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KareBear

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About KareBear

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    Texas

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  1. Next CA-125 this week! Finger's crossed it goes down :)

  2. Welcome to the forum, Trappedat20! It sounds like you are just beginning this journey with dysautonomia and seeing a POTS specialist will help provide more answers. You symptoms sound very much like mine except my bp never goes high. There are lots of people on this forum that do get higher bp's though. Have your docs tried any meds yet? There are many meds and other things that can help stabilize some symptoms. One thought is that some of your bp readings could be off a little if you take back to back bp measurements. A couple back to back is ok but if they are too close together and you tak
  3. I have the same thoughts about using hormones! I always thought, "why would I do that unless absolutely necessary?" I'm actually glad I never used them. I even had years of painful ovarian cysts that docs said being on BCP's would possibly help but I chose to let my body take care of them naturally. They eventually stopped. I can see why some people need to get on hormones but If I had to I would only use them for a short period and then see if things were better. Sure seems like they could affect lots of things. Maybe with the seasonale you could stop for 7 days at the end of each month firs
  4. Maybe you can send them a PM on their profile and get a hold of them.
  5. My doctor had told me that my cardiomyopathy comes from the constant tachycardia that has been untreated for my whole life. The tachycardia is from POTS so that to me is related. He said that the constant over working of your heart for so long can wear it out causing the cardiomyopathy.
  6. This reminds me of when I got officially diagnosed with POTS. My first visit with my EP Cardio was very detailed and asked many symptom questions. He kept asking me if I felt sleepy or tired......over and over. I dont understand the difference between the two! Honestly. Maybe he forgets being deaf leaves many holes when it comes to describing things but still to this day I dont understand the difference. Maybe it's like that with dizziness and brain fog for you? Just a thought.
  7. I also always considered "brain fog" the inability for me to think straight or my forgetfulness, cant find the right words, forget what I am doing or going, etc. that is totally unlike me because my brain is normally overactive and always had a photographic memory. For me, I feel dizziness is when I feel the room spin, I feel off balance, feel like I am moving when I'm not.....those type of things. Of course dizziness caused by lack of blood and/or oxygen to the brain can make me have both at the same time and maybe this is what you are having so it can be confusing. I have only noticed itchi
  8. When you are standing and see your leg veins looking like that and/or also your legs may turn red or purple for some. That usually is from blood pooling. Yep! Especially if you never noticed this before having POTS symptoms. Before my symptoms got bad My legs never used to change colors but now when I stand my lower legs turn red, feel heavy, and many times start to swell around the feet and ankles. Also the veins appear very prominent like you mentioned.
  9. Have you tried the abdominal binder yet? I still plan on trying one soon as well. I know having O2 at home has helped me a lot but doesn't seem to be used by many others on here. My insurance never even questioned it when my doc prescribed it years ago so there was no problem getting it. Anything non-pharmaceutical that helps is always worth a shot
  10. Aww thanks guys and gals . You made my night!
  11. Ascites is my new companion, great!

  12. I saw Dr. Fealy at Mayo MN in 2008. I had already been diagnosed locally with POTS, OH, etc but my parents wanted another opinion and I had already tried the typical POTS meds with no improvement of symptoms so they hoped Mayo could help more. I have to say the clinic is extremely efficient, employees and staff are wonderful, everyone is super helpful there. I was truly impressed. The testing and appointments were on time and I got immediate info and results for the most part. It is an exhausting few days and took everything I could to even be wheeled in a wheelchair to my appointments. They p
  13. I'm so sorry to hear about your day today! Gentle ((((hugs)))) coming your way. I can relate to days like you're having and it's pure misery. Maybe when the hubby comes home you can ignore the housework, order pizza, and have him give you a relaxing massage Housework will always be there tomorrow or even next week, if it's not urgent it I skip it when it's a rough day. If anyone has a problem with my messy room or house then they are welcome to clean it Hang in there! I hope tomorrow is much better.
  14. I do understand your frustration and honestly dont know how to get them to recognize dysautonomias or POTS as disabling conditions. Like Katybug said, you have to play the game to get disability pay. We know why we are disabled. I also had to see a psychologist appointed by SS before my hearing and thought it was total ** too. I went because I had too and because it seemed standard for others going thru the process even though I knew I wasn't depressed. I was awarded SSDI and never really told what diagnosis was accepted, I assumed they accepted the POTS diagnosis but later found out they lis
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