Welcome!  Join the fun!  You are never alone on this board!  (well, unless you start telling us to use Head-On or smoke crack!!) 

Yeah, why is it when you tell people that it's worse than childbirth, it doesn't seem to impress them?    (I've likened it to giving birth outta my eyesocket, too!)

-Paige

Hi, another left coaster here.  I'm in Redding.  I'm going to ask you some questions here because I'm not sure if we all understand what you're saying, so bear with me because we really want to help if we can.  I'm not a Dr. but I've been chronic for 22 yrs. now, so I have some experience in these damnable headaches.

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Are you saying you had a 15 yr. remission and then they came back?

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That's great.  Would his name by any chance be Peter Goadsby?  If not, could you share the Dr.s name who reccommended you to this place.  Often times newcomers ask for a Dr. name for where they live and recently we've had a whole slew of them asking for one in the SF area.

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  Not understanding this at all.

Can you tell us what your Dr. is doing to get them under control.  Are you using oxygen or any thing else as  an abortive?  What preventatives does he have you on? 

  Linda

 

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Yes. I didn't even keep aspirin in the house. Or bandaids.

My SF doctor is Abraham Nagy, who works out of UCSF and the Headache Clinic. You need to be referred by your primary doctor and it takes about six months to get an appointment but it is SO WORTH IT.

I can even recommend an inexpensive hotel just blocks away (Cathedral Hill). Ask for a quiet room, with parking included. It is less than $150/night. Several good places to eat within safe walking distance. Close to Union Square, Fisherman's Wharf, Japantown. Across the street from a HUGE AMC theater. There are nicer places $$$$ but I've stayed at CH a dozen times and like it just fine.

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Prior to a huge headache, I will not be able to sleep. I'll be up for several days flitting around and then I'll get a terrible head. Everyone can see it coming and nothing seems to avert it.

I'm taking 150 mg of Topamax morning and evening, along with 160 mg of Inderal in the morning, another 50 mg at lunch and another 40mg at night. I have spiking blood pressure with my headaches that is pretty scary and have been toted off from work in an ambulance more than once (I work at a super max prison and we have an ER right there for obvious reasons).

I am just now starting oxygen and some kind of V medication. I have Maxalt that helps and Imitrex shots that help sometimes, except they make me feel like my hair is on fire. Morphine has never helped. Not ever. It makes me feel like a caged animal.

What always DOES help is a massive shot of Demerol, phenigin, turidol and Benydrl, which is more to lower my blood pressure so I don't have a stroke than to stop my headache.  Long term, not the solution I'm looking for but short term, certainly one that works. 

One thing that helps manage this at my workplace is that my supervisor also has CH, as do two other women in my department. So I have a really good support network.

I'm glad I've found you guys...already, I feel less crazy.