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Everything posted by RichGotsPots

  1. Any new updates? I just started it 3 days ago but at home from sample my cardio gave me. I am not on anything besides ivig. I am taking about 1-1.5mg/day to reduce side effects. In a few days I will bump that up to 1-1.5mg 2x/day. Then a week after to 2.5mg 2x/day. Hopefully that will be enough for me. Be careful when driving because blinding lights can be an issue I read.. So far I feel fine no change in HR yet. I have a slight headache but I can't say if it is related..
  2. Tyler, Surprisingly Dr. Grubb has a general paper out on POTS where he lists all different meds and patient experiences. For hyper POTS adderal is listed as having a very high success rate even though it is a stimulant. I don't thing there is any number or percentage that can tell you your limits, but it's wise to find a good doc who can guide you. If it is causing your HR to spike you might want to ask a doc about having you take a. HR lowering med like Invibradine or a Beta Blocker to counteract that. Clonodine is probably also a good med to ask about if you have hyper pots..
  3. Most of you know me a long while on here, but for those that don't feel free to search my posts. I initially had pots symptoms and breathing problems in 2006, slowly went into remission on a super raw, clean diet and high dose asthma inhaled steroids. I was 4 years in remission then I moved a few towns over and i slowly started to go down hill again. That was in 2011 and ever since even with all different steroids, pots meds, supplements and a clean diet I have slowly gotten worse and worse. Then in 2012 I found out I had autonomic neuropathy, then Sjogren's syndrome. My many doctors tried to get me IvIG for over 3 years. Finally I had to step in and push the insurance companies to cover it. I just had my first infusions last week. They were rough but I am hopeful. It can take 3-12 months of treatment every month to reverse this slide. i will try to update as much as I can about my status. Please post your IViG experiences if you have any..
  4. Ares how long have you been on IvIG, i just started it last week. How long before you saw a difference?
  5. Tyler, If you know you have autonomic dysfunction or POTS, irrefutable testing is the most important thing to convince other people and doctors. My suggestion is to call every neurologists off, I mean over 100 neurologists office until you find one that does a Sweat Gland Nerve Fiber Density Punch skin Biopsy . That tests for autonomic neuropathy (make sure its not just the sensory biopsy) If that comes back positive doctors and family will have no choice but to take you seriously. The next step is to find a doctor who will look deep into your cause. I would start with Autoimmune illness and don't just go to your local Rheumatologist who will run basic blood tests. Find a top world renown rheumy who will do nuclear scans, and all different biopsies. Half of all autoimmune people do not have raised antibodies of any kind. Get them to order Mayo's Autoimmune Dysautonomia Panel and make sure it is mailed to Mayo in a cooler over night. Dont depend on your doctors to make sure this is all done properly. Good luck, wish you well
  6. I believe that at least half of Dysautonomia patients who do not have other lung problems and their breathing are in direct releation to their autonomic symptoms suffer from a form of central apneas
  7. I had a transnasal esophagoscopy because I react poorly to anesthesia. It's not sedated, takes 25 minutes and is a piece of cake. Had one done 6 weeks ago and they also did a cancer biopsy. They can see everything an endoscopy can. The only reason more doctors dont use it is financial strong arming from the companies who make the endoscopy technology.
  8. I wonder if the results will be announced at the upcoming conference in DC? Rama what do you think?
  9. Are there low dose patches or patches I could cut in half. I have a enough stomach problems so I dont want to involve it..
  10. Ivig works for many autoimmune illness and some like. Guillaine Barre and CIDP have autonomic dysfunction just like us and ivig helps to resolve it. It doesn't work for 100% of patients and most likely will only end up working for 15-30% of autoimmune dysautonomia. Regarding cost, you don't pay for it insurance companies do or govt insurance does in countries with free health care. Just because science has pnt a grasp on the mechanism isnt a reason to pass on a treatment that works. If that were the case hardly any treatment would be used because 90% of treatment mechanisms are guesses...
