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Everything posted by RichGotsPots

  1. My ratio is also slightly low but doctors don't make anything of it
  2. They actually did the study on Orthostatic Hypotension first and found similar results. The answer is probably yes it will end up applying to a bunch of autonomic conditions. The most interesting thing is if they keep expanding on it to see correlations between other illness and causes. For example with they find EDS or Sjogren's patients have all the same type of autoantibodies or the same groups or will it be completely random. Then later on is there a genetic predisposition involved like they are finding in other autoimmune conditions.
  3. I'll put this in perspective and it should answer anyone's questions: This study if replicated on a large scale which they are planning to do (100+) would mean that POTS is an autoimmune illness very similar to Autoimmune Autonomic Gangliopathy (AAG). The researchers theorize that depending on which autonomic receptors have autoantibodies causing the dysfunction, that will result in the type of symptoms you have. This particular study was too small to make correlations between types of co-existing illnesses and types of autoantibodies. But I am told on the larger study they will be getting a much wide patient group so they can see if for example. EDS POTS people get a certain autoantibodies more than other types. There are a lot of autonomic receptors on both parasympathetic and sympathetic sides. And depending on the autoantibodies to certain receptors may predict which medicines will work best. That is why they theorize not everyone does well on midodrine, mestinon, or beta blockers. If the larger study has the same results then yes every type of sub type (hyper, low flow, high flow, etc..) or co-existing (eds, mito, mcad, etc..) would be caused by autoimmune disease called POTS. I would think they might even rename it. This is it is replicated this is the biggest break through in pots research ever. Also it opens the possibility of new drugs that could target these receptors to stabilize them.
  4. Just a tip. He is known for testing for causes but not known for a great bedside manner. So if you want to get on his good side talk about music and especially Piano which is plays. He is also works on music therapy even for pots
  5. Yes I have Sjogren's and autonomic neuropathy. I know 70 people with Sjogren's and POTS. I run a group of 550 members who have autoimmune disease that causes dysautonomia. Any autoimmune disease can be associated with it. New research published this months shows that not only can POTS be caused by autoimmune disease but POTS might be an autoimmune category in Itself and the other autoimmune disease might just be comorbid.
  6. Like Rama, I am skeptical. There are a lot of alternative doctors out there with great intentions and impeccable bedside manners. But they try to use placebo to cure people. They pump you up, tell you they know whats wrong and they can cure it. Placebo is very powerful and it can cure anything even cancer, but it won't work for everyone. It's just your mind healing your body. So I am hopeful it works but it's not a real cause or a real cure everyone can use. There is such a thing as a Chairi Malformation and there are spinal trauma's that can damage autonomic nerves close to the spine. Wish you luck!
  7. Lidocaine usually includes epi which can cause tachy. Lidocaine without epi causes a slight vasoconstriction. When I have gotten it locally it feels like a warm wave over my body and I get tachy. It usually passes after 30 min, but I can't imagine getting an IV of it, yikes..
  8. Kelly-unfortunately the article says more acetylcholine the less overreaction from mast cells, but the major acetycholine activators like Evoxac have a warning on them for actually making breathing problems worse. More Ace=more mucus. More mucus usually means more histamines released or think blobs of mucus like in cystic fibrosis. There is a COPD inhaled med called Atrovent which is a pure acetycholine inhibior that they use for breathing problems. That med of course has the warning or causing dryness.
  9. The antibody involved with AAG does not actually damage the nerve, so there would be no real benefit in doing a skin biopsy. In my opinion the G in AAG stands for Gangliopathy. Ganglia are the autonomic nerves and Pathy refers to the damage. Just like Neuropathy. So Gangliopathy refers to autonomic nerve damage. Also when autoantibodies are high enough to detect they are causing damage, that is not just the case in AAG but that is true for all autoimmune disease. In AAG the autoantibodies that have been found so far attack and damage the cholinergic synapse which is connection btwn pre and post ganglion nerves. My comments about AAG treatment were directed towards AAG treatment alone hence my reference to only AAG so I am not sure I understand, since by the end you say if autoimmune dysautonomia is suspected you would not be reluctant to recommend such treatments. The other day a Dr. at Mayo said that 33% of AAG patients who got IVIG got much better after. That is about half of the positive results then for other autoimmune attacking illnesses like Vasculitis and CIDP. In regards to Cyclophosphamide (chemo med used in autoimmune disease), I can't speak of any published studies of it's success in treating AAG, but in researching other autoimmune nerve damaging illness there are some studies I can mention. For example in some forms of vasculitis they treat it with a double punch of both Cyclo and high dose prednisone at the same time with about 75% success rate. They also just completed million dollar trial where Rituximab and high dose prednisone proved to be as effective with slightly less and or different side effects.
  10. Suthrngal, have you tested your upright catecholamine levels?
  11. Olive leaf extract lows BP slightly. Any time the hyper part of my pots is acting up I take that. That's one reseason researches think greek and italian people have a slightly lowered incident of stroke and heart disease. There are a few other things but thats what I use.
