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Everything posted by POTLUCK

  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.
  12. These POTS symptoms on MAOI are intolerable for any extended period of time but not as bad as agonizing depression. Any thoughts on where to go. I am in a catch 22 and do not know how to get out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Trying to go off MAOI and try other antidepressants does not sound possible as it will take an unknown period of time.with horrible depression.
  13. I have the POTS on the Emsam 9mg mentioned above back. If not clarified well above this POTS is a nightmare!!!!! I am completely nonfunctional as large stressors amplify POTS symptoms intensely on Emsam causing a "fear" reaction or at times an awful feeling where I cannot think. Heart rates are all over the place and make no sense to me. The 6mg patch brought the depression back very quickly and I am back on the 9mg and the depression is gone, also extremely quickly- 4 days for the whole thing. Which seems strange in itself for an irreversible MAOI. Technically I did have a standing NE (someone pulled up a poll I did on this a couple years ago today.) It was 8000+ and appears ( after a crazy Pheo workup) that it was a lab error.
  14. Someone pulled this poll up from years back today. For anyone interested since I had over 8000NE thought I would mention I had scans done for Pheochromocytoma back then with mixed results +MIBG and negative CT. These scans were completed based on high NE. After scans metanephrine and normetanephrine were run and came back normal. Pheo expert said no pheo based on that but another radiologist pointed out that there was a 7mm (not CM) bump on adrenal gland that matched location of MIBG. I did not pursue this. I did have another metanephrine, and normetanephrine done about 4 months ago and they were normal also. Thus assuming the 8000 standing NE was a lab error. I never had another standing NE done.
  15. I have 20 ounces of coffee every morning (that's two cups for me,) and always have, including with POTS and including while depressed. Prior to my depression it improved my mood slightly as coffee does normally. Since my depression I would say it still may improve my mood somewhat but does not get rid of my extreme depression to any huge degree. Not sure what that suggests here. I do not know for certain that I have "Hyperadenergic POTS" (meaning high standing NE), as I never had standing NE tested. Cardio felt it was hyperadrenergic POTS when he did tilt. Blood pressures are high and remain elevated lying and standing with my POTS and I think, but am not certain, that is why he felt it was Hyperadrenergic. I do not have any obvious signs of pooling in my lower extremities. My seated NE is usually normal 259-368 pg/ml and seated Epi is always slightly high 78-98 pg/ml ( measured on low dose propranolol) I never realized that people with Hyperadrenergic POTS had any trouble with consuming caffeine.
  16. My apologies as looking back I realize I have repeated much of what I said earlier in my own thread in this most recent post. I dropped the 9mg to 6mg patch 24 hours ago, and am hopeful to be making a move in any direction but stuck. There is a risk of returning depression but as one doctor noted to me the 9mg may have 'jump started" the depression and by going down you can decrease the POTS. Feeling positive about this may help improve the depression and decrease the anxiety of the POTS plus I ran today one of the few times since depression so am hoping this is a positive move.
  17. Rama- This is a huge point in my mind you bring up. My POTS prior to the MAOI always followed a diurnal variation with much higher HR's and much worse symptoms in the morning, then slowly tapering to evening when HR was nearly a normal persons, and symptoms were nearly normal. My depression has been agonizing but has almost always involved initial rapid spiraling anxiety, and almost always in the morning, most likely on first waking. However the depression goes away in the evening (about 5-6PM) completely, and when I am unable to sleep during the night for hours I find I am not at all depressed. I have been journaling it. In fact one night I tried staying up all night as this is a recommended treatment for depression believe it or not. I felt great all night, not at all depressed till morning, then became extremely depressed and had one of the worst days of my life. The MAOI has changed the time of the heart rates and the symptoms to a very strange and not entirely clear pattern to me. Low HR's do not always match decreased symptoms as they always did. ( The exception to this rule has been Propranolol which at higher doses has always made my HR's lower but my head worse-dysphoric, lightheaded feel.) Anyways, now it is all unclear with the MAOI.
  18. Relax86- How do you confirm blood volume issues? Thanks re: running. Lately I have had very severe depression and went on MAOI witch appears to be really making my POTS bad. I have been thinking more about the cause of my POTS lately.
  19. I am on Gabapentin 900mg HS also for RLS and sleep. It is supposed to improve sleep architecture.
  20. I feel better after a shower. Standing for long periods is difficult for me, as I feel lightheaded and other symptoms, but I can stand longer in the shower than elsewhere and always feel better right after a shower. I always thought that was because of a hyperadrenergic type POTS constricting the blood vessals and the heat of the shower opens the vessals. I am now starting to wonder if there is just a different cause of my POTS than other peoples.
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