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I take Meclazine when I get too dizzy. The only problem is it really wipes me out. Midodrine does not stop my dizzy spells either, but it does reduce the amount of blackouts I have in a day and give me more energy with elevated BP and all. Hope you find a good med that works for you.

The first couple of days I tried Midodrine I had headaches. I pushed though, as I was so weak without the meds. I have been taking it now for about a year. I have noticed that if I recline, even semi-recline, for more than a couple minutes the meds will give me a headache. Hope this helps.

Thanks for all of the information everyone. I do not talk about my situation much to family or friends and sometimes I feel like I'm going to explode if I do not vent my fears or relate my symptoms to someone that understands. I do feel more relaxed since I have posted my concerns. It feels good to tell the whole truth regarding my symptoms and situations to someone, as I usually reply to a "how are you feeling" question, with a benign, non-commital "pretty good" and then proceed to change the subject. This illness showed me who my true friends were. Those that stood by my side and those that became less engaged and drifted away. I suppose I am thankful that the illness revealed shallow friendships. But at the same time I question if I would turn away or cease to deal with an unhealthy friend. I am not trying to justify such actions but I do think human nature causes people to disassociate with those weaker themselves. Fear of the unknown is a very strong emotion and an unhealthy state is not often something people want to come to understand. The hardest part about having a dysautonomia is not the symptoms. It is in every moment my Mom has to pick up my child because I am too dizzy or weak to hold him. Each time my husband must do the dishes because I am too weak to stand. I am beyond indebted to everyone I know. And yes I am appreciative of the fact that they assist me. Yet at the same time I carry around a deep sense of guilt because I know nothing I could ever do would be able to repay their kindness. I am sorry this post is not upbeat, but it is honest and from the gut. These are feelings I think many experience but do not share. But in a weird way it is a relief to express them.

Hello Poohbear, I was diagnosed with NCS at the Mayo clinic in Scottsdale after extensive autonomic testing. At that time they were trying to decide whether I had NCS or PAF. The doctor who diagnosed me at Mayo referred me to a local cardiologist who I have been seeing. As such this cardiologist now says he feels, according to recent test results, that I have PAF. It just seems like the medical literature on PAF is very contradictory, with some sources claiming PAF can affect life expectancy and others claiming it cannnot.

I went in for a follow up with my autonomic doc the other day and left with a possible diagnosis of Pure Autonomic Failure. I was shocked when he mentioned it. I explained that I had new symptoms regarding my bladder. Namely incontinence, having to strain to pass any urine and just plain not being able to go to the bathroom even though I could feel that I had a full bladder. I also informed him that I wake at least 4 to 5 times a night to go to the bathroom. In short the doc said he felt I have a neurogenic bladder. As such given the host of other symptoms I have he felt I was now a candidate for PAF. I am only 28. I am not ready for this. He said he will put me on Zoloft soon and at this point I am welcoming the idea of an anti-depressant. Researching on the internet I found the medical prognosis associated with PAF and it is not very pretty. The most alarming aspect is that it can acutally reduce your lifespan. One article stated many only live 20 years following a PAF diagnosis. I have written all of this to ask other members about their knowledge of PAF. I want to gain a real understanding of what I should be expecting with PAF and whether it can indeed shorten one's lifespan. I guess I just want to know the truth about what I am facing.

I was recently diagnosed with NCS in November of 2005 at the Mayo Clinic in Arizona. I often have blackouts, as many as ten or more a day during a bad week. Yet, sometimes during these "bad" weeks my arms and legs become extremely weak, especially my legs, to the point to were it becomes very difficult to walk. The weakness usually lasts about a week or so and then I slowly regain my strength. My question is do any of you experience this and if so is there any way to speed your recovery, or external factors I should be avoiding that sets this chain of events, or what I refer to now as a crash in motion? It seems as though a couple days before my legs turn to jello I begin to lose my balance and walk like I am drunk. I have tried to use a cane during these times but it seems like all the cane does is trip me up even further while not providing me with enough support to walk. I have recently thought about using a wheelchair but find they are insanely expensive and I have no idea what would be the best type to use. Thanks ahead of time for any advice you may have.