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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to the site, but not the clusters
        
(Message started by: ShellB on Apr 14^th, 2004, 11:42pm)

Title: New to the site, but not the clusters
Post by ShellB on Apr 14^th, 2004, 11:42pm

Hi all, I am 38 and have suffered with cluster headaches for the last 15 years. The first one that I got, I thought I was going to die, that the right side of my head was going to blow up! Had at least 1, everyday after that first day, for several weeks. Then they went away for a month or so. As the years went by, they would go away for a longer period of time, but then they would come back and stay longer. I have had them go away for a year and a half once....that was the longest, and when they come back I have had them anywhere from 4 to 9 months straight. I will have 1 a day or several a day and if I go a day or 2 without I am very fortunate! This bout that I am going through right now Started up the beginning of Feb. Been to the Doc and going to see a Neuro Fri. 16th. Last time I saw the neuro was in 1997. Seems like most docs don't know too much about clusters. Hopefully the neuro will know more. I am on Verapamil. I have been on Depakote before also. Don't know if they have ever really helped, because I have a habit of stopping the meds when the clusters go away. I hate to have to take pills everyday and when the clusters go away I think I shouldn't have to take the pills anymore. I just hate this whole thing. They are so horrible. I hate waking up in the middle of the night with one and an hour or two later it go away, fall back to sleep for a half hour and wake up with another.....and do that all throught the night, those nights are the worst! Not just one, but one after the other. I have them during the day too, they don't care when they come. Everytime they go away, I think maybe they will never come back and when they do I just ask myself WHY??? and where do they come from???? Does anybody know?????? After all these years I still don't understand why or where they come from. When I am having them I feel as though they put a damper on my life, because they can come at anytime and anywhere, and I hate for people to have to see me with them, it's almost embarrassing I feel for everybody here because I use to think I was the only one, believe me I know what you are going through! I will love any feedback or tips. Thanks [smiley=huh.gif]

Title: Re: New to the site, but not the clusters
Post by HypnoticFreddy on Apr 15^th, 2004, 12:24am

Have you ever tried abortives like Imitrex and oxygen?

Be sure to discuss this with the Neuro.

Print out info from links on the leftm read and print out info from the OUCH website too.

If Neuro is unfamiliar with CHs, politely leave.

Find another doctor.

-Scott

Title: Re: New to the site, but not the clusters
Post by TxBasslady on Apr 15^th, 2004, 10:08pm

Welcome ShellB,

Sounds like you need more than just the verapamil. Some folks here take it along with other meds. They call it a "cocktail".

Scott is right.....you need to ask the neuro about the oxygen. And make sure the regulator is rated for 12 to 15ml.

Hope you have good luck at the doc's. Stay in touch, let us know how you are doing.

PF vibes,

Jean

Title: Re: New to the site, but not the clusters
Post by Tall_Guy on Apr 15^th, 2004, 10:50pm

Hi ShellB,
I too am new here but not to CH. Mine started about 10 years ago. They come every 18 months almost to the day & last 2 weeks to 2 months. I never know when an attack may occur - equally likely to happen at night as during the day (at least that allows me to avoid the dread of sleep that others experience).

I always thought that I was some rare oddity (or wimp) with my routines of pacing or curling up in a ball, or trying anything to stop the damn pain (including banging my head on the floor). It's reassuring to know I'm not alone.

I take Amerge as an abortive & it works occasionally if taken on an empty stomach. If I've eaten anything in the previous 3-4 hours, it's worthless. Reading through this site has given me more info on potential help (preventative or abortive) than I've ever seen or heard previously.

My question is what do people do during a CH attack at work?

Title: Re: New to the site, but not the clusters
Post by Nolan on Apr 16^th, 2004, 12:48am

Welcome ShellB.

I'm sorry that you suffer from this dread, but the information on this site will better prepare you to fight back. You have a place to go.

I've been suffering from CH's for the last 22 years, and was shocked at how effective Imitrex was. But, many here don't use any meds, just 02 and it works well for them. After doing a fair bit of study on clusters, I'd the the most popular 'cycle time' abortive is oxygen. Insist upon a prescript, or use a welder's tank and non-rebreather mask.

You're not alone, you're not a wimp. CH is the most severe and painful type of headache. The pain would reduce the most macho to mush in no time. You have to get smart, know how to fight back, and keep your metal toughness to survive.

We're here to help-

Nolan

Title: Re: New to the site, but not the clusters
Post by ShellB on Apr 16^th, 2004, 1:07am

I have taken imitrex, the injections work the best. The nasal spray use to work at times, but the last 6 that I did during the CHs did not. A couple of weeks ago when I went to my regular Doc she gave me a script for the tablets and they cost me 136.00 for 9 pills with my new insurance (which sucks). Maybe 2 of those nine pills may have helped me a little, but hard to say could have just been one of those fluke CHs that just last for 30 mins. ?????? I have taken Frova, worked for the first few times I took it then not anymore after that. I am going to ask the Doc about Oxygen, maybe it will be cheaper than imitrex. When I have a CH I really try to concentrate on my breathing, seems as though I am not getting enough oxygen (I tend to hold my breath, because of the paing I guess). I have been drinking lots of water also.

To Tall Guy, I have had them at work, and believe me nothing gets done until the headache is gone. I am very fortunate to have a great boss. I have a bag of ice in the fridge there. When I am at home I take a hot shower or use the heating pad (sitting up and rocking back and forth of course), and then after that doesn't do much for me I turn to ice (while pacing back and forth). I have been known to take 5 showers in a night through maybe 2 or 3 headaces. In and out of the shower, it just seems all to crazy, but anything for relief even if it is just for a second or two.

Title: Re: New to the site, but not the clusters
Post by ZAIRA on Apr 16^th, 2004, 3:41pm

I don't have suggestions but you must console yourself and think that your pain are the same of ours.... it's a bad "consolation prize"..... but this is our life..... WELCOME!

PFDAN, Zaira