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Everything posted by plaster89

  1. I guess it is called acrocyanosis. It is very important to get exercise IMO. When I stay inactive, the symptoms came back with a vengeance. It is also important not to over-do things. Do you or your son have dilated pupils?
  2. I hope you are both doing reasonably well! My guess is that I suffered an immune illness 9-10 years ago and that tipped my ANS out of balance. My age is typical of getting dysautonomia/POTS. I have blood pooling if I stand up for a few minutes and have orthostatic intolerance. I am doing much better after lying down for some time, and ofc there is no blood pooling when I lie down. I can say go out and do normal things for a one or two but I am gonna pay the price later so it is impossible for me to sustain normal activity. Currently I try to walk on fresh air for some time every day to improve my fitness, it is probably the best way I can improve my symptoms!
  3. It's possible. When I stand up straight for a few minutes, my feet and hands go purple. It is not happening when lying down. Doctors said this is a sign of autonomic dysfunction.
  4. They checked T3, T4 and TSH and all were in normal range. Once one of them was elevated but it was a one-off result and UCG confirmed no abnormalities.
  5. Yes, they came out normal. UCG was also normal. The only abnormal results are significantly elevated DHEA-S (I am 23 year old male) and relative lymphocytosis.
  6. Big thank you for your responses! I hope you are doing well! I have been tested for various viral, bacterial and immunological diseases. All came out negative. This "fever" is not an infectious fever per se, it is in hyperthermia mechanism, a set point stays elevated all the time (so no drugs work), it only goes down at night and goes up quickly after I got out of bed. Acute parapsoriasis. The treatment was successful but dysautonomia/POTS symptoms started since then. Also my lymphocytes are above normal. https://en.wikipedia.org/wiki/Pityriasis_lichenoides_et_varioliformis_acuta
  7. Hi everyone! I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever. https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract Do you have similar problems? What do you think?
  8. I had thyroid hormons checked and they were normal as was cortisol. The only result which came (significantly) elevated was DHEA. I have it elevated all the time.
  9. No one proposed this to me. I don't know if it is available in my country. They have done some autonomic tests on me. I was standing for some time and then I raised my hand and compared both together and they looked very different. Another test was deep breathing test while measuring my heart rate. It didn't slow down while breahing out as it should, it sped up instead. I have a bit of stuff going on like dilated pupils, heat intolerance, bright light intolerance, low-grade fevers during the day etc. My amateur guess is that my parasympathetic nervous system is somehow damaged and this is the consequence.
  10. Welcome everyone! I hope you are doing well. I have been diagnosed with POTS some time ago. My heart rate jumped over 30 bpm after standing up and the BP is going up a little bit as well. I also have purple hands and feet very quickly after establishing vertical position. This is all relieved by lying down. I also have mydriasis (dilation of pupils) and my extremities are always the coldest. So I might want to ask a few questions: * I read there are many types of POTS like neuropathic, hydroadrenergic and hypovolemic. Is my blood pooling (purple hands after standing) a sign of neuropathic one? While I also feel sympathetic drive almost all the time, it may well be a consequences of neuropathic problem. * I always feel better when I am walking in colder environment and keeping hands warm in the pockets (rare moments when forehead feels colder than hands). At the same time, my pupils are constricted. Is this normal and what this can mean? * I have become deconditioned over time and while I was having many symptoms for many years, a lot of them has gotten worse with physicial inability. It might sound hopeful but is there a good chance I can improve significantly if my fitness is better? My doctors are saying this is the key to recovery. I have found out my alertness and focus is quickly fading when sitting/standing but much more solid when lying down. However sometimes adrenaline takes over if there something important/interesting and I am able to overcome this yet it is followed by increased tiredness afterwards. I am taking Ivabradine once in the morning, which helped me in the first few months but then it stopped having that effect. It still lowers the HR but no longer improves how I feel.
  11. Thanks for answers. I have seen neurologists, but they weren't knowledgeble in POTS, and no, the allergy wasn't a problem. That's why I am asking you. The migraine happened to me in many places, once every half a year or so, but in the last few years I haven't had one. I started suffering from POTS/dysautonomia in the summer of 2009 after the autoimmune disease (it has been fully cured) but then since that day with triple migraine I started suffering cognitive symptoms in addition to the initial ones. I wonder if anyone had similar experience of heard of this situation.
  12. Hi everyone, I hope you are enjoying the summer. I have developed POTS symptoms nine years ago, mainly orthostatic intolerance, heat intolerance, dizziness in standing position, headaches, to some extent fatigue etc. However my cognitive function seemed to be fine. But then one day five years ago I had roughly three migraine episodes in one day. I had cold at the time and the weather was awful, which probably haven't helped. And then suddenly I started experiencing brain fog, confusion, my brain appeared to be hyper-active ever since. It wasn't the first time I experienced migraine episode (I think dehydration was the cause every time) but it were three seperate ones and the headache was unbearable until I went out and grabbed some fresh air and it was much better. I wonder if something got damaged that day and what I can do to improve this situation if that is possible at all?
  13. I heard about mass activation syndrome, but I am not familiar with it. I also have permanent low-grade fever, dry eyes, which apparently are symptoms of this syndrome. How is it evaluated/diagnosed?
