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

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

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

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.

Quote:

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

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?             Phil