  11. This is hands down one of the most interesting things about our illnesses that I have ever read. According to this, it is possible that autonomic dysfunction can actually prolong autoimmune illness! Obviously more research is needed but I like that someone if looking into it.. Restoring the Balance of the Autonomic Nervous System as an Innovative Approach to the Treatment of Rheumatoid Arthritis "It has become apparent that the nervous system has multiple anatomical and physiological connections with the immune system. Through these pathways, the nervous and immune systems have extensive communications using neurotransmitters, cytokines and endocrine hormones (4). Consequently, the nervous system is able to detect and regulate inflammation in peripheral tissues and is involved in maintaining immune homeostasis." "Subsequent electrical stimulation of the peripheral part of the vagus nerve significantly decreased serum TNF-α levels and prevented development of shock compared with vagotomized rats that did not receive electrical stimulation. This peripheral vagus nerve stimulation (VNS) in the vagotomized animals was not followed by enhanced glucocorticoid production, indicating that the suppressed TNF-α production could not be attributed to activation of the HPA axis, but was achieved merely through the efferent vagus nerve" "The autonomic dysfunction in RA patients is characterized by an increased overall sympathetic tone and decreased activity of the vagus nerve."
  12. Chios that's great news. Odd that they went straight to sub q IG first. Just don't be discouraged if it doesn't help with dysautonomia or autoimmune symptoms because it's been proven that a certain high level of IG is needed for that treatment.
  13. If I try nicotine it's going to be with a patch and in small doses that I work up to larger doses. Cigs have too many variables elements..
  14. Sorry I should've been more specific as to why it was the opposite of what your doctor should be recommending in my opinion. I hate how these doctors are like closing their eyes and throwing darts "medications" we aren't guinea pigs, ugh. That medicine, Disopyramide, is an anticholinergic drug. ACH or Acetylcholine slows down the sinus heart rate, so anything that reduces ACH like an anticholinergic drug (there are a few types) is a big no no. Sometimes a doctor will want to treat one specific symptom and ignore the bigger picture. Most anticholinergic drugs have systemic affects and act differently all over the body..
  15. Angie, the connection between GI and your attacks is real. The Diaphragm muscle under lungs is like a hammock with 3 holes in it. 3 important systems run through these holes all close together neighbors; the Aorta, the vagal nerve and the Esophagus. And really throughout the body the vagal nerve runs close to the whole digestive tract. So at any time motility could back up causing blood to pool or just cause it to enlarge and press on the vagal nerve. This in-turn can suppress the vagal nerve and the chemical it releases AcHR. That chemical is what holds adrenaline in check. So it's like the brake line has been cut and then the your system is speeding up from all the NE (noradrenaline) building up. At those time you either need a med that reduces adrenaline like Clonodine or you need a med that stimulates the release of AcHR. It's important to take accurate laying BP at those times. Also chugging tons of water may help to release the blocked food. I would also see a Gastroparesis doc to get tested via emptying tests and Manometry. If you message me I will send to a GP list. Take care
  16. Atenolol, beta blockers, can cause asthma to become worse. I was diagnosed with asthma before I figured out it was dysautonomia. Asthma meds don't really help me but albuterol kicks up my BP and HR. The BP boost helps a tiny tiny bit, while the HR boost causes shaking and adrenaline surges.
  17. Never heard of that being used. Sounds like the opposite of what most people need.
  18. Many biologics have very very deadly side effects much worse then old school immunosuppressants like prednisone. I feel like a lot of doctors are using us as guinea pigs I don't think that's safe or okay. If even one of us get the deadly side effects that's one too many. I think IVIG should be tried before one of those. Also IVIG has better results when combined with strong second generation immuno meds
  19. The one way around the Part D may be to only get your IVIG in the hospital because then there may be a shot as getting it covered as a doctor procedure. Also I believe 2 years ago there was a big big problem were Medicare required all IV infusions in a hospital. That caused a lot of clinics to close. So it's really tricky. The other alternative is to get Plasma Exchange which is only in the hospital and is a procedure and would probably be completely covered..
  20. I think he can't be even close to a cure. What that comment means to me is that the current study is proving that a high % of the 100+ samples were proving to be autoantibodies so that is why he is thinking to even create a "cure." I agree that there is virtually no autoimmune illness that was ever cured, only some have been knocked into a type of remission. Guillane Barre though which is immune mediate peripheral neuropathy has been "cured" for some people. Some GB people have residual illness still and some go onto a chronic form called CIDP. So a "cure" no way, but I am very hopeful this will prove it's autoimmune or immune mediated. Ultimately I also believe that the autonomic nerve is affected at different parts and different branches, especially the Vagal nerve branch... So I doubt a one size fits all solution will be found. But I do think IVIG may be able to help about 10% of POTS patients no matter which part of the nerve is affected.. Only 10% because only around 30% of AAG and CIDP patients are helped but IVIG
  21. Orthostatic hypotension, Hyperadrenergic POTS, autoimmune dysautonomia..
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