plaster89 Posted December 15, 2018 Report Share Posted December 15, 2018 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. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 16, 2018 Report Share Posted December 16, 2018 You can have a nerve conduction study done that would tell if you have nerve damage. I have noticed on my days off I feel a little worse. I have nothing that pushes me to move around so I relax from working for the week. I feel better in the cold to a certain point. If I get heated though my body will act up. And the summer heat makes my brain stop working. But generally 65 or lower I feel better. At least until this winter. Lately I have been having issues with my core temperature but I hope it is just a phase. Winter is my favorite season. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted December 18, 2018 Author Report Share Posted December 18, 2018 On 12/16/2018 at 3:54 AM, StayAtHomeMom said: You can have a nerve conduction study done that would tell if you have nerve damage. 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. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 18, 2018 Report Share Posted December 18, 2018 3 hours ago, plaster89 said: 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. A nerve conduction test is usually performed by a neurologist. It is a slightly painful way to see how fast electrical current runs through the nerves. Majority of the test feels like you are touching an electric fence for a second. Then the last 5 minutes my neurologist came in and poked me with some kind of needle in about 20 different places. I was sore from that part but I found it worth it because I didn't have nerve damage. And I know for a fact. I have also read that a biopsy can be taken to see if you have nerve damage in the smaller nerves. Have they checked your hormone levels? I have read some normal issues can cause eye dilation issues. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted December 19, 2018 Author Report Share Posted December 19, 2018 20 hours ago, StayAtHomeMom said: Have they checked your hormone levels? I have read some normal issues can cause eye dilation issues. 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. Quote Link to comment Share on other sites More sharing options...
Philipp Posted March 5, 2020 Report Share Posted March 5, 2020 Hi Plaster89, i wanted to ask you if you have found a treatment for your pots. I have exactly the same symptoms (Mydriasis, cold hands and feet, high DHEA). I did the celltrend test and it came back positice for A1 and M4 antibodies. I‘m currently thinking this may be low-Flow pots. I would really apreciate your response! Philipp Quote Link to comment Share on other sites More sharing options...
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