MAYO or Vanderbilt? Which would be best?

[SammyJo]

I have had POTS for 4 1/2 years now and was doing somewhat better, then this year my health started deteriorating and I developed new symptoms too. I was also a participant in the Vanderbilt research study. During this study they provided no treatment or answers as to why this happened etc. They just told me things I already know to do in order to manage symptoms. Since things are not going well anymore I am thinking about going to MAYO in FL but I know the Autonomic Dysfunction center at Vanderbilt will see you as a patient also. My goal is to get answers, check how my body is doing, figure out these new symptoms, possibly find any genetic problems that cause this and discuss a new "treatment" plan. If anyone has gone to either of these facilities or has a recommendation for a doctor in the US (I live in GA but will travel to another state need be), please let me know. This journey is so exhausting, I can't work or be a regular 25 year old. 

[HangingByAThread]

Hi SammyJo,

When you say you were in the Vanderbilt research study do you mean they checked you in sort of as a hospital patient and ran a battery of tests on you? (I've seen this mentioned on their website).  I only was seen there as an outpatient last year, not in the research study.  I came in for a bit of autonomic testing which was followed by a very long consult.  I was given a list of  3 different medications to try (starting with the most benign - the others were just in case the first one didn't work).  I was worried about the meds affecting my nightly heart block so I asked if they could give me a heart monitor and they did so they were able to see that being on the meds for a month didn't adversely affect me.  All in all it was a very good experience but I still don't have any answers about why this happened to me.  Have you had any autoimmune testing? I'm currently in the process of trying to rule out Sjogren's and during that testing I was urged to see an EDS specialist because they suspect a hypermobility syndrome (but the wait for that is so long that it won't happen until at least the summer of 2018).

[firewatcher]

SammyJo, have you contacted the team at Vanderbilt? As a patient (even research) you should be assigned to their patient portal. I have always gotten quick replies and help from them, though they do not "treat" POTS by prescriptions or regular follow up. I have only had good visits at Vandy and have not been to Mayo. As for Georgia...yeah, good luck with that. I live just South of Atlanta and can't find even a regular GP or Cardiologist to touch me. University of Alabama in Birmingham has a "Mitral Valve Prolapse Center" that supposedly also treats POTS, but I have not ever been there. Let me know if you find a doctor around us!

[Guest KiminOrlando]

Hi SammyJo. I have been to both Vandy and Mayo Florida. If you choose Mayo, I would only see a certain neurologist, Dr. William Cheshire. He is well known and published in dysautonomia. If he is managing your case, he will make sure you see the right people in other specialties.

I went to Vandy and they started the ball rolling with real testing and meds. I saw Dr. David Robertson, but there are so many good doctors there, I'm not sure it matters. I was referred to Vandy by the Medical University of South Carolina in Charleston by my Cardiologist. At the time MUSC didn't have the tools to do full testing. MUSC has just opened A POTS clinic. It is being run by Dr. James Glenn. I still drive 6 hours from Florida to get to them. I've been doing that for 10 years. 

I think you would be ok at either place if you are picky about Mayo. If you are in the part of GA that is close to Charleston, you might want to give Dr. Glenn a try and see if he can sort things out. 

I doubt you will leave with concrete answers and a trratment plan that makes you fully functional no matter where you go. That just isn't how this disease works. They try the first med. It fails. They try the next one. The side effects are as bad as the disease. Move on to the next med. Insurance says no. Fight the insurance. Win. Try next med. It makes things a little better. Retest to see how results are different on this drug. Add another drug. New symptom. From new drug? Stop new drug. 

Dysautonomia teaches us patience and humility.

Good luck on your journey.

Kim

[SammyJo]

Thanks for the helpful responses! In the research study the did do a series of basic tests, and an experimental "vagal nerve study" which had no effect on me. They did not do testing that would indicate a specific cause, just testing for POTS specifically. So just cardio stuff for the most part. I never got to see the blood work results and they really didn't talk about why they took blood etc. My cardiologist is focused primarily on my dizziness. Pushing water, salt, compression stockings, bp meds, and exercise claiming that I can be "cured" and its pretty much up to me to get better. Other than his off-putting attitude, he does know a lot and is the only cardio in GA that is familiar with POTS patients. I went off of midodrine for the vanderbilt study, stayed off of them for a year or so, then tried going back on them and had weird side effects. Changed to fludrocortisone (sp?) and I have opted to wait a little longer to try that medication. This cardiologist also feels I have EDS type 3 hyper mobility but I was a dancer most of my life so... I don't know if I fully agree with him and there is no real tests for EDS type 3. I just want to figure out why I have this for my own peace of mind. It is also important to me to go to a bunch of specialists/MAYO because there could be other "treatments" that go with other health issues I don't even know I have. My new symptoms that are scaring me are occuring when I lay down... Pots is all about standing right? When I sit down for a while or try to sleep at night my bp is low of course, but unfortunately the only way to describe how I feel is "funny" and I have to sit up and walk around for a bit. Something just isn't right but I can't go to a dr if I don't know how to describe how I feel. So now I can't walk around, I can't sleep, WHAT... 

