Racer

I have yet to get a dx, but the positive tilt table has made me depressed, since it is forcing me to come to the realization that I have problems that I cant simply ignore anymore. Finding this forum and seeing that people experience the same things, has really helped with that! I have been threw this many times in the past. I first learned that I had disabilities and that I was different, at the age of 6, when I was placed in special education class in school. Growing up, being surrounded by kids with various forms of disabilities, it seemed that every kids goal was to appear as normal as possible. Trying to appear normal and trying to fit in, meant no acceptance whatsoever. When I graduated high school and entered the real world, it was sink or swim! I had to accept my disabilities and realize my limitations, real quick, inorder to find a manageable job that I could actaully excell at. Being forced to accept that I have disabilities, and being fired from multiple jobs made me really depressed. It took a couple years to fully get over the depression. I have went threw ten jobs in ten years and now have a job that I really enjoy. Over that time I generally ignored new symptoms and the progression of symptoms. Now I am going threw acceptance all over again. I find something I really enjoy doing, and go at it 100%. For me, over the past few years, wildlife photography has been very theraputic, and nature has a way of putting everything into perspective for me. When I am out in nature, everything else is irrelevant. You will find ways to adapt and continue the things you enjoy doing, I am sure of it! I enjoyed traveling even before I got my drivers licence. I took buses, trains, or went with groups to places.

I have had trouble with altitude above 7000 feet, but then again this is the range that most people start to notice the elevation change. I have experienced altitude sickness before at 9000-11,000 feet and had to retreat to a lower elevation. Over the summer, camping at Yellowstone, I couldnt handle camping at 7700 feet as I had trouble simply walking around, so I had to move camp to the Mammoth area.

A prescription of Twizzlers and Red Vines, now that is a treatment I could handle!

I would say this is the norm for people in general who are not very fit! When I am working with someone, I would be scared if they couldnt get there heart rate to soar. You should always be able to get your heart rate to max, just as you get more fit it should take more intensity to get to that point. How do you judge your intensity level? It is a proven fact that judging intensity level on how you feel at any givin time (percieved intensity) is usually false. Percieved intensity and actual intensity based on something like a heart rate monitor will ususally end up being very different. If you want to try to find a direct correlation, I would suggest trying to exercise at different heart rate based intensity level, and comparing that to how you feel after. For instance, you could try to set a taget hr for a workout, like a easy intensity level, stay in that target range, then see how you feel the next day.

I drive and I am a fainter ! I got **** from doctors before for driving, but I only have fainting episodes upon standing, bending over, and standing for long periods. I dont see a reason why I shouldn't drive.

Yes, I have a regular job, but have been attempting to start working from home. I have found that there truely are 'work from bed in your pjs' type jobs! It all depends on how much effort you want to put into it all. First, if the website actually promotes "work from home" and says it is all "easy", then it is probably a scam! Second, you must actually be talented in something, or be willing to become talented, for a stay at home job. I am getting into the whole freelance web design, and I can literally lay in bed with my laptop and complete work. People subcontract and build teams with other freelancers online to complete more complicated works. To be successful in this type of work, one simply needs a good portfolio that proves your capable, and a willingness to go the extra mile to promote yourself and find potential clients. Obvious there is a need to get everything in writing, have solid contracts, and to only deal with reputable companies. Basically any job that uses a computer as the main tool can possibly be a stay at home job. Just off the top of my head, seeing that a possible talent for you is being a RN, if you are also talented in writing, you could possibly write articles for health related websites as a work at home job. If you were to become succesful at that, then you could consider writing in general a talent and expand on it to also include non health related topics.

I dont have pets I wish I could, so instead I enjoy wildlife, and photographing them. Having numerious wild friends that accept my presence on a routine basis, I find profoundly theraputic.

Have you told or talk to your friends, family, everyone, or no one, about your dysautonomia, or about the problems or issues you face, or about your dignoses? If so, what sort of reaction have you recieved? I have talked to a couple good friends about the issues I am having, and they were generally concerned and supportive. I have only told my mom the essentials, since I dont want her to worry about me.

