Alaska

Being optimistic that you will be well enough by then is important. But usually just the anticipation of a feared event produces more anxiety than the event itself. You need to be realistic. If you have problems standing still or fainting, you need to be flexible with your plans which could include a nontraditional wedding, like a very short ceremony with minimal standing. Or maybe just get married at the court and have a big reception if you feel better at those things. But I know this for sure, don't do something that is going to add to your emotional stress. Love is what matters. It wouldn't matter if you got married on the moon... Well I guess it might because it could add to orthostatic tolerance . For real though, maybe don't make any big plans now and 2 months before review how you are feeling then and what you feel ready for. I know 2 months is not really enough for planning, but it's realistic. Being realistic is what we all need to do. I really feel for you though because if this had always been your dream I'm sure you are hurting about that, for which I'm sorry and I feel for you. But remain optimistic, you will be better by then.

How long have you been taking the alpha lipoic acid. I just started that about a month ago.

I've been following your posts as I've also been increasing my workouts in hopes to feel better. I do 35 minutes running with some walking on the treadmill and 40 minutes on one of the insanity videos (as seen on tv)... I still can't finish one of those videos without breaks or skipping some. Do you walk some when running or is it all 50 minutes of running? I appreciate your information man, you are inspiring us. There are so many days I don't feel up to exercise, but I force myself. Seems exercise has been one of the most supportive interventions. I'm pushing myself. Heck, tonight I watched most of my game on tv standing rather than sitting. I figure if I have a chance to work my heart out and build more heart strength I need to do it.

A few times the smell has made me hungry and excited me, and because of that quick change of emotion I felt dizzy and thought I might faint. There is something about that quick change of emotion that triggers me. I can be getting excited about a basketball game or worried feeling and I have increased symptoms.

How Much Do You Think Deconditioning Led To Your Symptoms? There are three big factors in regards to my physical activity that happened before I developed NMH. 1) having a job that was sitting all day 2) having children, so much less active 3)knee surgery that took like 10 months to get to running again.

Tried Prozac, celexa and lexapro... all made me feel worse where before the meds I would have pre-fainting episodes that I could work to get through, but with the meds felt that I would actually pass out (where my teeth would start tingling).

Tried it two different times and really gave it a try for 6 months. I thought it either made me feel worse or I was just relapsing. This could be the med for you though so you need to try it.

I start to blink a lot. I almost feel like I start doing it to concentrate and ground myself when I start to feel like fainting or feeling out of it. It's not a flutter though.

My forearm feels week and numb, sometimes a cold feeling. My other limbs sometimes just feel weak. I don't wear compression stockings (sorry, I have to say that instead of hose.. to keep some of the manliness in me). So it's probably not that. She actually told me to wear a wrist brace while I sleep, thinking maybe I sleep on it strange?? She didn't even ask how I sleep or if I even sleep on my hand/arm. So, I'm just trying to figure it out. I think I will go to my main Doc and run it by him, as that's really the role of a primary to help guide you and review to make sure things are right. I'm not trained to do that. I just wondered if I have some form of neuropathy, could I have some starting forms of autonomic neuropahty. Regardless I've started taking the following supplement as I have be reading on various web pages, such as Mayo Clinic, that these supplements work to stop nerve damage and in some cases help restore nerve growth. I take 5 of those pills spread out in the day. http://www.gnc.com/product/index.jsp?productId=2133328&CAWELAID=293850574

Had that nerve and muscle test done and the results came back as mild peripheral neoropathy. She stated the assumption was that it was coming from possible problems with my spine at c5 and c6, as there was a bulge that showed up in the MRI. SO, I don't know much about this, but know that there are many things that should be looked at that could be causing this is and not to "assume". Should I be pushing them to do more testing to look for the underlying cause. I've done so many tests, you think it would have come up already (like diabetes). I know if can get worse if the underlying cause is not taken care of. Or, is this part of dysautonomia? Is being "mild" even a big deal or something to be concerned about?

Is this the article: http://www.stars-us.org/files/file/Mestinon%20UT%20final.pdf My diagnosis is neurally mediated hypotension, and most of my problems is getting dizzy or pre-fainting symptoms while sitting or standing still OR having to much mental processesing going on (like at a big store like Walmart). The alopecia had an onset in my life only 6 years ago. Luckily haven't lost any hair in the last 2 years. Just one big bald spot on my leg, that I don't care about.

My doctor just decided to prescribe it after I made a comment that I have muscle weakness and after the nerve conductivity test where they found that I have minor neuropathy. I told him that I also developed alopecia before my orthostatic intolerance developed and questioned whether or not my problems were related to an autoimmune disease. I guess this medication is prescribed for muscle issues related to autoimmune diseases. I've only taken it last night and this morning and am not sure if it's helping or not. I had the typical dizzy spell this morning already while I was at work so so far it hasn't helped with that. I'm not sure if the medication is even supposed to help with that anyway. Maybe others can clarify that.

