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  1. I feel horrible when i lift my hands and arms up over my head. Blow drying and brushing my hair are hard activities and so it putting/getting things from the top shelve. My arms feel very, very heavy and fatigued and my heart rate will go up then i get short of breath and feel like i might pass out. It is a horrible feeling. I read somewhere that it a common symptom in POTS(?) but not sure why.
  2. Hi, I had a TTT and they did not use meds. I didn't even know they used meds during at TTT until recently (and i had my TTT in 06) Also, i have had crazy heart rate fluctuations like you are talking about where it goes up really high then it might plummet. Most of the time it will go from 80 at rest then within 10 minutes of standing it will go up to 120 or more... classic pots as my doctor calls it- like earthmother- testbook And as for meds in general- i think it is pretty common with dysautonomia to have drug sensitivities- i know i have many sensitivities to drugs along with horrible allergies- during a lot of my allergic reactions my ears fill with fluid and could become infected... it is an odd reaction because i don't get the normal red, ichy eyes and sneezing and such... just full ears, drainage, and cough.... so i thought of that when you were talking about your ear incident. take care and welcome
  3. I feel worse when i drink, even a sip. My heart rate goes up immediately, and I get very dizzy.
  4. I do ok with showers, but baths are out- it takes hours to feel better, and hot tubs... as inviting as they look, i just don't dare!!!! Kinda stinks- it just seems like it would be soooo relaxing to jump in a hot tub or bath to take away the stress of the day- however, it just makes me feel soooo bad.
  5. This is why so many crimes go unreported. It is so upsetting that someone who is a victim is treated as though they did some thing wrong or has to fight to prove themselves and get justice. I want to tell you sorry, but that doesn't even express what i feel and it doesn't make you feel any better. However, know that i am thinking of you and hope you find justice- somehow. You should not have to feel afraid in a hospital- you should feel safe and this angers me so much!!!!
  6. Hey there, I got my hearing and balance test from a specialist however, he was referred by my ENT. So, i don't know, i guess the ENT is the best place to start. As for the inner ear question, don't quote me on this, but i am pretty sure you can only see the middle ear by looking into it. (again don't quote me, i am not positive) (but i think looking at the middle ear can tell you if there is an infection-because there is fluid or redness????) I am not sure if you can see much on an mri either.... my allergist said something about being able to see big stuff (like tumor) but that was it... who knows, she is talking about scoping my sinuses and looking at my ears.... (i would go back to ent for this.) I think the balance and hearing test was worth it- they were able to rule out (or diagnose) a lot with out doing any invasive tests. It didn't take long and i guess they can tell if you have inner ear disease, central nervous system problems, and other. It may just be POTS but it is nice to know it isn't something else!!!! Take care and good luck.... i know how tough it can be dealing with extra dizziness and vertigo (along with the pots dizziness and pre scope)!!!! oh, my doctor told me lots of water helps with the ears... (i can't remember why- but her explanation made since at the time. ) guess water is a cure for lots of things!!!
  7. My symptoms are also very inconsistent, some days worse then others. Some times i know exactly why, others i have no idea. It is so frustrating and i agree, so hard to explain it to doctors-
  8. Hi You might want to try and see if you can get a hearing and balance test- if anything to rule out all the bad stuff and leave your mind at rest. I don't know how much it costs with out insurance, but it is a simple test that a specialist gives and is pain free. He can rule out any central nervous system stuff. i am sorry you are going through so much, i know that the tests are a pain, but sometimes if anything, they are helpful in ruling out scary stuff and maybe, just maybe leave the mind at rest... I hope things come together, take care
  9. I agree. It is hard to get everything done that needs done, do the things you really want to, and then have to give up the things you once loved doing... Thank you for sharing your story and know you are not alone, i have been there, i think we all have been there and will be there again. And like you said, i think the hardest part is when others just think you are weak- it just makes things tougher Take care, hang in there
  10. Agreed!!! Thank you all!!! It is nice to have a place to go where everyone understands!!!! Thanks for sharing all your stories!
  11. Hello, I don't know if ear pain is related to pots... But i do have ear issues. (i have fluid in my ears) I also get dizziness and vertigo in addition to the pre-scope pot symptoms. they think the vertigo is related to the ear issues. I have had balance and hearing tests, mri's, and c-scans.... (too many tests) everything seems normal- and my ent wanted to just blow it off and blame it on pots, but my cardio was sure the ears and vertigo was not related. I pushed the issue and finally made it to an allergist and she thinks it is due to allergic rhinitis- they found out i have horrible allergies and i dont have the normal symptoms of itchy eyes, running nose, etc. i am not sure if this answers any questions, i also dont know if you can have ear pain and vertigo with out ear problems- and it only being the pots.?..but thought i would share my story anyway... so many pots symptoms could be something else.... or just pots- its crazy!!!
  12. I got mine too. I was a little sore especially in my arm where i got the shot- i think it was because i tensed up when she gave it to me. Other than that, i didn't have any weird reaction.
  13. Hey, wanted to tell you that my heart rate has gotten up above 200 (once or twice.... or maybe more) mostly when i have to run or something. (have to is the key word here- i normally dont run unless it is a must ) It always freaks me out! but my cardio reminds me that even when my heart rate is at max for a short period of time it isn't going to explode! i think as long as it goes back down it isn't a problem. I would just think it would be bad if it goes up and does not come back down. It is very scary though!!! i would talk to your cardio about it next time you see him or maybe just call and talk to an RN- take care!!!!
  14. silly me- your right, i probably can't "crouch wrong". i guess what i really meant to ask if i was understanding what everyone meant by crouch.... because for me, like you said, it seems to make things a hundred times worse - i will just sit, pretty much any where- however standing back up is exhausting!!!
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