POTS relief - could it be?

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Check out this doctor, is it too good to be true? Dr. Diana Driscoll was an eye doctor and stopped practicing due to a combination of ED, POTS (and a couple other things). She has several videos on youtube about these conditions and her symptoms.

She started a website called Prettyill.com at one point. She also started researching the causes of POTS and potential treatments. She is now seeing patients in Texas, USA (I think the clinic just opened Oct 2015) for POTS, EDS, CFS, FM, MS and Mast Cell Disorders. She thinks that all of these illnesses have some common underlying relationship and she is trying to get to the root cause of the problem instead of just treating symptoms as most doctors do. She has developed "The Driscoll Theory".

A first visit to her clinic (POTS Care) consists of an intensive week of testing while she and other doctors determine your diagnoses. As I understand, you will be offered a treatment protocol when you leave and then 3 weeks later, you have a phone consult follow-up. This is all included in the $6,600 price tag for services.

The more I watch her videos, the more I'd like to see her. But I would really like you all to tell me if the theory sounds like a plausible, reasonable idea.

These 3-part videos outlines her theory; I found them intriguing.

Part 1

Part 2

Part 3
 

Sushi

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Sushi

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Just to give you a $$ comparison, all the tests from Cleveland clinic were 21,000 for me. not cause just symptom treatment.
On the other hand...a comprehensive Tilt Table Test with all the bells and whistles and interpretation and treatment with an MD who is an autonomic specialist, was fully covered by insurance.
 
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Which tests are exactly included in the $6600 price tag?
I really don't know @Thinktank, they come up with individualized testing based on your past medical records, presentations, etc. They said each person is different. I did ask if there would be an exercise test, and the receptionist said probably not, only one person had one so far. Big sigh of relief :eek:
 
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I'm going to call and ask for an appointment!

This is such a huge gamble for me. Not only financially, but we live 15 hours away by car and flying is out won't work. We would spread the driving out over 2 to 3 days but it is still hard on me. However, the real concern is how I will be able to make it all day 9:00 - 5:00 in a doctor's office, for 5 straight days.

I have never ever pushed myself that hard. The doc's office said that I could lie down some through the day and they have yoga mats and blankets and pillows. The main thing I'm worried about is the over-stimulation -- I may not be even to sleep at night from it. groan :ill::alien::sluggish:
 

Gingergrrl

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@SpecialK82 Did they explain what they would be doing for five straight days of testing? I will be having autonomic testing somewhere else which is supposed to take four hours plus a detailed consult with neurologist and blood work and it will all be done in one day (unless I decide to do the blood work the following day which I might.)

I do not know the exact cost yet or what will be covered by my insurance but I spent an entire week in the hospital last year due to MCAS/anaphylaxis and my portion after insurance was a fraction of what Dr. Diana's program is asking. What tests can two optometrists legally run and interpret that take a week?

Am not trying to be snarky, and maybe there is more to it that I do not know, but it sounds strange to me. I'd be cautious that the end result is not referring patients to take the supplement that she created.
 

Sushi

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I'm going to call and ask for an appointment!
Having had a lot of autonomic testing and treatment myself, I'd also want to find out a lot more before making such a big commitment of $$ and energy. They might not be able to tell you ahead of time specifically what tests they would want you to do, but they should be able to tell you the tests that the clinic offers. If they are unwilling to tell you this, to me, that would be a sign to be cautious.
 

kangaSue

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Dr. Driscoll says she can pick 90% of cases by looking at detailed images of the fundus of their eyes, not sure if that is just for those with intercranial pressure causing symptoms. Most optometry practices can photograph the back of your eye, I wonder if any optometrist can see the same thing if they know what their looking for.
 
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@SpecialK82 Did they explain what they would be doing for five straight days of testing? I will be having autonomic testing somewhere else which is supposed to take four hours plus a detailed consult with neurologist and blood work and it will all be done in one day (unless I decide to do the blood work the following day which I might.)

I do not know the exact cost yet or what will be covered by my insurance but I spent an entire week in the hospital last year due to MCAS/anaphylaxis and my portion after insurance was a fraction of what Dr. Diana's program is asking. What tests can two optometrists legally run and interpret that take a week?

Am not trying to be snarky, and maybe there is more to it that I do not know, but it sounds strange to me. I'd be cautious that the end result is not referring patients to take the supplement that she created.
Hey @Gingergrrl, thank you for your thoughtful comments, I appreciate the words of caution. That's terrific that you can go to a mainstream doctor/clinic and get autonomic testing with a neurologist. Mine didn't seem interested. I'd be very interested to see what tests they run. Sorry to hear about the MCAS/anaphylaxis, that's terrific that most was covered by insurance.

I do believe, although I don't think I read it anywhere, that her answer to certain problems with the vagus nerve and underactive parasympathetic nervous system are the supplements that she has developed. She does say in the videos, that she does not take an income on the supplements, except for the 6% affiliate fees from Amazon. Of course this can be construed as still an income, lol.

Her treatments are supposed to treat the root problem (vagus nerve and parasympathetic nervous system) instead of treating the symptoms. If that be the case, I'm all for it. I am still nervous about it all.
 
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Having had a lot of autonomic testing and treatment myself, I'd also want to find out a lot more before making such a big commitment of $$ and energy. They might not be able to tell you ahead of time specifically what tests they would want you to do, but they should be able to tell you the tests that the clinic offers. If they are unwilling to tell you this, to me, that would be a sign to be cautious.
@Sushi, you bring up a good point. Yes I will ask exactly that. I think they should just get me a general idea. I believe that some of the week you may actually get treatment (supplements maybe?) and then it is tweaked during the week, according to your results. I am not one to take supplements willy-nilly, but I guess I've reached a point of desperation with my overactive sympathetic nervous system (insomnia for one thing!) that I feel like I need to try something else. I hate to be stupid with my time and especially my energy.

I did call about an appt (I thought I would grab a date now and then I could still cancel later as I learned more). Anyway, they have pre-qualifying questions that the nurse ask me. And I didn't pass them yet. Some items that they look for - POTS, hypermobility, headaches in back of head/neck, gastroparesis, etc. in able to be seen there.

So I have orthostatic intolerance but not really the tachycardia portion of POTS. My symptoms are progressing in this area and I have to spend much of my time horizontal. Anyway, the doctor won't see me if I don't have POTS because she doesn't think she can help me. While I was on the phone, I suddenly realized, I have been on a beta blocker for several years and was taking it the day I had my tilt table done that indicated a normal response. (Don't know why the doctor wouldn't have noticed!!)

I now am stopping my atenolol for some days and will do a poor man's tilt table at home. I email the results to them and if I show POTS, then I will be approved to be seen. So it gives me more time to think and gather questions. Thanks!
 

Sushi

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Her treatments are supposed to treat the root problem (vagus nerve and parasympathetic nervous system) instead of treating the symptoms.
The problem is that not all of us have an underactive parasympathetic nervous system and an underactive vagus nerve. I had the opposite, so needed a very different type of treatment.
So I have orthostatic intolerance but not really the tachycardia portion of POTS.
I also had significant OI but it wasn't from an overactive sympathetic system.