Update on Michigan Head Pain and Neurologic Clinic

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Update on Michigan Head Pain and Neurologic Clinic

Post  Pooz51 on Thu Jul 17, 2014 7:52 pm

After having gone to the same neurologist for four years (with no real improvement in either intensity, frequency or duration of my migraines; if anything they have gotten worse) my physician has started to "insist" that I go to the Michigan Head Pain and Neurologic Clinic.  Basically he said he had no other tricks in his bag, and this is where he sent all his patients like me.  I feel like I am being sent to the island of broken toys.

So.  I was doing my due diligence.  I came here and put Michigan Head Pain and Neurologic Clinic in the search bar.  It has been a while since anyone really wrote about their experiences there.

When I look for restaurants or whatever, I expect a variety of responses... good food; bad service; the best place I have ever eaten; don't go here.  Almost uniformly, there was nothing good said about NHMI.  People spoke of going to Ann Arbor and having to wait for a bed (sometimes up to several weeks).  That there were various IV protocols that scared me to death (thorazine?? and high dose benadryl?).  Not only that, but there were a lot of drugs that seemed to be used off-label (like skelaxin, klonopin, flexeril) whose indications in the PDR do not always mention migraines at all.

I keep thinking my neurologist has a "bro-mance" with Dr Saper.  He speaks as if Saper can do no wrong and his methods are "cutting edge".  But the reports I read say Saper, himself, is distant, arrogant and not there at the institute very much.  The day to day decisions are often made by residents and nurses and while they may well be very nice, I want something that works.  My own impression of this "cutting edge approach" is that it is a shotgun method, trying lots of different things to see what works.  And if it doesn't work, you are sent him after a time (up to 3-4 weeks) no better off.  In fact the few that said there was an improvement said it was only an improvement for 4-6 weeks, and then you have to go back.  To Michigan.  Which is quite a way for me.  

I get a migraine EVERY day.  And every medication I have taken that actually works, my neurologist now says to stop.  Medication Overuse Headache is the new disease.  My meds cause my headache.  They didn't start the first migraine!  He says, "Stop relpax, excedrin, ketamine spray."  He wants me to stop everything.  It is hard enough getting through a day with those meds.  I cannot imagine what I'd do with nothing.   And he acts like sending me to MHNI will wean me off of all these meds.

I am not a "trusting person", by nature, and have a hard time just turning myself over to someone I do not know.  I also fear that my husband will not be able to just stay away from work while I wait for a bed and may be treated, yet I need someone there to advocate for me.

So... I am asking a simple question.  Is there anyone out there who went to this institute and got any better?  For more than a few weeks after a nerve block?  

So far, all I have read is marginal.  I'm not asking for a Cure.  I just want some days without a headache.  

Is there anyone on this board that says... Go There!  It is the best thing you can do.  I need some help deciding and will not go out of desperation.

Pooz51

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Re: Update on Michigan Head Pain and Neurologic Clinic

Post  Seaine on Fri Jul 18, 2014 4:07 am

I've never had any luck with doctors treating my daily migraines. If it were me I would not go. Have you read through these forums to see what people have tried? There may be things that your doctor or you haven't thought of.
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Re: Update on Michigan Head Pain and Neurologic Clinic

Post  Jewishmother on Fri Jul 18, 2014 4:29 pm

Where are you located? Can you see a different neuro? After 4 years of no improvement maybe it is time to switch docs? I would do that instead of going to the place in Michigan - it sounds like it is not the right place for you. Have you ever heard of the Diamond Headache Clinic? I have a friend who found success there - though we are all so different it is tough to judge. Please stay in touch and let us know what you decide!
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http://migrainepage.forumotion.net/t4268-update-on-michigan-head-pain-and-neurologic-clinic#39178

