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About badhbt

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    Advanced Member
  • Birthday 02/27/1972

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    Kirkland, Wa

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  1. I have hyperPOTS and have gone into remission. Just to give you some hope! I have had up to 5 years of remission.
  2. I found this interesting post on another forum. I also have had tinnitus in both ears for years. http://www.celiac.com/gluten-free/topic/65895-celiac-disease-and-tinnitus/
  3. Hi Ann, I live in the Seattle area. I had my testing done through UW. I think everyone would react differently to the Tilt on different days, if the symptoms are there then I agree with you. I have had good luck with Dr.Dinah Thyerlei at the Everett Clinic. She use to work for the autonomic Department at UW and is knowledgeable with TTT results and is up to date with treatment recommendations. I know 2 other people that use her for the same thing. I hope "she" isn't the one you are talking about, because that does not sound like her. If it is PM me please. I know how frustrating and tir
  4. Wow, I wonder how many man hours you have in research! That is awesome though....give yourself a pat on the back. I hope this answer gives you relief from your symptoms.
  5. I can relate to your symptoms, even the distorted vision. I don't get headaches or pressure. All of these symptoms were really bad for me in the beginning, but now I have some good days. I hope you have some better days.
  6. I totally understand the floor pattern changes, it can really throw you off. I went to a Neuropthamologist and a regular eye Doctor and my eyes checked out healthy. The neuro Dr. could tell that I was having problems, but did not know why. I then found a eye Doctor who specializes in visual disturbances. She deals with MS patients, autism...etc. I am doing vision therapy once a week which has helped me so far....I think? My vision has improved...not sure if it was the therapy or just time. In the therapy they use 3D images, patching, red and green glasses...different exercises to get
  7. I also have eye issues. I went to 2 different Doctors and I finally found a ophthalmologist who did a 2 hour eye exam. My vision was blurry and almost like living in a bad dream. My symptoms were hard to explain. I had a lot of movement in patterns, and I was having a lot of ghosting. After the test she told me that my eyes had slight problems teaming or working together, which causes double vision or ghosting and other symptoms. Also she thought the communication from my eyes to my brain is effected....which she thinks is caused by POTS or a neurological problem. I have just chalked i
  8. I am curious if you have ever had any xrays or MRI's of your spine?
  9. I have POTS and I own a pulse oximeter, mostly to check the heart rate. My pulse ox is never low. I don't know if that helps you or not. I would maybe get a second opinion before major surgery, it really makes the POTS mad. I had a neck fusion hoping it would cure my problem and it made my symptoms worse for awhile. Did they draw any ABG's on you? Are you symptomatic with the pulse ox? I know that those things are not always correct because of poor circulation. I sedate patients and there are some that read in the 80's, but when I move it to their ear they are in the upper 90's.
  10. Hmm that is interesting. You are really young for a DVT/PE. I did have a d-dimer blood test come back elevated, which can mean that you have a clot somewhere. They looked for a PE, but everything was negative. I bet that was really scary. It is so hard to know that you have something else going on with POTS symptoms. SO glad you went to the hospital when you did. The only thing I can think of is maybe you got the blood clot from pooling? I don't know, or maybe there is a underlying clotting issue?
  11. Please read your private message. Hugs.
  12. I totally agree with E Soskis.....you have a lot on your plate. You have my number, please feel free to call. Big HUG.
  13. Posted Yesterday, 09:46 PM I have several visual changes since all this got worse. AT times things do seem dim or dark. They also just seem off? It is hard to describe for sure. Kind of like things are moving too fast or Im looking through a fishbowl...but yet I see fine. My night vision got much worse and in one eye I am blind at night cant see my hand in front of my face in a dim room. With that said, my biggest problems are outside or in artificial lighting, especially fluorescents. I dont know how to describe it other than a visual seizure...?? my eyes feel jumpy and cant focus on anything
  14. I also have dim or dark eyesight that gets worse when my symptoms are worse. It is like someone turned the knob on my internal contrast button. Bright colors in stores stick out like neon signs, also.
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