Strange Situations That Make Me Feel Symptomatic

[carinara]

Hello everybody, I experience and read about many situations that make people with POTS symptomatic, like eating big meals, heat, bending over and so on! But there are other situations that make me feel real bad at times as well, like getting real dizzy if i move my head to look whats behind me or if i move my head quick from one side to another (like people do when they for example park a car or watch a tennis match). Quick movements on TV or the cinema in connection with loud noises also make me feel dizzy. I also cant tolerate bright lights or candels right in front of me. I cant tolerate hot food and most of the time I get symptomatic about 1 hour after I had a meal. (Even though my meals are very very small).

I also get uncomfortable if I sit down with my upper body bending a little forward. (My POTS Dr. recommended this position to me, he said it should comfort me, but in reality it makes me even worse)

Can any of you relate to those Symptoms and what kind of weird symptoms do you experience?

Thanks a lot for your time and effort!

Carinara

[mrsdavidson8605]

I can definately relate. I can't handle loud noises (the phone for ex) and bright lights.. stress definately sets me off... heat.. bending down is a big one... going up and down stairs, etc.. sometimes I just have a bad day and have no idea what has brought it on!!! it stinks!! This week has been rough on me. Not sure if it's the new meds, hotter temps (ks summers are a killer) or what is going on... hang in there..

[Tammy]

Yes, chiming in a "me too" Movement makes me feel dizzy lightheaded, kind of disorientated sensation at times. Bright light almost makes me see spots as if about to faint on top of the other symptoms at times. And Noise/sensory overload, or carry on a conversation for too long, all triggers. I feel like I'm a catepiller that needs to hide in my cacoon in order for my body to somewhat regulate it self!

Tammy

[bellaluna]

YES! I thought I was weird! Turning the corner of the aisles in the grocery store can be HORRIBLE sometimes... it's amazing what we have to put up with sometimes, that "normal" people take for granted...

Mary

[sarct]

Add me to that turning my head thing. If I turn my head to the back seat to talk to my son I get really sick. Other things as well. I also have my child or someone else look for things under beds or dressers, because if I bend over I will get really crappy feeling. Once again it was a thing that people considered me being lazy for. "you just don't want to bend over and lokk yourself cause you are lazy." It feels good being bale to put those stigmas to rest.

A new one for happened this week and I plan on asking about it.

I had eaten breakfast and hour later went swimming and after about 10 minutes of being in the pool I felt this heaviness on my chest. I began seeing bright spots that prevented me from seeing anything at all. I felt like hypoglycemic sick, and immediately had to coax a unhappy 4 year old out of the pool, because mommy felt sick. I had to drag myself to my hotel room, and really didn't think I was going to make it. i was shaking like crazy internally. I had a yogurt and a banana and I began feeling better.

It was the bright spots that really freaked me out. It was a heated pool, so I am thinking it could have been that. Not sure what the deal was, or if it was the food I ate. i had a waffle with syrup. Not sure if that was the trigger and I was having a hypoglycemic attack or if this was something new.

I swear, it's always something new lately. i didn't tell my husband about it so I didn't ruin our trip. Bad enough I had to spend 2 hours in the hotel room resting with a 4 year old who just wanted to go play and have fun. Made me feel terrible.

[P SUDIK]

I can really relate,I always ask people to sit across from me(not next to me)I can't turn my head to talk,makes me really light-headed.I cannot tolerate lights or much noise at all.Even slightly hot foods bother me. As far as movies and tv shows,some of them make me very nervous. Hang in there,Pat

[Mary P]

Me too! I try really hard, when anyone is around, to hide as best as possible, the light-headedness and the ensuing loss of balance. I will sit down if at all possible. I will lean against a wall, a car. Once I even grabbed the arm of a man at church. His wife knows about my condition but I've never asked if he knows.

One dear friend, on seeing these things happen said, "You're really feeling poorly, aren't you"? I hadn't said a word about myself, but that gave me the opportunity to say that I was having a lousy day. He said, "I'm beginning to understand, and I feel pain for what you're going through". Score one for someone who is 'getting it'.

We went to look for plants/flowers, etc. for his spring planting. The smells, sights and colours of the hundreds of plants there, and the milling about of so many other people, was overwhelming. Again, I tried to hide things but he noticed how, when I couldn't hang on to his arm, I was swaying and grabbing for anything to keep me from falling.

We came home immediately and he suggested that my senses of smell and sight must be compromised, that I just couldn't process so much at the same time, and I had to agree. There goes one more thing that I won't be able to do anymore. I know that noises and a lot of chatter bothers me. Have any of you noticed this?

Now, if I knew how to use the icons, I'd have used a few appropriate ones along the way. Ha

Take care, everyone.

Mary P

[carinara]

thank you all for replying, this forum is such a great place! For the first time i can talk to people who can relate and understand me! At last, i know that there are other people around who experience the same strange symptoms and thats very supporting!

I can relate to all of what you wrote.

