scared

[hayley]

hey evryone ive just comback from holiday it was great but i had a lot of trouble in the car as there were lots of hills and it seemed to make me so much worse i think it was change in direction. any i just wanted to ask how do people cope with being told it all in your head. before i was diagnosed with pots i got told that so often and saw phychiratrists and i keep thinking back to it and it gets me down. im so weary of doctors now in case they turn round and say its all in my head again.im seeing a specialist in a couple of days so scared hope he can help me coz my beta blockers have stopped working and i wana go back to work havent been for 8 months.sorry about the spelling.

[friday]

That is a hard one. I have been going through that for a year now. Going from doctor to doctor telling me my symptoms are caused by depression or anxiety, and having to disagree with them, and believe in myself. I think one thing you can remember is they seem to tell everyone that. I keep doubting myself too, and thinking, maybe they're right, maybe it's in my head. Then I have to trust in myself and what I feel,and I know in my soul, it's not all in my head. They've told me it's in your head before they found other things that were wrong with me. Anemia, Hypoglycemia, even sinus problems. Just remind yourself they are human beings. Just because they sound like they know what they are talking about doesn't mean they do. They can be wrong also. They can't feel what you feel, they're just hearing words. And they'll keep insisting they are right until they're proven wrong. You've been diagnosed with POTS, you know that's not in your head.

Sue

[hayley]

thanx for replying its helped alot.i new right from the start that there was something wrong but doctors brainwash u so much that u begin to doubt yourself.if u werent crazy when u go into hospital u are when u come out because of all theyve said to u.i suffered depression in the past so they blamed it all on that.but i do have a diagnoses and i cant keep thinking back to the past ive got to move forward now.i got told by a phychiatrist that its the nurses own frustrations being reflected on me.

thanx h

[MightyMouse]

Hayley, I second Friday's words--Doctors are simply humans who've gone to school longer than most of us. It doesn't mean that they are either smarter than you or better at being a detetictive than you--it only means they've learned more about what "could" happen to a human. Despite that knowledge, many doctor's (and other people) are just darned bad at effective listening.

One thing that helps when I run into a doctor like that is to be assertive. I wait until they're done jabbering and then say, politely but firmly, "you are incorrect". Whether they believe me or not, I always feel better afterward--also, I don't continue going to see doctors who maintain the "blame the patient" attititude. I would suggest you don't either...

There ARE good doctors out there, but often you must sift through quite a few before you find one.

Nina

[morgan617]

i have a great therapist who writes letters to any doctors that give me grief telling them that when they get their license to diagnose psychiatric problems they can diagnose me, until then she will tell them what's wrong with me and what it is has nothing to do with making things up or malingering, but being physically ill and being treated poorly by doctors who should know better. find yourself a therapist who is an advocate for you. i've gotten letters of apology from er docs. wow. morgan

[futurehope]

I understand just what you are saying Hayley. When I used to feel at my worst, and nobody was listening or helping, I used to fantasize that my tombstone would read: "I told you I was sick." I figured that as they were looking at my tombstone, they (whoever "they" was) would finally believe me. Of course, I figured I was probably dying and nobody knew it or believed me. I do not think I'm dying anymore and I have a diagnosis but I can certainly empathize. The worst part of it for me was that it became harder and harder for me to continue working and I had nothing to explain why this was so. Almost the minute I got a diagnosis, I soon left my job due to inability to work and filed for social security disability. (That's another story.) I hadn't even adjusted yet in my own mind to what was wrong with me, but I knew I was unable to work. Hang in there. There are better times ahead. Nothing stays the same.

[StaceyYount]

Hi,

Believe me we all understand. I know it is hard. At one of my lowest points when I was on TPN waighed about 88lbs and was just awful they kept telling me I had anorexia nervosa kept asking me if i threw up and I kept saying make it stop hurting to eat and I will believe me. And then a doctor said that I had a conversion disorder since they had not found anything biologically wrong the next day they found the dysmotiltiy. Also had a doctor suggest putting me in the hospital adnnd filming me without my knowledge because he said that I pushed my catherter in farther when it was actually not put in right adn was curled inside my heart. ( There is a name for that but my fog is very thick today and I can't think of it, wait Munchausens!)

I still go through bad times even with family and friends but you have just got to keep telling yourself that you know you are sick and keep faith in you. It is funny my husband and i were just talking about this today and he said that he just read a Rodney Dangerfield joke that would be a good response. He was sitting at a bar one day after a bad show and feeling depressed and someone said to him oh its just all in your head and he said "That is like telling an ugly person it is all in your face" drum roll Not nice and remember it is Dangerfield but funny

Anyway know you are not alone, that we all understnad adn just don't doubt yourself it is the hardest thing to do but don't give them that power. Believe in you and remember us!

Stacey :-)

[hayley]

thanx again for replying uv cheered me up. i was also diagnosed with a converson disorder after i got diagnosed with epilepsy before that and had to be transferred to another hospital who specializes in it and i was in a room for three days attached to a eeg monitor and a camera and microphone on the ceiling.i think that was the worst moment.but they said i didnt have epilepsy after they put me on all the drugs for it which messed me up even more. i just wonder where the care has gone is it all about making money now. evn if it was in my head i dont think i should have been treated that way.if i wasnt ill then y did they keep me in hospital for 6 weeks who knows? oh and morgan u have a really great therapsist i cant believe u got apologys coz they hardly ever admitt when there wrong.

[avais1]

It sounds like we have all had this problem. I, too, was convinced by a doc that it was "all in my head", and was in therapy for 9 months. I was lucky, I got a very good psychologist. I was diagnosed with generalized anxiety disorder (who in America DOESN'T have this ). He and I worked very diligently on controlling panic attacks, etc. We tried hypnotherapy, guided imagery, cognitive therapy, you name it. I will say, that I DID learn a lot, but the attacks kept on coming.

Then on a fateful day, I had a full blown attack in his office, for about 3 hours. He immediately sent me to the clinic side, (he was located in the same building as my doc) and advised that this WAS NOT a panic attack that he had just witnessed. He too, helped me fight docs that wanted to go for the "easy psych answer", as he had been working with me for 9 months, and really couldn't find much mentally wrong with me other than general anxiety.

I talked to Dr. Low at Mayo about this, and he quite surprisingly had a lot of insight to this issue. He stated how POTS can cause anxiety, and how anxiety can exacerbate POTS. The area in the brain for both of these phenomena, are located in the same spot (Locus Coreolus?). It is like trying to walk a double edged sword. He also talked about how medical science in general has tried to separate mind and body, but really, they cannot be separated. They can feed off of each other, and one can get caught in a vicious cycle.

At any rate, sorry for the book. But if you are interested, I have a real book to suggest It is called "Mind Body Deceptions" - the psychosomatics of everyday life. Take a gander, and make your own opnions.

Good Luck!