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About RobinB

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  1. @p8d what kind of doctor does the physical therapy with you?
  2. I have that same rocking sensation. I genuinely feel like I'm off balance, however I have tested myself by standing with my eyes closed and I don't follow over lol so it must be more of a perception thing. I've also passed the neuro tests. Mine feels more like I'm on a boat but I definitely thinks it's ear or eye related. And I feel the same way with patterns. I can't handle patterned carpet or tile floor. Even striped shirts bother me. If you get an answer on why this is please share! Stores bother me too, but I attribute that to the fluorescent lights and insane amount of stimuli whi
  3. I took Zoloft before I was diagnosed as they thought I had anxiety. It gave me really bad vertigo. I am also one who is afraid to try any more meds because of the side effects. I am however going to inquire about Lexapro as I have read a lot of positive things about that one. I also just want to thank you for advocating for your wife and reaching out to find support and help for her. This disease is so horrible to live with and a lot of us spend too much energy trying to be heard/understood/believed. She is very lucky to have you in her corner and I have faith that the two of you w
  4. Hi. I'm so sorry that you have a reason to be here. We can all empathize with how bad you are feeling. It's very hard when this disorder turns your life upside down. I've had this for 9 years and it is terrifying still. I did have a period of about 3-4 years where I got a little better. I was able to do most things I needed to do and some of what I wanted to do. However this year I have fallen back worse than before. I'm not saying this to scare you, but just to let you know that it can get better over time. As hard as it is, try your best to move a little each day. I get sympto
  5. @p8d I’m reading up on the CellTrend test. How did you manage to get those tests done? I’m very interested in doing that however I’m not sure how to go about it. Do I ask my doctor?
  6. Mine has flipped, but the other way. When I was first diagnosed it went from normal to 70/40 standing for 10 minutes. Longest 10 minutes of my life! Now mine stays pretty consistent (although I often can’t stand long enough to test it) with just the diastolic rising a bit and making my pulse pressure narrow. It feels just as awful either way. I haven’t seen a specialist since 2016 so I’m hoping that I can soon... to see if there are any notable changes that might lead us in the right direction. Hang in there! I know symptoms for me can change from minute to minute. Sometim
  7. @Sam4877 I may. I have not officially been diagnosed with that, however the specialist who diagnosed my POTS did a few tests and declared I am hypermobile but did not put it as an official diagnosis. I had tingling and numbness at the start of my health decline and it got better and now it’s back. If I cross my legs or sit on my hand for a few minutes it will go numb. That may be normal for everyone though? I remember having that happen when I was a kid too, long before I had POTS. I have woken up in the middle of the night with absolutely zero feeling in my arms. And I was laying on my
  8. I don’t know if it’s normal with POTS but I have it too.
  9. @p8d thank you for the suggestions. I actually saw Dr. B 4 years ago and he was the one who diagnosed me. Since then I’ve changed insurance and my PCP said all the testing they could do has been done. She won’t refer me. I could see about going back to him in about 6 months and see if anything else has come up. You’re right, if we aren’t going die, then we need to try to live. It’s just all so depressing. But I will not give up and I will not stop looking for answers.
  10. @Pistol yes I did have an epidural. Hmmm I have seen some posts about CSF leaks on here, but I don’t have the classic headache. I do get headaches but not necessarily orthostatic headaches. I do have tinnitus, vision issues and sensory issues that come and go as well. Thanks for the suggestion. I assume I can reach out to Cleveland Clinic to inquire about this? I’ve had numerous MRIs but nobody has mentioned any leak.
  11. Thanks for responding! I'm glad to know you have recovered some. I had a very stressful pregnancy and horrible delivery. I had to be put on oxygen and was throwing up non stop for hours after he was born. I haven't felt right since. I felt better laying around so I kept just laying around for years. I don't expect to ever be normal again, but I would like to get a to a point where I am not afraid to leave my house due to horrible symptoms. I have pretty bad gastritis as well which I forgot to mention and I have been reading lately about anti-inflammatory and low histamine diets. I
  12. I have been sick for years and have the POTS diagnosis but that's all. I have many symptoms that I don't believe are technically related to POTS and I have been searching for my cause for years. I'm at the point now where I don't know what to do next. I seem to be getting worse and spend my days just laying around. Everything is a struggle. My PCP has literally thrown her hands up and told me there is nothing she can do for me. She won't refer me to any specialists and I cannot self refer due to having an HMO. I do plan to switch to a PPO at the end of this year so I can see the special
  13. That’s what I’m trying to find out. The neurologist said no, but I know better than to trust doctors 😒. I too have gait and balance issues in addition to OI. Who knows... I also have sensation issues with the right side of my body that appear to be positional so I’m assuming that is definitely caused by neck/back issues. My 82 year old grandma has the same issues and is getting surgery next month. She gets dizzy on standing and has horrible tingling in her right hand.
  14. Hi. I have no advice but I can empathize. I have to move constantly. Unfortunately since I can't be upright for more than a minute or 2 this means I have to rock in my chair or move my legs. I'm also not on meds (was prescribed a beta-blocker and then told not to take it by the nurse because of my low resting pulse). I don't find that water or salt helps me in any way. With covid I think I have become even more deconditioned than before as I don't leave the house or force myself to do anything and it's really affecting me, but then starting to move and be up more seems harder and h
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