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Progressive Pots Vs Paf Vs Msa Vs Mito


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Does anyone know a citation that discusses ""progressive POTS" or pandysautonomia with all subtypes of POTS, crazy high NE, severe hypovolemia, and cns involvement? From what Ive read PAF and MSA can overlap with POTS but seems PAF and MSA don't have the severe tachy component? Right? MY ANS seems to be shutting down system after system but I still have bad tachy, among a huge list of every imaginable related issue. Dont have pheo or the typical differential dxs. Do have hx of sjogrens & raynauds. My speech is awful, my reflexes almost absent, convulsive syncope, neurogenic bladder, gastroparesis, severely low sodium. WE have tried everything. Getting worse. Docs think its POTS with MSA and PAF, but could be mitochondrial disease - have referral for workup, but got stuck on a wild goose chase at one of the big centers. They didnt find stuff they expected, but found other stuff consistent with dysautonomia or mito...but worse and involving more systems than other POTS patients. So, anyone know about tachy with MSA and PAF or POTS turning into PAF and MSA? Or whatever info that might help me? Please help. I searched medical library. Can't find anything research based. Cant even find a physiological/theoretical clear explanation. I am really in need of something more definitive before I die. Not into giving up or getting worse. WIll go anywhere. have great docs doing all they can. I just have a very complicated case. Can you have tachy with MSA or PAF? PLEASE respond if you have any info. THX!

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Hi, I'm so sorry you're so sick, and I hope you'll get better very soon! I also have a very complicated case of POTS with an extensive list of neurological problems and other diagnoses. I've had to research my conditions for years too, and there have been many times when I thought I was going to die. I hope the information that I found will help you.

I couldn't find any articles that said that MSA or PAF cause Tachycardia either. I've been very sick today, so I didn't have a chance to search for Progressive POTS or Pandysautonomia. I also had to try to retype everything because I somehow deleted everything when I was finished due to brainfog, so I hope I won't leave anything out that I had in my original reply.

After searching for MSA and PAF articles, I took a different approach. I really thought that many of your symptoms could be caused by the severely low sodium (Hyponatremia). Surges of norepinephrine and epinephrine may cause sodium excretion. Hyponatremia can also cause convulsions, syncope, tachycardia, slurred speech, depressed reflexes, hypovolemia (Hypovolemic Hyponatremia), etc. It is also often seen in Central Nervous System Disorders. It can cause gastroparesis:

p. 4, Case 1: http://www.ucsfcme.c...drenalCases.pdf .

Here are some other websites that I found with information that may be helpful, including a lot of other symptoms of Hyponatremia and its causes, Hypovolemia in POTS, and a patient with Dysautonomia, EDS, Mitochondrial Disease, Hyponatremia, etc.:

http://en.diagnosisp.../15161-104.html

http://www.ncbi.nlm....pubmed/14764318

http://circ.ahajourn...ull/111/13/1574

http://www.bioline.o...request?pe07013

http://emedicine.med...767624-overview

http://www.medscape....rticle/481392_4 (You have to create a free account to view this article.)

http://www.samsca.co...-prognosis.aspx

http://www.inspire.c...ean-off-of-tpn/

* All of the links above should be working now.

Edited by Shiner Kitty
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I deleted this reply because all of the links in my original reply are working now. It was very strange. When I reposted them in this post, 4 of the links worked. Then only 2 of them worked later, but no matter what I did none would work in my original one. Anyway, whatever I was doing wrong or whatever the computer glitch was is hopefully fixed, so you can open them now.

Edited by Shiner Kitty
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Don't know if what I say will mean much. But, you seem to be in a really bad place and I wanted to acknowledge your frustration and fears.

Before I got my POTS diagnosis, I was diagnosised with Parkinson's and treated for over a year and a half. The treatments made me worse and I started a downward spiril and the doctor said she thought that I may have Lewy bodies or was developing MSA. My cognitive function was horrible and my feet wouldn't pick up to walk, I could barely get out of a chair, I had tremors and the list continues. I didn't like that explanation and took myself off the meds. I have tried sinement and couldn't tolerate it - so I was on Lexapro and Wellbutrin XL to try to balance out the dopamine levels and to not unbalance the seratonin/noriephnirine levels further. I was getting continually weaker and was having trouble breathing and was using oxygen and a CPAP at night. It appeared that there was not only obstructive apenea but central at that time. I started giving away my prized possessions and jewlry to neices and others whom I loved - I was sure that I was on my way out. My husband was with me at almost all my appointments and realized that I was only getting worse. We made our way to Mayo Clinic and I was there for over 3 weeks. The very last appointment I had was a tilt test and the diagnosis that explained most all my problems. I was also diagnosised with Ehlers Danlos and found to have numerous tumors and had one on my thyroid biopsied (it was okay); I also have a brain tumor that has to be watched yearly. There were other things diagnosised that put other puzzle pieces together. Since I'd been there so long, we didn't do further testing to determine what type of POTS I had. But, have since had testing and found my noriepi. levels to be high and indicative of Hyper POTS. I have the tachy really bad and tend to have higher blood pressures - although they can drop too. (I recently learned that there is a 3rd type of POTS called a combination type and it includes swings in both directions with high and low bp and high and low pulse. I fall into this catagory - with the wild flutuations.) It would be the hardest type to treat because you can't treat the high's because of the low's and vica-versa. In the meantime I tried all the typical POTS meds and couldn't tolerate any of them. I thought I had found a miracle drug with Propranalol - but after a few weeks my bp rose really high and I couldn't take it because of rebound. I wasn't able to take it enough because of the swings - couldn't take the afternoon dose because the bp and pulse would go too low with lying down. So, at this point I'm not on meds (per se) for POTS - but do find that becauase of the pain I have from the EDS I occassionally use Tramadol and Bentyl - something about this combination helps the POTS too. I can't take one or the other by themselves - it will create more problems. I've also determined that it is very likely that I have mast cell issues and Claritin is helpful for that. (All the other antihistimines are too strong for me.) I don't take it regular either. I do however use many vitamins and minerals and have recently added enzymes. I also found out that I have autoimmune issues involved - I have vitiligo and my IGG came back really low.

So.......don't know if any of this is of benefit - but hope that it maybe will give you some insight. I'm still looking for help too - but taking things into my own hands and getting off the meds - Helped. I also have gone glutten, dairy and sugar free (doing my best - any way). That seems to be making a HUGE difference. I researched and found that these things could trigger autoimmune problems. For me, I look at it as if it is life or death - I'm trying hard to do this diet. It could very well be - if your immune system is attacking you.

As for breathing, I'm better. Not having to use oxygen now, but still need the CPAP. It doesn't appear that central apenea is happening now - not sure. But, that seems better. I know I don't breathe correctly and this will cause issues too. Sometimes, if I feel like I'm smothering I use a puff of Albuterol. It helps - but doctors are not sure why because I don't have asthma. I have read that it is helping MS patients though. So possibly something to do with that illness. My symptoms do seem more MS like than Parkinson's or MSA.

Hope that you get some answers real soon. Take a look at your meds and your diet and see if that could be part of the problem.

Issie

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