DAB19

Thanks for your replies. I had the TTT completed yesterday and I got the results this morning, to my surprise, I did become hypotensive at 70 degrees tilt after about 26 minutes. I became diaphoretic, started having chest discomfort, and heart rate elevated (just below tachycardia). I hope this is the beginning of getting answers. I will discuss the results further with my Neurologist at my follow up next month.

I went to my Neurologist a few weeks ago and he did some testing for possible autoimmune causes of the dysautonomia. Previously I thought it could have been Mast Cell related but all of the tests came back normal. He called this morning to tell me one of the tests were positive for an autoimmune disease. I missed his call to talk about specifics but in his message, he said he wanted to do more testing, which included a tilt table test. I went to my patient portal and found a note saying: "The following antibody was identified: Neuronal AChR, Ganglionic (Alpha 3).* This profile in the proper context, would support neurological autoimmunity." I started doing my research and I haven't been able to find much but what I have seen hasn't told me much. Online, it says that Autoimmune Autonomic Ganglionopathy (AAG) should present with HYPOtension but I experience blood pressure fluctuations, especially HYPERtension. I've also never fainted which is also a symptom. I did, however, find an article from the NIH saying some patients may experience POTS-like symptoms but it doesn't say to what extent. First of all, would a tilt table test show anything if I usually remain hypertensive? Could this (AAG) explain most of my dysautonomia symptoms? Any information you could provide would be greatly appreciated. I have a follow up scheduled in a few weeks to see my Neurologist to go over things further.

I recently decided to buy a heart monitor for home use, I mostly got it to help bring peice of mind when I’m having strange heart symptoms, I never actually expected it to show anything... well... it did and I went to the ER. They did their normal cardiac stuff, said everything was fine, then released me. I, then decided to call my cardiologist (not a dysautonomia specialist) to see what my next steps should be... He returned my call at 9 PM and started to basically belittle me, over the phone and at night no less. I’m so discouraged, I feel like I’m between a rock and a hard place. I told my doctor of the new developments and he wouldn’t listen. Fast forward to today I was driving when I had a weird muscle spasm feeling in my chest, this was accompanied by lightningheadedness and shortness of breath, needless to say I’m in the ED again! !! I definitely plan on seeing another cardiologist, luckily I found a dysautonomia doctor during my research today that was close to me. But as luck would have it his office was closed today. I’m so upset I don’t really know what to do. Has anyone else ever felt like your heart was spasming? I’m also wondering if it could have been something esophageal mimicking a heart issue? Just looking for some consolation, trying to come up with theories. I should note that what I felt today didn’t feel like a PVC or PAC, it was different then what I’ve felt before. Just looking for some peace of mind, thanks for the replies. I included a picture of the home heart monitor reading. I showed the ER doc and they didnt give me a clear answer.

Back in late August, I got a small nail bed infection - I paid little attention to it for about two weeks until it started throbbing and turning purple, at that time I also noticed my tachycardia was acting up more than usual. This week I noticed that the infection is back, in another finger and my tachycardia is acting up again (Luckily, this time around I think I've identified the culprit... my nail clipper, so I tossed it.) I know more substantial infections can increase POTS symptoms but can small infections also? I have a doctor's appointment tonight, but I don't think she'll notice the correlation (if there is any)... so has Anybody else had similar experiences? Thanks in advance for the help.

I talked to my cardiologist about it and he didn't really address it. Unfortunately, I had to leave my previous POTS cardiologist, but my current doctor although good, doesn't have in-depth knowledge of POTS.

I notice within 30 minutes of eating that I can feel my pulse in my abdomen. I assume this is because of the increased blood flow to the GI tract; I also thought it could be gas build-up, but I'm not sure. Either way, it's a bit unsettling at times. I tried bringing this up with my gastroenterologist and she didn't know what it could be. I had a CT scan with contrast recently so I am assuming I don't have to be worried about AAA (unless one grew really fast since my last imaging study.) I also notice that my heart seems to beat stronger after eating and can last for a few hours. My heart used to race after eating, but since I started Propranolol about a month ago my tachycardia has been well controlled. Has anyone else dealt with these weird symptoms after eating?

