plaster89

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?

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!

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.

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.

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.

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

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?

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.

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.

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.

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.

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?

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?

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.

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?