James

Thanks for all the warm welcomes and info, I have been finding out more and more about this over the last 24 hours and was sure that one thing couldn't be responsible for all the symptoms I had, but it seems it can be. The only thing I haven't been able to answer, and I guess I can't until I go back to the docs is exactly what I've been diagnosed with. I know I have POTS, but from what I was told this is not because of autonomic failure and therefore I don't think I have the underlying Dysautonomia or can you have Dysautonomia without an autonomic problem. I have contacted a few Osteogenesis Imperfecta organisations around the world to see if they know of other OI people with POTS, if there are others they will hopefully have more information on POTS due to collagen deficiencies and I will post any useful info I find here. Do any POTS people have exacerbated symptoms when they are hungry? as this is often when I feel my worst and I haven't found anything on these forums to support this. I have had Diabetes, thyroid problems, hypoglycemia and all the usual stuff ruled out. Thanks again for all your help, I am much more knowledgeable now and hope to learn as much as possible to live with this.

Sorry, I wasn't very clear in my first post, I've already had the TTT done through PPP (was just over a month wait) and have been diagnosed with POTS. It is my ongoing care under Prof. Mathias they are refusing to fully pay for. I was using the TTT wait time under the NHS as an example of why I'd rather continue my treatment privately. If I was working I wouldn't mind so much, but I have been off work for about 8 months now and have been on half pay for the past 2 months, which makes things a bit tight. It just seems like I'm making some progress with my condition and then another hurdle gets put in the way.

I have a private health scheme through work which I have used a lot over the past couple of years and have just been diagnosed with POTS, PPP have been really good and paid for everything up until now. I have seen maybe 15 doctors, had numerous tests and a few hospital stays. I have been under the care of Prof. Mathias at both St. Mary's and The National. I received a letter from PPP today stating they have paid for my most recent hospital stay and tests, but they will not carry on paying Prof. Mathias's fees as they feel they are excessive. I have just spoken to them on the phone to clarify the situation and they have offered to pay the first ?110 of any consultation and I would have to make up the short-fall. So far when I have seen him, his fees have been ?325 and ?255 respectively, but this means I will have to find up to ?215 for each visit from now on. Just to put this in perspective, they have happily paid ?262 each time (about 7 or 8 visits) I see my local ENT doctor, yet they are refusing to pay ?255 for me to see one of the top neurosurgeons in the country. I have no problems with the NHS, but for example their waiting list for a Tilt Table Test was 10-12 months and I just couldn't wait that long. I fully intend to fight their decision and am aware of their complaints procedure, but does anyone have any tips on getting them to pay?