Post  Indyjanie on Fri Jul 18, 2014 8:37 pm

I am convinced after 50+ yrs of having migraines ( more recently chronic daily migraines) that once you find a neuro Dr that is willing to stick it out wth u then hang on to him or her. There is no one solution & most things may work for a while if at all & then for some reason it all changes again. This business of rebound is very skeptical. When I have tried to stop taking my Triptans so frequently ,I have just about lost it trying to stand the pain which is so intense I feel like I go to a very dark, nightmarish place that I would not wish on my worst enemy. Well you all know the drill. So when I am dealing w that & I know I have a Triptan in the other room that will relieve this nightmare within 30 " you better believe I am going to take it. Otherwise I would not have a life. I have had chronic migraines for at least 20 yrs  & have taken many Triptans that luckily have almost always worked. They are the only thing that works. I have tried all the oral preventatives, acupuncture, Botox etc.When  & if they come out w a med that directly works for migraine prevention & isn't tailored for something else, that will be our saving grace. Until they find that I would stay w what you are doing or find another local neuro. For now, science hasn't shown these cutting edge ideas are any better than what has been out for yrs! We are definitely due something way better , hopefully sooner than later!

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Re: Update on Michigan Head Pain and Neurologic Clinic

Post  dcook60 on Fri Jul 18, 2014 11:35 pm

it's late here and i have to go to bed.  big day planned tomorrow; having family members for dinner, celebrating 2 birthdays.  if it weren't for the daily triptans i take, i would have no life, either.  and most of the things i plan, like this dinner, would have to be aborted at the last minute.

this used to happen all the time, in my long history of these monster things.  my present internal medicine doctor (primary) has no problem with my taking a lot of triptans, since they are the only things that work for me.

before they were invented, i suffered greatly, as you are, pooz.  all of us here can relate to this kind of hideous pain.  i went to a horrid neurologist who spouted the party line of "medication overuse headache".  i got out of there fast and never returned because it's just not true, in my case. this guy had a closed mind and didn't listen at all.

several other neuros thru the years have also had no more to suggest but the preventives (disastrous for me) and opiates.  opiates make me violenty ill and do NOT help the pain.  

so obviously i am not a drug-seeker, and only some ER docs over the years have probably assumed that. they have mostly given me whatever i ask for, but likely tiny doses of the opiates, and it never helps much.  as soon as i get home, the pain comes slamming back.  

yep, i agree with others to change neuros, find out more about diamond, and we will support you in any way we can.  

you can bet i've also tried nearly everything, including lots of wacko things that were very expensive.  fasting for 18 days on water, sweating 5 hours/day in a sauna, etc. etc.  of course, botox 3 different times over the years.  

dianne (45 years and counting; i know they will never go away but at least i am functional, can get out of bed, and go to work every day at age 74)

p.s. i used to be a trusting person; that's why i tried all the above, ad infinitum.
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Dr. Saper

Post  dharvey713 on Fri Aug 01, 2014 1:42 pm

I saw your post, and had to reply. I am a male migraine sufferer, which I know is somewhat rare. I ran into the same situation, back when I lived in Michigan. Every MD and DO, specialists included, refused to give me an rx for an MRI, and tried every known drug on me. I felt like a human guinea pig. The only relief was either narcotics or Imitrex (very new back then) and then they would send me elsewhere.
So now a prominent neurologist had me addicted to Stadol, as at that time is was not a controlled substance. Synthetic morphine that is now OFF the market, thank god.
I go to see the great and magical Dr. Saper. Spent 2 weeks in his clinic hospital in Chelsea to get me off the Stadol. I finally get a bedside visit from him, and had a question for him. I said, it's a known fact the when some women go through menopause, the develop migraines, correct? He said yes. So I said, well that's a hormone imbalance. Men get hormone imbalances too, right? He said yes. So I asked him if my problem may be low testosterone.
He said, Hmm, that's an interesting idea, we'll have to look into that. Boy, some great and magical headache Dr, eh? I only saw him once, that was it. I was assigned another Dr of course, but the only thing they did for me was substantially lighten my wallet.
Years later, I was living in Chicago and saw a female neurologist there, Dr. Nesreen Suwan MD, 3030 Warrenville Rd, Lisle IL 60532. In one visit, I received 2 Rx's for MRI's.
Come to find out, a rear end accident I had before I starting getting migraines was the root of the problem. Damaged discs in my neck. When I am tense result in a migraine. She put me on  Lyrica and Cymbalta and Imitrex when needed. Remember, this was back in 2005, and these meds were all off label for migraines. This woman is a godsend, and gave me my life back.
I know that Chicago is not all that close to you, but if you can get there, she is worth the drive, I can promise you that. Not sure if she is still at the same clinic or not, you may need to search for her.
If I can help, let me know.
Good Luck
Dan

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