Nearly 30 years with these headaches. Tried everything and always after some slight success my body would adjust and no longer react to the meds. Started a seasonal road maintenance business around my cycles which have been the same for all these years ( september to april)and have had great business success. Great family, I have anything money can buy, but still have the CH.
currently on amitriptylene and topamax

sorry for the spelling and grammar....its the drugs...or did i say that already   haha


male, 50, Barrie Ontario Canada

Quote:

topamax sorry for the spelling and grammar....its the drugs.

Eeeee-yup.  Dopy-max will do that to ya.

I agree with Linda I was on dopamax and forgot how to spell my name,  and nortrip seems yo be better than amitrip for Ch, sorry for the abrev. I just cant spell.  Phil

Welcome to the board, just passed the 30 year make myself, but have been very fortunate in that lithium is holding strong as a prevent, oxygen still isn't failing me!

Read everything on the board, maybe a combo of meds will do you. Verapamil and lithium has proven a magic prevent for many. Don't give up, we'll help you along the way!

Guiseppi

Guiseppi wrote on Sep 23^rd, 2008 at 10:57pm:

Welcome to the board, just passed the 30 year make myself, but have been very fortunate in that lithium is holding strong as a prevent, oxygen still isn't failing me! Read everything on the board, maybe a combo of meds will do you. Verapamil and lithium has proven a magic prevent for many. Don't give up, we'll help you along the way! Guiseppi

I had no luck with lithium or 25 other meds over the years. Got used to Oxygen which had worked well for a while...revisit it occassionally but never as good as it used to be. Used Verapamil for 9 years and it lessened the intensity somewhat in combo with other meds and then an irregular hearbeat developed ...cleared up as soon as i abandoned verapamil...soon as i tried it again the heart thing started again so no more verapamil.
Topomax at 75 mg and amirtrip at 20mg seems to take the sharp edge off although I still suffer severe Cluster Tic Syndrome in the form of shooting "fireworks" type pain which is unpredictable and the most disconcerting part of my whole cluster experience. These piercing pains come into the head from various angles and you never know from where and many come over the course of a half an hour causing you to physically try and move to avoid them as they "attack" The tic would be followed by a classic cluster headache.For years I had a great neuro who researched this rare phenomenon that affects only some cluster sufferers, but sadly this neuro passed away recently. I will probably start a cluster tic syndrome thread and see how many on here experience it.

Just reaching 30 here as well.
We are so cool, still bangin the head after all these years. I think we should get cookies or something. And I too still have CH. I hate it for us all.
all the best
thebb

wrote on Sep 26^th, 2008 at 4:50pm:

Just reaching 30 here as well. We are so cool, still bangin the head after all these years. I think we should get cookies or something. And I too still have CH. I hate it for us all. all the best thebb

Oh you children!  Ok, I'll make you some cookies -- get out the milk and be still!  :-* :-*  

I love my topamax - have been on it since 99 and it's been my magic bullet. Keeps me sane (well, that's debatable - shut up Chuck!) O2 is my first line of defense (don't leave home without it) and I keep ergotomine around for emergencies.

But except for the "episodic" HIGH cycles, the topamax keeps me down to a mild roar most of the time with only breakthrus and shadows most of the time.

So don't give up -- I thought I had tried EVERYTHING when we hit on the topamax and it just clicked.

Hugs BD

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Oh you children!  Ok, I'll make you some cookies -- get out the milk and be still!

Those big goowie chocolate chip ones will do! 8-)
Thanks BD I can get my milk now.
thebb ;)

It's been fifteen years for me and back then I dont even think Imirex existed if it did I wasn't given it.  So can you tell us the advances in meds and treatment(if any) in the past 30yrs.  Fifteen years ago I felt like I was the only one on the planet with CH's.  When the neuro first diagnosed me he brought ten of his fellow doctors in the room soo I could tell them my symptoms only one of the other doctors had heard of CH's.  Just wondering how it must have been 30yrs ago?         [smiley=birthdays.gif]    Phil

26 years for me and 6 as chronic.  I like big gewey peanut butter cookies or snickerdoodles.
let me know when they are done barbra and i will give you my address. ;D