Justin-in-MI

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.

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.

Here is a link that describes how it would help "us". http://www.holistichelp.net/dr-al-sears-pace-exercise-program.html

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?

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.

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.

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 appointment with Dr. Grubb to see if he has any ideas for me.

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 the point). I ended up in the hospital and have been there 15 times since the switch went off. Seven trips by ambulance (the most recent last week). My BP drops, I pass out, and my BP won't go back up until they put about 2 bags of fluid in me. I get in these situations when I over exert myself for a period of time. For instance if I were to work a 40hr week by the weekend I would be in the hospital. Now to my point. Has anyone else had the same symptoms and found ways of improving. If I tried the Levine reconditioning program I would be in the hospital after day 1 because I don't have POTS and that type of treatment will not work. Thank you to everyone that replies.

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. Can't go into grocery stores, restaurants, wal-mart ish stores. I get sensory overload. The only treatment they have given me is to do things to keep my BP up. Drink a lot, sit if I feel lightheaded, compression stockings (which make me hot). Midodrine was the only drug. I don't like taking drugs so I stopped it. Justin

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.

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

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 wouldn't do it. Does that make them afraid of stoves? No, it means they know if they touch it they will get burned. No difference. I choose not to go to restaurants because I will feel awful, not because I am afraid of public places. Blue You are basically describing the same exact way I feel. Thankfully my wife is understanding and I don't get into light wars with her. It makes me feel a little better that I am not crazy and other people are the same as me, but at the same time I don't want anyone to have go through what I am going through. I am ok with dealing with my issues. The only time it hurts me is when my children (6 & 7) want me to do things with them that I simply can not do, carnivals, the zoo, indoor waterparks in the winter. I feel like they have 75% of a dad. It is what it is though and we do what we can. Thanks everyone for your responses!

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 senses that are involved and the more stimulation there is the worse it gets. If I was sitting in a dark room with no sound I am at a 0 and all is well. I start listening to music I go to a 1. Turn on the lights, a 2. Put a few people in the room with me a 4 and now I start to not feel good. Now imagine a restaurant. Bright lights, lots of people doing a lot of things, loud sounds coming from every direction, add eating on top of that which makes things worse because all the blood goes to your digestive system to help digest food. That means less blood to keep my bp up. We are at a 10. I simply can not go to restaurants. Not sure if this helps you or not. As a parent I understand wanting to help your child so if you ever wanted to message me please do so. I would love to help in anyway I could. Thanks for the recipe I will give it a try. Probably cheaper than the amount I go through each week. Justin

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

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 wore it like a hat and it blocked out all sounds and gave him limited tunnel vision so he could only see directly in front of him and it blocked his peripheral vision. My wife and I joke (but are completely serious) that this is something I need for public. If anyone has seen the episode they know what I am talking about. If you haven't, we'll sorry you just read this paragraph. Maybe you can find it on YouTube if you want a chuckle. I am not on any medication. Medication and I don't agree with each other. I have Chron's disease on top of this and when I started treatment for that (about 7 years ago) with remicade I developed drug induced Lupus. Joint pain like you wouldn't believe. Steroids gave me crazy side effects. Then when the dysautonomia started the cardiologist put me on florinef which sent me into a-fib. Heart was at 190bpm by the time I made it to the hospital with no signs of slowing down. I have thought about possibly trying an anti-depressant and going to see Dr. Grubbs in Toledo but I read horror stories about people trying different ones. Making things much worse and causing new problems...like any of us need that! I just drink around 80-100oz of Gatorade a day to ensure I don't pass out and just deal with all the other symptoms since their really is no meds to help everything else (fatigue, fog, etc). At least that is what I have been lead to believe (Mayo Clinic and University of Michigan). I did see neurologists at both places and they believed that this is more of a cardio issue, treatment wise. Justin

Thank you everyone for your responses. Sounds like (unfortunately) other people are dealing with the same thing I am. Every time I try to explain to someone how I feel I always seem to throw in "and no I am not an agoraphobic." I have been dealing with this for 2 1/2 years (I'm 34). One night it was like a switch. Went to bed fine woke up with dysautonomia and have been learning how best to deal with this since. Thankfully I have a very understanding and supportive wife (and DINET community). Everyone feel well! Justin

Trying to see if anyone else has the same issues that I do regarding public places. I was diagnosed with a general form of dysautonomia (not POTS). Along with a bunch of other symptoms (of which are not the topic of this post) I can not tolerate going into restaurants, stores, etc. due to the combination of noise and bright lights. In the case of the grocery store or even my own pantry at home all the labels "wig me out". I start to sweat, bp drops, I get weak and feel like passing out. The longer I am in the environment the worse I get. These feelings start as soon as I enter the environment and after about 5 minutes I have to leave. This is very frustrating. I can't go out to eat with my family. I can't participate in my kids school activities. My wife and I attended a wedding tonight, and by attending I mean she sat and talked with everyone while I sat outside the building. I try earplugs but they don't help at all. Just wondering if anyone else deals with this as well. Thank you for the support we all give each other. Justin

Sheila, My wife who does not have dysautonomia just went through the same thing as you (it sounds like). She had colonic inertia so bad she had a bowel movement about once a month. She was so uncomfortable and in pain she couldn't stand up. The pressure of gravity pulling down on her digestive "parts" was very painful. She couldn't eat much or drink because of the pain, nausea and vomiting. After 10 months of that and testing after testing they finally decided the only way to resolve her issue was to have her colon removed. That was a few months ago. So after her colon was successfully removed (without a colostomy bag) she was starting to heal but not feeling a ton better. She ended up seeing a urologist who said she had a bladder infection and it has been there a long time. She just didn't realize it because the bladder pain was lumped in with her colon pain. The urologist did an ultrasound and said the lining for her bladder was gone (from the infection) and that she has to be on meds for 6 months to try to rebuild it. She got rid of the infection quickly with anti-biotics. So now she is a little better but still dealing with bladder pain. She never went to the hospital for dehydration but it is always a fight to stay hydrated both before and after the surgery. She would say her heart would do funny things before the surgery. My wife has been dealing with that. Two and a half years ago I suddenly got hit with dysautonomia, now everyone's afraid to come in our house because they think they will walk out with a strange illness. Justin

I was on florinef for two weeks. In that time it completely drained my potassium which gave me leg pain. Then my heart rate started to increase with no signs of stopping. I hit about 190bpm by the time I got to the hospital. When I got there they gave me some meds, it finally started to go back down. When it got to about 100bpm I felt like I had just finished running a marathon. Not a good experience. Justin