I am sorry you have been experiencing all these symptoms with no diagnosis. I to have been in the same predicament but now I have a 'suspected' diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS).
Read some of the posts on the Dysautonomia (autonomic dysfunction) forum. See if any of them sound familiar. Try posting your post there too.
I hope you find some help on here.
Have you had any tests done on your heart?
I have had numerous tests done on my heart and of course they all come back normal.
Have you had a Tilt Table Test?
No I havent. I just saw a new cardiologist yesterday and he is now in the process of beginning the battery of tests on me that suit his fancy, so I guess well go from there. I only really told him about my heart issues not the rest, but when I go back to see him, I a m going to take this symptom list with me and see if maybe some of my heart rhythm issues are now related to my neuro issues.
I had many many tests done for all kinds of conditions, I had many tests done to check my heart, they all come back normal. It was only when a Tilt table test was done that they discovered the autonomic functions of my heart and bp did not respond appropriately. POTS is diagnosed by an increase of heartrate by 30 bpm or to 120bpm, when going from a laying position to a standing position. This condition can give you many symptoms, that differ on a daily basis, and can stay continously or come and go in episodes. Symptoms can include many you have mentioned above and are caused by dysfunction of the autonomic nervous system. Symptoms can also be relieved by laying down as you have mentioned yours do.
It would be worth looking into this if all the tests you have had done are normal.
There are also other conditions that can cause similar symptoms. Have you had any hormone tests done?
I am new to this so there may be others on here who can give you more specific information than I can, but it's something you can look at, if only to rule it out.
I just want to start off by saying thank you very much for your support and your advice.
I have come to find out with these Dr. visits, that everyone wants to treat me as if I am a hypocondriac, which I am not. I dont know how to go about, anymore, asking for these specific tests. I feel as though I am making the Dr.'s angry which is going to make them hesitant to listen to me and my concerns. I also feel that I nees to be my own Dr. and investigate on my own because I cant get them to do it or I am hesitant to ask for help for fear of the way they will treat me as a person.
To answer your question, I have not had any hormone tests done. As I sort of mentioned before, I have just started going to a new cardiologist, one that specializes in heart rhythm, however I didnt mention all of my symptoms to him due to the fact I never thought that the neuro symptoms and cardiac symptoms could be related. I have had heart paloitations since I was twelve and just started with the neurological symptoms recently so I never associated the two. So I think that I will take my list in when I see him nxt month.
I just wish I knew how to get ahold of one of these docs that will do all of the testing without being prodded to do so. I want one who will take the initiative to help me out for the sake of helping me out.
I really feel for you and I totally understand how you feel. I have seen various doctors that do not like the fact that I am trying to figure this out, with or without them. I live in the UK and there are very very few doctors here who have any knowledge (esp. through experience) of POTS. I have not been given any information or advice regarding this condition and have had to read about it on the internet to gain any insight. I have found these boards very informative, helpful and comforting.
You have to be your own advocate, the symptoms you are experiencing are real and can be diagnosed.
Copy your post and put it in the Dysautonomia (autonomic dysfunction) forum, there are many great people there who will give you their advice and opinion, they will also help you with regards to doctors and tests you should ask for. You should definately have a full hormone panel done.
You could also try and monitor your own heart rate and bp - to give yourself an idea of what it's doing.
Try taking your pulse after laying down for about 15mins. Then stand upright and take it again several times over the next 15 mins or so - see if there is a large increase. If it does increase over 30bpm or to 120 bpm then it may indicate POTS. There are also several conditions that have similar symptoms, including adrenal issues
Keep a diary of your symptoms on a day to day basis, and take this with you when you do see a doctor. Maybe noting if there are any triggers or things that make you feel better, etc.
Remember, you are not a hypochondriac and you will get to the bottom of this x
I have had some of those things brain float stuff,I got vertigo bppv 10 years ago but learn to live with it BUT recently i had a bad sinus infection witched turned into laberythisis not sure on spelling.
anyhow I woke after two hours of sleep and the room started spinning and i threw up, I ended up in the hospital . when the inner ear nerves get infected alot of things can happen. they say my stuff will clear up iin a few weeks but ,its easy for the mind or brain to race or panic,since my vertigo from ten years ago i have always felt like i am walking in the sand at the beach or like your ears are to pistons and they are not firing right,and remember the eyes and ears and balance stuff are all tied together,,
by the way I got a cat scan and mri and it ruled out stroke or tumors maybe look into that!