Alaska

I think in the grocery store I have issues because you are constantly scanning and reading, scanning and reading... looking up and down, left and right, all while the sounds of registers and noises of "clean up on aisle 8". Just got back from one of the big stores and had a hard time. I got to figure it out. It's like I'm hanging upside down when I'm shopping.

Put ankles about 6 inches from the wall, put back to wall and stand still for up to 30 minutes. So, like a tilt table. Not sure if it will help, but thought I need to try everything. Hey, pretty cheap intervention right?

In addition to my other interventions I'm going to try, I am going to start doing some at home tilt training by myself. I plan on trying at least 30 minute sessions every other day at a minimum. Thoughts? Here are some links: http://www.ncbi.nlm.nih.gov/pubmed/10534467 http://www.medscape.com/viewarticle/703289_4

I actually purchased a sleep number bed, as I didn't want to take the risk of getting a bed that I didn't like. I fairly happy with it, took a little while to adjust to the new bed.. but I think that's normal. I didn't get the one that bends up and down, didn't see the point. As for elevating, I simply used a regular frame and put 2 by 4's under the one side. I do have a log frame bed, so it stops the bed from sliding off the box spring... if you didn't have that I could see that it would probably slide down. As for the tilt training, I should probably put a new post on that and see what people have thought about it or if the tried it. Seems I have found research that states it works. Here is one: http://www.ncbi.nlm.nih.gov/pubmed/10534467 Did the tilt training at home today and did 30 minutes without feeling like passing out. It was just hard standing still for 30 minutes without moving, as my knees hurt and feet started hurting.

I spent a lot of money on a split king (basically two twin longs together) so I could elevate my bed 6 inches and my wife wouldn't have to. It seemed to help some, although it's really hard to tell what's really helping when you are trying so many different things (like changing meds or eating different). It took me a little bit to get used to it, but I sleep fine now. I may even try to raise it higher if I can. My thought is I need to try everything I can to get better and I'm motivated to do it for me and my family. I'm really motivated by the natural, non-medicine interventions when possible. If there were some theories that eating dirt would help, I would do that! Next on my list, starting today actually, is starting tilt training at home. Why not?? I tried it last week and was challenged with pre-fainting symptoms within 10 minutes. It's not easy I'm sure, but I don't want to live this way anymore. I'm going to fight! http://www.medscape.com/viewarticle/703289_4

I should add that I have ADD also, so my mind already has problems filtering out noises and visual distractions

This is my biggest issue. So, I might be having a bad day and I can get by. I can watch TV and do other things that don't require mental processing. BUT, add having to process information from somebody and communicate back it's very difficult. And because we are sitting so close across the table from each other, I start feeling anxious as I start to feel worse because I try to hide that I'm not doing as well and feel that it is easily detectable. Going out to dinner is really bad I noticed because 1) I'm sitting still and not moving 2) I'm eating which pools blood to my stomach 3) it always seems to be hot, 4) lights are usually bright 5) it's usually noisy. I for sure get anxious because I worry "what if"... what if I can't do it, what if I faint. That seems to ramp everything up and then my fight or flight kicks in more and senses become overcharged. My thought is because the brain is not getting the blood it needs, it's not getting the oxygen it needs. When I'm overstimulated in the environment I think it's because my brain is asking for more oxygen to process all that is going on and it can't. Interestingly I saw on an MS website that many people with MS have the same issue of being overstimulated. Wearing sunglasses helps me some. Some people consider using ear plugs. Some suggest sitting away from the kitchen to lower the heat and the noise.

Been having more episodes this week where I get close to fainting. I have only fainted once and that was during my tilt table test. When I fainted during that test, she stated that I had seizure like activity. So, this week when I start feeling worse and start having the pre-fainting episodes I start getting really hot, I notice I'm blinking a lot (seems I'm just trying to ground myself), and then when I gets even more severe I start getting a taste of metal in my mouth? One episode I thought I was smelling smoke. These sound like simple partial seizures to me and possibly auras. Luckily I don't actually pass out, but feel real close. I'm diagnosed right now with neurally mediated hypotension. My last EEG was normal. I should say that I also have frequent muscle tics/twitches during the day. Is this just my blood pressure lowering and it's just NMH. Or is it my blood pressure lowering and I'm having real seizures (simple partial)?

I posted on the other thread that two winters in a row I lost hair that created a bald spot on the back of my head about 2-3 inches. They tested thyroid with me many times, and it's always normal. Luckily all the hair grew back both times in about 2-3 months. It was a bummer because the person cutting my hair stated "you have a large bald spot". I'm a guy, so the cut was really short. I had to get creative and do a "comb over" on the back of my head, but had to wait for my hair to grow back. I mean that spot was completely bald. I would see hair trying to grow back, but would immediately fall out due to inflammation. Some of the Doctors at the time told me that it may stop with just that bald spot or it could go as far as taking all my hair on my body. And of course everyone stated that it was stress related. To tell you the truth I think it was lack of sun related, because I had really only moved to Alaska a few years before and both times I lost hair in the winter when we have VERY limited sunlight during the day. I know Vit D is really important with immune health. I also did realize that my head is often very itchy and noticed that I would itch my head. I noticed that sometimes it will only itch really bad in one spot and realized that the itching was probably the inflammation of my hair follicles. Well I thought that maybe itching it could have contributed to the hair loss. Well, I try as hard as I can to leave my scalp alone and started getting the expensive shampoo's... worth the price I figure. It's been 2 years now and no hair loss, so that's good (I'm knocking on wood right now). I do have one spot on my leg where I lost hair and it never grew back, but I don't care about that. I guess if you are a woman and shave your legs it would be a nice symptoms to loss your leg hair on your legs. Why can't we have positive symptoms like that? But losing my hair was my first symptom before I started developing dizziness two years later. There has to be a connection, but none of my Docs have stated that it is related. Well except those that say it's only anxiety and stress. And one last thing, I have been salt loading and it wasn't helping. I then realized I was only using non-iodized salt, so I switched to iodized. I could tell a positive difference in the first 1-2 days. I wasn't sure if it was all the other things I'm doing or the Iodine. I mention this because I know that iodine is important with thyroid function. SO, maybe it is the thyroid!

