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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New to the posts...not to the headaches!!
        
(Message started by: sappygirl13 on Dec 11^th, 2004, 7:33pm)

Title: New to the posts...not to the headaches!!
Post by sappygirl13 on Dec 11^th, 2004, 7:33pm

Hi-my name is Tina. I am a 23 yr old from WV. I got CH 3 years ago when i got mono. I've had an MRI, couple CT scans, been to the eye specialist twice, and I'm work'n on my second Neurologist. As far as treatments go...I had an allergic reaction to prednisone when i had mono so that's out of the question. I've been on verapamil and amitriptlyine. Right now my Neurologist has me taking Topamax everynight along with 325mg of aspirin...aleve when i get a headache with 3-4 baby aspirin...and then if that doesn't help relpax. (doesn't that seem like a lot?) Relpax only helps me sometimes and it's sooo expensive...plus you can only take 3 per week...and since i have chronic ch...that doesnt help me much. In all honesty there's probably only been a handful of days in the last 3 years that i can say i felt good. I am physically and emotionally drained. I am really struggling to find people that understand this--i've been registered to this site for almost a year now...and it's taken me this long to write my first post....i feel as if i'm whine'n.

Title: Re: New to the posts...not to the headaches!!
Post by nani on Dec 12^th, 2004, 1:40am

Welcome Tina and I'm sorry you're here. Aspirin and other traditional pain meds don't help CH. Topamax is a preventative. Many people here have good luck with verapamil and lithium as prevents, too. I'm not sure but I think relpax is a triptan like Imitrex. They are abortives. Oxygen works very well as an abortive for many. Being chronic can be very draining, both physically and emotionally. All types of CH can be. Hang in there. Look around the boards here and at the OUCH site. There is a lot of good info. Print some to bring to your dr. if you think it will help. Pain free wishes to you. [smiley=hug.gif] By the way...feel free to whine...we understand. :)

Title: Re: New to the posts...not to the headaches!!
Post by Bob_Johnson on Dec 12^th, 2004, 10:05am

I'm sorry if this adds to your burden but.... The treatment you are receiving suggests that this doc is not very skilled in treating difficult headache. Have you attempted to locate a headache clinic you can access? Even a long drive is better than ineffective treatment.

Look at my message, in this section, under "New Doc--Monday". This material can give you some material to take to this doc and use as a jumping off point to talk about his treatment.

But, if you are open to making a change, tell us where you live and somone might have knowledge of a good doc/clinic near you.

Title: Re: New to the posts...not to the headaches!!
Post by don on Dec 12^th, 2004, 10:14am

What are the sypmtoms of your CH ?

How often do you get them?

Title: Re: New to the posts...not to the headaches!!
Post by sappygirl13 on Dec 12^th, 2004, 2:47pm

Yes Bob...I am completely open to making a change of Dr.'s. I live in Fairmont, WV. Any help would be completely appreciated!! I started with a Neurologist at Ruby that basically said I made it all up and responded to everything I said and I quote as "not a good story...because migraines are not like that...they're like..." Other than that...his main focus was me doing drugs...which I have honestly never done in my life. So because I feel that this Dr. has completely insulted and disbelieved me...I cannot see another Neurologist at Ruby because it's the hospitals policy that I cannot interchange Dr.'s. So now I'm at another-and really I get lost in how long you should give a Dr. a shot...or even a medication for that reason.

Don,

My symptoms are all right sided. I get extreme pain in my right eye...and ptosis. Sometimes I get a rare version of it in which it really hurts to look up and down but not left to right. I also get immense pressure in my right temple. My eye tears and I am INCREDIBLY light sensitive. I get dizzy and have been known to black out. I do not get a "normal" headache anymore...I don't know if this is classic of a CH sufferer. But I do know that these can be onset alot by smells, hunger, light (bright glares), heat and being sick. As far as their pattern...they pretty much have a presence with me everyday. It's really just the intensity from day to day that changes. Some days I just may feel more "under the weather" but again...it only takes a second to change that.

Thanks guys for all your help...this is really appreciated...you have no idea!!

Title: Re: New to the posts...not to the headaches!!
Post by BobG on Dec 12^th, 2004, 3:20pm

Have you taken the 'cluster quiz' under the button on the left side of your screen?

A couple of questions.......do the headaches wake you from a sound sleep? Do they come on quickly, last 15 minutes to an hour and then go away quickly and completely except for maybe a "bruised" feeling?

Just my 2 cents about your symptoms, I am not a doctor:
Yes = it, in my opinion, is a cluster symptom.
No = it is not a symptom.
My symptoms are all right sided. Yes
I get extreme pain in my right eye...and ptosis. Yes
Sometimes I get a rare version of it in which it really hurts to look up and down but not left to right. Never heard of this so I'll give it a No.
I also get immense pressure in my right temple. Yes
My eye tears and I am INCREDIBLY light sensitive. Light sensitive? Yes INCREDIBLY? No.
I get dizzy and have been known to black out. No.
I do not get a "normal" headache anymore...I don't know if this is classic of a CH sufferer. I don't think this applies.
But I do know that these can be onset alot by smells, hunger, light (bright glares), heat and being sick. Yes.
As far as their pattern...they pretty much have a presence with me everyday. Yes.
It's really just the intensity from day to day that changes. No, maybe Yes.
Some days I just may feel more "under the weather" but again...it only takes a second to change that. No.

Please let us know about the results of the 'cluster quiz'.

Title: Re: New to the posts...not to the headaches!!
Post by sappygirl13 on Dec 12^th, 2004, 4:20pm

I took the cluster quiz yesterday actually...and the only one I answered "incorrectly" was the seeking a dark room one. I know that's not the "norm" for a CH sufferer...but thru all my research over the years...I've found there really isn't a norm. They do hit me instantly...they wake me up in the middle of the night...sound does not bother me in the slightest bit. I usually deal with them by blasting music because I can't have a light on, or watch tv, or be at the computer. And I guess my "under the weather" would be the same as your bruised feeling...sorry...i'm not quite sure on how to term things yet.

Title: Re: New to the posts...not to the headaches!!
Post by ski2k on Dec 12^th, 2004, 4:44pm

Hello from ski2k!

I'm new to the message boards too, but have had clusters for about 16 years.

one thing I have found that all CH sufferers have in common is that we are all different.(well, to an extent)

I also have light sensitivity, and sound doesn't bother me either. So no, your answer wasn't "wrong" on the quiz, we are just a little "special" ;)

Take care and PF wishes

Title: Re: New to the posts...not to the headaches!!
Post by BobG on Dec 12^th, 2004, 4:47pm

Sure sounds to me like you have the symptoms of cluster headaches. Sorry.
Being sensitive to light is not unusual. Some people are some aren’t. Myself, I don’t like it too bright and prefer to find a darker space.
Sound….More than one person has said they play loud music during an attack. Myself, I prefer quiet. Normal voices from the other room don’t really bother me but I’d rather not hear anything.

Leave the Aleve and aspirin in the medicine cabinet. It won’t help with clusters

“i feel as if i'm whine'n”……..go right ahead and whine. You’ve earned it.
“sorry...i'm not quite sure on how to term things yet.” Don’t be sorry. Everybody here came here to learn. Terminology is part of the learning process. Glad you came here but sorry you had a reason to.