My mom is typing this for me because I have POTS and I am in bed half the day dizzy, nauseous and very tired. I also have trouble communicating because of my PDD-NOS, ADHD, Expressive/Receptive language disorders, dyslexia, anxiety, and more.
I would like to figure out how to get to the Mayo Clinic in Rochester so that my insurance would cover. My doctor in Wisconsin referred me there for my POTS and they turned me down. I’ve been to Madison as a second choice.
I really want this POTS to get better so that I can work and get out and do things.
I applied for disability once I turned 18 and am in the appeal process again. I’ve been on disability since I was 12 because of my other issues besides POTs.
I’ve always been dizzy and nauseous when I get up each day and my mom thought I didn’t want to go to school. We found out in 2007 that I had POTS all of my life and my head injuries caused post concussive syndrome, which made my POTS worse. I’ve been suffering ever since.
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My 14 year old daughter has some symptoms of POTS. She has been treated at Mayo recently. She also suffers from daily headaches. We got her appointment though our pedeatrition. I don’t know if Mayo turned you down or your insurance co? You could try another referral or you could try the ER at St. Mary’s or Methodist Hospital in Rochester and hope to get admitted.
E’s Dad, just out of curiosity, were you satisfied with outcome of your daughter’s visit to Mayo? We will be taking our son there in March for dizziness, blurred vision, and rapid heart rate issues.
Just wanted to say thats where I got diagnosed with POTS and I thought the visit was great, they checked everything and set it up well so we didn’t have to spend to many days there. I can even just e-mail my doctor now with questions that come up due to POTS.
I was diagnosed with POTS at the age of 40. It was a rough ride at first, but medication gave me my life back for the most part. I was doing better and was taken off 2 of the 3 meds for almost 2 years. In February 2012 the dizziness returned and are much more frequent. I was put back on the meds and I’m trying to get back my quality of life I’m used to. I want to go to the Mayo Clinic in jacksonville, but not sure of what they can do for me. Has anyone visited the Jacksonville location and what advise can you give me on getting stablized.
Was she treated by a neurologist or electrophysiologist?
Going to Mayo and getting the tilt table test was the best thing we did. at least now I am not hearing “it is all in his head”. we still struggle with POTS and the sadness of the disease.
what is the tilt table test?
I try to stay as active as possible with POTS. However, if you are like me unable to move due to surgery or previous injury, then compression stocking can be helpful or just exercising in bed. Also, I have to fight tooth and nail to get doctors to buy into my symptoms, so it is important to write them down and give examples when at the appointment. Doctors have been lied to many times by a small majority of patients looking for pills or just looking for disability, so they tend to only believe strong arguments. Hope this helps.
Hello All who Deal with POTS
I just received an email indicating that this is POTS Awareness Week and an article was published saying how many POTS patients deal with the difficulty symptoms related to this disorder. I thought you might find it interesting and perhaps even helpful. Just click on this link, https://themighty.com/2018/09/things-people-do-because-pots/