New Daily Persistent Headache Support Group

I posted this on the migraine forum too...I've read that many of you have gone to headache clinics and I would like to know more about the process that they take you through. Do they strip you of all your meds and start over? Do they just try to break the h/a that you currently have? Do they actually have any more answers than your neurologist? Any input would be appreciated!!

i have not gone but my neurologist told me a little about it. he said he will send me as a last resort and i think they do take you off the meds and start fresh sometimes. sry not much help. all i know is its a last resort kinda thing!

I am going to one (MHNI, Dr Todd Rozen in Ann Arbor, MI) on the 19th and I know 3 or 4 other people on the forum will be there around the same time. I think they will take you off all of your meds and start over. It is a hassle to go there because I live in Ontario, Canada so we needed to file a lot of papers to get coverage there. There are more people who have actually gone thru it and I'm sure they will talk to you. Good Luck,

Jonathan

Thank you both for the info. My daughter's neuro asked if I had thought about trying one, even for a second opinion. I told him I was a little hesitant, b/c of what I had read. Please let me know how it goes! I hope it works for you, Jonathan.

it truly depends on your Doc. I went i nto inpatient care and had DHE. I wasnt tripped of my meds. Some may. so it does depend on what your doc has planned for you personally.

ok, Jonathan.. what is so special about this place? MHNI... I just got a packet from them. Not even sure how they got my bame and info? but any how.. what do they all know there that other neuros dont? everyone seems to wanna go there. what am I missing?

First of all, they are very professional and very experienced with NDPH (Dr. Todd Rozen). They have an 80% success rate in reducing the headache pain. They also have an inpatient program at Chelsea Community Hospital. There are about 5 people on the forum that have been there and their pain reduced. Susangf told me about it and she no longer has pain.

In Canada, they have a 3 step approach to NDPH. First they give you Gabapentin, then amatryptaline and then prozac. If that doesn't work then they say you have 'Pain associated Disability Syndrome' which is a fancy way to say it is all in your head because you are comfortable with pain. In the inpatient program they have tons of protocols to try and have great success with them.

Good Luck!

i see. have you been or are you going? sorry if you already said this I have not read all the post ..

I have been for the initial consolation and will be starting on Lyrica and Melatonin soon. I am getting lots of test a home and then have to work out the insurance stuff. After all of that we will drive back to the Chelsea Community Hospital for the inpatient program.

I had to have an EEG, EKG/ECG, lots Blood Work, lots Urine Tests, MRV, MRI and a MRA before I get into the hospital. I only have the MRI, MRV and MRA to do and then I can go. I have to do all of the test at home becuase the public health care (OHIP) in Ontario, Canada will only cover them at home and they are a LOT of money. If I can't get the MRIs soon we will try to get them covered by our private insurance and if not, we will pay for them.

I really encourage you to go if possible jacee, it really gets your hopes up and you know that there is someone that really understands what is going on.

Good Luck!

it scares me to be honest. or maybe I am just nieve... why dont all headache docs have the same resourses? to travel there would cost me a fortune. and I see so many people doing it, so it must be good. But what if it doesnt help me then I just spent all that money for othing.

Ya know what I mean. trying anything to get rid of daily ehadaches is worth it. But I am scared at the same time. I cant make that trip over and over for future check ups, I do not have that kinda money.. My neuro is over 2 hrs away from em now and thats apain in the BUTT..

I did get some information from them i n the mail.. I will look into it more.

Thanks for the information and encouragement.

Good luck to you Jonathan when you do finally get to go.!! I truly wish all that go the best of luck.