Options??? Jefferson Headache Center

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brayse3
New Member


Date Joined Nov 2007
Total Posts : 10
   Posted 4/7/2008 1:39 PM (GMT -7)   
I am currently being treated at Jefferson Headache Center. I have been there since January of '06. I have taken numerous medications, and am currently taking Namenda, Neurontin,Nardil, Hyzaar, Labatelol,Clonodine,Procardia(Blood pressure issues), Halperidol,Klonopin, Lodine, Migranal,Toradol Abilify and Magnesium. I have been treated in-patient 2x at Jefferson without much relief. I was wondering if anyone has had similar experience and exactly how long do they continue to work the meds without any success, will they just keep creating cocktails? Should I start researching other treatment options? I feel incredibly frustrated and am in constant pain everyday ,meds don't help and some make it worse!!! Has anyone gone from headache center to another treatment and found help???
 
 
 
                  Thank you, Brayse mad     
 
 
 
                 Tina


dito
New Member


Date Joined Apr 2008
Total Posts : 10
   Posted 4/7/2008 3:06 PM (GMT -7)   
too many meds

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 4/10/2008 9:34 PM (GMT -7)   
Well, while it's not for us to determine whether you're on too many medications, my experience over several years of treatment at JHC is that they do try to simplify your medication regime whenever possible. I too have had two 2-week inpatient hospitalizations at the hospital there and tried dozens upon dozens of drugs/treatments/cocktails. My general impression of the center at this time is this: because they handle the treatment of a huge amount of migraine sufferers, they've designed their program to best serve the largest number of people possible. In doing so, I think they've achieved a very high success rate and national acclaim. However, the disadvantage to this approach is that, in following their typical trial-and-error, "checklist" method, those of use with headache disorders that are particularly refractive to treatment (and somewhat bizarre in the first place) don't really get the type of diagnosis and treatment that we need.

For example, my diagnosis at the headache clinic is "new daily persistent headache"--pretty much just meaning that I have constant migraines and that I don't respond to any treatment...not very informative or helpful! In the last year, my doctor at JHC has told me that they've run out of options regarding ways to treat my head--there's nothing more that they do at the center that they haven't already tried. While I feel that I've received caring treatment over these past years, I've really started to realize the flawed approach they took in my treatment. It was clear very early on in the years that I have had headaches (or, the one long headache) that my head just does not respond to treatment nearly at all. So, my neurologist decided to try every drug that they had available to them in an attempt to find the needle in the haystack. However, they really should have been asking, "What's so unusual about this guy's case that makes it so difficult to treat and resistant to our normally successful methods?" So, now, I plan on seeking out other types of treatments and, especially, more diagnostic, investigative testing. Essentially, I've had two MRIs of my brain and (limited shots of) my neck. Along with a CAT scan, ECTs, metabolic tests, x-rays, etc, I feel like there are really a lot of potentially problematic areas that we have barely explored. So, especially in your case and mine, but also any other person who is having a very hard time finding successful treatment, YES, seek other treatments, seek other approaches, seek other doctors. Even if your current neurologist tells you that there are still more options to pursue, there's no time to waste. No one doctor or center can provide you with the full scope of potential headache treatment, so try to find multiple perspectives. That's where I'm placing my hope for now at least.

Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin

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