Dysautonomia (Autonomic Dysfunction) Community
To anyone who has seen Dr. Grubb
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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To anyone who has seen Dr. Grubb

Im on the waiting list to see Dr. Grubb. Im curious as to what he does for his patients that is so great. My curent doctor said to just eat more salt, drink more water, exercise, take the beta blocker and Midodrine. Although Im doing all of this it doesn't help that much. I just want to make sure before I fly out there that he wont just tell me the same thing as my current doctor.
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612876_tn?1355518095
I haven't seen Dr. Grubb, but from patient reports here, as well as from reading his textbooks, you can rest assured he has a good bit more in his arsenal than what you described above.  This is not, however, to disparage your current doctor.  What you've described is a good starting point and shows that your doctor has some familiarity with what is generally considered a rare condition, in the sense of not being well-known in the medical community.  (I'm guessing that you're diagnosed with POTS, based on both the regimen you've been prescribed and the tags you have on your post.)  

I also want to caution you to be patient, though, even with a renowned expert such as Dr. Grubb.  Treating dysautonomia is largely trial and error because each case is highly individualized and not enough is known about most forms of dysautonomia to standardize treatment regimens more successfully.  It often takes time to try different medications or combinations of medications (as well as lifestyle changes and other "helps") to get to your optimal health.  While it can be frustrating at times, it can help to remember that the doctors are just as confounded by our symptoms as we are sometimes!  I hope you have great success with Dr. Grubb.  

Nice meeting you here on the forum!
Heiferly.
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My husband and I took our daughter to see Dr. Grubb several years ago when she was first diagnosed with POTS.  Dr. Grubb spent three hours with us.  Our original plan was to see Dr. Grubb every 6 months, but our daughter became too ill  to travel so our pediatric neurologist consulted with Dr. Grubb.

Not only is Dr. Grubb one of the most knowledgable doctors in the field, he is also one of the most caring and compassionate individuals I have ever met.  He understands the nuances of POTS and the affects of meds better than any other doctor.  

I definitely believe your trip will be worth it!      
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1561612_tn?1294926503
how did you get on the list to see him?  I was just diagnosed with hyperadrenergic pots and looking for someone to guide us in treatment.  Thank you!
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I havent been on here in a while but thank you everyone for your response!!!

Katie...My mom called the hospital he works at and they said to fax in all my medical records. Just google him, he should show up. I faxed his office almost a year ago and still havent been called about an appointment so do that asap! :)
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