gnnmi

Around the time my POTS/EDS symptoms began, I noticed a tight feeling around my upper abdomen. This has gotten progressively worse, to the point where I feel like I am wearing a too-tight corset all the time. The entire abdomen is also numb and I often get huge muscle spasms in my abdominal muscles as well. Does anyone know what is going on? I have gotten no medical explanation. Thanks

Thank you, this explains a lot. Oh joy....

Thank you. From my tile table test, it looks as if my heart rate went up 33 beats right away, blood pressure stayed stable for ten minutes and then dropped 28 points. I wonder if that is "normal" for having only POTS or indicates possibly both. Thanks. Can anyone interpret?

In reading over my tilt table report and subsequent notes from the electrophysiologist, it seems that both NOH and POTS are mentioned as diagnoses. Is it possible to have both? Thanks

I have POTS, not sure yet what subtype. A new neurologist just diagnosed me with EDS also and gave me a prescription for Clonodine, half a .1 tablet at night to calm things down. It definitely helped me sleep more deeply although it did not eliminate the usual sleep interruptions of flushing, sweating and elevated heart rate. In fact, it seemed to increase those symptoms. The Clonidine changed the times at which I wake up, and once I was awake I would stay awake for up to two hours rather than going back to sleep as before. After a few nights of taking it, I was also looking for cookies in the middle of the night. During the days I felt depressed, so I cut down to 1/4 of the pill. I'm back to my "normal" sleeping patterns now, but my peripheral neuropathy seems quite a bit worse. Does anyone know much about Clonidine and why I had this reaction? Does anyone else find it ( possibly) exacerbated nerve pain? I did call the doctor's office and they advised me to cut down then stop taking it and said we can try something else at my next appointment. Does anyone else use another safe medication that works for them on severe sleep interruptions? Florinef increased my neuropathy and I was scared to try Midrodine because of the creepy-crawly side effect, which I always experience anyway. Thank you. The Clonidine only cost me $1.78 for a two month supply so I liked that side effect. G

MTRJ75, I saw Dr. Nemechek when I was first having trouble and suspected some kind of dysautonomia but was not having the full blown symptoms yet. Like I said, I didn't really follow through, although recently I have started using the unit again when I remember to. I can't say which symptoms it treats since I don't have enough experience using it. The charge for the first device at the doctor's office was $100. That one wore out and I replaced it with another one for $25. He also focuses on SIBO as a cause for autonomic problems. Best of luck.

Dr. Nemechek also gives his patients a device for stimulating the vagus nerve. I have one from him, and it is a basic TENS device fitted with an ear clip, both available on Amazon, that you clip to the tragus flap of your left ear. He recommends using it morning and night for one hour each. The setting is 50 hz at 250 width. Very simple to construct yourself for less than $50. You use alcohol to clean your ear and the clip each time, then clip it to your ear, turn the device up to make sure it's properly fitted and you feel the buzz, then turn it down again so you barely feel it. Mine wore out and I just made up another one for about $35 altogether. The TENS machine I have is called TENS 7000 but any TENS would do. As for results, I have to say I haven't been consistent with it, although some of my symptoms have improved quite a bit. I can't be sure why and I appreciate the reminder about using it. I hope this helps someone else.

MTRJ75, I was happy to find your post because I experience very similar symptoms when I wake--strange squeezing feelings in my torso especially but also down the arms and legs, extreme sweating (I often have to change my nightclothes twice a night), elevated heart rate, often followed by muscle cramps in my legs or feet and anxiety, then comes the burning and buzzing. It does not wake me up; rather, it begins seconds after I wake up as soon as I move even a little.. I usually wake up twice before I want to get up, and the squeezing, burning, etc. only happen when I wake up for the last time. The other times I experience mostly heavy sweating only. To some extent I have these feelings during the day also, but mitigated. I bought a foam wedge that goes under the entire mattress and elevates the head of the bed by about five inches. Since installing it, the morning nausea and dizziness have disappeared almost completely. It is the only thing I can offer that may help you, but it's nice not to have those particular feelings any more. I had lost so much weight I was worried but it has evened off since I elevated the bed. I have also been diagnosed with Lyme disease and hope that is not the case for you. I do wonder if these horrible symptoms are related to the Lyme more than the POTS for me, not sure. I take Doxepin for sleep and recently upped the dose from 10 mg. to 25 mg. It takes the edge off, sort of. My neurologist prescribed it at my request and said she wants me to see a sleep specialist also before raising it. Otherwise I do not take any medication for POTS. Gnnmi

