MomtoGiuliana

Here's a past discussion that may help? Standup Mri - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

Tremors are a symptom for some patients. I have experienced this when my symptoms were severe in the past. There are a lot of past discussions on the topic. Here is one. You can search the forum to find many others. Full body tremors and cocyx pain. Is this POTS? - Dysautonomia Discussion - Dysautonomia Information Network (DINET)

A decision might depend on your insurance. My insurance favors some pharmacies over others. I stuck with a local neighborhood pharmacy even tho it was more expensive bc the location was very convenient and I felt like they knew me and my history. They were more personal and very responsive when needed.

Yes this happens to me sometimes. It is weird. I've never mentioned it to an eye dr. I also get yearly exams and other than being nearsighted my eyes are healthy. I also get a lot floaters and sometimes see bright spots of light too. I have mentioned this to my eye dr and he sees no reason why I would get bright spots appearing in my vision. Of course! (I say of course bc that is a typical response from drs for most of my sporadic symptoms).

Yes starting in adolescence. I began to have trouble with exercise tolerance. Even when I exercised daily I could not improve much. I was never athletic. I had issues with fatigue. I also had episodes of dizziness and vertigo. In my 20s these symptoms increased in frequency until a full blown severe year long POTS "episode" that started during pregnancy that completely disabled me. That is when I was finally diagnosed.

So sorry your daughter has been having these symptoms. Having had episodes of severe POTS at times throughout my adult life, I feel so sorry for kids who have to deal with this. It's good she's had thorough testing to eliminate other causes for these symptoms. You indicate she's had COVID and I know I read recently that POTS is being seen in pre-teens and teens after COVID, particularly girls. Headaches, dizziness and vertigo are common with POTS. I will say when I have had severe POTS symptoms, I have had symptoms even when lying down, including vertigo. So even tho a lot of literature may indicate symptoms occur on standing and dissipate with lying down, I have not always found this to be true in my experience. In addition, I can remember, especially when younger, waking up and feeling badly, when in a POTS flare up. Extra fluids and salt help me greatly. I think when we sleep and go for hours without taking in fluid, that may be one reason symptoms worsen.

If you do a search for "OHSU" some past posts will come up. You could see if any of it is helpful to you.

Will be thinking of you. Glad you are getting the best care possible for this!

Yes in my case it is more like vertigo, too.

I sometimes can feel dizzy shortly after lying down in bed. I've never checked my BP while having this symptom. It's usually transitory. Does changing the angle of your head help? Oddly I find I am less likely to feel this way if I lie completely flat (no pillow).

We have a list of physicians here that may be helpful if you have not checked this out: https://www.dinet.org/physicians/ We have information resources here regarding EDS: https://www.dinet.org/info/eds/ There have been/are many forum members here with both EDS and dysautonomia. Many have found successful treatments. It can take some time/trial and error to find effective treatment. Having a good physician is important.

Chest pain is a common POTS symptom although what you are describing may be longer lasting than what many experience. Here are some past topics that may be helpful. https://www.dinet.org/forums/topic/32695-chest-tightnesspressure-during-flare/#comment-293563 https://www.dinet.org/forums/topic/31030-intense-chest-pains/#comment-280854 https://www.dinet.org/forums/topic/10743-what-to-do-recurrent-night-time-chest-painprinzmetal/#comment-98259 https://www.dinet.org/forums/topic/26814-chest-pain-and-sleeping/#comment-251542

Here are a few past conversations that may be of help? https://www.dinet.org/forums/topic/19468-dr-abdallah/#comment-179380 https://www.dinet.org/forums/topic/19911-new-to-forum/#comment-184311 https://www.dinet.org/forums/topic/27711-merit-of-autonomic-expert-general-or-dc-area/#comment-256637

These past discussions may be helpful https://www.dinet.org/forums/topic/31661-any-other-great-dysautonomia-places-besides-vanderbilt-need-accurate-diagnosis-as-well/#comment-284578 https://www.dinet.org/forums/topic/28480-mayo-or-vanderbilt-which-would-be-best/#comment-262441

That sounds like a great option for you and your family too. Glad you were feeling up to going out. Definitely having a place to sit immediately when needed would be very helpful for many of us.

It could be the extra fluids you received and also tend to retain after surgery.

The last bad flare up of POTS I had my dr tested my B12 and it was 168. She recommended B12 injections. For some reason I felt worse after each injection. So after maybe three injections, we stopped and I did sublingual for months and eventually got my B12 up. Anyway, in my case, I do wonder if the low B12 triggered the flare up. I was also having some minor neurological symptoms (tingling in my hands and mild weakness in my fingers) that cleared up after months of taking B12. Low B12 is actually pretty common from what I have read. It is difficult to absorb and becomes more so as we age. It may not explain your symptoms, but wanted to share my experience. Other than the low B12, as many of us, I have had many tests when in a bad flare up, all of which come back normal--except sometimes low potassium and low magnesium. So I find I need to make sure I am eating and drinking foods rich in potassium and magnesium, especially when in a flare up.

Glad you are OK. I had the bivalent booster three weeks ago as well (Moderna) and felt a bit poorly with a sore arm for about a day, but my reaction was milder than the reactions I had to previous COVID boosters/shots. I agree Jyoti, hope that everyone who decides to get this most recent booster does just fine with it.

I am completely the opposite and heat intolerant. POTS patients are typically heat intolerant. However there has been past discussion about this that may be helpful: https://www.dinet.org/forums/topic/19622-hot-versus-cold-potsies-any-difference/#comment-181029

In my experience and what I have heard from other patients with POTS almost anything that upsets your autonomic system (which seems to be a long list including activity, foods, medications) can trigger a flare up of symptoms that can last days to weeks or even longer. Sorry to say. But also it may be hard to know what has caused a flare up. Again speaking from my experience and what I have seen on the forum over almost two decades! Alcohol is a diuretic and consumption can lead to dehydration and I know for me, an experience of dehydration can cause a flare up. Hope you feel better soon!!

Here are some past discussions that may contain something useful: https://www.dinet.org/forums/topic/22840-can-pots-cause-low-02-saturation-levels-pulmonologist-wants-me-to-have-surgery-%E2%80%93-need-feedback/ https://www.dinet.org/forums/topic/26501-is-low-oxygen-reading-common-in-pots/#comment-246802 Is it possible their equipment was malfunctioning? Especially wonder if the dr is stumped and this has not been observed at home.

I'm sorry you are dealing with this. We do have some information here that may be helpful. Multiple System Atrophy Links - MSA - Dysautonomia Information Network (DINET)

Interesting. I have taken it a few times (small dose) and each time I take it I feel a little dizzy and foggy. I have not checked my bp on these occasions. But I wonder if it may reduce blood flow to the brain or exacerbate blood pooling? No idea. It may help me a bit with sleep but the side effects are not worth it to me.

This may not apply for everyone, but I had similar symptoms after eating and my endocrinologist said that it was possibly due to increased blood pooling in the abdomen following a meal. This leads to more severe POTS symptoms when in a flare. He recommended more fluids with meals and smaller more frequent meals higher in fats and proteins and lower in carbs. In general choosing foods with a lower glycemic index. Here is info about glycemic index. You can also find lists of foods with their glycemic score/index #. https://health.clevelandclinic.org/glycemic-index/ I typically feel better when I avoid a high carb diet. Especially in the AM I find it difficult to tolerate high carb meal.

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.