, the standard meds are verapamil as a preventative. This is often used with a prednisone taper which I can give you more details on if you haven't tried it. verapamil is very effective for most people, the only difference is dosage, some people get relief at as little as 360 mg whereas others don't find it kicks in until 960 mg You have to find your own level with it and that means tapering hence the verapamil to cover you while you get there!

Within abortives most triptans work too slowly for CH. I have heard of people using maxalt but the two most common ones are Imitrex injections and Zomig nasal sprays. The injections take about 5-10 minutes to kick in and the nasal sprays about ten minutes. The beauty of the nasal sprays is they have a half life of 12 hours so will prevent further hits for you.

Others are having success with Zyprexa and you may want to read up about that on here too.

I see heat works for you as opposed to ice, good I'm glad you have something! You may also want to try red bull or generic equivalents or strong coffee. Caffeine is a vaso constrictor so works in a similar way to the triptans and if used early enough in a hit can be very effective.

I don't want to overwhelm you and thats a lot of info already. Hang in there, ask more questions if you want to and help us help you okay?!
Helen

Title: Re: i am new here and need help ??
Post by dave..... on Nov 13^th, 2006, 10:28am

i will talk to the dr. about the oxygen... i tried the imitrex injections..... all they did was give me a burning feeling in the back of my neck

Title: Re: i am new here and need help ??
Post by dave..... on Nov 13^th, 2006, 10:34am

when i was getting them a few years ago they gave me depakote i dont know if it worked or the cycle ended.... i started taking depakote again..... i dont think its working

Title: Re: i am new here and need help ??
Post by LeLimey on Nov 13^th, 2006, 10:41am

Are you on the same dose of depakote dave? sometimes stuff that works in one cycle won't in the next and vice versa. Its always worth re visiting old drugs.
Definitely ask about O2, you need to have it at 15 litres per minute and through a non rebreather mask NOT nasal cannula's, it simply won't work. The best of all is a clustermasx which you can order from www.clustermasx.com. because you get a 100% seal with that it means you are only breathing in O2 which means you can abort faster. I can abort a hit from waking at night in 5-7 minutes.

Helen