Do you know of a good headache center in the states??

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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/12/2010 7:02 PM (GMT -7)   
There is nothing in Canada and I want to check things out in the states. Have you heard of any good centers with excellent outcomes? Thanks
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


fashiongirl
Regular Member


Date Joined Jun 2010
Total Posts : 27
   Posted 6/12/2010 7:44 PM (GMT -7)   
There is one in manhattan that I've wanted to try for my migraines. I've heard good things. If you google them it should come up.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/13/2010 3:52 PM (GMT -7)   
Suzane,

My neurologist (who specializes in head pain & MS) highly recommends the Michigan Headache & Neurological Institute. On multiple occasions she has discussed the possibility of me doing an inpatient stay there, but among other things, such a stay wasn't practical while I was in school. I have read a lot about this place though & it does sound top of the line. I know that my neurologist has had some good luck sending her "problem cases" (like me) there.

Here is their website: www.mhni.com/

I hope this help!

hugs,
Skeye

LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 6/13/2010 5:30 PM (GMT -7)   
I've been a patient at MHNI since 2001; I was with Dr. Rozen until 2009 when he left for Geisinger in PA. In December of 2010 I started with Dr. Gordon; I'm very comfortable with him and his knowledge.

My migraines (5 different types) are very difficult to control; my most problematic are the chronic daily migraine and the cluster feature migraine. Dr. Rozen brought me back from the brink..an incredible Doctor.

I was in the inpatient unit at Chelsea for 2-3 weeks in 2005; it was there that the true cluster headaches ended; while I still have cluster features (episodic, unilateral, 5 - 9 headaches per day, congestion, agitation, irritation); I don't have the drop on the floor in agony pain that is associated with them; since clusters are more frequently diagnosed in men, I was "interesting". Your current Dr. will not be able to tell you whether you will be admitted into the inpatient unit; only your MHNI Dr. can.

I had quit MHNI when they brought in a Dr. H ooker (yes that is his real name) after Dr. Rozen left; he was worthless..I saw him once?, maybe twice..didn't go back; he left for "personal reasons" and I got a letter telling me I would see Dr. Gordon if I came back. I did so, and my Husband and I both feel like I'm in very good hands.

Have my headaches been "cured", no, but 2 of the 3 are gone, 1 is controlled and the other 2 are better. MHNI has it's own quirks and you need to know how to navigate through their "requirements" (such as seeing one of their psychologists..not necessary in my mind), but I am truly blessed to have them in my own back yard.

I would tell you..I know nothing about Geisinger in Penn, but Dr. Rozen...I would go to him in a heartbeat; he is an AMAZING doctor.

Janice

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/13/2010 5:35 PM (GMT -7)   
Thanks Skeye and Fashiongirl, I will read up on those. My only problem is funding to get there and then the treatment as I am canadian. I will be talking to my member of parliament on Friday and we'll see what he says when I tell him I have been suffering for ten years and can find no answers here in Canada and also that i am turned away at the hospital when i go to get injections for pain. Maybe that will make him think a bit. I also want to get my story in the newspaper and wherever. i'd even get someone to write a book about me if i could. I have heard that if you want to write a book about chronic pain then publishers are very interested.

Thanks once again
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/13/2010 6:00 PM (GMT -7)   
Suzane; MRI's show (on me) the damage that chronic headaches do to the brain; These headaches damage the brain tissue and put you at a higher risk for stroke. When you talk to your Parliament Member, bring the statistics with you.

Good luck.
Janice

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/13/2010 6:31 PM (GMT -7)   
Thanks janice. My headache started out of the blue ten years ago. I have had all the work up done for tmj so that part is ok now but the headaches continune. They are bilateral temples, feels like pressurre, they are continuous, 24/7 and pain score 10/10. The headache has never changed in ten years except between 2005-2007 they were on/off but never a day without a headache. I have seen tons of doctors, done all the meds and done the treatments and nothing helps me. I have had botox, triggerpoint injections, nerve blocks all over my head, neck, face, etc with no help. What do you think? All my dr. say poor prognosis. It could be different if I lived in the states as there are so many headache hospital. here in Canada nothing and no resources for chronic pain so I guess I get to suffer the rest of my life. I have spent the last two days in bed in a dark room and my head wrapped in ice. No fun I'll tell you. It's awful!!! Very inhumane!!
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/14/2010 7:53 PM (GMT -7)   
Suzane,

Best of luck with your Parliament representative. I know how hard it can be for those of us in the USA with insurance to get treatment. I can't imagine coming here for medical treatment with no insurance & not to mention the currency difference. I hope your government can help you out in some way. It's so unfair. I just wish that everyone could get what they needed for free & that people would want to help out other people just to help out.

