Sea otter

It is not in your head. You know your own body, whatever you have it's real, don't ever doubt that. 🤗

@MaineDoug thanks! The thing is that lately I am discouraged with some other things related to illness. In my country we don't have specialists, only few doctors know something about it, and we are pretty much on our own as patients. We are searching alone for all information and trying to raise awareness. Unfortunately, there are no results yet. It is very discouraging to suffer from this awful condition, and on top of that carry the burden of raising awareness and educating people/medical staff in order to change something.

@Pistol I am so glad you mentioned a long list of symptoms. Because I have so many symptoms... In my country we don't have specialists, only few doctors know something about it, and we are pretty much on our own as patients. We are searching alone for all information and trying to raise awareness. Unfortunately, there are no results yet. It is very discouraging to suffer from this awful condition, and on top of that carry the burden of raising awareness and educating people/medical staff in order to change something.

Thanks for your response. I also checked on POTS facebook groups and a lot of people have some kind of flushing on face or other body parts. Seems it is common.

@MaineDoug You are definetely one of a kind. 😊 Yes, sometimes we can laugh of all this, but sometimes it is really tough. People have so many problems because of illness or have no support. I think women struggle with some things because of hormones - monthly cycle, PMS... I don't like how my illness sometimes affect my emotions. It's neverending battle, it's always something.

@Helene you are not alone. Lately I also have hard time coping with dysautonomia/POTS. I am just sick and tired of being sick and tired...

@Ranga thanks. That makes a lot of sense.

@Ranga me! I am so glad that you mention this. I have a lot of symptoms on the left side of the body. And noone knows what is that, some doctors said this is not related to POTS, some that it might be. And all of my tests are fine. I feel like something is pressing on my left side. Here are my symptoms: pain and pulsing sensation by the left ear (left side of the face). Like something is standing there and is pressing something, especially when I am eating, talking, laughing, moving my eyes... Pain is spreading to the left front side of the neck with some nodules and itching. Sometimes pain is going to my left side of body - arm, thorax, leg and some spazms also occur. Sometimes my left side of face is red, like it is burning inside and is little swollen. It reacts usually to heat but it's not the rule. I have crackling and fullness in my left ear; with moving, sounds, swallowing; there is also no rule. All these symptoms started along with POTS symptoms.

@bizbizThanks for response. Same situation with laughter. Seems sometimes the smallest effort I do makes everything worse. When I tell that to somebody, they can't belive.

Sometimes I am losing voice - if I talk longer or sometimes for a short time, my voice is hoarse and throat hurts (front side of the neck). I feel exhausted just from talking. Is this POTS (dysautonomia) thing? Someone have similar problems?

@Bergbrow thanks for responding and sharing your experience.

@Horizons1 welcome! Unfortunately, a lot of people after covid experience many strange symptoms. I have POTS, and yes, fast head movements or spinning makes everything worse. As far as I know, tilt test can sometimes be false negative. Also, I know some people with POTS that don't have so much problems with pulse, but with fatigue and dizziness. Every person is different.

@Pistol Thanks for the info.

Someone have this portable stool? Are you satisfied with it?

Sometimes I start to cry when I am in bad flare, I start to shake and cry (sobb at loud), I can't control it. I read somewhere about crying attacks in POTS (dysautonomia), that this is also common with POTS. From my point of view seems like my body is crying because of everything that is happening with my body. And my mood swings are like I am in PMS. This is so frustrating, because I feel I can't control my emotions.

Sometimes I start to cry when I am in bad flare, I have tremor and cry (sobb at loud), I can't control it. I read somewhere about crying attacks in POTS (dysautonomia), that this is also common. From my point of view seems like my body is crying because of everything that is happening with my body. Afterwards I feel better.

Someone have this symptom - left side of the face red? Feels like it's burning on the inside. It is present usually when I have flare, but there is no rule, sometimes I wake up in the morning with left side of the face red. Don't ask me if I have MCAS, because I don't know. 😊 I only know I have POTS.

Thanks for your response. Seems we can experience so many different visual disturbances.

Thank you so much for your explanation. It makes a lot of sense. Also, tilt table test increased shaky vision, so this has to be related with POTS (dysautonomia). I think medical staff is not aware of many symptoms we experience and are thought wrong things about this condition. For example, they wonder why my vision is shaky all the time. They think it should go away with laying down. Because some of them think symptoms are present only when standing. They are soooooo wrong. 😊

Could this vision symptoms be related with POTS? - Shaky vision (left/right) ALL the time (I don't have nystagmus). - Eyes zoning out a lot, especially when I am tired (like I am overstimulated and need rest, I am aware of everything that is going on).

Thank you for sharing your experience.

Thank you.

Thank you all for your responses. We don't have upright MRI in country where I am coming from. I heard about it, and was curious about that. Thanks again.

Is someone familiar with standing/upright MRI? I know laying version of MRI has nothing to do with POTS, what about standing version? I am just curious.

Thank you for your response. I have been tested pretty much on everything related to MG, and tests came back ok. So I wonder why I have positive antibodies for three times. Is this just coincidence or this is maybe pots related or something else is going on. This antibodies are little tricky, on my blood result it says they can be eleveted in some other diseases as well.