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10/17/2011 08:24 AM

next month will be 3 years(page 2)

lmfranke
lmfranke  
Posts: 108
Member

Ramilin = What type of treatment did you do for your headaches to go away? I have had NDPH since 4/28/2007 currently on no medications and not seeing any doctors. I was seeing a "wonderful" neuro in NYC but he ended up just pushing a neurostimulator on me - which in my opinion is not an option.
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10/17/2011 07:38 PM
volmad98
Posts: 2
New Member

Hey Mark,

Mine is three years as well roughly about now. Mine is a bit different in that it started as just a sort of lightheaded feeling for about five weeks or so. Then one day I woke up with the pain that has never gone away completely. I would suggest you do follow up maybe even annually with a really good neuro who understands NDPH. If nothing else, they could keep you apprised of any advances. I REALLY like the one I go to at Georgetown, Jessica Ailani. I've noticed a good bit of help from the two meds I take. The work well enough that I can function pretty normally. In fact, I just got a great new job.

So, hang in there, utilize this site to rant as we're probably the only ones that can really ever understand what it's like....we get it when you say, "I've had a headache for three years and nothing works."


10/18/2011 10:10 AM
EmilyR
Posts: 107
Member

My daughter is going on eight years. She has seen the best doctors in the country and tried over 60 medications. She also spent 3 weeks inpatient. She is currently not seeing anyone and is not taking any medications. She has found meditation, yoga and diet changes help more than any medication ever did. These things are not a cure but have helped her deal with ndph. I always thought there must be a doctor or medication out there that will help. I no longer believe that. I believe you have to try things that will help your body not hurt it. That's what the yoga, meditation and diet changes have done. Medications carry with them a host of side effects and problems not to mention they didn't help. I understand the need to search for help but at some point you need to help yourself and do things that will help you deal with your pain.

10/18/2011 08:24 PM
tortoisegirl
tortoisegirlPosts: 3237
Group Leader

What diet changes if you don't mind me asking? Always curious if there is something I've missed. Maybe the combo of stuff since I tend to try one "treatment" at a time and haven't found anything to consistently significantly help besides a few meds and not working (or doing anything mentally or physically exerting). Always glad to read of anyone getting any kind of relief from this pain. Thanks!

10/19/2011 02:20 PM
llee
 
Posts: 16
New Member

Mhensler 1, I have been going to the headache clinic at Johns Hopkins in Baltimore. My doctor, who is the department head there, has not mentioned IV DHE. I have only been a patient there since August, so perhaps it is something they suggest after trying other alternatives first.

I am so sorry your headaches are getting worse! I know stress exacerbates my pain, so I have been seeing a counselor about how to control the stress...I hope this will help me get through the year.


10/19/2011 03:17 PM
EmilyR
Posts: 107
Member

Kate my daughter has found that going gluten free and dairy free helps. She doesn't have celiac disease but eliminating gluten has helped a lot. She also buys organic vegetables and doesn't eat meat or eggs. It's a little challenging but it has helped a lot so that makes it worth it. She does eat fish especially salmon and she loves to cook with a variety vegetables. She does avoid a few though like tomatoes.

10/19/2011 07:46 PM
tortoisegirl
tortoisegirlPosts: 3237
Group Leader

Bummer, because that is the one big diet I did (gluten free vegan for a few weeks), besides the migraine type triggers, caffeine, etc. So glad it helps her. Yet another example of how different this headache is for everyone.
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