Dysautonomia International 2018 Conference

Sushi

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I'd love to have a full TTT done. Right now the only affordable and readily accessible test is our well-known altitude test...best of all, it's free!
It's free and we get to do it every day! :rofl: I've had the full TTT with about 7 autonomic components. Ended up with a BP of 88/80! It was hell but gave a lot of good data--and insurance paid for it.
 

Diwi9

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It's free and we get to do it every day! :rofl: I've had the full TTT with about 7 autonomic components. Ended up with a BP of 88/80! It was hell but gave a lot of good data--and insurance paid for it.
After following the tweets from the conference, I realize that I need to substantially increase my salt intake. Dr. Raj Satish said that in a study, they were able to bring POTS patients blood volume to near the same as healthy controls, using a high salt diet. I believe it was 10g per day. I just put in another order for salt tablets on Amazon.
 

Sushi

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Dr. Raj Satish said that in a study, they were able to bring POTS patients blood volume to near the same as healthy controls, using a high salt diet. I believe it was 10g per day. I just put in another order for salt tablets on Amazon.
My cardio told me to load salt and try salt tablets but the tablets nauseate me so I just add salt to everything--plus other electrolytes.
 

Gingergrrl

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P.S. @Gingergrrl - All of my best friends have always been red heads...no joke! I was pleased when 23&Me let me know I'm a carrier!
I'm not a red-head and was talking about my Ginger doggie :dog:

I should have clarified...there haven't been formal published studies examining sleep problems in POTS, an area that has and is being studied in ME/CFS.
I agree and think this is absurd. When I first developed POTS in Jan 2013 (post-viral), my HR was going into the 160's and 170's while I was sleeping. It was happening every few hours and I was literally unable to get any sleep. Each time it woke me up (and my husband measured it on a HR watch at the time), I would be gasping for air and my arms and hands would be numb and I could barely speak b/c I was so short of breath and confused.

It felt as if someone was squeezing my heart and I would have chest pain for days. I saw a Cardio and begged for a sleep study but she said no. I was finally put on Metoprolol (and later switched to Atenolol) which controlled the very high tachycardia. By the time I was approved for a sleep study, the doctor of the sleep clinic told me to take the beta blocker during the study but I knew it would never capture an episode if I did. But he said he could not be responsible and if my HR went dangerously high they would have to stop the study and take me to the ER (which was ridiculous b/c I had already been to the ER gasping for air with chest pain in 2013 and it was beyond USELESS).

I finally had the sleep study, and was basically forced to take the BB, but it really did not matter b/c I couldn't fall asleep with all the electrodes on my head and body in the sleep lab. Once they ruled out sleep apnea, they said I was "fine". Soon after that, the insane tachycardia episodes in my sleep morphed into episodes when I was standing/walking and then stayed that way. But still no one had diagnosed me with POTS or told me what to do beyond taking a beta blocker.

By early 2014, I had to end my career b/c I could no longer walk from my car to my office or climb the stairs to my office. I really think it could have played out differently in retrospect but I was so ignorant what was happening to me at that time and had a PCP that completely missed that I had both POTS and Hashimoto's at that time and could only recommend "counseling". Fast forward four years and we now know I have Autoimmune POTS & MCAS (which very frequently go together) and so much more information is known.

I think so too as a number of cardiac problems involve the autonomic nervous system--like Afib--which I have. The head of the heart failure unit at Vanderbilt said that she also agreed that the autonomic nervous system was involved in heart rhythm problems.
I agree and don't understand how they actually could NOT be connected!
 

Diwi9

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I'm not a red-head and was talking about my Ginger doggie :dog:
Well, dogs have been my best friends too...but no gingers yet!

I had a similar experience with a sleep study. $7,000 to rule out sleep apnea. I only slept about 5 hours because of the wires and environment. After-the-fact, the neurologist was like, "Well, you don't have sleep apnea, but we can't tell much else because the environment is so abnormal you can't get a regular night of sleep." Oddly, the sleep tech mentioned having seen something highly unusual on my study but was not authorized to discuss, said my neurologist would (he never did). The tech said he had to look it up in the "Sleep Atlas" as he'd never seen if before, but it was in there. Wish I knew what it was!

They discussed MCAS at the conference. Only some of the talks will be uploaded as videos, but I hope that one will.

Been talking to another friend on your treatment with Kaufman. This friend still has problems, but has a life again. I'm so happy for both of you and grateful Dr. Kaufman exists. He is what most doctors should be: willing to dig, learn, and do informed treatment.
 

Diwi9

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Have any of you tried fludrocortisone?
@Diwi9 what do you mean by altitude test?
"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.
 

Gingergrrl

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Have any of you tried fludrocortisone?
I know this was not addressed to me but I did horribly with Florinef and it made me worse (vs. I do very well w/beta blocker and Midodrine).

Well, dogs have been my best friends too...but no gingers yet!
LOL. My dog is not my best friend at the moment but that is explained in another thread :dog::bang-head:

Oddly, the sleep tech mentioned having seen something highly unusual on my study but was not authorized to discuss, said my neurologist would (he never did). The tech said he had to look it up in the "Sleep Atlas" as he'd never seen if before, but it was in there. Wish I knew what it was!
WTF?!!! I don't understand why the sleep tech or Neuro cannot tell you what they saw? You are the patient and have the legal rights to your medical record. I would fight to get it if you can. That really pisses me off.

