MomtoGiuliana

I have noticed other members describing a similar symptom over the years. Here is some past discussion that may be helpful. Tight Band Around Throat - Dysautonomia Discussion - Dysautonomia Information Network (DINET) Tightness in throat - anyone else get this? - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

I would not attribute this to POTS. Hope you can be evaluated by your dr.

As others have said this is a common symptom. I definitely struggle with feelings of fear, sense of doom and anxiety when I have a flare up and I know a lot of it is being caused by the condition and not because of it (if that makes sense). Meditation and breathing exercises can be helpful for me. And also understanding that the feeling is rooted in a physiological cause can help a bit. It's hard. Sorry you are going through this.

This might be of interest https://www.dinet.org/links/usefulness-of-a-tilt-training-program-for-the-prevention-of-refractory-neurocardiogenic-syncope-in-adolescents-a-controlled-study-r245/ (sorry this link to this article referenced above no longer works) https://www.dinet.org/forums/topic/21016-taking-tilt-training-seriously-i-wasnt-who-wants-to-tilt-with-me/?tab=comments#comment-195319

I am glad you are getting the vaccine. For the vast majority of people the vaccine has been shown to be very safe. I agree w toomanyproblem that there is crazy and excessive misinformation out there. Delta is known to spread very easily and without vaccination as a mitigation our hospitals will be brought to their knees and the effects will be felt by more than just COVID patients. Hopefully FDA will approve the vaccine shortly. I had Moderna back in April/May. I felt sick for about a day with the 2nd shot. I was also scared about a flare, but I didn't have one.

I also have a low tolerance for caffeine. POTS is probably a factor--although I think some people w POTS find caffeine helpful. I do OK with a cup of green tea. But I cannot drink an ordinary cup of coffee. I've tried but I feel awful--overly wired bordering on anxious, heart rate goes up with more palpitations, difficulty sleeping hours later. I think it must be variable from person to person how the body processes it and long it takes to clear caffeine. I've not heard about bloating and caffeine--sounds like you drank a lot of fluid however? I would be very wary of energy drinks.

EDS and POTS can be connected as many of you are already aware. https://www.dinet.org/info/eds/

When eligible I plan to get a booster. I was sick for about a day and half after the 2nd shot (Moderna)--fever, aches, dizziness, fatigue. I wonder if the booster will cause the symptoms the 2nd shot did. Of course it will vary from person to person but it will be interesting to see data on that. The goddaughter (age 25) of a good friend of mine is in the hospital on oxygen since last week. She was not vaccinated. I'm not willing to risk that happening to me, or causing it to happen to someone else.

There have been past discussions about this, eg Baroreflex Failure - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

I recommend talking to a doctor about these concerns. Do you see an EP (electrophysiologist)? Keeping a record of events may help as a first step. A holter monitor may be needed for a doctor to see what may be going on.

Hope you feel better soon.

So sorry, I have had that issue in the past and it is very scary, and does warrant an ER trip if severe. I also had the experience of being in the same hospital where I was told I had severe anxiety, years later, and staff actually were aware of POTS. Unfortunately I do not think ER staff are routinely informed--for example--to test orthostatics when symptoms and and other testing warrant, and also that most patients w POTS who come in feeling very poorly would benefit from IV saline before being sent home. But hopefully we are moving in the right direction with awareness in the general medical community!

I've been starting to get hot flashes./sweating episodes. It doesn't happen during the day, for me. It happens just when I am going to bed and winding down (or trying to). However the feeling in your stomach does not sound like menopause.

I have found that some drs don't really grasp the variety of significant orthostatic changes we experience. They tend to think POTS=low bp along with the elevated hr on standing. This is true for some of us, but I also have pretty high bp on standing when I am in a flare. I would also for that reason be afraid to try any medication that would raise my bp during a flare. Has this dr seen your orthostatics--were you diagnosed with a TTT? Can you take some measurements of your bp at home sitting and standing and report these to him? I do know of at least one member in the past here who suffered a stroke while taking a medication that increased her bp. I think it is a rational concern.

Altitude sickness can happen to anyone if they go suddenly from a low altitude to a high altitude. Going from sea level to 10,000 ft would be pretty taxing on the body. I think any change in elevation that exceeds 6,500 ft can cause symptoms. Some people might barely notice it and others could need a few days to adapt. There is probably a POTS connection. I have been at 10,000 ft or higher twice since being diagnosed with POTS. The first time I was totally disabled for a day or two (at 12,000 ft from sea level), but then started to feel much better. The 2nd time I had a horrible headache which was relieved as soon as we got back down to around 7,000 ft. It's important to hydrate and rest for a couple of days if you notice symptoms from what I understand.

I also have pain with POTS relapses. I have read that POTS patients are more sensitive to pain. I get aching, burning and other sensations much like what MTRJ75 described. I also get headaches that don't respond to OTC pain relief. Last relapse I had severe kidney pain that was unable to be explained despite extensive testing.

That is great!

So sorry. I have also had severe crashes every two or so years. No identifiable trigger. Between the crashes I feel pretty well. I agree that is is amazing one can feel this poorly and have something benign. IV fluids are the only thing that helps, and only bc it keeps me from having to lie down constantly. I've never had elevated d-dimer that I am aware of. The only thing that gets out of whack for me is potassium goes a bit low. Sometimes magnesium too. And this is despite eating and drinking--no vomiting or diarrhea.

Sorry you are feeling badly. Is this an evaluation for disability--or do you mean you are seeing a dr for diagnosis. Are you seeing a specialist in autonomic dysfunction? Have you been diagnosed? In my experience w doctors it can help to have someone with you who can back you up--say they have observed you feeling poorly, this is not normal for you, etc. It can help to have a log of symptoms, or anyway symptoms written down so you make sure you provide all information to the dr. If the doctor does feel your diagnosis is psychiatric they should refer you to an appropriate physician for diagnosis. Hopefully misdiagnosis of POTS for depression/anxiety is not as common as it was 20 and more years ago.

I have had insomnia during flare ups, and also I generally have insomnia from time to time that has worsened into my 40s. I found that regular bed time, especially regular time of getting up/out of bed, is essential. I can sleep in one day until 830 AM and the next evening I am wide awake and cannot sleep. I have also found the method of sleep restriction (which extends beyond just getting out of bed at the same time each AM) helps when I get stuck in a rut of poor sleep. You can find information about this elsewhere, but basically the idea is that you purposely stay up and out of bed and slowly increase the amount of time in bed (still getting up at same time each AM). It has worked very well for me to get me back on track to more normal sleep.

I get saline infusions during flare ups--2-3 times per week at an infusion center. It has helped a lot. My specialist has ordered them. Also my general practitioner has order them. When I am in a bad flare up it doesn't make me highly functional again but it gets me well enough that I am not lying down most of the time. And I think that is so important bc lying down a lot will exacerbate orthostatic intolerance and it becomes a negative feedback loop--at least for me that is the case.

Mine worsens during flare ups.

My blood pressure goes up when I am in a flare. Increasing fluids paradoxically brings my bp down. I do also increase my beta blocker as that helps bring both my hr and my bp down a little.

I had a very similar experience. I think bringing in a psychologist can be helpful. They are the expert most qualified to come to a conclusion about mental health and it can help a physician consider other explanations.

Yes, I get sensations like that--a feeling like adrenaline in my limbs followed by weakness. Increasing fluids generally helps relieve some of this.