Scart, i know how frustrating it is to look after a little one, when your body just doesnt function right. When my daughter was still little ( she is 11 now). I felt very scared at times due to my bad health. I can't count the times when I got real symptomatic to a point like you experienced lately in the pool! I got very anxios then, because I wanted to protect her and as you know, there are so many dangerous situations children can get into (like runing around not being aware of cars driving by, climbing up things or 10000 other situations! But i must say, that back then i wasnt diagnosed yet! I didnt know that much about my triggers then. Iam sure, that if i had known all what i know about POTS now! I would have managed much better!

I can also relate to asking people to sit across from me (not next to me), because i often get symptomatic if I turn my head to talk. In fact its hard for me as well to have a chatter,i try to prevent lightheadness by talking extra silent, but then people complain and tell my they cant understand me and i should talk louder! I feel better if i do one thing at the time like for example first eating, then talking and so on.But when all of them things happen together like when your invited to a birthday party and everybody is talking loud, the radio is playing and the food is served! Thats often to much input for me!

Like MaryP wrote, i also try hard when anybody is around, to hide how i feel and to keep the lightheadness away by trying to sit all the time if iam out! But i often have a bad conscious coming with it, when i see for example how other people just

Get up and do little chores without problems, i always want to help others and thats a big thing i had to learn lately, that in order try to keep the symptoms away as much as possible, i have to keep sitting. Not being able to offer, for example older people the last seat in a bus, makes me feel real bad! Sometimes i still do it, but then i often get to a point where i get realy bad for hours.

[momofsara]

Hello everybody, I experience and read about many situations that make people with POTS symptomatic, like eating big meals, heat, bending over and so on! But there are other situations that make me feel real bad at times as well, like getting real dizzy if i move my head to look whats behind me or if i move my head quick from one side to another (like people do when they for example park a car or watch a tennis match). Quick movements on TV or the cinema in connection with loud noises also make me feel dizzy. I also cant tolerate bright lights or candels right in front of me. I cant tolerate hot food and most of the time I get symptomatic about 1 hour after I had a meal. (Even though my meals are very very small).

I also get uncomfortable if I sit down with my upper body bending a little forward. (My POTS Dr. recommended this position to me, he said it should comfort me, but in reality it makes me even worse)

Can any of you relate to those Symptoms and what kind of weird symptoms do you experience?

Thanks a lot for your time and effort!

Carinara

My daughter has many of the same responses as you, in addition she goes almost completely blind if she turns her head past a certain point . No doc that we have mentioned this to has any explination. Guess the symptoms you describe must be something related to the POTS or maybe you have dysautonomia also- have you been tested for this? sending you hugs and best wishes--susan

[gertie]

Do any of you have Meniere's disease or migraines, or tinnitus? I have the symptoms you mention but relate some of them to those two problems. Meniere's & migraines can also be part of dysautonomia. It's all more than I can figure out or cope with.

[BendyScooby]

Needing the loo brings my symptoms on as does being hungry, being thirsty, being tired, being too hot, having a cold or having a period. Don't know if anyone can relate to that?

[carinara]

Hello everybody, I experience and read about many situations that make people with POTS symptomatic, like eating big meals, heat, bending over and so on! But there are other situations that make me feel real bad at times as well, like getting real dizzy if i move my head to look whats behind me or if i move my head quick from one side to another (like people do when they for example park a car or watch a tennis match). Quick movements on TV or the cinema in connection with loud noises also make me feel dizzy. I also cant tolerate bright lights or candels right in front of me. I cant tolerate hot food and most of the time I get symptomatic about 1 hour after I had a meal. (Even though my meals are very very small).

I also get uncomfortable if I sit down with my upper body bending a little forward. (My POTS Dr. recommended this position to me, he said it should comfort me, but in reality it makes me even worse)

Can any of you relate to those Symptoms and what kind of weird symptoms do you experience?

Thanks a lot for your time and effort!

Carinara

My daughter has many of the same responses as you, in addition she goes almost completely blind if she turns her head past a certain point . No doc that we have mentioned this to has any explination. Guess the symptoms you describe must be something related to the POTS or maybe you have dysautonomia also- have you been tested for this? sending you hugs and best wishes--susan

How do you get tested for dysautonomia? I got tested and diagnosed with POTS, and a mild mitral valve prolapse I thought POTS is a part of dysautonomia! Since my native language is not english, i just looked up how wikipedia discribed dysautonomia, thats what i found:

Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and a number of lesser-known disorders.

So i dont really understand what you mean when you asked if i was tested for dysautonomia!

all the best wishes to all of you!

carinara

carinara

[Megan]

Alicia,

I don't have Meniere's disease, but my dad does. He doesn't have many symptoms anymore, except for the hearing he lost, because he got some kind of injections in his ear. I get migraines. A lot of the time I'll take Excedrin and take a nap, and if that doesn't help figure it must be POTS symptoms. I've kind of stopped trying to determine what is caused by what. If I'm dizzy, I take meclizine (I don't know if you take it, it was one of my dad's main meds when his meniere's was bad) and I try not to worry about whether it's a migraine symptom or POTS. I just take care of myself the best I can and treat symptoms one at a time. Figuring it out is just too much stress!

Meg