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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello from Katrinaville
        
(Message started by: Capt-Kilowatt on Nov 4^th, 2005, 11:47pm)

Title: Hello from Katrinaville
Post by Capt-Kilowatt on Nov 4^th, 2005, 11:47pm

I'm glad I found this site. I'll try to condense this. I'm 48. About 2 yrs ago I started having some really bad headaches I believe now were clusters or sinus blockage. I had sinus problems that caused total blockage and had sinus surgery. I thought that would fix it. It didn't. I refuse to believe it's not totally sinus related but according to 2 sinus doctors and my neurologist and my personal doctor they feel the sinus may "lead" to them but not the root cause. I've had MRI's, CT's, had a neck MRI scan, teeth checked twice (pain goes into my cheek), eyes checked. I've been on Topamax for awhile now. I had them fairly under control. Maybe one a week or every other week and I could live with that. Then I got separated filing for divorce and they came back pretty bad. Then Katrina hit us. I'm living right in the middle of it where major destruction was. The clusters came in with a vengence. I'm having 2 a day and my head hurts constantly. I know I've got a lot of stress etc but it's not all the time. I've been having this go on now for about 6 months of almost constant headaches. I'm waiting for the cycle to end but don't see anything in sight. My doctor just put me on Wellbutrin along with the Topamax to see how that will help. I just started taking it so it hasn't had time to get in my system yet. Well, I just wanted to introduce myself and hope I can help in some small way. I'm a research finatic and although I can't figure mine out I've sampled quite a few prescriptions etc and know what I didn't like lol. Good Luck to all of you and Happy Holidays!

Title: Re: Hello from Katrinaville
Post by marlinsfan on Nov 5^th, 2005, 7:27am

Hey Captain, Wilmaville here.

Did you take the cluster quiz on the left? You say you are having a two day where your head hurts constantly, that's not a normal CH symptom.

Good luck with your research, and PF wishes.

Title: Re: Hello from Katrinaville
Post by Capt-Kilowatt on Nov 5^th, 2005, 9:06am

on 11/05/05 at 07:27:59, marlinsfan wrote:

Hey Marlinsfan. I guess you couldn't say it hurts all day. The area where the CH's occur has a "dull" sensation that I notice might be a better term. I think it's a "shell shock" syndrome. It's not a pain per-se. I've got a feeling like if I shook my head hard I would do some damage to myself. After an attack my head is sore "physically" from the pain. Might be from the Maxalt MLT opening up the blood vessels. Since I've been having 2/day for weeks now my head is just "sore" I guess would be a better way of putting it ........ with the "verge" of another attack on the way. After reading a thread on Topamax.... I'm beginning to wonder if it's actually not doing me more harm than good and causing these attacks. I think it was helping at first but may have turned it's ugly head and I didn't realize it. It's certainly not helping so I'm thinking of just quiting it altogether to see what happens. I've been prescribed Wellbutrin (Zyban) and waiting for it to get in my system enough to help. Thanks for the reply.

Title: Re: Hello from Katrinaville
Post by unsolved1 on Nov 5^th, 2005, 9:12am

Hi Captain! Welcome aboard. You've still got alot of reading to do. Here's something to get you started:
http://www.brightok.net/~mnjday/chtherapy.pdf

Goodluck & pain Free wishes
UNsolved

Title: Re: Hello from Katrinaville
Post by burnt-toast on Nov 7^th, 2005, 4:24am

It appears you've had medical tests performed to rule out physical causes but have you seen a neurologist that specializes in headache disorders?

Of concern to me is the "2 a day" (CH symptom) followed by "head hurts constantly" & "6 months of almost constant headaches" (non CH symptoms).

It seems you may still be searching for a proper diagnosis. The board is not the place to get it.

It may be surprising to you, but it is common for suffers to have difficulty finding a neurologist who is familiar with CH. General practicioners can be even less familiar with the condition because it is rare.

My suggestion is to keep a journal of your symptoms and find a headache specialist to work with and keep seeking answers and researching until you are confident with a diagnosis.

Best wishes on your journey.

Tom

Title: Re: Hello from Katrinaville
Post by Capt-Kilowatt on Nov 7^th, 2005, 7:02pm

on 11/07/05 at 04:24:56, burnt-toast wrote:

Hey Tom. Yeah I've been seeing a neurologist who seems to be pretty well informed on the subject. He gave me a test when I first saw him and confirmed they were migraines or clusters. I had Sinus MRI, Brain MRI, Neck MRI, that EKG type thing with the lights flashing in your face with your eyes closed. Teeth checked twice. Eyes checked. Started out seeing both the Sinus specialist and the neurologist. I understand what you're saying though. It's like I'm so chronic that the only reason I don't have one constantly sometimes was because the Maxalt was in my system preventing it. I think I'm onto something though as you can read on my other post. I'm thinking the Topamax and Maxalt may be some form of "trigger" for me. I've almost weened myself off the Topamax and trying not to take a Maxalt and haven't had a CH in 2 days now. That's the first time in over 3 months. I'm waiting to see if I'm onto something now or if it's just a fluke.