Discussion in 'ME/CFS Doctors' started by lnester7, Aug 6, 2012.
Anybody seen this Doctor ? I am thinking about it for Dysautonomia.
I've heard only good things about him through Dysautonomia groups on Facebook
Can you please give me the FB group? I was looking for the USA one, but end up joining the one in Australia. Would be nice to get some local USA help.
You will find information if you search on the forum at http://potsplace.com/
This is one of the largest Dysautonomia forum. From the main page, look for the link to the forum.
yes, he used Midodrine on me, and he recommends not to use drugs that can make the blood vessels looser, like Trazodone. I eventually stopped going, because I wasn't really getting enough benefit from the Midodrine to justify the trip, but who knows, maybe eventually I will retry it. This was like 7 years ago, so maybe he uses different treatment now. He is good at diagnosing I would say, and good at educating patients. Unfortunately there are not enough "cures" for dysautonomia. A lot of what you need to know can be found online, but sometimes it helps to see a doctor. I am definitely grateful for all the research he has done.
I have been researching this.....I may be wrong but,
Currently, top of my list is Vanderbilt and dr. Stewart's group. They have both been active in cutting edge research ..
You Vanderbilts center is huge compared to other clinical settings, from what I can tell.
I have jmany research papers, if you are interested.
Sorry Inester I stopped following the USA FB group when I found the Aussie one (since I am an Aussie). I can't seem to find it again.
Vanderbilt does have a good center and research but patients reports are very mixed. Some come away feeling that they have had good testing and treatment and others feel dismissed and feel they have wasted their money. I'd guess it depends on which doctor you see and you didn't used to be able to choose your doctor.
Just remembered--he used to have a very long waiting list--6 months to a year. I don't know if that has changed.
Check out this website for info on POTS: http://www.dinet.org
Here's what they say about Dr Grubb:
Thank you all for your replies, Is hard to figure all this out, who to go to.
Sushi, you always have great information.
Anybody know how involved Dr. Blair Grubb is in ME/CFS and postural orthostatic tachycardia syndrome?
That's what I'm looking for.
Another thing to check for: A lot of these docs specialize in pediatric or younger people and pots. Great if you're that age, but if you're not?
An example is dr. Rowe....
POTS was the first thing I was diagnosed with - before I or any of my doctors understood that I had ME/CFS. I also have other dysautonomia sympotms and struggle largely with gastroparesis.
I have seen Dr. Grubb. I have also been to Vanderbilt as a research patient twice. Now, this was 5-6 years ago, but my experience is that Vanderbilt has a better grasp on the combination of Dysautonomia and ME/CFS.
Neither one specialized, nor really focuses on ME/CFS so don't expect either one to really address it. However, both are excellent in helping with ideas for POTS.
I found Dr. Grubb's treatments all made me sicker, and as I began to understand ME/CFS I also began to understand why. The things he gave me worked for many POTS patients, but not all POTS patients are ME/CFS patients. So the medications complicated my ME/CFS. However, he did teach me many helpful things and I still take midrodine on occasion. But I agree that most of this you can also learn online.
When I saw Dr. Grubb, I waited 4+ hours in his waiting room for my appointment. I also found the office to be very very difficult to deal with.
Now, Vanderbilt. I went as a research patient. I spent 10 days - got extensive autonomic testing, as well as 8 days of medication trials. I came home with prescriptions that were helpful.
A couple years later, I had come to understand ME/CFS and they had me come back for another 10 days research. This involved one study that was focused on POTS and CFS. So they do have some knowledge of CFS - though that is not what they treat. I again came home with changed prescriptions that have helped deal with my POTS. And the doctor I saw there still communicates with me through email, though they can not prescribe anything now that it's been several years since I was there.
Please feel free to send me a message if you have more questions. And I highly recommend dinet.org as was suggested above. The forum is very informative.
But also, please understand that many people with ME/CFS have POTS and other autonomic dysfunctions, BUT there are also people with POTS who do NOT have CFS. And these people often respond to different treatments and medications than those of us with CFS.
Hope this helps
@Mellie or @lnester7 or anyone else on PR , I know this is a very old thread but would love to hear any current experiences with Dr. Blair Grubb (if he is still seeing patients?) as well as experiences with Vanderbilt for dysautonomia.
Vandy seems to have incredibly mixed reviews depending which doc you see. Am just gathering info and @Sushi thank you for linking me to this old thread.
I seem to do best with vasoconstrictors like Midodrine which improve my breathing and stamina even though they do not raise my BP. Current theory from my MCAS doc (who is excellent) is that the blood does not perfuse my lungs enough especially when I stand which is autonomic.
To recap b/c I ramble... Would love current info on Dr. Blair Grubb, Vanderbilt or any true dysautonomia docs in the US. Thanks!
@Gingergrrl I went to Cleveland, The clinic is good when you do not have tipical POTs the tests are good BUTTTTTTTTTTTTT $$$$$$$$$$$$$$$$$$$$$$$$$$$$ My bill was about 20K!!!
All I got extra was betablocker, so if you already are on florinef+bb+midorine all you have left is to adjust meds as much as you can. POTs is more about management which you have to learn to do your self and a doctor to prescribe.
@lnester7 Sorry for my confusion but did you see Dr. Grubb or Vanderbilt or someone else? Just wanted to clarify.
It sounds like whoever you saw they only had the standard treatments (I already take a beta blocker and Midodrine) and Florinef was horrible for me so they did not add anything new or unique to your treatment but just did a lot of expensive testing?!!
Thanks again if you can clarify who you saw, I would appreciate it.
@Gingergrrl no I went to a complete hospital in Ohio. Yes the testing was extensive at Cleveland clinic.
Dr. Grubb is in Toledo. He has lots of tricks up his sleeve--if he is still in practice. The thing about Vandy is that you can't choose your doc--kind of Russian Roulette. People seem to do better there as research subjects but that requires a fairly long stay.
@lnester7 So you went to Cleveland Clinic for your autonomic testing and not another place, is that correct? Do you have ME/CFS and POTS/dysautonomia? Am trying to figure out how similar or different we may be.
@Sushi Thanks and I heard the same thing re: Vanderbilt. Correct me if I am wrong, but they are in Nashville, TN, and no connection to Dr. Grubb?
You can also try a Google Site Search
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