Dysautonomia International 2018 Conference

[jpcv]

"The Altitude Test" was an inside joke...@sushi and I both in live New Mexico at high altitude. My residence is at 7,200 ft.

I have not tried fludrocortisone. I'm on midodrine, desmopressin, and metroprolal. But, will be greatly increasing my salt intake after this conference. I did take salt tablets before, but clearly should be taking more.

Pretty high for my taste, I think I have mentioned that on my trip to NY there was a stopover in Bogotá, around 2600 mtrs (around 8500 ft), and I felt terrible.

 

[Diwi9]

@jpcv - I have a fantasy about moving to sea level in California, but it's not going to happen anytime soon. BTW - Happy Birthday

 

[Sushi]

Sushi:
Were you able to get any actionable advice from your Dr. regarding sleep issues after doing the home sleep test.

Yes, though not as much as you would have gotten because my oxygen stayed steady as did my HR & BP. She did suggest medical cannabis for the sleep onset, get back to sleep issues and that has helped a lot (it is legal here).

I wake at 3-4am and then never get back into deep sleep again. Wake with a huge spike in HR and drop in BP....this discovered when I had a pulse/ox reader on finger (?) and a watch like thing that measured my blood pressure/HR for a research test I was in .

Research is great but you do want something to emerge from it for you.

P.S. Perhaps in a PM...how does Medigap work vs. having 2ndary insurance...which is a plan thru my husband (very expensive and causes lots of problems w/Medicare)

That is an easy answer for me because I am not eligible for any other insurance and so have no knowledge of how they work. I have only had Medigap which seems to work perfectly: Medicare pays their 80% and then sends it on to my Medigap company which pays the rest.

 

[Navid]

Sushi:

Thanks for all the great info.

 

[JaimeS]

Maybe they did invite some, maybe not?

.....they did. But I didn't inquire as to whom. I mentioned that for next time, we for sure could help them find somebody interesting. I thought for example that Rowe, Perrin, or that new German researcher that found all the autoantibodies might be interested in coming. Her name escapes me now, but I mentioned her at the time.

 

[Sushi]

This article on CNN is a result of the Conference: https://forums.phoenixrising.me/ind...-common-condition-youve-never-heard-of.60539/

 

[JaimeS]

My cardio told me to load salt and try salt tablets but the tablets nauseate me

ONE of my tweets talked about this... Dr Raj said SOMETHING about how you get less nausea if you....


AH HA: I found the thing

https://twitter.com/i/web/status/1010972444125954049

Click on the above for the thread that mentions nausea -- basically there's a buffered kind of tablet that patients say helps.

 

[JaimeS]

Have any of you tried fludrocortisone?

Ahhhhh well. Hydrocortisone. Went about as bad as you could possibly imagine.

 

[Sushi]

Click on the above for the thread that mentions nausea -- basically there's a buffered kind of tablet that patients say helps.

Well, that's interesting! She says as she drinks Very veggie (V8) with added salt.

 

[Gingergrrl]

This article on CNN is a result of the Conference: https://forums.phoenixrising.me/ind...-common-condition-youve-never-heard-of.60539/

I read that article on my CNN App today and was going to post it here but you were faster!

Great article.

 

[Gingergrrl]

or that new German researcher that found all the autoantibodies might be interested in coming. Her name escapes me now, but I mentioned her at the time.

You are talking about Dr. Carmen Scheibenbogen and I agree, she would be a great addition to the conference. There is a huge sub-group within POTS that have Autoimmune POTS (like me) and she is researching all of this.

Jaime, was Dr. Jill Schofield at the conference?

 

[Diwi9]

Ahhhhh well. Hydrocortisone. Went about as bad as you could possibly imagine.

Carmen Scheibenbogen at the Charite in Berlin. Another thought would be Michael VanElzakker considering this year's discussion on vagus nerve stimulation...he may be able to tie some thoughts together through his own work.

 

[JaimeS]

You are talking about Dr. Carmen Scheibenbogen and I agree, she would be a great addition to the conference. There is a huge sub-group within POTS that have Autoimmune POTS (like me) and she is researching all of this.

Jaime, was Dr. Jill Schofield at the conference?

Actually I don't think I saw her. And she definitely was not a speaker.

 

[Gingergrrl]

Actually I don't think I saw her. And she definitely was not a speaker.

Thanks and I was just curious. I saw one of her video presentations on autoimmune dysautonomia, which was phenomenal, and ended up exchanging several e-mails with her re: my own case. She is in Colorado and has a 2+ year waiting list so it was not an option for me to see her. She is really one of the emerging leaders in this field IMO. I assumed she would be at the conference and would have been an asset to hear more about her work using IVIG for POTS, testing for more obscure autoantibodies causing dysautonomia, etc. Maybe next year!

 

[JaimeS]

She is really one of the emerging leaders in this field IMO. I assumed she would be at the conference and would have been an asset to hear more about her work using IVIG for POTS, testing for more obscure autoantibodies causing dysautonomia, etc. Maybe next year!

Dysautonomia International has interviewed her once or twice! It may be that she had some kind of conflict (or was simply an attendee I didn't meet... it was a huge conference).

 

[Diwi9]

Looks like at least one video is up from the conference already (Nick and Tori Foles), I'll have to scroll through the rest to see if any of the presentations are posted, but here' a link to their videos: https://vimeo.com/dysautonomia