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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> new to the group
        
(Message started by: jerod on Feb 3^rd, 2004, 5:12pm)

Title: new to the group
Post by jerod on Feb 3^rd, 2004, 5:12pm

Hello all:
I'm new here but have been suffering through these headaches for about 6 years. Until recently I thought they were just really bad/frequent migraines as I get them chronically. Anyhow, I've been looking on the site and have been learning quite a bit and am very glad to have found this forum. Ironically I found this site today and developed a CH while looking around. Just wanted to introduce myself and ask what would be a good starting treatment as right now I'm just trying a mix of different migraine/headache meds (maxalt and various OTC) that don't really work at all. I did try an imitrex (pill) once but felt like i was having a mild allergic reaction (pressure in chest, trouble breathing) to it. Sorry for such a long post but this is very exciting for me as, like I said, until very recently I was misdiagnosed with migraines and am just now aware that other people are having the same horrible episodes. Good luck to you all.

Title: Re: new to the group
Post by thomas on Feb 3^rd, 2004, 5:56pm

Welcome aboard, the reaction you got to the imitrex sounds pretty normal.... try O2, zomig, or amerge if you can get it.

Title: Re: new to the group
Post by BobG on Feb 3^rd, 2004, 6:04pm

Hello jerod,
Welcome to the board.
There is a wealth on information under the buttons on the left side of your screen.
Under the OUCH website button you'll find even more info.
Click them all and read, read, read.
OTC meds are of little value in the fight against clusters.
Your reaction to imitrex was probably not an allergic reaction. Almost all imitrex users feel the chest pain. Be sure your have consulted your doctor about taking imitrex. Some folks can't take it.
Have you taken the cluster quiz?
There is a General topics area at this website. You might like to introduce yourself over there. More people read that part of the board than this one.
Stick around. You'll like it here.

Title: Re: new to the group
Post by henzey on Feb 3^rd, 2004, 6:11pm

Ditto on what Thomas suggested....I have much less trouble with Zomig and Amerge than with Imitrex. Fewer rebounds, fewer tingling feelings and can sleep better. You also might want to look into preventative options....then you don't have to deal as much with any of these. Although many of these have serious side effects....especially if your episodes are longer than a couple of months. This is a very good site to keep reading and just learning what works for different folks....check out the info on melatonin, for example.

Title: Re: new to the group
Post by Giovanni on Feb 3^rd, 2004, 8:06pm

Welcome to clusterville jerod,

You might also want to try oxygen as many people have had luck with it as an abortative. Very few if any side effects. The configuration to the left (link) has been the most successful for clusterheads.

John

Title: Re: new to the group
Post by jerod on Feb 4^th, 2004, 9:15am

Thank you guys so much. Since I've found this site it's been like a weight has been lifted off of me... finally i can discuss these and be taken seriously and find some (hopefully) effective solutions.

Title: Re: new to the group
Post by thomas on Feb 4^th, 2004, 9:37am

on 02/04/04 at 09:15:25, jerod wrote:

Thank you guys so much. Since I've found this site it's been like a weight has been lifted off of me... finally i can discuss these and be taken seriously .

Isn't that the greatest feeling in the world?

Title: Re: new to the group
Post by jerod on Feb 4^th, 2004, 11:01am

it's unbelievable.

Title: Re: new to the group
Post by Edski_1 on Feb 4^th, 2004, 11:31am

Having people understand is perhaps the most important thing. :)

The preventative route is seriously the best. I've been on Topamax for about a month now, and have not had to use an abortive since the second day that I was on "el Dopa"...there've been side effects, but luckily I've been able to tolerate them well. Others have not, and had a baaaaaaaad time on this med...some have had quite a success story with it.

Fortunately, my clusters seem to be relatively mild in comparison to many folks (I don't think I've ever had a Kip 10...had K8's and K9's enough times), although my cycle seems to be rather long-but aside from the one I'm currently in I've only had one other about 14 years ago- and my remission also very long...

This disease is very odd, and very unique to each individual. Treatment options have to be uniquely tailored, are often a mix of treatments used for other maladies (migraines, hypertension, epilepsy, others), use mix & match phamacology, and dosages that make many uninitiated doctors cringe.

Very often the patients of this disease have to educate the doctors it seems. I feel very lucky that this time I've found a neuro that immediately looked at my BP medications, acknowledged they are working, and looked for a preventative, knowing apparently some of the recent research that is going on.

As for abortives, Imitrex seems to be the triptan of choice, and injections are a favorite for speed. Personally I have only tried Zomig...tabs usually, the nasal spray once. Both have been effective. Others have reported varying effectiveness with other triptans. Many have reported good results with oxygen, which appears to have little side effects (but I would guess has some technical issues with tanks and masks and gas regulators...). Before I started on topamax I was using cafergot, which for my brand of CH had limited effectiveness as an abortive...other types of ergotamines have been used, but seems that might be an older form of phamacology...

Stick around. Lots of good advice and banter 'round here. And ears that understand. And I think a lot of us were at one point or another mis-diagnosed.

Title: Re: new to the group
Post by jerod on Feb 5^th, 2004, 10:32am

I am getting so much good info from eveyone, thanks again.

Title: Re: new to the group
Post by PatFan on Feb 5^th, 2004, 12:26pm

Verapamil to prevent.. 480/mg a day
O2 to abort....
I cried my eyes out when I found that they both work for me. Good Luck!

Title: Re: new to the group
Post by jerod on Feb 6^th, 2004, 1:24pm

do you get any side-effects with Verapamil?

Title: Re: new to the group
Post by PatFan on Feb 6^th, 2004, 2:33pm

Side effects include lowered blood pressure at high doses. It only lowers mine a bit though, I'm still in the normal range. And also, constipation which is mild. It's a small price to pay......

Title: Re: new to the group
Post by taraann on Feb 7^th, 2004, 9:18pm

Welcome to the boat Jerod. Yeah that feeling of not being alone is just incredible and kinda emotionally overwhelming (it was for me anyways)! It's awesome. I had that same feeling with the imitrex pills, didn't touch the CH I even had the injections at the hospital and the docs were so surprised (said it was rare) that it didn't help me. As someone else said though you need a docs approval for it as it can be a dangerous drug for some ppl.

I have found a much welcome break from my neverending cycle from hell. I just got out of the hospital where they did Occital Nerve block, IV DHE treatments, I'm on Verapamil and Lithium as preventatives. I'm not quite sure which of the above actually did it to break my cycle (I'm 4 days PF now with a few mild shadows yesterday, nothing to complain about at all) I also have oxygen as an abortive and Zomig nasal spray. Goodluck to you and keep us posted!

BTW do you have a good neurologist? I finally found an awesome team of them at a headache specialist clinic. Worth the hour and a half drive to see docs that seem to know what they are doing!