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Update on my Journey with Apnea & POTS
#1
Update on my Journey with Apnea & POTS
Hello the forum, and good morning.

I went to my 3 month checkup appointment with the Sleep Lab Clinic doctor. It was a new doctor to me, had not meet him before, as my initial doctor was an intern (resident?) and had now left. At my appointment two visits ago I only saw a respiratory therapist, because the doctor wouldn't see me. I really was not impressed with that, as I did have questions for him. Including the fact that he made a statement the visit before that my oximeter recording showed my blood saturation going down to 80% and that my BiPAP probably wasn't capable of taking care of my sleep apnea. That's what got me started looking for sleep apnea forum, and settled here. What I did not know was he was leaving.

Frustrated with this visit, I wanted to get in touch and email my doctor. As this clinic did not provide an email address on their website, but they did use MyChart. My doctor wasn't shown in the list of possible doctors that I could email. My doctor picture was not even shown on their website section showing pictures of "all" the doctors. I did find one doctor who was listed in MyChart and was a member of that clinic. Turns out when I meet her, I discovered she is a professor of medicine it UC San Francisco and was director of the clinic. I wrote her, not knowing who she was yet. I described how I was not seen by my doctor, and previously had been given his disturbing information. She made an appointment to see me.

I truly enjoyed my visit with her. She was very knowable and communicative. She was completely able to discuss my apnea related issues with me. I had brought SleepyHead printouts with me. She was very curious how I had acquired these graphs. I explained, and she very impressed with the software, not the intimidation reaction I had sensed from my prior visit with their respiratory therapist. I discussed with her the changes I had made in my pressures and the reasons for it. My strategy, which I believe I learned that this forum, was not to have it ventilate me but set the pressure so that I inhaled as if I was just inhaling with no assistance and no drag. Also for exhaling not to have it suck air out of me and not for me to have to force air out of me but to exhale naturally. She expressed that she had no problem with me making my own pressure adjustments and to go ahead and continue doing it as I have!

I was pummeling myself to determine if sleep apnea was causing the incredible grogginess, brain fog, dizziness, and almost fainting; not knowing where this was coming from. After going through my graphs as printed by sleepyhead with this doctor,  she was certain that what I'm experiencing was/is not due to my sleep apnea. At the time I saw her I had already acquired a recording pulse oximeter and had merged the oximeter readings into the sleepyhead database. I seem to be averaging an AHI of around six, sometimes going down as low as three and may be up to seven. 75% of that are central apneas of very short duration that seem to come in if a couple clusters through the night. She told me you're not desaturating on those, matter fact you're not desaturating on anything, you are maintaining your blood oxygen above 90% mostly 94/96%.
Back to the future present.

So to my visit yesterday, the doctor commented that he understands that I am making my own pressure adjustments (seems he did read my charts!) , it was obvious he was not used to that. It's also interesting to note that they don't look at any individual days, what he had with one sheet with my averages for the last month. He had to admit that I had done very well in adjusting my own pressures. Nonetheless he brought his supervisor Dr. in to look at this because he was uncomfortable with it. It's obvious not all doctors are the same. They never asked how I knew how to get into that area of the DreamStation adjustment section.

I'm writing this for those who are now using CPAP to treat their sleep apnea but still feel terrible. It is quite possible and likely you got something else going on also. The first night I used my pulse oximeter, I had to get up to go to the bathroom, after I had stood up and got very dizzy (typical for me) I noticed my pulse rate went up to 125 bpm. Wow, what's this all about? I mentioned it to my chiropractor, he told me I very well may have POTS. I've never heard of that. An acronym for postural orthostatic tachycardia syndrome. So what's that? It's a condition caused by having too low of an amount of blood volume. You may have heard of it, in the sense of blood pooling in the legs. So when your posture is upright, gravity is pulling your blood down and it is mostly in your legs your hips, lower abdominal cavity, then the blood pressure up by your neck is too low, and you're not getting enough blood flow to your brain. I've had this 15 years. Undiagnosed & untreated. This is the first time it has been diagnosed. Major characteristic is you almost faint when you stand up. After 10 seconds or so when your heart tachycardia kicks in, then you now don't faint but you have brain fog, more blood flow to the head but still not enough.

So my personal journey with health is leading me on a new path. I am now studying this condition. As initial screening and symptom relief I have been receiving saline IV infusions to add volume to my blood. When I received 2L, my dizziness goes away, this being rather substantial confirmation that the condition is been identified correctly. I've also felt elation like I haven't felt in 15 years, somewhat like you got a good amount of serotonin kicking around in your head instead of being dizzy and brain fog. Sufficient blood flow to the brain.

I write this not to discourage anyone in pursuing sleep apnea treatment, because I have sleep apnea to. And I'm sure I can improve on my sleep apnea treatment. But on my journey to health, at this point in time, my major issue is POTS. This is where my attention must go. I will be seen at the Stanford university neurological clinic in two weeks which is one of the two locations in California that treat this condition.

I do read posts from people on this wonderful forum who are undergoing sleep apnea treatment by CPAP or BiPAP, that are not experiencing relief from whatever health issues they are experiencing and where it would seem their apnea condition is under control. CPAP and BiPAP are good for sleep apnea, so it seems to me. But you too may very well have something else going on if this isn't helping.

There are truly wonderful, sincere and knowledgeable people posting on this site to help others. I really wish I could find the equivalent forum for treating POTS. I have some good websites with information, but not not a good forum.

Best wishes too all.
Stan
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#2
RE: Update on my Journey with Apnea & POTS
Thanks!  That is a great reminder and case in point for people who are still experiencing problems that sleep apnea might not be the only thing going on.  Keep after the doctors and keep searching for an answer.
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#3
RE: Update on my Journey with Apnea & POTS
Hi BrassCat,
It’s great to hear that you persisted to really find out what is going on with your health.
Good luck to you on your quest for better sleep, and health.
Do keep up posted on how things go for you.
trish6hundred
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#4
RE: Update on my Journey with Apnea & POTS
(08-31-2017, 01:34 PM)BrassCat Wrote: Hello the forum, and good morning.

Frustrated with this visit, I wanted to get in touch and email my doctor. As this clinic did not provide an email address on their website, but they did use MyChart. My doctor wasn't shown in the list of possible doctors that I could email. My doctor picture was not even shown on their website section showing pictures of "all" the doctors. I did find one doctor who was listed in MyChart and was a member of that clinic. Turns out when I meet her, I discovered she is a professor of medicine it UC San Francisco and was director of the clinic. I wrote her, not knowing who she was yet. I described how I was not seen by my doctor, and previously had been given his disturbing information. She made an appointment to see me.

A little used way of locating a doctor is to use your state's physician licensing system. Here in California, it can be found at http://www.mbc.ca.gov/Breeze/License_Verification.aspx. Select Physicians & Surgeons -- enter the name and perform the search. If you suspect you physician moved out of state, you can also search the records of neighboring states. Welcome to the age of the intrusive internet.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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