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About Justin-in-MI

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  • Birthday 09/13/1978

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  1. Usually when I "do to much" my symptoms come back strong like GJenson was describing. I call the weird feeling brain fog. I can't think straight and my body just doesn't feel right, and I'm kinda out of it a little. Have no fear Sue you are abnormally normal like the rest of us.
  2. I visited an endocrinologist who explained to me that all my symptoms (body temperature not regulating, BP, dry eyes, GI, etc.) are regulated by your nervous system through your hypothalamus. The hypothalamus secretes hormones through out your body allowing it to self regulate. So the doctor is saying I probably (testing is tomorrow) have low hormone production in those areas that I have symptoms in and that hormone replacement therapy may be an option. I was wondering if anyone else has tried HRT. For the record I do not have POTS.
  3. Here is a link that describes how it would help "us". http://www.holistichelp.net/dr-al-sears-pace-exercise-program.html
  4. I read online about this program. It is supposed to be geared toward the nervous system and to help it get into balance. Has anyone had any experience with it?
  5. If you don't mind me asking how come he stopped after a week? I have heard of people doing it for a few years.
  6. I read that a lot of people have felt better when getting a few bags of saline a few times a week. This was something I wanted to try. The problem is when I asked my primary care doc about it he said he has never done it before and therefore will not do it for me. Does anyone in Michigan know a doc that will do this? Thank you in advance for the help.
  7. Thank you for the replies. I was thinking of starting an exercise plan of a recumbent bike 5 min a day for a week and then add a minute each week. Go nice and slow with it so as not to over exert myself. Usually after an "episode" as time goes on I am able to do more physically, but then 3-6 months later I have another episode and my body resets and I lose all that I had gained. It's just very frustrating knowing that its going to take me 6 months to feel like I did a week ago the day before my episode. I feel like I'm in a never ending cycle, but alas we push on! I'm going to make an ap
  8. It seems that most of this site is geared towards POTS which I do not have. Mayo categorized me as having Autonomic Dysfunction w/NCS (unknown cause). I'm going to tell a little of my story and hopefully someone out there who has been through this can give me some ideas on getting better. About two and a half years ago I went to bed as a healthy 32 year old. I woke up and a switch was flipped in my nervous system. Symptoms: low BP, chronic fatigue, heat intolerance, noise and bright lights cause sensory overload, dairy intolerance, exercise intolerance (I'm missing a bunch but you get th
  9. I was diagnosed with NCS without POTS. I have chronic issues and plenty of them. I don't pass out standing like POTS but activity makes it difficult for my body to regulate my BP. So if I over exert myself (which is what used to be a normal day of activity) I start to get lightheaded. If I don't drink enough (80+oz) fluid every day I risk passing out. Lots of different triggers for passing out but not just from standing. I can not tolerate heat either. I walk around in a T-shirt in winter in Michigan. Being in rooms with more than one person or around bright lights makes me feel awful
  10. Sometimes this happens to me when I am reading or singing out loud. It causes me to not get enough blood/oxygen to my brain and I feel like passing out. Your increase BP may be your body trying to respond to the decrease in blood to your head.
  11. Geez it's hard to pick one. I guess I will provide a top three. 1. Tingling in my neck and head like a small amount of electricity is running through me. 2. My hearing gets muffled in both ears for a day like there is water in them. Happens every now and then. 3. My breath goes away for a few seconds, like when you get the wind knocked out of you (but without the pain of the impact). Happens usually once a day. Justin
  12. SnowDrifter Where did you learn about the concept "plasticity" and can you point me in the direction to learn more about? If you say it helped you I am willing to try it. I consider myself an open-minded skeptic. That is I am willing to try anything however I doubt it will work. Lynnie What doctors don't understand is that what we deal with are not fears or phobias. This is real stuff that makes living life at times unbarable. We are not afraid of life or of going outside we simply can't do it without feeling awful. Tell your therapist to stick his/her hand on a hot stove I bet they would
  13. Looney, I can't imagine how hard it must be for your family. I have a 6 and a 7 year old and it kills me to see their pathetic faces when they get a fever. At least I know in a few days they will be ok. You must feel so helpless, scared, and worried 24/7 with your son. At least as an adult I can effectively communicate what is wrong and understand my limits and triggers. I can't imagine he has that all figured out yet because of how young he is. I hope things get better for you. The way you should look at the hypersensitivity is like this. We are surrounded by stimulation. The more s
  14. I take a multi-vitamin daily but I will try additional magnesium. Have you had any side effects from the magnesium. I know zinc can be hard on your stomach. I tried those cough drops with zinc for an immune boost when I had a sore throat but it gave me stomach aches. Justin
  15. Looney, Where do you live, maybe your son and I can have meals together in dimly lit rooms with no noise and no surrounding movement. We will use paper plates and plasticware so there is no "chinging" sounds while eating. Not sure if anyone here is a fan of the show "How I Met Your Mother" but there was an episode where some of the friends could not watch the Superbowl so they all agreed they would watch it together the next day. No one was allowed to hear, watch, or get any info on the game before hand to ruin it. Well Mosby came up with this thing called the "sensory deprivator 2000". He w
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