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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new to the site, not new to clusters
        
(Message started by: amboo213 on Mar 19^th, 2004, 5:30pm)

Title: new to the site, not new to clusters
Post by amboo213 on Mar 19^th, 2004, 5:30pm

hello . . . i found this website because someone read my online journal, and told me about clusterheadaches.com. my name is amber. i'm 24, and i have suffered episodic cluster headaches since i was 13 (maybe longer, but i can't remember). until i was 19 my headaches were misdiagnosed as sinus headaches or ear infections or such.
my headaches used to come for about a week or two every 14 months. when i was on birth control i stopped getting the headaches, however the bc pills made me severely depressed, and i stopped taking them last april. the cluster headaches returned this year on february 13th, and for the first time ever they've lasted for over a month.
when i saw my doctor in february i was actually suffering a full-blown, severe attack right there in his office. he gave me an imitrex shot which worked fantastic. he prescribed 100mg imitrex pills for me to take. turns out they worked if i took them right at onset, but if my cluster was already in the worst stage (the watering eye and nostril and the debilitating pain), the imitrex pill didn't do anything, and i'd often end up vomiting soon after taking it.
on my next doctor visit he gave me relpax, which worked just like the imitrex: take it right at onset or get no effect. he also started me on elavil (amitryptyline, 25mg). it doesn't prevent the clustes, as my doctor said it should, but it has made them much more tolerable, and it knocks me out at night, so at least i can go to sleep without being terrified i'll wake up in the wee hours in pain.
however, i'm concerned about the side effects of elavil, and i'm almost certain they're giving me anxiety and/or depression (although someone told me that the headaches could be the cause of that).
i took this week off from work in the hopes that being stress-free for a week will end this year's cluster session . . . but it hasn't worked so far. i've only ever been an episodic sufferer, but it's going on week 6, and i'm afraid it's becoming chronic.

so that's my info in a nutshell.

Title: Re: new to the site, not new to clusters
Post by Shameless on Mar 19^th, 2004, 5:45pm

Hello. I just got done reading your post...I'm a newbie here also. (Also a newbie to cluster headaches...mine just started in January, and haven't ended yet.) Anyways, I just wanted to let you know that amitryptyline is an anti-depressant, so that may not be what's causing your depression. From what I understand, depression is relatively normal when dealing with any type of headaches, but ESPECIALLY clusters. If you're too concerned about the side effects, just bring it up to your doctor, that's what he's there for. Good luck finding a medication that works for you. So far it sounds like the doctor's on the right track anyways. Take Care!

Title: Re: new to the site, not new to clusters
Post by Belle on Mar 19^th, 2004, 6:16pm

Hey there Amber!

Welcome to the group but sorry you have to be here. I take 125mg of Amitryptyline at night. I takes 2 to 3 weeks to kick in. They have shortened my cycles from 6 months down to 3 months per year. But I do still get depressed. It comes along with the territory I believe. Dealing with that much pain for long amounts of time would make anyone depressed. And that's what we're here for. Whenever your feelin down come talk with someone. There is always someone here at all times. We are each others support group and don't ever be afraid to ask. Read all you can and give us all your experiences so that we can learn from them too. Take care and keep your chin up, girl.

Belle
::)

Title: Re: new to the site, not new to clusters
Post by Superpain on Mar 20^th, 2004, 12:16am

Welcome Amber!
I wouldn't worry about being chronic.
It sounds like you've so far been blessed with short cycles.
Mine have gotten longer every time, but I never had the luxury of anything less than 4 or 5 months.
Hope it ends soon!

Title: Re: new to the site, not new to clusters
Post by Bob_Johnson on Mar 20^th, 2004, 7:31am

Is there any reason why you could not continue on the Imitrex injection, especially since it worked well?

Imitrex pill is now available in a new formulation which dissolves faster than the earlier version. It may work faster; be sure to identify the type you have.

Explore www.headachedrugs.com for other ideas. An excellent site run by a good headache doc. Be patient; the layout of the site is not the best.

Title: Re: new to the site, not new to clusters
Post by CPM on Mar 20^th, 2004, 10:55pm

Amber,

Glad you got directed to this site. The folks hanging out here are the BEST and not only 'cause they understand CH but I think CH also creates a genuinly understanding person. The misdiagnosis is just too typical and it's even more unfair for a 13 yearold to get this. I'm not exactly the medicine man since I refuse to pop any kind of pill short of asperine, and that only for hangovers which I have never had. So side effects of pills, depressing or anti I'm absolutely clueless of. What I do know, is that many of my friends and colleges have been dealt much crappier cards than I have. My outlook on life is that it is generally not too shitty despite CH. Don't let it scare you to have this one last longer than the others.

Best Regards

Pete

Title: Re: new to the site, not new to clusters
Post by TxBasslady on Mar 23^rd, 2004, 2:29am

Hi Amber,

Welcome to the board.

I have to agree with Bob. If the imitrex shot worked... then why the change in meds? The Imitrex injections are available by rx. Seems like the doc would have given you rx for it.

Have you tried 02?

PF vibes,

Jean

Title: Re: new to the site, not new to clusters
Post by kimblin on Mar 23^rd, 2004, 2:56am

hello been there with all the misdiagnosises :-/i wear a tight hat to bed like a knit cap and take tylenol every nite before bed it helps some i get so depressed getting up at always 2 -3 am 3 -4 x a week :-[ i just pray alot and maybe sopme day they will go as mysteriously as they came
love ya
kimblin ;)