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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. Thus a clearly positive tilt test.
  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 have cut it down from the original prescribed dose which I believe was way to much, and intend to continue tapering it. The Remeron ( at low dose only-7.5 to 15) was the strongest of them all for me and if I had it to do over I would have been on it and not Klonopin. I am taking the Remron when I need it but not all the time now. I would rather be off the Klonopin due to the addiction but on the Remeron. The others I am not on. The Clonidine sent me for a loop with Hr's and blood pressures all over the board and I will never take it again-it did not make me sleepy by any means but I am sure everyone is different. The medicine that strangely brought me my sleep back was high dose Propranolol that I had been trying to cut down on but am not back on-this is not really a sedative medicine by my understanding. It drastically moves my HR back to a normal range. With your story above I would wonder if the Klonopin really made that drastic a difference in your sleep that long or if something else may have made the sleep worse back then and then went back towards normal and is now causing a problem again. Studies show tolerance specifically for sleep develops much more rapidly than tolerance for other things like anxiety. Some medicines like Imipramine can also help sleep though that is one I did not try. Also I have heard Magnesium can help but never tried that either. Melatonin did not help me. Be careful your docs know which ones you are taking when as their can be drug interactions. Hope any of that helps.
  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 for a lot of things in the process of getting a diagnosis of POTS though not a Sjogren's antibody test or RA antibody test. Most of my basic tests came back normal.
  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 improvement in their own health! Thank you.
  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 am over the worst!!!!!
  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 addition to other mito. indicators, so they went back and did a punch biopsy and sent it to Baylor. The results showed a disorder called an Electron Transport Chain Complex 3. It was supposed to be progressive, but has not progressed in the ways it was supposed to, though I have recently gotten sicker in other ways. I tend to think the diagnosis is irrelevant. Also most mito. diagnosis have little cure, just some supplements you can take. My thoughts is one could spend a lot of time pursueing a mito. diagnosis without anything that can clearly help POTS. But that is just my two cents based on my experience.
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