Firstly I apologise for the length of this, but it feels good to get it off my chest, secondly my knowledge of POTS is rather limited (a few hours research) and thirdly it is 4 am and I am so tired I can’t get to sleep. I have just been diagnosed with POTS after 4-5 years of symptoms. I left the doctor's quite relieved that I finally had a diagnosis, after numerous doctors told me there was nothing wrong with me and I was just mad, I was even given referrals to see a psychiatrist. I decided to do some research into POTS and came across this site, however it seems to have provided me with more questions than answers and I want to go back to the doctor armed with information. I guess the best thing to do is to write a brief background of my problems and symptoms and then put my questions at the end. I am 23 and I suffer from Osteogenesis Imperfecta (Brittle Bones), which was diagnosed at birth. My symptoms relating to POTS started 4 or 5 years ago. I would get dizzy spells when standing, these started being very short, only a matter of a few seconds, they got more frequent and prolonged over the next few years. From here on it's hard to remember the sequence of when symptoms started, so I may get things in the wrong order. I got a continual feeling of light-headedness that got worse over time and it was different from the dizzy spells as it didn't have any effect on my balance, this would often make me feel quite spaced out and I felt like I had lost my memory and had to remind myself of everything. It continues to this day and on a good day I don't really notice it, but it is always there. There are times of the day when I feel really awful yet can’t put my finger on why I feel awful or what my symptoms are. This is the hardest thing to explain in the world as even I’m not sure what I feel like, these episodes can last a few hours or a few days. I developed chest pains, often in the evening or at night, this could be accompanied by a twitching chest (I'm not sure whether it's my heart as I've never been monitored when it happens). It doesn't make me feel any worse. I often get a thumping heart where I can hear and feel my pulse (and if I stare at something light my vision pulsates). It sometimes feels as if I get palpitations and an irregular and raised heart rate, again this has not been monitored. I get a bad headache maybe every couple of weeks and display migraine symptoms such as odd things with my vision much more frequently. This is mainly what mislead the doctors as they concluded I had vestibular migraine, however the treatments they suggested were completely ineffective. Incidentally when I have a headache (lasts about half a day) I display almost no other symptoms, other than the constant light-headedness. I get attacks, often during exercise where I feel so bad I just have to sit down/lie down on the floor, I feel like I am about to pass out any second, but never actually have. Strangely when I was being treated for migraines with propanolol and sanomigraine these attacks became less severe and less frequent. While exercise generally makes me feel bad, the next day I will often feel quite good. I go and watch my football (soccer) team every couple of weeks and there is 196 steps to my seat (I’ve had plenty of time to count them, it can sometimes take me 45 minutes to get to my seat). I know the ambulance men there quite well now and they can’t understand why I put myself through the ordeal for every match. I feel much worse when I a hungry, when the symptoms were worsening a couple of years ago I put on 2 stone (28 pounds) in 3 months as eating alleviated symptoms. Often I will feel bad for an hour or so after eating, but then I am alright until I get hungry again. I have lost his and a bit more now, although I am still slightly overweight. I developed the odd bout of diarrhoea, it maybe occurs every few months, but I’ve never felt like I had an upset stomach or had nausea. I have a real problem with loud low sounds, it makes me feel very uncomfortable, but I can’t quite describe the feeling. The underground car park at work is my worst nightmare it echoes car engines and I can’t avoid it. I am gradually getting more and more deaf in my right ear, it often crackles when I hear a high pitched sound. My sleeping patterns have become very irregular. My normal sleeping now is maybe 3-4 hours in the evening then I won’t be able to sleep till at least 4am and I will wake up any time between 10am and 3pm. I can sleep anywhere from 2-16 hours a day. I used to do a lot of driving, but I hardly drive at all now, and only ever when there is someone in the car to take over. I get a weird sensation when stopping that I am still moving forward, but only when driving, it never happens when I’m a passenger. The latest symptom is that I feel really terrible when I take a shower, I can only bear 1-2 minutes at the most and it makes me feel awful for a couple of hours after. At least I’m saving water. These are all the main symptoms (I think), there are lots of other things that happen, but have only happened a few times or aren’t that bad. I managed to right 13 A4 (letter) pages of symptoms for the doctors. The doctor has diagnosed me with POTS, but he doesn’t think there is anything wrong with my autonomic nervous system, he feels the problems are to do with my poor levels of collagen due to my Osteogenesis Imperfecta. However, the few days I went in for the tests were probably the best few days I’d had in a long while. I managed to exercise without too many symptoms and didn’t feel too bad on the tilt table. Is the diagnosis plausible? Could it just be as I was having a good day the problems with my autonomic nervous system didn’t show? If it isn’t anything to do with my Autonomic Nervous System does this mean I don’t have dysautonomia? I have been told to try and control the symptoms through a high salt diet and exercise, which I have no problems trying, but are there any good tips of things I should try? What is the likelihood of it working? It seems to me that most people here have other things along with POTS, is there anything worth looking at from the symptoms I have described? I’m not a hypochondriac, I just want to know the possibilities so I can go through anything with the doctor. Does anyone have any information on this being linked to a collagen deficiency? What are the long term prospects of POTS? Does it get better/worse through life? Does doing things, like me going to football matches where I'm constantly feeling terrible and having to sit or lie down actually do you any harm? I know it's bad at the time, but am I making things worse for myslef in the future? I’ve probably got a load more questions that I can’t think of now, but I appreciate any help or info you can provide. I’m sorry for the length of this post, but I’m not sure how to condense it much more.