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GregSims

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Posts posted by GregSims

  1. Greg- You would see the same type of specialist in autonomic dysfunction whether you had POTS or NCS or both or.....

    I agree with Kimbellgirl that you should follow up on that sleep study info. Did the doc not give you any help with that?

    The Doctor at the sleep clinic never met with me. He had an assistant take all my information and set up the study. He was to meet with me to discuss the results, but had to be out of town. So, his assistant met with me and passed along the instructions. The Dr. wanted me to lose weight (50 lbs). He also wanted me to get on a good sleep medication and try relaxation techniques... clear your mind etc. Apparently during my 3 minutes of deep sleep, I quit breathing 3 times. He said that may be related to my weight. I am 6'3", 250 lbs. However, I have a fairly large frame. I never considered myself "overweight". But, I guess it never hurts to lose a few.

    Obviously, I am not pleased with the help I am getting locally. During that sleep study, I took 20mgs of Ambien, 2 MG of Klonapin, 2 benedryl and 8 mgs of tizanadine just to force me to sleep. The assistant wrote down what I took, as it was their recommendation. - The Dr. then told me to get on a good med?!! I just wanted out of there. I am not sure the Dr. ever really looked at my file. His personal fee was over $2500 and he never even met with me.

    I'm going to bang my head against the wall now after thinking about this again.

  2. Thanks for the replies and suggestions. Over the years trying to figure out what was happening, I made several trips to the endocrinologist. I have had several thyroid test. The first result came back and the doctor said I was borderline, but it could have been due to stress... I am not sure what "borderline" meant, but my second and third test came out fine.

    I will try the PTTT test over the next few days and see what happens. When I did the TTT, I didn't think it would affect me. I was OK for the first few minutes, then they sprayed something under my tongue. Within 2 minutes, my heart beat went from 60 beats per minute to 160, then down to 40 in just a few seconds as the attendent laid the bed down flat. He said that just a few more seconds and I would have crashed. I remembered everything going dark as I tried not to vomit. Then, everything started coming back to me as I was soaking wet with sweat. I felt like someone stomped on my chest and was in bed for a few days.

    I guess I need figure out if I meet the definition of POTS before I seek out one o these Doctors that you guys suggested? Or, would these Doctors be the same specialists I should try to see even if I don't meet the POTS criteria? Are there different doctors for NCS?

    Greg

  3. Greg,

    I'm sorry that you are not feeling well. How long ago was your TTT done? Are you still seeing that doctor? Have you sought out a doctor that specializes in autonomic dysfunction?

    Katybug,

    I have good days and bad days. I have learned to limit myself and manage it to some extent. That being said, today is a relatively good day.

    The TTT text was about 18 months ago. The Dr. just told me that I had NCS, and it wasn't curable. When I first looked it up online, I found out what was technically going on causing my events, but didn't understand that it was an "autonomic dysfunction". It wasn't until the last few months that my wife and I started started digging for more info and that is where I found this site. I had never heard the term "autonomic dysfunction" or dysautonomia... or POTS. My cardiologist was reccomended to me as the best Dr. in East Texas for my issues.

    Obviously, I need to find a Dr. more familiar with my issues. Do any of you have any suggestions for a Dr. that could help?

    Greg

  4. I guess that means I love you guys. I have been dealing with issues for about 8 years now, and haven't been able to figure out what exactly is wrong. However, after reading the post on this site for a few months, I think I have a better idea. I have been diagnosed with NCS after the most enjoyable 20 minutes on the tilt table, and the resulting three days in bed miserable, the Dr. told me I had NCS, wrote down and the wrong prescription and sent me on my way with a follow up apppointment the next year... bless his heart. You can imagine my delight when I go back to see him a year later and find out he is out of the office the day he scheduled the appointment with me - and the replacement Dr. tells me I had been on the wrong meds for a year.

    Anyway, my journey getting to this point has been educationa if nothing else. I am going to list my symptoms and ask what you guys think?? I'm not asking for an internet diagnosis, but more or less asking for direction.

    I have been to two sleep studies and get no level 3 or 4 sleep and only the occasional minute of level 5 sleep... up to three minutes a night.

    I awake feeling completely stressed and covered in sweat... like needing to go wipe the sweat off with a towel.

    If I stand for more than twenty minutes or so, I start getting clammy, then my legs get sweaty, then nauseaus.

    If I am working in the yard, pulling weeds or anything that requires me to bend over, I get sick to my stomach. For example, I was working on my truck a few months back, getting up and down under the truck, and I got so sick, I ending up vomitting.

    I have no tolerance for heat, and it doesn't have to be extreme heat. Even upper 70s to 80s will make me miserable. On the other hand, I can go camping in freezing whether and I am fine. My wife calls me her personal heater.

    When I exert myself, I risk passing out or coming very close and I have to lay down with my feet up. If I let it go to far, I end up in bed for days feeling like I have the body aches that most people associate with the flu.

    So, with all of these issues, I feel pretty worthless. My 12 year old son thinks I am a lazy old man. I am not sur my wife really understands sometimes either. I think she tries, but I think it gets old for her... I know it has gotten old for me. I have always been an out going, athetic guy. I grew up rock climbing, kayaking, and doing most anything outdoors. Life has changed for the worse, and I'm not like it.

    I am currently taking 50 mg of Atenalol, 30 mg of Paxil, Trylipix. I typically take 2 benedryl, and 4 mgs of tizanadine to help me sleep. And, I take Prolosec daily for heartburn.

    I am not sure of I have POTS, or if my symptons even fit. I would like to hear what you guys think??

    Thanks!!

    Greg Sims

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