DBP4620

thanks naomi.... I did see dr weimer he was very nice but didnt really have any ideas besides the standard ones and i seemed to spend more time with his fellow..... have you tried any others?

I have not been feeling well lately and my doctors are all at Mayo. Does anyone have any suggestions about doctors in NY, NJ, or PA areas. If anyone can give a list of names that would be greatly appreciated.... I have looked at the recommended doctors list on the website and tried some but if anyone has other names that would be greatly appreciated thanks again!

what meds if any do you guys take for your headaches/migranes?

I have had many urinary problems and have been very thirsty since my brain injury and POTS diabetes 1 and 2 have been ruled out multiple times and now i am thinking it could be insipidus.... my questions are 1. What kind of doctor would you see to test/evaluate 2. Does it have to be someone with neuro knowledge especially with my brain injury 3. Do any of you east coast people have any dr recs?

Has anyone ever had a MEG scan for either POTS or other Brain Issues..... what has it shown?

Hi sorry to here about your daughter! I would reccomend calling Dr. Brent Goodman at the Mayo Clinic in Scottsdale AZ. I was 20 when Dr. Goodman diagnosed and treated me. The Mayo AZ is great have every speciality you can imagine but is not as big and overwhelming as the Mayo in MN. Dr. Goodman's personal secretary is fantastic and is very helpful in getting appointments sooner if needed. There typical wait is something like 2-3 months. They do have a full autonomic lab in Scottsdale as well. Anything else please ask!

Great timing for this discussion.... I'm coming off Lexapro after a few years of taking 30 a day. I was cut down to 20 for 5 days and then 10 for 5 days. Since I've been off (3 days) I've been feeling terrible like my POTS is heavily exaggerated. Every time I stand I get a sharp wave of dizziness and have also felt very anxious. Does anyone have a good way to come off safely because off course my neurologist isn't calling back! Also does anyone think SSRI withdrawal syndrome can exacerbate POTS?

Arizona is much further than Minnesota from me on the east coast but I guess as long as your flying? The pros to Arizona taking Doctor Goodman out of the equation is that it is much smaller then then Minnesota. There is one main clinic building which is 4 floors and has most of what you will need including the autonomic laboratory, then they have the main hospital building and the hospital clinic building. It is definitely manageable and if you do need a wheel chair while there they have people that come get you with a wheelchair and push you around to your appointments. It is also much quieter in the late spring and summer as the snow birds go home. One thing I can say about Dr. Goodman is that he will definitely respect you and not think that its "all in your head" and will do testing to find out exactly what you do have.

I just got diagnosed with hyperadrenergic POTS and my doc put me on Clonodine which he finds useful in people with our condition.

my doctor told me 5 grams of salt a day but that was because my bp isn't always low and can in fact oscillate between too high and too low, but said he gives suggests 10 grams a day for patients with low bp. He also encouraged me to try to eat salty foods instead of taking salt pills as he felt they were more effective, but obviously talk to your doctor.

that really stinks about the endo im sorry to hear that! I'm not sure if you have given any thought to the Mayo in Scottsdale but I would highly recommend Dr. Brent Goodman there. Aside from the wait being MUCH shorter than rochester I found Dr. Goodman to be extremely comprehensive and caring as well as being very knowledgeable about POTS and dysautonomia. Dr. Goodman was not afraid to order the test that needed to be ordered and was able to get a whole picture of what was going on with me which I really appreciated. Good Luck!

Rockiesgirl- I think it took about 2 months to get into Dr. Goodman (he's only been back in AZ from Minnesota for a few months). It was overall a great experience the Mayo is so organized and well run and just so much easier then running from doctor to doctor the team approach is great. Dr. Goodman is a great listener and will really take the time to get to know what your feeling during your initial appointment. For me he ordered a ton of blood work and neurological tests as well sent me to the GI and EP there as well. I also saw Dr. Lewis who is an incredible allergist to rule out any Mast Cell issues and for other food allergies I've had. Not all the docs you'll see will be as fabulous as Dr. Goodman but they were all very knowledgeable and knew what tests to run. I also got peace of mind by having all the tests I did; that there was no underlying cause such as cancer or thyroid issues. Any other questions please ask!!

Hey everyone first off just want to thank EVERYONE for all the great info on this site. I've been utilizing this site for a few months and just recently signed up after being diagnosed with Hyperadrenergic POTS by Dr. Goodman at the Mayo in AZ. First off for anyone looking for a great POTS doc Dr. Goodman is amazing just wish I can bring him back east with me!! A little about me 2 years ago I suffered a brain injury and Post concussion syndrome.... Along with that My POTS symptoms started heart racing, dizziness, palps etc etc. I was originally diagnosed with Inappropriate Sinus Tach and saw 3 world renowned EPS who all suggested an ablation for my IST. I went in for an ablation this past year and thankfully the EP did it under general anesthesia and couldn't get the right rhythm to ablate and therefore didn't. From there I started the process of making a Mayo appointment and found Dr. Goodman and got my diagnosis. I have 2 questions 1. Has anyone here acquired POTS from a brain injury? 2. Does anyone have bright redness and a burning sensation in their ears.... I've had this and although certainly not my worse symptom is very uncomfortable and seems to be getting worse? Thanks again!!