MomtoGiuliana

I would also guess the sensory overload could explain it. Also, it's very hot a humid right now in many places, and you may be responding to that? Many of us are not tolerant of heat and humidity. I actually tend to feel dizzy on a treadmill and don't do well on one, and do better going outdoors to walk. (I do think that getting fresh air and sunshine (as long as it's not too hot) is helpful, for me (even when I've not been up to much walking).) I also find inexplicably that I can feel pretty stable in my house, but simply going out, anywhere, can be destabilizing, and I will feel a lot worse, when I am in a flare.

Oh no. Hope you feel better soon. You are literally the first person to post about paxlovid, at least according to a search I just did, so no one has mentioned using it on the forum so far. However I do know many people of many ages and various issues who have taken it and it seems to help greatly in most cases. Dysautonomia is not considered a co-morbidity to date from all I understand. We do have this video, if you are up to watching: https://youtu.be/JI_c95dvg0w Hope you feel a lot better soon.

When I am in a POTS flare up this happens to me a lot. From what I understand blood pools below the heart and even if BP is normal not enough blood is getting to the brain. Increasing blood volume with more salt and more fluids/water helps to diminish this symptom for me.

Glad you could do telehealth. Hope you are feeling more stable. Usually when I am about to go into a POTS flare up the high hr on standing is the first thing I notice. Drinking fluids and adding salt can help.

I have a low tolerance for caffeine and this got worse when I developed significant POTS symptoms 20 years ago. I think this is not unusual, as it does stimulate the nervous system. For me, even small amounts can affect my ability to sleep. I can also develop a feeling of nervousness. And it can cause more heart palpitations, for me.

This has been discussed in numerous past topics, so if you don't get responses you might try a search. Here is one of many past discussions: Dr. Levine-New Efficacy Of An Exercise Training Intervention In A Community Setting. - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

Definitely mention to your doctor. I have had symptoms like that off and on with no explanation. Except I was found to be low in B12 several years ago. taking B12 supplement has largely improved these symptoms, for me.

I was glad to have a diagnosis bc it helped me to make better decisions about my health. It has also been helpful to see a specialist and for him to order IV fluids when I have bad flare ups. Without the diagnosis or that relationship, care would be a lot harder.

Correct no genetic test--eg blood test--but a geneticist with expertise in connective tissue disorders typically does a thorough physical exam and reviews medical info available from family members to make a diagnosis. That was my understanding when I looked into getting tested myself years ago.

I believe a formal diagnosis must be made by a geneticist who is a specialist in this area. Here is one past discussion https://www.dinet.org/forums/topic/14472-eds-experts-want-to-make-an-appointment

I did find this past discussion. There may be more. https://www.dinet.org/forums/topic/3690-warning-osteoporosis

Yes, a gradual approach to exercise is best in most cases. There have been a lot of past discussions about this topic, eg https://www.dinet.org/forums/topic/32391-exercise-intolerance/

Yes inflammation can exacerbate POTS. My specialist blames every flare up I have on some sort of inflammation. I may not understand your 2nd question--but yes exercise can also worsen symptoms, at least temporarily. Exercise can also help improve symptoms in long run.

Hope you can follow up with a physician soon.

My EP has told me he bases diagnosis on symptoms as well as a Tilt Table Test. I am wondering if the dr you saw is an expert in autonomic dysfunction? I would recommend looking for a EP who treats patients with autonomic dysfunction for another opinion.

When I was in my 30s and early 40s especially, I always knew I was ovulating bc my POTS symptoms temporarily worsened. For some reason some of us are very sensitive to hormonal fluctuations. Increasing fluids and salt helped me.

I am vegetarian as well. In a flare I eat small more frequent meals. I don't change my diet generally, except I do try to get more protein. I eat eggs--which not all vegetarians do. But I will eat hard boiled egg for example, once a day. I also add whey or pea protein to healthy smoothies.

Thank you for that explanation Pistol. I never really understood the mechanism that explained why I would feel worse right before and during my period. But yes extra fluid and salt helped me too each month. I also use coconut water bc of the added benefit of a little potassium that seems to help me. I had a very difficult time through perimenopause with POTS but since now going thru menopause many days I feel the best I have felt in years! So yes for many of us there is a connection of monthly cycle and POTS. (And also pregnancy--my worst experience with POTS was during pregnancy and it was even worse post partum). If increasing salt and fluids is not enough--for me--my dr has prescribed IV fluids in the past and perhaps that could be tried. There are of course medications that can be tried too if this isn't helping enough.

Just in case you haven't seen it we maintain a list of physicians here https://www.dinet.org/physicians/ You can also do a search on the forum for key words such as these facilities to see past conversations. Many here have gone to Vanderbilt for testing and diagnoses. I think not so much for treatment. This can be the same for Mayo.

You mentioned you were evaluated by a cardiologist--was this an EP? I was also initially evaluated by a cardiologist, years ago, who determined there was "nothing wrong with me". It was several years later that I was finally correctly diagnosed with POTS by an EP. You may want to try to find a specialist to evaluate you. Even if your hr is going back down to 50 bpm eventually, the symptoms you are describing suggest further evaluation to me. Do you feel better if you can stay well-hydrated? That typically helps POTS patients to feel better.

It is hard. Thankful I did it bc cancer was found--which was a total shock since no one in my family has had colon cancer. The prep for surgery was even more intense. Fortunately it was very early stage. I would suggest talking to your dr about getting iv fluids prior to the prep. If it's really impossible to do it any other way, they should either bring you in early to get fluids or even hospitalize you and have you on fluids. They now recommend everyone get a first colonoscopy at age 45. If I had the cancer would probably have been a precancerous polyp and much easier to treat. Now I also have to live with the fear that the cancer will come back.

Tilt table test? That is a long time to wait -- especially if you are feeling poorly.

Getting a diagnosis really can be half the battle, so I think you are right overall to celebrate having answers. And considering what other conditions can cause these symptoms, there are definitely more dire diagnoses. POTS for most people can be managed and or will improve on its own over time, although flare ups are also common. Great that you have a caring doctor. I also felt relieved to finally have a diagnosis (20 years ago!). I did improve within months of diagnosis. I have had relapses but mostly I've been able to live a pretty normal life--just have to be careful to stay hydrated--most of the time that is my only issue.

You may find it helpful to watch our advisor Dr. Blitshteyn's video about COVID and how it can affect dysautonomia patients. https://www.youtube.com/watch?v=JI_c95dvg0w She explains the science behind our decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician.

This past topic may be of interest https://www.dinet.org/forums/topic/32393-covid-booster-question/