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        New Message Board Archives >> Jan-Mar 2003 >> Doctors just don't get it.
        
(Message started by: eileen on Feb 25^th, 2003, 8:10pm)

Title: Doctors just don't get it.
Post by eileen on Feb 25^th, 2003, 8:10pm

:'( I am having a very hard time finding a Doctor that has any idea about CH. I was just prescribed Lithium and I am not so sure I want to take it. I did try a mushroom (one small piece) and I have not had a headache in 4 days (knock on wood) so I am not sure if I should start the lithium or not. All this meds are making me crazy. WHo do you believe if noone really knows about CH I feel like a the Doctors are just testing this crap on me. I think I would rather just deal with the pain for the 37 days but then again I can't deal with it so I go back to the Doctors. This really is a vicious cycle. If anyone has any input on the Lithium let me know. Also what about Fiorinal w/ codiene? the dr said no because of a rebound headache but I have never had a rebound before not that i can tell the difference. HELP

Title: Re: Doctors just don't get it.
Post by domm on Feb 25^th, 2003, 8:36pm

eileen - I think you're right. That's why they say they're "practicing" medicine. I'd like to find one who knows the art AND science of medicine.
Can't help with lithium. Jonny takes it everyday and probably has some words of wisdom.
Good luck and I hope the beast loses your address - permanently.
PFDANs
domm

Title: Re: Doctors just don't get it.
Post by Karla on Feb 25^th, 2003, 9:15pm

fiorinol was a joke to me. A very small amount of anything is in that and it did nothing for me at all to help releive my head pain. Lithium is great stuff. It cut the number of ha I was having every day down from 8/day to 4/day and lessend the severity of them. I had no side effects from the lithium and thought it was one of the few good medicines I actually tried. I would recomend you try it (900mg) and if you don't get any results try it with verapamil.

Title: Re: Doctors just don't get it.
Post by ave on Feb 26^th, 2003, 5:41am

Eileen, first off, I totally agree with Karla that anything that is a painkiller, anything with codeine in it, is a laugh until it is full of the stuff - and then you'll be dependent before you can say uncle.

On the ouch site (button on the left of this page) you will a.o. find a list of CH-friendly doctors. See if there is any near you.You will also find a load of other information under CH resources on that site.

If you, as I seem to read from your post, are episodic, take care to lay in a supply of meds that help you now, for when lightning strikes again.

Look into oxygen, which has helped numbers of us.

Title: Re: Doctors just don't get it.
Post by das on Feb 26^th, 2003, 8:24am

Eileen,

I was at the same crossroads, although, I like to think that my neuro knows what he's talking about. I was already on verapamil and taking imitrex with no success during a hardcore cycle last year. He then prescribed Lithium and told me my hands might shake and that I could also get poisoned if I took too much of all of the above... So, I decided to dump all my meds in the garbage and tried the mushroom remedy and some oxygen. Worked for me and by the way, I think you need more than a little piece. Don't eat them. They taste much too awful. Go to http://www.shroomery.org/ and get their recipe for the tea.

Anyway, I believe that doctors just like writing prescriptions. It's like a game to them. "Let's see if the pharmacist can read my writing....hahahahah." But seriously, I tried all sorts of meds for about 6 years and decided that the beast will be back meds or no meds. Besides, I'd rather deal with the repercussions of CH than to deal with the side effects from meds as well. No side effects with oxygen (except for dry lips) or shrooms.. at least for me anyway.

Mind over matter. A positive outlook will lick anything..

Good Luck.

Title: Re: Doctors just don't get it.
Post by Bob P on Feb 26^th, 2003, 9:12am

Lithium is a tried and true preventative for CH. Doc Goadsby writes:
"lithium

Lithium is an effective agent in CH prophylaxis, although the response is less robust in ECH and CCH. Renal and thyroid function tests are performed before therapy begins. Patients are then started on 300mg bd and the dose titillated using the protocol outlined in the British National Formulary, aiming for a serum lithium level in the upper part of the therapeutic range. Most patients will benefit from dosages between 600mg and 1,200mg daily. The concomitant use of non-steroidal anti-inflammatory drugs, diuretics and carbamazepine is contraindicated."

Many doctors do get it. It's just that CH is a complicated disease. There isn't one thing that works well for everyone so the docs are reduced to trial and error. Do the footwork and find what works for you.