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POTLUCK

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About POTLUCK

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  1. Hi, Has anyone heard anything further on this. The original post was 2 years ago and the follow up study was supposed to be huge at the Dysautonomia Convention in July 2014 with 100 study participants live. There was never any reply to this extensive thread. I do not follow the literature much anymore so maybe something was published. Was the study with 100 participants published after 1 1/2 years? Is there any information out there? Thank you.
  2. Bananas are very high in Magnesium, and this is supposed to help with sleep, more so in people low in it. Sarah, sorry it took so long to get back to you. I have stayed on extended release Propranolol. It is not really sedating as it effects me in the daytime also without sedating me, but I guess the effect of leveling out my heart rate helps me sleep better. I do not know. Without it I sleep terrible. I have cut the Klonopin but not stopped it, which is still my goal as I do not like the addictive medication.
  3. I was still on Propranolol when I was given a tilt test initially and it did not show POTS. At the time I did not know anything about POTS and did not believe the Cardiologist who felt I had it and sent me to the clinic for testing. It was not something anyone had heard of. Thus I was not surprised when the TTT was negative. Later, when the idea of POTS was presented again they took me off the Propranolol, actually for a period of time for the body to become used to being off it, and my tilt table test very clearly showed POTS with a large difference beyond 30 in HR lying flat verses tilted.
  4. I can not figure out the edit function for above but I meant that with Klonopin tolerance develops at a different rate for sleep and anxiety. The tolerance for sleep-meaning it becomes less effective yet you need to take it or have trouble sleeping is much faster than the tolerance for its beneficial effects as an anxiolytic.
  5. KS42- I developed sleep problems with my POTS symptoms, and they got worse in the spring of 2014 before developing other problems. I took everything under the sun and had a sleep study also which did not help with anything that was clear. I tried, at least once Flexaril, Clonidine, Seroquel, Restoril, Trazadone, Remeron Klonopin Gabapentin and a handful of OTK meds. The Gabapentin and the Klonopin were the two I ended up on for a year, and they both work through the same Gaba receptor so may have a synergistic effect. I would warn you to be careful of the Klonopin it is highly addictive, I
  6. MakeMeErised- I have an uncle who has this diagnosis and it is very serious and scary. I do not know much about it though. I am sorry to hear you have this diagnosis. For my uncle I am wondering what medications/treatments can help to control it. Is there a major center specializing in this? I hope you do not mind my asking. I understand it to be rare. Nymph-my cousin has Sjogrens, and although I have no reason to suspect I have it except that it rarely occurs with POTS and can be genetic. I wondered if there are any basic tests that indicate it like an ESR as I have had some basic tests
  7. Will their be any published results from the study done July 2014 with a larger number of people tested than the original 14/14 study. Also, if not published yet or if this will not be published does anyone know anything about the actual results? How many people in the larger study had the antibodies? Did it show up in different types of patients such as Hyperadrenergic? It is good news that they have obtained an even larger grant to work on this but it has been 8 months, shouldn't results be available from the July 2014 study?
  8. I would just like to say thank you to Raisin, Katybug, Blue, Looneymom, Valdiz, Artluver09, Chaos, Sue1234, Yogini, Rama, KJay, Corina, Dizzieallie, and E Soskis for all of your support, well wishes, prayers, encouragement, thoughts and advice, and comments on this thread during this past year, the toughest year of my life. I do continue to have at least moderate depression but know this will get better and I will return to working. I am very very thankful to have moved past a very bad place in my life, and thankful to have good people like all of you to help me with this. I wish everyone im
  9. Thank you both, it was an awful time, and I am glad to be past it.
  10. Was ready to check in hospital inpatient to try and go off patch. Doctor approved admission. Insurance OK'd. Doctor refused to come in on a Friday night. RN friend who brought me suggested go back on 60mg BID Propranol at hospital check in literally. I went home and did it the next day. It fixed my sleep problem after many months in a night. Then I pulled 9mg patch straight out. Never looked back. Literature said due to enzyme turnover it would self taper. Depression came back but no where near as bad, and fear was gone in 1-2 weeks. I am back to me!!!!!!!! Lost job, nightmare but I a
  11. There have been some connections in the literature of patients with Mitochondrial dysfunction and POTS. There are many mitochondrial illnesses, it is sort of like saying could a genetic illness cause POTS as there are many genes in the mitochondrial genome, and many regular (nuclear) genes that cause mutations in the mitochondria. There are very few mitochondrial specialists. I saw one several years ago and he gave me a diagnosis, then later said it was not correct. I had my entire mitochondrial genome done, without illness, but still had short and long chain fatty acids in my urine in add
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