  14. Hi everyone! Have you ever heard of this this? You scrap your fingernail through your skin and then after a few seconds it should go red. Does anyone have a reaction of white line emerging for up to few minutes? And what does it mean? Is it normal POTS symptom? Greetings.
  15. Hello everyone! I have been diagnosed with POTS a couple of years ago. A doctor put me on Ivabradine that initially helped but its effect decreased over time. I have a theory that my parasympathetic branch of the autonomic nervous system is malfunctioning and causing my symptoms, which include: * dilated pupils most of the time * dry eyes * heart does not slow down after exhalation during deep breathing (it speeds up actually) * low-grade fevers (like 37.5C) every day Every one of the above symptoms has one thing in common: parasympathetic nervous system is responsible for all four. It constricts the pupils, gives moisture to the eyes, slows down heart during exhalation and lowers body temperature. Do anyone have similar problems? Is my theory making sense and can be a possible explanation for my symptoms?
  16. I guess it can be a symptom of dysautonomia generally, rather than POTS itself. I know I have this abnormality, dry eyes and also elevated body temperature (like 37.5C). I wonder if anyone has experienced something like this, because it's hard to find a good doctor anyway. I know these kind of issues are not necessarily common in POTS.
  17. I had an ECG taken and they asked me to take a deep breath. Apparently the heart rate should increase when breathing in then decrease when breathing out. Mine didn't changed at all when breathing in and then raced 20bpm+ after exhaling. They said it is abnormal. I did the same with my oximeter/pulsometer and it was the same. I feel big sympathetic drive almost all the time. I also had a Schirmer test which showed little moisture released by the eyes on the paper. Does it mean my parasympathetic nervous system is not working? What can I do to improve my symptoms?
  18. Thank you for answers. I haven't been to a rheumatologist but was tested for ANA a few years ago (when symptomatic) and it was negative. I don't know if this exclude Sjorgen's syndrome or other tests are done to confirm/exclude this disease. I haven't had lip biopsy, no one even suggested that to me. My hormones are also not working as it should, dhea is very high, way above normal limits while testosterone is low.
  19. Hi all, I have been diagnosed with POTS some time ago but still couldn't find anything to give me a substantial improvement. I have that 30bpm+ increase when moving from lying to standing up, though my HR is lower on beta-blocker so it isn't going that crazy. I often have elevated blood pressure when sitting/standing, but it is always normal when lying down. Another one is the acrocyanosis that happens when you stand up and it is not present when I lie down. I know this is pretty common. But I wonder if some of you have any of following symptoms or are they really connected to POTS? * low-grade fevers, or should I say hyperthermia, as the fever drugs can't bring them down and it has no effect. * lack of moisture in the eyes, I had a Schirmer's test and the result showed severe dryness, I barely got any moisture. * when they did a Valsava maneuvre and asked to take a deep breath but my heart hasn't responded by slowing down as should, it even sped up * elevation of the B-cell white blood cells with the lymphocytosis often present (though sometimes it is perfectly normal and sometimes I have too much neutrophiles, there are big variations) I don't know if the first three are directly related to the POTS syndrome/dysautonomia or signalling the other disease that can be the primary cause or at least the second disorder. The fourth one can be caused by an autoimmune disease (it is completely cured now) which started my dysautonomia. However I'd like others to say if they had also experienced these symptoms.
  20. You may be right, it's been some time since I was reading how these medicines function. My main is there wasn't a big difference in how I felt while taking them. Well, it is named acrocyanosis and I have it while sitting/standing only. Reynauds phenomenon is regardless of position, right? Maybe I just have two kinds of pots lol.
  21. It's good the medicine is working for you. I guess there is not much of a difference between Ivabradine and Propranolol. It controls what I call 'adrenaline surges' better and I also have less pounding. I often experience cold hands/feet while the rest of my body is pretty warm. It is accompanied by really elevated pupils. I guess this is heavily associated with circulation issues because it isn't happening when I am in bed for example.
  22. Is it helping you? I also can have 150/90 BP. That make me wonder that I may have hyperadrenergic POTS (though my feet and hands go bluish on standing very quickly, a clear sign of autonomic neuropathy) as my blood pressure goes up on standing and feel sympathetic drive all the team.
  23. I know this thread is a month old but I am taking Ivabradine for almost a year. I was previously taking bisoprolol and haven't tolerated it well. Ivabradine did help somehow, it did lower my HR and stabilised my symptoms. There are no miracles though. I also have had elevated BP on standing and it's still similar on this med. Are you taking it now?
  24. Hi! I have been finally diagnosed with POTS late last year and given medicine to improve my symptoms. I am 5'10" and weight about 155 pounds back then. I started taking Bisoprolol to slow down my heart rate, it was a pretty low dose. My height has been stable for the past few years but in the few weeks since taking this medicine I have gained 10 pounds! Yes, it is true that I felt more tired than earlier and was having less energy. I wasn't feeling great on Bisoprolol so it was switched to Ivradine and it appears to be giving me a nice improvement. However, the weight have not gone down, in fact it went up further! It is strange because I am not eating more than earlier and I am arguably the most active since three years ago. But the weight is either stable or going up, currently I weight 168 pounds. I know these extra pounds are not helping my POTS. What would you suggest?
  25. Really thanks for your comments, looks like I am not alone! Is there something I can do to increase oxygen levels? Maybe drinking a lot of fluids could help.
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