Perhaps speak with some of your doctors about getting treatment in the USA. They may know of some places here as well. Also, as I've suggested to you before, do look into peripheral nerve stimulators for headache pain. You may find some promising information.

hugs,
Skeye

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/14/2010 9:10 PM (GMT -7)   
Thanks my friend, I've written all this down.

Hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 6/15/2010 12:01 PM (GMT -7)   
I have never been to any "headache centers" here in the united states, but I hope you get a chance to get into one as I know the pain from headaches and migraines. Right after I had my daughter in 2002, i suddenly started getting migraines for the first time in my life, and they where so bad I literally thought I was dying when I had my fist migraine, I was hospitalized for a week. So I started getting migraines one to three times a month with chronic severe daily headaches in between. I also couldn't find anything to help the migraines, sometimes Imitrex helped if I took it soon enough in injections, but for the daily headaches, I couldn't find anything to help. But for a about a year and half, my migrianes have almost disappeared the same as they had appeared years ago, but the daily headaches still come, nowhere near as painful, but I still get them.

I always get my head pain in my forehead, and it has nothing to do with my sinuses, as I guess it's a weird place to get headaches and migraines. BUt nobody should have to live this way, it's basically torchure. And I really hope you find some good treatment and they disappear or minamize in pain. I would have gone to a headache center if i had the money to travel and someone to help take care of my kids. But I know if you try really hard, you'll find a way to get there.

-carmen

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum, Fibromyalgia, Asthma, Depression w/anxiety, Migraines, and Kids!!!

Meds- Suboxone 16mg for pain, Cymbalta 60mg, prilosec, Zyrtec, ProAir inhaler, and the best medication is my puppy, kitty, and 5 guinea pigs!!!

 


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/15/2010 7:24 PM (GMT -7)   
Suzane, I do have another suggestion for you; it may be worth a try....Call Dr. Rozen at Geisinger in PA, ask him if he knows of anyone in Canada. I will also ask my Dr. at MHNI if he knows of anyone....of course, I have to say that I don't see him for 6 weeks..but I will ask.

Hello Kitty..one of my migraine types is always in my forehead; it has to do with the supra-orbital nerve; the only thing that has helped me is a supra-orbital rhizotomy (of RFP). Botox may also help the forehead headaches, although for me, it works some times and then not others.
Janice

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 6/16/2010 12:28 AM (GMT -7)   
LdyJane,

I've nver heard of RFP, I'll defiently look into this!!! Thanks for letting me know about this. My insurance wont cover Botox injections, my neuro has told me that it's usually what she would offer to patients like me, but my insruance (state insurance) wont even think twice about covering this. Just makes me so upset that insurance loves to play doctor with us and tell us what we can and cant have, and I absoutly can NOT pay for it out of pocket, I only receive SSI and child support for my kids, and that's barely enough to pay my living expenses as it is. Actually right now I have to pay $400 for a medication every month that my insurance wont cover, and I have to have it, and their's no cheaper substitution for it....

Headaches and migraines is just a terrible thing to live with, and all the treatments out their either don't work or have terrible side effects. Right now I take ibprofen for my headaches and I'm scared of what it's doing to my stomach. And when I get a migraine, I always pray that imitrex will work or else I suffer BIG time. I use to go to the ER all the time with them, but I learned quickly that the ER doctors and nurses don't treat people with migraines very well, they act like we're a waste of their time and space. I'll even emphasize to them that I don't want any narcotics and they still act terrible towards me, plus I hate laying in the ER in a cold room in an uncomfortable bed with them asking me a million questions, and hearing all the normal ER noises, which make my migraines so much worse, and I usually always end up leaving in the same pain I came in...then I'll receive a letter from the state scolding me for using the ER, so I give up....

-Carmen

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum, Fibromyalgia, Asthma, Depression w/anxiety, Migraines, and Kids!!!

Meds- Suboxone 16mg for pain, Cymbalta 60mg, prilosec, Zyrtec, ProAir inhaler, and the best medication is my puppy, kitty, and 5 guinea pigs!!!

 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/16/2010 1:23 PM (GMT -7)   
 
 
   Suzanne,
 
   I posted ideas in your other thread, I didnt see this one! So sorry! Lots of big huggs!
 
*hugg*
  dani
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2280
   Posted 6/16/2010 6:34 PM (GMT -7)   
Diamond Headache Clinic in Chicago

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/16/2010 6:47 PM (GMT -7)   
Carmen, Botox for migraines may still be considered off-label use, so for many it's a no go. For a rhizotomy or RFP, check with a good...good pain clinic; generally your hospital will have one or, in my case, I have one in a private practice; that is where you will probably find someone who does this...RFP means radio frequency pulse. Without the help of a good neurologist, frequent trips to the ER for migraine is something that either attracts disinterest, or the wrong type of interest.

I wish all my fellow migraneur's good luck and a day of no pain!
Janice
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