New Headache Clinic?

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Regular Member

Date Joined May 2007
Total Posts : 328
   Posted 12/11/2007 6:19 PM (GMT -6)   
Hey guys,
I've been posting here for a while now so many of you might have some idea of my story already, but here's a condensed version.

Five years ago I started getting 24/7 migraines/headaches, which haven't stopped since. They are very resistant to drug and alternative treatment. Easily diagnosed as New Daily Persistent Headache. Haven't had a pain-free day in those five years, nor have I really even gotten close. Originally I saw an independent neurologist who was a great doctor but after attempting to treat me for 2+ years (as well as running every test short of a spinal tap) he had no further ways to help and referred me to the Jefferson Headache Center in Philadelphia. There I went through every preventative, abortive and treatment that they perform or prescribe. I had Botox injections, nerve blocks, nerve stimulators implanted, two hospitalizations for 2 weeks each that included Lidocaine IV infusion at the highest dose they allow. Needless to say, no success whatsoever. My baseline is around a 7 and I have a few abortives at home that'll reduce a 9 or a 10 to an 8 (or something similar). Recently, since we were out of options the VERy anti-narcotic clinic prescribed me oxycodone which I tried with some limited relief (down to a 5 on good days, higher most of the time). I then tried Oxycontin (which is Oxycodone ER really) and things actually got worse. I'm currently in the process of switching to hydromorphone (aka Dilaudid) but not having much luck there either. I'm better with the narcotics than without them but I'm still not well enough to work or finish my degree (fifth year of working at it; I could have graduated in three without the migraines).

So essentially, all we're doing at Jefferson is trying to find a narcotic that'll help relieve my pain (don't misunderstand, Jefferson is a fantastic treatment center, I'm just a tough case). For all you anti-narcotic people out there, I totally recognize that this isn't a solution and may lead to bad things, so I'm itching for something that's actually productive. So, bearing this all in mind, I've been thinking of going to another clinic, at least for a consultation, to see if they can offer me something further. Does anyone have a recommendation for a clinic near Pennsylvania (I travel between Pittsburgh and Philly very frequently so any direction is fine really) such as in New England, New York, the East Coast or the mid-northeast? I know many of the clinics in the area, I'd just like personal opinions.

Thanks so much,
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Ambien CR, Rozerem, Emsam, Namenda
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Oxycodone

Regular Member

Date Joined Feb 2005
Total Posts : 242
   Posted 12/11/2007 9:33 PM (GMT -6)   
Hey Ben
I am in the Mid Atlantic (Richmond, VA)and the 4th neuro I have seen in 3 years told me that I would need to go to Maryland, Philly, NY or Chicago before I found anyone that could help me in this area. GREAT!!!! Thanks for the confidence doc! I have been to every hospital and headache practice around here that took my insurance, and still have a daily migraine. Only hope I have is that we are being transferred to San Francisco, and I am hoping they have new ideas out there for me!

Hope this helps.
I have had migraines for 25 years. NEVER ENDING MIGRAINE since August.
I have tried so many meds I have forgotten their names... try to list those I can abortives: frova, amerge, axert, imitrex, migrainol, DHE, magnesium sulfate

preventatives: depakote, topomax, keppra, lyrica, amitriptilyne, ridlin,

There are many more that I will list as I remember!

I also have UC which is in remission at the time being.

I am currently taking the keppra and lyrica along with the magnesium twice a day and ridlin once at 8 am and noon for the migraines. It has slowed them down, but nothing has stopped them.

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