[Guest KiminOrlando]

Well, you may be chasing something that you will never catch. I've had this for 35 years and I don't know the cause. Most doctors aren't interested in looking for a cause because it really doesn't accomplish anything but satisfy our curiosity. If you are expecting to find that through Mayo or Vandy, I think you could be wasting your time and money. They never addressed that with me. I'm not trying to be negative. I just want to set your expectations.

Fludrocortisone made a huge difference for me. It didn't make me 'normal', but it made my life better. Since you doctor thinks it will help you, maybe you should consider it. I didn't do well on Midodrine either. What are you worried about with the fludrocortisone? Maybe we can talk this through. Is it just the frustration of taking another med when you aren't really sure why?

About your 'funny' feeling when you sit down... have you used the search feature and looked up hyperandregenic POTS? Search some of your symptoms (restlessness) and read what others have said. You might be surprised at what you find. I don't have those symptoms, but I think I remember reading about it from other people.

Hang in there. If there was a place to go get those answers, I would already be in line.

Kim

[firewatcher]

SammyJo, As awful as it is to hear, sometimes there is no "cause" and even if the "cause" is found it does not mean there is a treatment. Have you checked into Ehlers Danlos? https://www.ehlers-danlos.com/eds-types/  I seem to remember there were many tests for that, from flexibility scores to genetic testing, etc. Vanderbilt has a bunch of specialists; I saw cardiology, neurology and endocrinology when I was there, and I've been there 3 times. I still don't have a "cause." 

For many of us, we have to do our OWN research on this stuff. One of the few doctors I still trust told me once "no doctor is going to have the bandwidth to figure all this stuff out." There are simply too many variables and systems involved. I research on PubMed.gov which contains almost all the medical abstracts for papers published in the last century or so, they have a handy search function and often the articles are available for free online. Many rare diseases, like EDS have websites and support and education, often with lists of doctors who treat that condition. 

[Don]

Hi. I am diagnosed with autonomic neuropathy and am currently receiving care from Mayo (FL).  My neuro is Dr. William Cheshire.  I have received great care so far.  Dr. Cheshire has been pretty good.  He didn't have all the answers but he was good at referring me around the medical center to see the specialists I needed to get the answers I was looking for.  With the collaboration of all my physicians, I have a diagnosis (which I didn't have before) and an answer as to what caused my illness.  I am currently undergoing a work up for chronic GI issues.  I had several tests yesterday and have several more next week.  It is very nice to have all specialties under one roof.      So far, I am pleased with my care.  My case is extremely complex.  

[htberg]

I went to a Mayo (not FL) twice and while I loved that everything was under one roof and the specialists talked to each other, I was not given any answers for why this happened (geneticist didn't feel it was worth doing any genetic testing), how to prevent it from getting worse (motility--bladder, bowel, esophagus; very low heart rate, inability to sweat, low BP), nor any referrals for specialists in my area. They basically said, "Go find someone in your area that knows about dysautonomia and autonomic neuropathy." Well, haven't found anyone yet and that was 9 years ago.  I hope by now they have a referral list to offer their patients. This is a difficult condition to manage on your own.

[SammyJo]

I heard Dr. Cheshire was very good but unfortunately he is booked for another month or so? I was able to get in with a cardiologist at MAYO August 29th. It is nice all the doctors are under one roof but unfortunately they don't keep you there a week and give you your own team like they used to. From my understanding they set you up with the cardio etc. then go from there if THEY feel you should see other doctors.. So I'll see how this appointment goes hopefully they can help a little bit. I thought I was getting a lot better, even able to hike mountains with friends. After a battle with some tonsil issues for the last month I've been having really weird symptoms and old symptoms come back. Not sure if its all the antibiotics, a virus, bacteria, idk but something has severely ticked off my POTS. 

[Don]

I've been at Mayo in FL for the last 2 weeks for GI appointments.  I had a GI doc outside of Mayo that tested for a few things but he just brushed me off.  I told him all my symptoms and that I was incontinent and his reply was just "we'll take some fiber, that should help".  Then he walked out without further discussion. As far as Mayo goes, they read my previous GI records from my other doc and they weren't satisfied.  My Mayo GI said she felt like the other guy didn't even try.  The tests I'm doing currently for Mayo are things that have never been done with me before.  Mayo is being extremely thorough.  Today I had a gastric emptying test, I'm also due to have an upper endoscopy with dilation.  Wednesday I have more tests.  Then I see my GI for the results.  From what I gather, the docs are finding things about my body that were previously unknown.  My overall experience has been positive.  

[SammyJo]

I'm so glad you have all had generally positive experiences. The cardio I saw told me everything we already know about pots and guaranteed I'd get better 6-9 months with exercise, salt, etc. That comment made me a little angry honestly because if that was the case I would be "better" after 5 years of this.. I am waiting to schedule with Dr. Cheshire to do some more digging, but on the cardio side everything is "normal". Doing a 24hr urine collection to check for MCAS, and doing a 30 day heart monitor yet again to just make sure. I would like to proceed with neuro bc I feel like there are other things going on that the cardio doctor just shrugged off and I've never seen a neurologist that knew what pots was so I'm interested to see what his point of view is.