I seem to be out of the norm, in that I was a elite level athlete in peak shape before my symptoms forced me to cut back on exercise. Up until a couple years ago I raced road bicycles and was fit enough to keep up in small pro category races. Things slowly got to the point that I couldnt handle symptoms the day after a hard workout. I was to the point of not being able to get out of bed in the morning before I decided I need to cut back. Cutting back to 3-4 days a week and limiting myself to moderate workouts helped even things out. So, intense exercise made things worse, but being fit probably means that things are not as bad as what they could be! Take this with a grain of salt though, since I am not sure of my dx. It really depends on if you want to exercise your aerobic or anaerobic systems. I would start with your aerobic system, since this is your main endurance system. The anarobic system kicks in for short hard bursts, but then you must rest when you "hit the wall". To effectivly train with target heart rates, one needs to know there personal lactic threshold. The lactic threshold is the point that you reach your aerobic limit, and you body starts building up lactact acid. Once your body builds up to much lactic acid, your body forces you to take a rest. To train your arobic system, you want to train in a target heart rate near (but below) your threshold. Limitations aside, any "canned" workout programs you find, is not a good idea in my opinion, since they do not take into acount your base physical condition. This Dr Levine might be a great guy, but I am highly skeptical of any exercise "proticol", since a program must take into accont more then the syndromes/conditions a person has. Technigue is just as important, since pedaling a bike at 20rpm vs 100rpm might mean the difference between aerobic or anerobic conditioning. Unfortantly, Dr Levine will not be at the gym to monitor your technique, exertion level, or to test you. I would suggest at the least getting a personal trainer, since most will be able to give you the proper testing to properly exercise with heart rate. If you go for a personal trainer, look for one with a degree in a exercise science or equivelent health degree.

Thanks everyone for the replies! Pennsylvania I have tried a few types of compression leg/socks that athletes use for recovery. They really didnt help with symptoms other then soreness from exercise. The last time I was seen by a neurologist I was a little kid! Basically at the age of 6 (when I entered the school system), I was diagnosed with memory problems, speech/language disorder, and learning disabilities. I was then seen again when I developed doubled vision. The records from then are long lost, so I am not even sure of any specific dx from then. I really should see a neurologist, but I need a general physician to refer me, since they wont see me without a referal. My current medical records only go back a couple years, so the problem I had was that my physician was unwilling to refer me to the neuologist because he didnt see any reason why I should even see one. Maybe I am over thinking things, but I think it makes sense for a doctor to consider that I have had issues since early childhood, and that I didnt just develope problems as a adult.

The short story... I was diagnosed with numerious nurological issues as a child, and as a adult I gradually started to develope symptoms of dizzyness, near syncope, constant headaches, etc. I largly ignored warning signs and symptoms all those years, and when I did see a doctor, I was told that it all was nothing to worry about. I am really fit, and was exercising 4+ days a week up until about a year ago when my symptoms took a sharp turn, and I ended up in and out of the hospital for a couple weeks. The hospital had found that I had some serious issues that needed looked at by a cardiologist. So I had went to the cardiologist, and he said everything was fine, just common syncope, that I needed to increase my salt and fluid intake. Fast forward a year, and despite the salt and fluid increase, and continued exercise, my symptoms have gradually got worse! So, the cardiologist recommended that I have a tilt table test done. The tilt table test was by far one of the worst experiences of my life! I fully blacked out, and my systolic bp fell from a baseline of 120 to below 60. My heart rate went from 60 to 130 before it fell with my bp. The nurse/tech who did the test seemed concerned with the results. After the test, I felt extremely sick the rest of the day, and had a bad headache for two days solid. I was sort of shocked by the whole experience, I guess because I was really still in denial that anything was wrong. Coming to the realization about everything has made me really depressed. I am currently waiting for the cardiologist appiontment to discuss the results. While the cardiologist might be able to help with blood pressure/heart side of things, I am not so confident I will be able to get a proper diagnoses, because I have a long complicated history invovling multiple disablities. It seems that no doctor is willing to look threw or consider the 80 pages of medical records or my past medical history! It has been really hard recently, because I feel like I am having trouble with everyday basic functioning, and have had to cut back on exercise and the many activities I enjoy. I guess I am just looking for any advice, or people who can relate, or someone to tell me I am not just crazy