  12. Alex- yes only for certain subsets. I forgot to add on my symptom theory post Chiari Malformation. For example EDS people who have pots have a high possibility of MCAS and Chiari. But Chiari is another subset where the nerve damage at the Dorsal Root Ganglia. But there are bound to be many other ways of causing that damage especially autoimmune. I recently contacted started contacting a few researchers and haven't gotten any response. I can't remember if I contacted Verino, but I contacted literally everyone at Vandy. When I contact none autonomic specialist at the top of their field I have about 75% luck with startingnup conversations with them so far I have only ever emailed with one researcher in America. It's a pretty stuff group.
  13. Kara, from that study Alex pasted a link to, to me it seemed like Morphine could lower BP. Do you have hyperpots or normally have low BP? It did say that initially there was a contrictor response but that only lasted minutes..
  14. Zap there are other autoimmune steroid sparing meds out there today and new ones being developed. For example wikipedia Plaquenil, its given for most autoimmune illness like Rheumy Arthritis, Sjogren's, Lupus and many more. Also I've said it a few times on other posts that I believe once our nerves are sufficiently damaged steroids stop working. In those cases IVIG is one alternative.
  15. I don't think we will be hearing any huge break throughs per se, but there will be very interesting topics like "Autoimmune basis for postural tachycardia syndrome (POTS)" and "Deconditioning in orthostatic intolerance - chicken or egg?" Which a little birdy told me was a study Mayo did which shows POTS is not do to deconditioning like Dr. Levine was theorizing. "Repeating and prolonging the tilt table test help confirm the diagnosis of postural orthostatic tachycardia syndrome (POTS)" this is key because a lot of people have delayed orthostatic Tachy and Hypotension. Thought this Eminem paraphrase was funny, "The co-morbidities of pediatric POTS: will the real “POTS” please stand up?" "Treatment induced neuropathy of diabetes" this one is interesting. "Distorted central autonomic responses in sleep-disordered breathing" I believe also related to our days time breathing issues in dysautonomia. And on and on... Btw most of these studies are out already so if you pop the title into PubMed you will find most of them.
  16. Gemma, I don't my friend was even evaluated for microvascular causes. All I know is she have hyper pots and had a stressful situation. She isn't in the best shape but she isn't that over weight or anything. So the answer is I don't know the cause besides hyper POTS. Like I mentioned before I emailed with the top microvascular cardiologist in the country and that's the only test he uses to evaluate he told me. If you can get to John's Hopkins in Baltimore then maybe I will try to dig up his email and you can go see him. I emailed him over a year ago about it.
  17. Targs- yes the above theory applies to all forms of dysautonomia, I'm just used to calling it POTS, even though I have POTS, IST, OH. And the theory all boils down to most dysautonomia being Neuro because nerves are considers neuro as well. So for example if someone's nerves are damaged and sending the wrong signals to blood vessels this would prevent them from constricting properly and cause pooling. That's just one scenario of how one form of nerve damage can affect BP. Even though there are direct stimiluation (norepi) and relaxation (acetylcholine) switches they actually set off a chain of reaction in organ tissue and especially epithelium tissue. But it all stems from the nerves so controlling those other modulators is again a bandaid. For example NO, or a bunch other things including hormones and receptors malfunctioning. One of the biggest modulators that is pinged from from a nerve signal are called NeuroEndocrine cells. They are kind of the messanges that link the endocrine system to the brain ultimately. Neuroendocrine cell also act as mini labs converting one chemical to another. But they all take orders from the nerves who gets the orders from brain stem.
  18. Jackie-I don't think she was implying it was against her will. I believe she was put there because of her diagnosis and nothing was implied as to how. But I'll give you another example of a similar case that happened to a famous man that they made a documentary about. He was a jack of all trades. He was first a strongman at a young age able to do amazing feats of strength, then he became an iron worker and then head engineer among almost every landmark building in NYC. He was head engineer at the Manhattan project. Then later on in his life he became an actor and was in over 100 movies. He was in such good health in his 80's that he felt like he was 30. He was the most fit I ever seen for a man in his 80's. Then one day the love of his life died, his wife. And about a year later he started to lose a ton of weight and lost all his strength,seemingly out of nowhere. Yes he was depressed over his wife's passing. But At some point he was so ill he finally went to see a doctor. The doctor told him he needed to be in hospital, so he consented and thought he will get help. In reality the doctor put him in a psychiatric ward. Weeks and weeks passed and he wasn't getting help and did not know why and he was helpless. One day a prominent dr. Passed by and started up a conversation with him and realized he was not crazy at all and that he was actually having congestive heart failure the whole time! That doctor saved his life and he regained his strength and lived well into his 90's. just a guess but what could have happened is the doctors had everyone convinced a psych ward would cure that girl so probably she had no power and maybe a family member consented or maybe she was convinced and consented. Because everyone wants to get better sometimes we can be convinced of anything.
  19. Gamunex is the brand I was referring to. Why do they use dextrose to get itnstarted is that necessary? Rich
  20. To me anyone benefiting from steroids means that their underlying cause is autoimmune related, but maybe a small chance it's adrenal related as well of course.
  21. Yup hopefully after the conference I will get my hands on the presentation slides
  22. When I'm in a major flare I can't tolerate sugar that much at all. Alex- there is one brand of IVIG for diabetes patients that doesn't have sugar in it. Rich
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