Why Do People Still Think It's All In My Head!

i've been suffering from many of the symptoms for years, frequent trips to the doctors, lots of tests which nearly always come back normal. I've been seeing a cardiologist for 2 years, discharged twice and then finally admited to hospital and finally after 3 admissions i was diagnosed with pots. It was a relief at first, i'm not crazy after all!!! but lots of people now think i need to take a tablet and get on with it. I'm tired of trying to explain it and even though my GP has admitted not knowing alot about it, many friends are suggesting ways to get on my feet. I am in a wheelchair because i faint each time i get up and yet they pass comments like could anxiety be making it worse, a nurse relative suggested telling myself to get on with it, do i sound angry? because i am!! I don't want pity just an understanding that sitting in a wheelchair and shuffling around the house on my bottom is the last thing i want to be doing especially as it's summer out there
richard12 richard12
7 Responses Jul 16, 2010

richard and angela,<br />
have you richard and your son angela had an MRI of the lower brainstem to rule out arnold chiari malformation. My pots was very severe and I would pass out without warning. I had numerous tests and had been misdiagnosed for many years. Finally I started to loose my voice when I tilted my head and then would passout. When they did the MRI my vocal cords they found that the cerebellum tonsils had started to elongate through the spinal column and were pushing on the brainstem when I stood up causing all of the symptoms of POTS. I had surgery to correct this congential defect and the POTs symptoms almost completely subsided. They have since returned but I was told there was nothing else surgically they could do. But for about ten years I was symptom free. Worth pursuing. Hope this information helps. God Bless, Kimberly

Richard, My 13 year old son has just been diagnosed and is also fainting whenever he stands up so I'm going to buy him a wheelchair tomorrow so we can at least get to the pool like the doctors want us to. You post is the only one that has mentioned fainting as much as Toby does and I wonder if it has to do with you both being male or maybe that the women out there aren't bringing it up. How long have you been fainting so often? Do you have a handicapped placard for your car? Our doctor has told us NOT to get a wheelchair, that they want him up and walking but that is more easily said than done obviously. Are your doctors o.k. with you using a chair? What a mess. I know that your post is a bit old but are you better lately? Angela

I know exactly what you mean. I've had the symptoms for years and had no idea what was wrong with me. I was also relieved when I was diagnosed with POTS because it meant that there was a cause for all of my discomfort. I try to talk about it with my friends and family, but they really don't understand and they seem to think that I'm making a big deal out of nothing and that I should just get over it. I know I annoy them, but I feel like I'm trying to prove to them and myself that it's not in my head, because sometimes I start to think like that too and it gets very frustrating. Especially since symptoms come and go so much, and sometimes I'm fine, they find it hard to believe there's something wrong with me under the surface. I would love to be able to talk to someone who knows exactly what I'm going through and who could help convince me that I'm not making a big deal out of something little. No one else seems to realize how life-altering this condition is.

I am with you on the frustration..I want to bottle this POTS up and give a 1 day dose to those who tell me.."it's all in your head, just get out and do something" or "If you have a positive attitude the POTS will go away" or "here take some more (crazy-pills) and come back and see me in 6 weeks"...LOL

thanks for the support you really have to experience this to be able to understand it. I'm in the north of England and i'm currently trying to find a doctor with some understanding of this horrible thing

I'm so sorry to hear how your feeling and how your being treated. I think all us POTS patients can definitely relate to that. I was diagnosed a year ago after 13 doctors and many years of trying to figure out what the hell was wrong with me. I got lucky and found a great doctor who specializes in POTS and was able to help me out and make me less symptomatic. People do tend to think that once you have a diagnosis, you pop some pills and your symptom free..........i wish. I gave up on explaining anything to anyone anymore. Not worth it. My doctors name is Blair Grubb at the University of Toledo. I dont know if youve seen a specialist, or if Toledo is to far for you, but you can go to "dinet.org" or "ndrf.org" and they give you a list of doctors, worldwide. Good luck to you and stay strong!!!!!

Hi I just read your post and I am wondering how you are doing? I live in ohio and am going to Cleveland clinic for testing. I have never fainted from this buti will be standing there and all of the sudden I get really weak and start shaking and have to go lay down or I feel like I am going to collapse I have been in Bed for almost 3 weeks.

I'm so sorry to hear about the way you are being treated. I can't imagine being in a wheelchair. It's hard for our families and friends to see us like this, that often I feel they don't know how to handle it and thus make comments without thinking about how we might feel.