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IDreamInColor

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Posts posted by IDreamInColor

  1. I know it's an odd question. But now that I have a diagnosis I can look back now and see that I've had this my whole life. It started when I was a teenager back in 1983 (I'm 45 now), my mom took me to the doctor because I was so tired and weak all the time. They put me in the hospital and discovered I had a protein overflow, they diagnosed me with glomerulonephritis. I spent my whole life feeling tired and weak, and lightheaded, I bounced from doctor to doctor looking for answers over the years, and the only thing they ever found was low blood pressure, they would tell me to eat more salt and send me on my way.

    And now all these years later, here I am at my very worst, I just spent 5 days in the hospital this past September with many many symptoms, and guess what?...protein in my urine again. I just can't help but think it is being caused by the dysautonomia. Does anyone know if protein in the urine can be caused by this dystautonomia?

  2. My doctor told me I need to exercise, but aside from feeling extremely weak these days I'm worried about my pulse. When I do something as simple as climbing my stairs at home my pulse races to 140. I can't imagine what exercise will do to it, I'm afraid. Has your doctor also told you to exercise?...are you afraid? Do I have reason to be afraid or am I being a worry wort?

  3. I know exactly what you mean, my right ear feels cloggy all the time, I've been to an ENT and they never see a problem. It just feels like it needs to pop and can't. I also hear tiny bubbles popping in my right ear. And in the last couple days my hearing almost sounds muffled.

  4. All of a sudden I get this weird feeling overcome me, like an "oh gosh what's happening feeling"...and then directly after that my legs start jerking, I don't mean tremors, I mean a hard jerk, they jerk about 10 times and then stops, although one time the jerking lasted 2 hours.

    This used to only happen while I was in a lying down position, but now it's happening more often, and also while I'm in a sitting position.

    I have no idea if it is connected to the dysautonomia, or if it's something else.

  5. I have been very scared with this dysautonomia, and I think I would be less scared if I understood the mechanism behind the symptoms I'm having. My blood pressure has been running 120/85 and heart rate in the 60's for the past few days. And even though it is near the normal range I am still having symptoms

    Can someone tell me what causes the nausea, the strange feeling in my head like I'm on the verge of vertigo all the time, and why my legs are jerking uncontrollably, and why I am having an uncomfortable feeling in my chest?

    I don't understand this disease at all, and I'm trying to desperately.

  6. Hello everyone in the potsie world, my name is Lori, I am 45 yrs old, married 27 years with 3 adult kids. I was just diagnosed with dystautonomia last month, but I suspect I've had this affliction for a very long time. I spent the entire summer slowly declining and getting sicker and sicker, long story short I ended up in the ER with a 5 day stay in the hospital. I was released from the hosp Sept 13 but I'm still not doing very well. While at the hospital the doc started me on paxil 10 mg daily, and florinef. I just had a follow up appt last thursday and my blood pressure was too high 160/100, so he decided to take me off the florinef and start me on proamatine. I stopped taking the florinef last thursday, but have not begun the proamatine yet.

    Here is my question...my blood pressure is still a bit high even after being off the florinef since thursday. I googled proamatine and I see that it is used to raise the blood pressure. So now I'm afraid to take the proamatine for fear of raising my blood pressure even more.

    My blood pressure was running very low like 70's over 40's during the summer, and while I was in the hospital, but since then it has been running high. I am so confused on what to do about this medication. I mean, why would my doctor prescribe it 5 minutes after taking my blood pressure that was 160/100?

    Currently my main symptoms are constant strange feeling in my head, like I'm one false move away from vertigo all the time, also nausea, and my legs jerking uncontrollably, and tremors in my arms and upper body. Also experiencing flushing up my back and neck and into my head. I'm having many many more symptoms, but those are the most bothersome right now.

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