MomtoGiuliana

My first experience with POTS was while I was pregnant so it might have been pregnancy, but I was super hungry constantly. It was exhausting to keep up with. I gained 50 lbs during the pregnancy. I did wonder in retrospect tho if my extreme hunger was related to POTS. After that long 2 year bout with severe POTS, I have had flare ups sometimes severe, and lost my appetite and lost weight. But I also feel like each flare up was a little different in terms of the worst symptoms.

Just keep in mind this is one observational study of 23 subjects who developed new symptoms after the vaccine. It seems that this study is suggesting is that more research is needed-- not proving a causation--or that this is a common result. Keep in mind too that anything that induces an immune response could cause POTS or a POTS flare up--from what I understand--including other vaccinations. My dr told me it has long been known that coronaviruses in particular can cause patients to develop POTS. There does seem to be a clear risk of developing post-COVID POTS if infected. https://www.hopkinsmedicine.org/news/articles/on-the-heels-of-covid-19-influx-of-patients-with-pots-symptoms

Have you talked to your doctor? With any new symptom that would be the best course of action. Weakness can be a symptom of dysautonomia in my personal experience, but with everything else you have going on--getting over an infection, taking a new medication, it would be very important to contact your physician.

The symptoms we experience can be frightening and confusing as well as disabling. It helps to talk to and be understood by other patients experiencing this condition as well. I agree--it is priceless to us as a community to have moderators like Pistol who always respond to members' posts, and with helpful ideas, experience and information, and with empathy.

Even tho I was formally diagnosed with POTS years ago, I do not always have an abnormally high heart rate when standing, yet can have other POTS symptoms, sometimes quite disabling. At the time I was diagnosed with POTS I was told I may also have CFS. I've had so many symptoms at times of flare ups over the years, and varying combinations, it is confusing as to what is really going on at times.

I'm sorry it has been so hard. I remember my dr told me that in some people SSRIs CAUSE autonomic dysfunction as a side effect. However, this is usually just initially as your body adjusts. It seems weird that a med that causes that as an initial side effect would be useful to us.

I had that problem when I started an SSRI. My dr urged me to stick with it. It was 2 weeks of really bad symptoms. Things slowly improved after that. I have no idea if it really actually helped my POTS or if I was going to get better anyway.

These are typical POTS symptoms. Many people w POTS are disabled, at least at times, by fatigue/weakness or other symptoms. For me increasing fluids and salt has helped when in a flare up.

Welcome to the forum. We maintain a list of physicians here that might be helpful https://www.dinet.org/physicians/

I have some tinnitus but yes for me it gets worse with a flare up. Although I also have wondered if when in a flare I am just hypersensitive to everything and it bothers me more. I have been B12 deficient in the past. I don't know if it was coincidence or not, but taking large doses of B12 did improve my tinnitus.

Here's a topic from awhile ago with a lot of comments, may be helpful https://www.dinet.org/forums/topic/22864-starting-on-zoloft-setraline-tomorrow

So sorry. The one thing I have learned is there is often no clear trigger for a flare up. Some of the worst flare ups I have had there was no apparent trigger for. I've also had things happen, like surgery, or other stresses. and have had no flare up after. If you were doing so well, you will get there again--in my experience. I know it is very scary and frustrating.

This information might be helpful https://uniontestprep.com/nclex-rn-exam/blog/electrolyte-relationships-sodium-and-potassium

My electrolytes go low when I am in a flare. I've gone to ER feeling really badly--weak, a lot of ectopic heart beats, etc., and my Mg and/or K are low. I will feel a little better after fluids and supplement/s. No one has ever really explained to me why this happens. Drs ask me if I was vomiting or had diarrhea. I think overdrinking water CAN cause this--in extreme cases. My cardiologist (who diagnosed me w POTS) has cautioned against "too much salt" that can unbalance electrolytes by causing the kidneys to over excrete K--if I remember correctly. I'm not really convinced too much salt or water led to my imbalances in the past. But now when I am in flares I make sure to eat or drink high potassium foods and I take a moderate Mg supplement (although my gp cautioned against taking Mg supplement bc she is concerned it will cause GI issues). It's hard to know what to do sometimes.

Agree seeing a rheumatologist may be a good idea. I saw one and he ordered every test he could think of and nothing came back positive/concerning. But for me these symptoms come and go and have not been progressive. I would be more aggressive if the symptoms are persistent and interfering with function.

I've had all kinds of tests and imaging over the years and no neurological problem is ever identified. I do find it debilitating especially along with other symptoms, when it flares up. Yes I understand seemingly simple activities can really be impossible. Even when I start feeling better, I know I can't be in highly stimulating environments when I am in a flare--it can make me crash (become even more debilitated).

I'm sorry you are having all of these symptoms. When I am in a bad POTS flare I have burning and aching feelings across my body. Along with being easily exhausted. No dr has ever really explained this except to say it's part of the POTS syndrome. For me it subsides after weeks to months. I have been diagnosed w low B12 in the past (two flares ago). It may have helped me to take a supplement--not sure.

If this is helpful, this is DINET's statement of position on medical practices.

Yes when I had severe POTS I would feel worse after meals. Particularly in the morning. From what I understand this can be bc blood pools to the abdomen as you begin to digest your meal which excacerbates low blood volume. I would feel worse if the meal was large or high in carbohydrates. Many POTS patients feel best with smaller meals throughout the day and more protein and fat and less carbs. Also more fluid of course. Obviously dietary changes would be something to discuss w your doctor.

In case you did not see this topic already: https://www.dinet.org/forums/topic/32393-covid-booster-question/

I have the same issues. As yogini said even when BP is normal, things may not be working optimally for us. For me, increasing fluids and salt can help me feel more stable.

So glad you were able to advocate for yourself and that this dr heard you. Hope you get better very quickly. Let us know how you are doing.

People with EDS can have gum, teeth and jaw issues. Here is a past topic that may be helpful https://www.dinet.org/forums/topic/19733-teeth

I had no increased POTS symptoms after Moderna, including the booster. I did have arm pain, particularly after the first shot. After the second I was bedridden with severe fatigue, fever of 101 and muscle and joint aches for about a day. My reaction was less significant to the booster (temp not as elevated, not as severely fatigued), but I still wasn't up to going to work that day. I think it probably isn't unexpected to have increased POTS symptoms with a fever etc .

I was prescribed a low dose beta blocker that did knock my hr down. The "high hr" I mentioned was pre-diagnosis.