Research from Dr Novak on similarities between POTS and HYCH

[Sarah Tee]

https://n.neurology.org/content/100/17_Supplement_2/3757

 

Also wanted to add that Dr Novak is about to release a study on cerebral hypoperfusion in EDS. Not really a spoiler: he found a lot of people have it, even those without POTS.

(He mentioned this EDS research in his talk at the Dys Int conference. Sadly the audio is awful, so the talk may never be released. They just gave me special access to it because I subscribed and asked. Very sad because almost nobody else talks about cerebral hypoperfusion specifically. Except Dr Rowe sometimes, but he only looks at it in CFS, which is very worthy but not helpful to me.)

[RecipeForDisaster]

Yes, thank you! I am super interested in this because I have HYCH (and who knows what else, but autoimmune SFN is one of them), not POTS, and pretty much no doctors know what it is. There is no ICD10 code or anything. I see Dr. Novak in a few weeks and will chat about this. 

[Sarah Tee]

@RecipeForDisaster, if you have the time and inclination, you can tell him that you know someone in Australia (me!) who is tentatively diagnosed with OCHOS and that his research is helping me after 18 years of illness.

I hope your appt goes well. Do you live near Boston, or is it a long trek for you?

[RecipeForDisaster]

Funny thing is, when I first started seeing him many years ago, he said that he had a patient just like me from Hawaii (he has patients all over the world). I got excited and asked how he helped them, and he said he never figured them out!

 

I will mention that - he might be tickled! It’s a huge pain to go to Boston but it only takes about 2 hours. It’s parking, aggressive driving, and traffic that are the problem.

[Sarah Tee]

Oh no, poor person in Hawaii!

Hope your visit goes well and the traffic isn’t too bad.

[RecipeForDisaster]

16 hours ago, Sarah Tee said:

Oh no, poor person in Hawaii!

Hope your visit goes well and the traffic isn’t too bad.

Thanks! I was so inspired by that and couldn’t wait to hear how he healed that person, and would use that experience to heal me… um, nope. I hate going to the city, but it’s only a few times a year.

[Sarah Tee]

Oops, I meant to say “poor you” as well (not in a condescending way). I hope this new research has given him some ideas to better treat HYCH and that that will help you.

Am I right in thinking HYCH is fairly uncommon? In his first paper on it, I think Dr Novak only mentioned 16 patients, whereas for OCHOS he had about 100. And maybe you are one of those original 16?

Edit: In the paper I linked to, he has data from 72 HYCH patients.

Based on what he said in a lecture, I estimate he has about 130 OCHOS patients now.

[RecipeForDisaster]

8 hours ago, Sarah Tee said:

Oops, I meant to say “poor you” as well (not in a condescending way). I hope this new research has given him some ideas to better treat HYCH and that that will help you.

Am I right in thinking HYCH is fairly uncommon? In his first paper on it, I think Dr Novak only mentioned 16 patients, whereas for OCHOS he had about 100. And maybe you are one of those original 16?

Edit: In the paper I linked to, he has data from 72 HYCH patients.

Based on what he said in a lecture, I estimate he has about 130 OCHOS patients now.

Wouldn’t that be great? He wanted to try galantamine for it, but it kept me up all night even if I took it only in the morning (it made my palpitations worse, too). I may try again. My BP is really low, which doesn’t help. That is not part of HYCH, and is undiagnosed, and makes everything a lot harder to survive and treat. 
 

I think HYCH and OCHOS are uncommon because most clinicians haven’t heard of it and don’t have equipment to diagnose it. I bet there are many more. I had it for at least a decade before he found it. But I have more stuff that is not diagnosed. 
 

I'm sure I’m one of those 16. I remember him saying that the cerebral Doppler was somewhat experimental and that he was doing research. It’s neat to be able to be part of that - I’m always happy to be a Guinea pig.

[Sarah Tee]

I hope you find out about the low BP someday. Do you think it might be related low blood volume? There is a new device for measuring blood volume. Maybe Dr Novak will buy one. I believe they are “only” about $US50,000, plus you need a phlebotomist, a blood gas analyser (in most hospitals already), a laptop, and the occasional cylinder of carbon monoxide. It’s been approved in Europe as a medical device so perhaps it will show up soon in the US.

It’s very cool that you are one of the people in the original study 🙂

[RecipeForDisaster]

3 hours ago, Sarah Tee said:

I hope you find out about the low BP someday. Do you think it might be related low blood volume? There is a new device for measuring blood volume. Maybe Dr Novak will buy one. I believe they are “only” about $US50,000, plus you need a phlebotomist, a blood gas analyser (in most hospitals already), a laptop, and the occasional cylinder of carbon monoxide. It’s been approved in Europe as a medical device so perhaps it will show up soon in the US.

It’s very cool that you are one of the people in the original study 🙂

I do think it’s at least partly due to low blood volume. Dr. Novak doesn’t seem interested in testing for it - I think he just knows I have it and doesn’t care to prove it, but I really do. IV fluids fixes it for a short time, which I guess partly proves his point. He said "it’s just that your vital organs aren’t getting blood" - that’s my problem. Oh, is that it? But who knows, he’s at a very big hospital, so maybe they’ll get the device anyway. They had a Daxor at Yale, though.

 

I really hope I get to help others by making my data available. 

[Sarah Tee]

Oh dear, sometimes they can’t really hear what they are saying, can they.