They discussed MCAS at the conference. Only some of the talks will be uploaded as videos, but I hope that one will.
I apologize if this was already said but where will the videos be uploaded to? On Dysautonomia International website or YouTube or somewhere else?

Been talking to another friend on your treatment with Kaufman. This friend still has problems, but has a life again. I'm so happy for both of you and grateful Dr. Kaufman exists. He is what most doctors should be: willing to dig, learn, and do informed treatment.
I agree and have several friends (on and off PR) who have been greatly helped by Dr. K. I wish he could train a bunch of doctors to learn all of this stuff (not that he has any spare time)!

"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.
That's what I thought you meant but was not certain :D. I do NOT do well at high altitudes or anywhere that gets too hot.
 

Diwi9

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I apologize if this was already said but where will the videos be uploaded to? On Dysautonomia International website or YouTube or somewhere else?
I think they will be posted here: http://www.dysautonomiainternational.org/page.php?ID=151
I obtained a copy of my sleep study raw data and have considered talking to Marcia Zinn.
As per altitude...my husband and I just purchased an mHBOT...so giving that a go as I feel so much better when in CA.
 

Sushi

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Have any of you tried fludrocortisone?
Had a very bad time with it and no improvements.
I had a similar experience with a sleep study. $7,000 to rule out sleep apnea. I only slept about 5 hours because of the wires and environment. After-the-fact, the neurologist was like, "Well, you don't have sleep apnea, but we can't tell much else because the environment is so abnormal you can't get a regular night of sleep."
The new home tests are very sophisticated, very comfortable, and paid for by insurance. They even tell you how many minutes you were on your left side, right side, and back. I did this one (that is an EKG on the chest):
upload_2018-6-24_18-53-53.jpeg

my husband and I just purchased an mHBOT...so giving that a go as I feel so much better when in CA.
HBOT you say, hmmm. Watch out for visitors!
 

Gingergrrl

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Thank you and I just bookmarked it.

I obtained a copy of my sleep study raw data and have considered talking to Marcia Zinn.
I think you should.

The new home tests are very sophisticated, very comfortable, and paid for by insurance. They even tell you how many minutes you were on your left side, right side, and back. I did this one (that is an EKG on the chest):
I inquired if there was something like that (when I did my sleep study in 2013) and was told no. But that Cardio was in the "dope" category that Diwi is compiling.

HBOT you say, hmmm. Watch out for visitors!
Party at Diwi's house with the HBOT machine ... just kidding ;)
 

Navid

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The new home tests are very sophisticated, very comfortable, and paid for by insurance. They even tell you how many minutes you were on your left side, right side, and back. I did this one (that is an EKG on the chest):
How do you get one of these home tests ordered....and how does it work. Does someone come to house to set you up. Does Medicare cover it. I have Medicare primary and Healthnet 2ndary. Pain in the butt....they fight over who will/wont cover things.

I have an ME/CFIDs Dr; cld he order it?

Thanks for any info.
 

Sushi

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I inquired if there was something like that (when I did my sleep study in 2013) and was told no. But that Cardio was in the "dope" category that Diwi is compiling.
The technology is new--they may not have had them then. Now, many doctors prefer the new, high tech home tests because the patient actually sleeps!
How do you get one of these home tests ordered....and how does it work. Does someone come to house to set you up. Does Medicare cover it. I have Medicare primary and Healthnet 2ndary. Pain in the butt....they fight over who will/wont cover things.

I have an ME/CFIDs Dr; cld he order it?
My cardio ordered it but any doctor could I'd think. Mine was from http://www.itamar-medical.com/watchpat-main/ and I just went to the cardio's office, a tech there gave me the equipment, showed me a video on how to use it and I brought it back to them the next day. They send it to a specialist sleep doc for analysis. Medicare paid 80% and my Medigap picked up the remaining 20%.

Your doc would have to feel he/she had a good basis to order it but with all the problems ME/CFS patients have it shouldn't be hard to justify it. I think mine was qualified as a check for sleep apnea and drops in oxygen overnight. The report was comprehensive.
 

Navid

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Sushi:

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

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 .

Since this was all done for a research study, I was never given anything to act upon based on the results. Just told the weird results but no "solutions".

If I did the testing I'd like to get some answers abt how to improve that 2nd 1/2 of the night sleeping and perhaps find out why it happens. (autonomic dysfunction.....but why?)

Thanks for your advice and input, really appreciate it : )

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)
 

Diwi9

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Diwi: Very curious to hear if the mHBOT helps you out. Maybe you can start new post to let us know how things go?

Thanks.
There is an ongoing thread on mHBOT started by @Jesse2233:

https://forums.phoenixrising.me/ind...-full-recoveries-w-ongoing-maintenance.54006/

I haven't participated in the thread yet, just followed it. So far, so good. I feel better while in the mHBOT and a bit energized afterwards. It feels like it is helping inflammation...but I live at high altitude, so the 1.3 ATM might be even more helpful to me than others? Not sure, I've only done three dives so far.

I asked @Cort to inquire about HBOT therapy at the Dysautonomia International conference over Twitter, but did not get a response yet. It would be great to know if the issue was brought up at some point and addressed. This is a therapy that has been fringe, but is gaining more traction outside of just wound healing. Some claims are that it can help autoimmunity and mitochondrial dysfunction. Fingers crossed!