MomtoGiuliana

A very bad flare up I had two years ago started with my ears clogged really badly and taking a decongestant to relieve the pressure and loss of hearing. May not have any relationship to what you are experiencing, but in my experience anything that is off with the body can potentially trigger POTS. I have felt dizzy yet had highish bp. I have not been told I have hyper POTS, but when I am in a flare up I have episodes of high bp. Tingling of hands can be a symptom of a panic attack/adrenaline surge. Dysautonomia can cause strange, multiple and disturbing symptoms.

Not specifically--I would get pain here and there throughout my limbs, hands and feet. It started out quite severe and after several weeks started to improve eventually completely disappeared.

Hope you get better help and relief soon. So sorry you are feeling so poorly.

In my last flare up I had pain throughout my body--limbs mostly. It seemed like nerve pain. Saw a number of doctors as it lasted for 2 months but no new diagnosis. I am a lot better (for) now fortunately.

It is true that fatigue is present in all illnesses but in dysautonomia it can be quite severe, and in fact the most prominent and disabling symptom for some.

I agree with all the masks and social distancing flu should be way down this season. I think from a population perspective flu shots are being encouraged bc flu + COVID may put extra strain on hospitals this winter.

I always get the flu shot. I have never had any symptoms or POTS flare afterwards. I am personally more concerned about what getting the actual flu would do to me. Bc I can get POTS flare ups with common colds.

Brittany Welcome to the forum. Here is our list of physicians https://www.dinet.org/physicians/

It does seem strange to have a delayed reaction but I feel like this has happened to me on occasion. Examples I can think of in my experience include going to hair salon (and having my head tilted back for hair washing) and feeling OK at the time and quite bad the next morning. Also getting a shot (I could not tolerate B12 shots 2 years ago and I suspect this was what was going on).

Four cavities filled at once sounds stressful. that may have triggered a response. Did you get shots of novacaine? Sometimes just getting shots (not necessarily the material in the shot) can trigger a POTS reaction, for me. Some people w POTS are sensitive to the epinephrine in these shots. Although that wears off quickly it could also possibly explain a response. Hopefully you will go back to your baseline shortly. You can do a search on the forum for novacaine, epi, and/or epinephrine to find past discussions on this topic. So sorry you feel so badly

It sounds like you are trying all of the typical treatments that can help. Some people are really helped by IV fluids. Good you are trying to exercise when you can. Flare up I had two years ago I was found to be deficient in B12. That may be another avenue to explore.

So sorry. I know how hard it is to be disabled by POTS. Most people improve with time and treatment. Are you seeing a specialist and what treatments have you tried?

So very sorry. This is an awful situation. Do you have a general practitioner. My GP is actually the one who is aggressive about getting me on IV saline when I have a severe flare.

Surgery is a known trigger for POTS. So it is possible the surgery triggered POTS for you.

Hi Nin Salt and fluids do help many POTS patients. Salt alone may not be helpful without additional fluid too.

So sorry you have had such a difficult time with unexplained symptoms. Was the POTS diagnosis based on a tilt table test? POTS can cause many symptoms and can be very disabling. The good news is that many with POTS do improve over time. What specialists are you seeing?

Hmm that is interesting. I do think a lot of people are borderline low with D and B12 in the general population. But who knows. For us being low on these vitamins might be more of a problem.? And that totally makes sense to me that low blood volume can cause a feeling of anxiety or panic attacks.

So sorry. I've had two flare ups (bad) in past 2+ yrs after going 15 yrs with minimal symptoms. I really don't know what caused these--low B12, stress, perimenopause?? My dr says none of the above--he thinks it's a reaction to inflammation from viruses in both cases. In both of these bad flare ups I was sick for about 2 months and then it resolved back to my baseline. I know everyone's situation is different but I would definitely not assume your health is ruined. If you got better before you most likely will again. If fluids helped before, maybe IV fluids would be a good idea for you?

When I am in a flare I have body aches. Sometimes it can really be severe. I think also when I am in a flare I am more sensitive to pain. Does salt and fluid help? Usually that helps me to feel a little better at least.

I'm pretty sure my grandmother had it, undiagnosed. My mom said she was fatigued a lot, prone to fainting or feeling faint and had no tolerance for heat in her 30s and 40s especially. She had periods in her life where she was lying down during the day, daily. Never diagnosed. For some reason, if it is genetic in my case, my mom was never at all affected. I have 3 sisters but I am the only one with POTS.

Pistol--yes, I wonder.

I was thinking this too after reading an article this weekend. Although I do wonder if post viral POTS is already far more common than the medical establishment realizes.

Here is our list of specialists. I believe some do consult by phone (in the US--I think you may not be in the US) and of course more are doing consultations by zoom etc due to the pandemic. https://www.dinet.org/physicians/

When I have severe POTS flare up fluids and salt orally only helps a bit. I have found that IV fluids 2-3 times per week helps a great deal more. Digestive symptoms are quite common with POTS. I agree that any viral infection can trigger POTS and it can be an infection that itself seems mild. My specialist has said that any inflammation can potentially trigger POTS.

Here is our list of specialists: https://www.dinet.org/physicians/