Thanks to everyone. It's nice to know I am not alone. I am already being treated for B12 so will keep looking and post if anything helps. Meditation takes the edge off and I will look into nutritional deficiencies. Good point.

I am diagnosed with POTS and have neuropathy in my legs, trunk and arms. . Every time I start to fall asleep at night, I am jolted awake with an adrenaline surge. This also happens again around 1 and 4 a.m., accompanied by severe sweating that can go on for up to half an hour. I have to get up and change my nightgown twice a night at least. The adrenaline is like kerosene on the neuropathy, which then starts pulsating all over. This in turn is followed by feeling extremely cold, with crawling feelings in all the places I have neuropathy. I am desperate to sleep. I often give up at the 4 o'clock episode and try to get through the day, then it starts all over. I often doze off during the day because of this, and am jolted awake after just a few minutes. Now I am starting to sweat during the day also. I tried Florinef which increased the nerve pain. My doctor then prescribed Midrodine thinking my blood pressure is going too low, but I am afraid to take it since it causes creepy crawly feelings. Can anyone explain what is going on and how to deal with this? Thank you.

I was diagnosed with POTS in my sixties several months ago, although looking back I've had symptoms for many years that just reached a head for unknown reasons, and I also have whole body nerve pain. I do not yet know if I have a POTS subtype, did not know enough to ask at the time. My symptoms include severe, drenching sweating at night and in the early morning, multiple nerve symptoms and more recently, nausea and dizziness. This weekend I was so ill I considered going to ER and begging for an IV, but have done that before and didn't want to put myself through something that doesn't help as much as it used to. In desperation, I decided to try a far infra red sauna, something that has helped my nerve pain in the past. One of my doctors had recommended against it because of the sweating that's involved, but as I said I was desperate. The result was dramatic improvement. The nausea and dizziness disappeared, I felt much much calmer and my brain was clear again. I slept much better and the next day I ate normally for the first time in months. I was barely able to eat before that, have recently lost quite a bit of weight and was getting worried. I was also able to go into crowded places, ride in the car, etc. without feeling overstimulated. I have gone into the sauna five days in a row now with similar results, for twenty to thirty minutes. I do sweat in the sauna but it's different from the usual severe sweating, and it is mild. I drink a lot of water before and during the session, and I have someone sit right there in case I feel faint or dizzy, which has not happened. Generally I wake up too early and will sweat heavily for up to an hour, which activates the nerve pain. It is miserable. This morning I was able to sleep longer, which was such a blessing. I did not sweat when I woke up, and although the dizziness had returned somewhat, I maintained my appetite and took a sauna again in the afternoon. It helped as much as before and the dizziness abated. I have no idea why this helped me and don't really care. I wanted to post this in the event it might help someone else. My guess is that my POTS is, at least so far, relatively mild, and I do not know if this would work for everyone. My heart goes out to everyone who suffers with this.

I am newly diagnosed with dysautonomia and had a difficult time visiting higher elevation, had to leave early due to weakness, nausea and headache. As I drove to lower elevation I began to sweat buckets. My clothing was soaked. I am taking this all more seriously and looking into compression garments for future trips. How do I know whether to get tops or bottoms? Does blood pool in only one or the other, or both? My. feet swell and turn red and I often feel slightly bloated but am not sure. I also have neuropathy. Will the compression garments exacerbate it? Thanks.