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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here, just checkin in with an intro
        
(Message started by: kustramo on Mar 13^th, 2006, 6:35pm)

Title: New here, just checkin in with an intro
Post by kustramo on Mar 13^th, 2006, 6:35pm

Hey, my name is Adam. I'm a 24 year old from St. Louis, MO and have had headache problems since I was at least 17 (circa 1998). I finally was properly diagnosed with chronic clusters in November of '05 by the 7th doctor I had seen about the problem. I found this website and thought it would be a good place to share and get some info from people who actually understand, instead of those who really have no idea what this pain is like.

For a little rundown of my situation (since all of you were so kind to share...) I was diagnosed with migranes in 2001, but as I read more about them I knew that was not right. I never really looked at CH because they never went away, but I found out about chronic CH, and it all made since. Up in the middle of the night pacing back and forth for an hour, in tears just wishing it would end didn't sound like migranes. I would get 2-3 a day sometimes, some only lasting 30 minutes, some 2-3 hours, but never these all day things and no vomiting, etc. like migranes.

I was sent to a neurologist from my other doctor to read my MRI and he was the one who recommended this. The other doctor had put me on a hyper-glycemic diet and strees-relief plan? Any one else dealt with HGI diets before?

Well I have been on alot of meds, right now on 100mg Topamax, 240mg Verapamil and take Indocin when I get an attack... I just started the Verapamil in November. I had been doing fine, but in the past 2 weeks its been much worse again. So this is why I am hear; just to vent and to get a little advice.

Looking forward to talking to you all soon.

Bye for now.

Title: Re: New here, just checkin in with an intro
Post by Charlotte on Mar 13^th, 2006, 6:42pm

Sorry you had to find us, but welcome.

I'm new here also, but You will get some moral support here. We all have been through the grinder and I think we're the biggest bunch of guinea pigs I've ever heard of.

Welcome.

Charlotte

Title: Re: New here, just checkin in with an intro
Post by Guiseppi on Mar 13^th, 2006, 6:49pm

Talk to your doctor about oxygen, read the link to the left, print it out and show it to him....(or her).. It's worked great for many people on the board, it's cheap, nil for side affects and chases the beast away in a matter of minutes. Welcome aboard, read everything, I wish you luck in finding something that works for you.

Guiseppi

Title: Re: New here, just checkin in with an intro
Post by Richr8 on Mar 13^th, 2006, 7:15pm

Welcome! Sorry you had to find us, but glad that you did. It looks like you have much reading to do with all of the tips and links provided although no one has reported any universal miracle cures, maybe one of the newer regimens will work for you. Despite the health risks associated with it, Prednisone tapers have reduced my cycles to several weeks from 12 weeks. I use O2 as an abortive and Verapamil as a preventive with 6mg of Melatonin to help with the sleeplessness brought on by the beast and the Prednisone.
My experience with Topamax. Topamax did not work for me either . Some of the things I experienced are listed here: Listlessness, confusion, inability to focus, cognitive difficulties, somnulence, staggering gait, depression, uselessness, etc. I realize some of these are, or could, be attributable to the long period of sleep dep I was recovering from and general inactivity, but overall, it was not a pleasant experience. Others have had better luck. Anyway, those are my observations so far. I definitely will not be trying Topamax again.Anyway, dig in, start reading and ask all the questions you want. There are lots of great folks here who know exactly what you are going through and will help in any way they can.
pf wishes

Rich

Title: Re: New here, just checkin in with an intro
Post by kustramo on Mar 13^th, 2006, 7:24pm

Thanks for the replys so far...
I have been on Topamax for almost 3 years. I started in a clinical study of it. It never really helped, but it did a little. I did notice, however, that after taking it for a while I had lost 25 pounds in just 6 months (from 185 to 160, so a pretty significant decrease) so they cut my dosage to 50mg from 100mg. Within a week I had the worst headaches I have ever had, so they increased it again and gave me Relpax to take when I got an attack, which I hate (price, side effects, etc...) My doctor and I have talked about going off of it and I am actually supposed to have been decreasing my dose but I have been a little scared due to the increased headaces recently.

Title: Re: New here, just checkin in with an intro
Post by Richr8 on Mar 13^th, 2006, 7:31pm

How much of a problem is the weight loss for you? It sounds like the Topomax is working for you aside from that. Maybe Topomax and several Super Sized Quarter pounders with cheese might do the trick. :)

Title: Re: New here, just checkin in with an intro
Post by kustramo on Mar 13^th, 2006, 9:36pm

The weight loss wasn't a problem for me, just for the nurse practitioner who quickly cut my dosage. That was over a year ago and my weight has stablized after the initial loss. The Topamax, and now especially combined with the Verapamil has decreased frequency and severity, but for instance in the last 3 days ive had several attacks, two being pretty severe. I'm guessing as I have read from the posts though, no one has really found the end cure, huh?

Title: Re: New here, just checkin in with an intro
Post by E-Double on Mar 13^th, 2006, 9:59pm

Other than the brief mention of Relpax, you do not mention an abortive therapy.
You did say that you take indocin upon accute attack.
Is that so?? I never heard of indocin/indomethacin aborting with the exception of suppositories.

What about another triptan for relief?
Oxygen?
Ya sort of mention that $$ is a concern.

Demand oxygen!!!!!!!!!!!!
Cheaper and for MANY a wonderful abortive

Good to meet you.

Eric

Title: Re: New here, just checkin in with an intro
Post by thebbz on Mar 13^th, 2006, 10:09pm

Welcome and MAN I hate it for all you chronics out there. [smiley=bow.gif]
Read around lots of info here for ya.
all the best 8)
jb

Title: Re: New here, just checkin in with an intro
Post by kustramo on Mar 13^th, 2006, 10:26pm

Most of the doctors have primarily given me preventative treatements. First it was just ibuprofen until I was taking so much I started to get stomach problems. As far as Indocin/indomethecin, I was on it as a preventative with little results, but taking it for abortive treatments have seemed to work, as long as I catch it and for the less severe headaches. I was given Relpax (before the indocin) because I demanded some help, but It is over $5 a pill with my insurance, and I can only get 6 a month at that deal. Then it is really high. I will ask about the Oxygen cause it seems a lot of people have had good responses to it, but what about when you are at work, or out somewhere... is there an easy way to use it when not at home?

Title: Re: New here, just checkin in with an intro
Post by E-Double on Mar 13^th, 2006, 10:41pm

There are smaller tanks that you can leave in your office or car.

I use a "D" tank for the road.
It can literally fit in a backpack.

I guess it depends what you do for a living and how accomodating you employers are.

Best wishes and if there is anything you need, just holla ;)