Wow. I didn't think about how many of you are effected the same way. I feel for you all. I'm a guy, so my haircut was easier... I just have them use a 6 guard on top and 1 on the side. But she seemed to be taking forever. I feel bad because I asked her if she could hurry up please. I made it though. It's interesting when I started feeling like fainting, I got really hot and my senses went into overload. I started hearing how busy it was in the place and all the people talking. That was likely my "fight or flight" response kicking in, which makes all senses hyperactive and ready to "fight or flight". That's interesting about the hair, as starting 3 years ago I developed alopecia and lost a patch of my hair in 2-3 spots on the back of my head. This happened the winter two years ago and then the following winter. Thankfully it grow back. But, this all happened before I started having the dizziness and before being diagnosed with neurally mediated hypotension. I'm curious about the connection. They tested my thyroid probably 4-5 times in the last 4 years, and it is always normal. So my hair loss was really my first sign of something being wrong. That is an autoimmune thing, and I have always question if my NMH is autoimmune related.

In the start of my diagnosis journey, many of the Doc's stated I was going through anxiety/stress because all the labs stated I was normal (well until the Tilt Table Test). I told them it wasn't CAUSED by anxiety. I think anxiety is present only after my body sends signals to my brain that "something is wrong, take action". But see how I said AFTER something is wrong with my body (like low blood pressure). This is what I had to keep telling the Docs. YES, anxiety is there, but only after an episode of something like sudden low blood pressure. THAT'S PRETTY NORMAL!! I have found that if I'm feeling a little off I have to work to stay as calm as I can, because I have found the more stressed or anxious I get about it, the more hyper-aware I become of myself the worse I get, and so on and so on. So anxiety does play a part, in that it will take a situation from bad to worse as the surge created by fear or anxiety starts to ask my body for more "ie fight or flight" and my body is already trying to take a break and can't do it. I have found the best thing to do is to be as pro-active as possible and listen to your body for the early warning signs. Listen really for any sign. Feel a little hungry, better get something now. Don't wait until your are starving. Starting to feel a little warm (heat is a trigger for me), I keep a fan by me at work and turn it on before I notice I'm really hot. It's bright outside (I'm sensitive to light), make sure to shut the blinds early and feel free to wear those sun glasses in stores and out to eat. You did the right thing to pull over and were listening to yourself. Did you listen soon enough though? I don't always do this myself and later after an episode realize that I didn't listen the early, early warning signs. I know that some of you have these surges with no reason behind them at all, so my reply doesn't apply to that... unless maybe there are little things you haven't picked up on yet that cause them.

Think they would have charged me for the haircut if I passed out?

You know, when I started feeling really bad I was looking down for awhile and they do put those wraps/gown around your neck pretty tight, and looking down made it even more tight.... so maybe that was it. I just got my MRI results back of my neck and spin. Still have to talk with the Doc what it all could mean for feeling dizzy. But this is what it said: "There is a broad-based disk bulge at the c6-c7 level which results in narrowing of the canal and impresses upon the cord" So, I don't know if that relates to my symptoms or not??

Like many of you I spent 2 years of trying to figure out what the heck was going on with me. Biggest issue was feeling dizzy and times feeling like I was going to have a stoke or seizure or something. Then I had days of just feeling awful and felt out of it. I got overstimulated easily, especially in loud environments. Throw in fluorescent lights, tall ceilings (like Walmart) and the room being too warm and it brings out the perfect storm in me. The Doc I went to at the time stated "why don't you just stop thinking about it for a month or two and call me back then." I thought about saying "why don't you put your hand in boiling water and you don't think about that and call me back." I actually thought of something else, but I probably shouldn't say. I fired him and found a Doc that listened me. The new Doc took 3 hours with me during the intake, and I was looking at my clock during the meeting because I had to go. That was a first. Well eventually a tilt table test was ordered and I passed out in less than 10 minutes after being put in the standing position. So that was my intro to what is my current diagnosis of Neurally Mediated Hypotension. That Tilt Table Test was a fun ride... in no way at all. They should pay me for it. Luckily I had never fainted before and still haven't without the TTT, but have a lot of pre-fainting episodes where I feel very close to fainting. So, to the haircut. The last few years I've noticed I worry about getting my haircut because I seem to feel worse while I get one. Today was no different. As the haircut continued I started feeling worse and worse, to the point my forehead is sweating and I'm thinking to myself "do I need to get down on the floor before I pass out." She asked "are you ok". I must have looked bad. I pulled through and made it. But then I realized sitting still on that chair to get my haircut is basically the same as not being able to move on the Tilt Table. I do feel bad standing in lines, but at least you can move around. Anyone else triggered by haircuts, or having to sit still like in a car?