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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> wow it is great not to be alone anymore
        
(Message started by: aj8694 on Mar 22^nd, 2005, 4:02pm)

Title: wow it is great not to be alone anymore
Post by aj8694 on Mar 22^nd, 2005, 4:02pm

first I must say this place is great......and when I came here and started to read it brought me to tears (and when you get to know me you will find thats not a easy thing to do)

I have been soooo alone with these headaches for so long.

my name is AJ I am 36 and have had these headaches since 16. I also have a siezure disorder witch they thought earlyer was the reason for the headaches. 10 years ago the said I had "cluster headaches" and started "treating " them as such. I have mine in spring and fall and have had one on remision lasting 12 months.

I do have one now and it is the worst one of my life (and I'm only 2 weeks in)..... this is the first one since remision .....is this common?

ty for letting just vent alittle look forward to talking with you all soo happy I found this place

Title: Re: wow it is great not to be alone anymore
Post by seasonalboomer on Mar 22^nd, 2005, 4:25pm

welcome,

I get kind of weepy reading on this site when i'm in cycle too. so we hear ya there. and in sad movies when I'm in cycle, so I'm the only guy not ready to leave the theatre yet, till I can recompose....

how often are you getting hit? how long are the hits?
doc's got you on any meds for them?

Scott

Title: Re: wow it is great not to be alone anymore
Post by aj8694 on Mar 22^nd, 2005, 5:17pm

Well it seems I have been quite ignorant to the available options .....I am right now taking oral imatrex and midrin with topamax for the headaches but I am asking some questions tomorrow that is for sure but I do take other meds for siezures so I do need to be careful

Title: Re: wow it is great not to be alone anymore
Post by jokrs2 on Mar 22^nd, 2005, 6:13pm

Welcome, sorry you are in cycle right now and I hope it ends soon for you. My wife was in the room when I first saw the front page to this site and as I read the stories I completely broke down. She looked at me and said, "that's you isn't it". I just lowered my head to the table & sobbed. Hang in there my friend. Blessings, Joe

Title: Re: wow it is great not to be alone anymore
Post by E-Double on Mar 22^nd, 2005, 7:50pm

Here is a great resource to know like the back of your hand

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

Is the Topamax being used for CH or to control your seizures??

A lot of us have been on seizure meds/mood stablizers that were perscribed as preventative therapy for CH...some have had success others (me included none whatsoever)

Wishing you the best !!
Best,
Eric

Title: Re: wow it is great not to be alone anymore
Post by TonyG1 on Mar 22^nd, 2005, 7:57pm

Hey AJ - Warm welcome to you .. sorry you're hear for the CH reason and that you're in pain. This place and ppl here are gr8 !! Tons and tons of wonderful information. No, you are not alone! There are many, many ppl here who understand your pain in a way that only one who has CH or supports a CH sufferer could understand.

Wishing you many pain free days & nights (PFDANs)!!!

Tony

Title: Re: wow it is great not to be alone anymore
Post by aj8694 on Mar 23^rd, 2005, 7:58am

the topamax is for both and thought it was working (they started that at the time I went into remision) last year.......I also take trileptal for seizures...
I agian ....If I have to suffer....I'm glad I'm here now just wish I would have found this place soon thank you all very much really

Title: Re: wow it is great not to be alone anymore
Post by zrmulcahy on Mar 23^rd, 2005, 8:05pm

Glad you found us AJ. Your case interests me. I assume you were diagnosed with ictal headaches (similar to clusters but generally happen around both eyes, whereas cluster is only one side of the face)? Then when anti-convulsants didn't stop the headaches they realized it may be something else?
Anyhow, the chtherapy.pdf file is great stuff; hope you can find something to keep the beast caged.

Title: Re: wow it is great not to be alone anymore
Post by aj8694 on Mar 24^th, 2005, 7:28am

my siezure disorder was discovered early because one side of my tempral lobe is larger than the other ..... the headaches where alway thought to be migraine that where apart of my complex siezure disorder

with my siezure disore I rarely follow the norms and thought the same when they FINALY said "you have cluster headaches"

never did much research ...til now ...and boy do I feel stupid....really stupid......

I don't understand why some of these optoins where not offered to me ...(and won't find out til next week)

Title: Re: wow it is great not to be alone anymore
Post by E-Double on Mar 24^th, 2005, 8:37am

Don't you dare feel stupid!!!

Many of us have gone YEARS without diagnosis, misdiagnosis or just inappropriate treatment......

Hell who really knows what is "the best" treatment....
We're all so different due to body chemistry thus responsive in different ways. That's why it is all about tinkering in many a way until you find the right cocktail or as some do go back to bare knuckling it.....or just using abortives.....

Many options it is up to you to decide what is working or not.

Research the best you can and hang in there.

E

Title: Re: wow it is great not to be alone anymore
Post by Sean_C on Mar 25^th, 2005, 8:26am

Glad you found us Aj, lots of great people here.

Sean.............

BTW I sent you a PM, I saw you were from Ma. ;;D

Title: Re: wow it is great not to be alone anymore
Post by aj8694 on Mar 25^th, 2005, 10:21am

tyvm I have noticed that ....ALOT OF GREAT PEOPLE.... and you all have made this cycle alittle more bareable..... and for that there are no words ......