So I ended up in the emergency room yesterday with severe abdominal and back pain. They did the usual blood work and a CT scan which showed nothing (as usual 🙄) I was discharged and told to take some stool softeners. The abdominal issues started early last week, it feels like there is pressure in my abdomen after I eat, it's like the food isn't being digested. I've also been having trouble belching which makes the pressure worse. In addition to all that I have been feeling feverish (highest temp I've caught was 99.5F) and worsened lightheadedness. I'm concerned that I might be developing Gastroparesis. My grandmother has it and I can tell it's not fun! The only thing is my grandmother gets terrible nausea with her gastroparesis and I don't have nausea, it just feels like there is a brick sitting in my upper abdomen. Has anyone experienced anything like this? Also, when I was in the ER they had trouble getting a good blood sample from me. They said the samples were "hemolyzed" and they ended up drawing blood several times before they were able to get a good sample, that took HOURS! Has anyone else ever dealt with this? I included images of the lab & CT reports. Thank you in advance for your help!

I have severe muscle spasms, and I'm literally having them as I type this... They started with the rest of my POTS symptoms back in December. My cardiologist put me on magnesium, and it didn't help much. I saw a neurologist who specialized in neuromuscular diseases a few weeks ago and he said the spasms aren't a concern, so he diagnosed me with benign fasciculation syndrome. He said there wasn't much that could be done to help them, however, he said if I start to notice muscle CRAMPS those could be treated. I have had a few muscle cramps over the last couple of months but they aren't as bad as the muscle spasms. As of now, my follow-up with neurology is scheduled for the end of the year and he said if the spasms continue to get worse he would consider doing a nerve conduction test. Although the spasms can be uncomfortable at times, knowing they aren't something to worry about definitely put my mind at ease.

UPDATE: I've been on the Gabapentin about a week and a half now. I started at 100mg and increased to 200mg this past Thursday. The muscle spasms are still bothersome but I think I get them less often. My first dose of the gabapentin caused a severe migraine but I haven't had one since. I'm hoping that as I continue to increase the dose I start feeling the effects more and more. My rheumatologist put me on the gabapentin, but I happen to have a new patient appointment with a neurologist coming up this week to discuss my neuromuscular symptoms. I'm hoping the neuro will have some ideas to help manage my symptoms.

He thinks it might help my severe muscle spasms and temperature sensitivity, tingling in the extremities, brain fog, and flushing. He told me to start taking it in the evening before bed, and we will increase the dose next week. I'll start taking it tomorrow evening, I hope it helps, even if its just a little bit.

I saw my rheumatologist today for the first time since my diagnosis of POTS in February. He thinks a lot of my most bothersome symptoms could be helped with Gabapentin aka Neurontin. He said he's starting me off at a very low dose and I won't likely feel any effect until we get to at least 300 mg. He plans on increasing the dosage incrementally over the next couple of weeks. I am a little hesitant to start the Gabapentin because when I was first diagnosed with POTS my cardiologist at the time assured me that Cymbalta was going to help me, after only one dose of the Cymbalta I ended up in the ER with a bad reaction. Has anyone tried Gabapentin? Did you notice a difference? Did it help? Did it make anything worse? Were there any bad side-effects? Thank you in advance for your answers!

I find that one of my worst symptoms is the CONSTANT brain fog/lightheadedness. I feel like if I wasn't so lightheaded all of the time I might have more good days. I seem to have lightheadedness regardless of my position. Do you have any tips for lessening the effects of the lightheadedness? I find Benadryl helps sometimes, but I don't like taking it so often because of the drowsiness, which can obviously be annoying in the middle of the day.

No, I've never tried a rice sock. I saw a new cardiologist this week and I brought up the muscle spasms/twitching and he suggested I take magnesium. I took my first dose last night and I already notice a major change.

I'm sure this question has been asked many times before, but are frequent muscle spasms and twitching normal? Is it related to the POTS or something else? I've noticed in the last couple of months, a little before I got my POTS diagnosis, I started having muscle twitching all over my body all day long - it even seems to be getting worse. I have also had multiple muscle spasms, especially in my left foot. More recently I've also started to notice this weird sensation that comes and goes in my left leg down to my foot (possible restless leg syndrome?) Could all of this be related to POTS? Should I be more concerned? I decided to schedule an appointment with a neurologist just to be sure. Any input would be greatly appreciated. Thank you! P.S. We are currently looking into whether I have mast cell activation syndrome, could mast cell cause these symptoms?

Thank you all for your responses. Luckily I am feeling a bit better today, I think rehydrating helped!