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Cleveland Clinic vs Mayo Clinic


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I am in Houston, and I have had a hard time finding a good Dysautonomia doctor for adults. Most of the ones in Texas are focusing on pediatrics. My cardiologist suggested Cleveland Clinic or Mayo. Are these two the best Dysautonomia centers in the United States? Has anyone been to either of the two? 

FYI, my symptoms do not fit entirely in the typical POTS box, so I need a doctor to be able to think outside the box. 

Here's a quick summary....
Probably had it my entire life.
I was diagnosed when I was 36 years old. 
The sleep disruption and overactive response began in my teens.
Battled through the sleep with anxiety meds until health started to fade around the age of 30.
Three years later, I was unable to work, drive, and for the most part was mentally handicapped. 
Sleep studies showed no Apnea, but 1000s of disruptions. 
After being passed between 100+ specialists in every field of medicine, a lung doctor whose dad was an early pioneer in Dysautonomia diagnosed me.
He gave me a unique mix of meds, and I began to sleep 18 hours a day for about a month, then I had a mental awakening. 
The long term solution for sleep was to stay down 10 hours a night in a room devoid of stimulus.
We could never figure out how to suppress the sleep disruptions, so I slept longer to get the equivalent of about 6 hours a sleep.
AFIBs popped up 2 and a half years ago, and I adjusted everything that was triggering my Dysautonomia symptoms.
I tested out all foods, and I ended up with about 11 to 15 foods that I eat year round.
I do not engage in any exercise that breaks 100 bpm.
I stay away from being exposed to temperatures above 80 degrees.
I limit social interaction with new people.
Most exposure to high levels of stimuli were eliminated.
I have always been at a healthy body weight.

For 2 and a half years, I had a pretty stable run. Then I attempted to scale up my physical activity in preparation of our first family disney world trip. That combined with my wife having a stressful two weeks at her job, most likely triggered another AFIB, followed by another one, and the wheels kind of came off from there. 

My current mix of meds are...
Atenolol 8mg (Works good but I am limited because of a low resting heartrate)

Sleep 
Mirtazipine 15mg
Quetiapine 100mg
Amitriptyline 20mg (delivered intermuscular shot)

I had to go on a blood thinner this past month (Xeralto 20mg).

I also take a couple of supplements...
Magnesium Citrate (1000 mg)
Melatonin (3mg)
L-theanine (200mg)
Fish Oil (1200 mg)

I am ready to get in front of whoever the best doctor or doctors are no matter how far I need to travel. I just need to know where I should go.

Thank you for any and all help.

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  • 1 year later...

I went to Mayo in MN. It was a well run program and very inexpensive, but they could not figure out my symptoms or a diagnosis at that time (2008).  I passed some of the tests like tilt table and failed others like the sweat test. They offered no referrals. I was 85 lbs at the time b/c I could not swallow.  Many of my physicians are trying to get me to go back since I still have no real diagnosis even though it is in the dysautonomia family or go somewhere and they are suggesting Vanderbilt or Cleveland.  Did you go somewhere and if so, what did you find out?

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I was seen for POTS at a Clinic's Cardiology practice shortly before the pandemic and I wouldn't recommend it. I have a relatively complex medical history and went to CCF seeking insight into potential autoimmune or other causes of the recent flare that left me significantly impaired. The doctor I saw there was very rushed (we estimated he spent about 7 minutes with us before turning to us with "Any questions?" and ushering us out the door). No engagement on potential causes, no interest in trying to figure out why I went from functional to not over the space of a few weeks. They are very big on cardiac exercise rehab, and told me flat out that after 2 months I would be able to stop all of my medications (spoiler alert: I haven't been able to stop any of them, even after successfully completing the program they assigned). It's also the kind of practice where the nurse is supposed to ask all the questions and get your history, and then the doctor just shows up and tells you what he thinks--I found that particularly frustrating, because I had no idea what the doctor really knows about me and my background. The bias of the practice seems to be that POTS is a teenager's problem that people age out of (great for those who do, of course, but not helpful for the rest of us) and that deconditioning is the only issue worth addressing.

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On 2/18/2021 at 1:34 AM, Sarah Tee said:

@John316, have you and your doctor/specialist considered the Undiagnosed Diseases Network?

https://undiagnosed.hms.harvard.edu/

This program is great but they aren't getting govn funding and there is at least a 10 month wait and they only select like 10% of applicants. Wish I could get in there! My friend got to go and she was diagnosed with mitochondrial disease. 

 

On 2/19/2021 at 1:57 PM, htberg said:

I have not. Thank you for the referral.

UAB has an autonomic testing lab and they list 15 different types of dysautonomia, though I have not been there. 

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