I appreciate you sharing what has helped. I have just started Mestinon today and was happy to see that on your list of what helps. I was trying no meds this week and went off adderall but the week was horrible. So, time to try a new med. It's funny because I too have limited my carb intake to evenings.

We wouldn't have it any other way, right? That would be too easy!

When you are diagnosed with neuropathy there can be many different reasons for having it (like diabetes, lupus...). So, when you get a dx of neuropathy, do they end up doing a bunch of tests to rule those underlying conditions out?

I have tried a variety of medications and have found that I respond best to Adderall extended release (a stimulant medication). It helps with my ADD, but as I later found it helps increase blood pressure. It's been over a year being on it and it seems to be helping less and less and I still feel bad and have hypotension. At times I think it actually spins up my dizziness. I guess I wonder if this medication is helping me recover or keeping me from recovering. This medication is like drinking sips of coffee all day long. Who knows what that is doing to my adrenal glands and wouldn't be helping if my adrenal glads are contributing to my symptoms. The nice thing about this medication is you can stop and start when you want. I didn't take it today and feel run down. So, if I stop this medication I will not be on anything. And to be honest, I'm not sure that medications are even the answer for what is going on with me. So, this week I'm going to try to go off it and be on nothing. I have already gotten myself to run or yoga 30-40 minutes daily. I think I'm going to increase this by getting up in the morning and run for 15-20 minutes (although I got up this morning a really came close to crying as I was so tired and REALLY didn't want to do it). In addition to this I plan on eating as well as I can and as natural as I can, avoiding gluten and simple sugars as much as possible and staying away from artificial flavors or colors. I will make regular smoothies packed with greens that could make me yak. I plan to still salt load. I hope to push myself physically, but balancing that with resting, relaxing and sleep (or napping when possible). I am going to work on listening to my body more and relax or stop when I need. Time to run... literally.

One day I noticed my foot twitch. I noticed the twitching become more and more frequent and went from just my foot to all my limbs. That happened about 2 years and no other symptoms, (no oi or any awareness of any dizziness). Then two winters straight I developed alopecia and lost hair on my head, an it all grew back both times. Then about 4 years after noticing my foot twitch I got the oi and dizziness and diagnosed nmh. So, for me it was a gradual worsening of twitching and I have them now all day long multiple times an hour. I should say when the dizziness hit it was very sudden though. So I remember the first day of it.

Sorry, but I had to post this article. The only time in my life I lost hair and had alopecia was when I moved up here to Alaska... and now they are concerned about the polar bears developing alopecia? Part of me laughs, but to be honest part of me wonders if there is something about Alaska that is causing it. My wife told me I guess it is happening to the seals up here to. I know, I know I sound paranoid (I'm not taking this too seriously). But I bet most of you have wondered if something environmentally is causing your problems. Is it the fish... is it the northern lights . OK, I better stop... no, I'm not crazy. I wonder if the polar bears have developed POTS? OK, I'm done now. http://www.denverpost.com/nationworld/ci_20348842/scientists-stumped-by-alaskan-polar-bears-fur-loss

I did 4 inches first and now it's at 6 inches. It took a few days to sleep "normal"... although I never sleep normal it seems. It's been 5-6 months now and I think nothing of it now when I sleep. You adjust, kinda like when you are on a boat your body starts getting used to the waves. Somebody mentioned that when he would adjust the height he would wake up in fear or a rush and interestingly that happened to me also. Strange. Maybe the blood pressure does get too low and you wake up in fear. Doesn't happen anymore. I find I slide down a few inches, but nothing big. The log frame I have keeps me from going that far. I'm so used to the bed elevated now, that when I lie down on a flat bed I feel like it's tilted down on the head side. As for feeling better.... not sure. I've been in a relapse (well feeling worse than worse the last 2 weeks where I felt I may faint like 4-5 times. So, maybe it works and maybe it doesn't. Wish I knew? BUT, it's not harming me and I need to try. My job I sit all day and in the last 6-7 years, I have had to sit more and more, with less movement and physical activity. I think this has been a factor to my issues. I didn't realize it but at work I was always putting my feet up on the desk or crossing my legs. When I got home to relax I was on the couch with my legs up again (not thinking about it) That probably made things worse, like reducing gravity on my legs maybe reducing blood volume (like the NASA study thing). So, I stopped doing that, keep my legs down if I can. When I get home to watch TV, I no longer put my feet up. And of course when I sleep I'm tilted. Maybe it takes awhile?

I should say also, when I feel like passing out I have auras where I start tasting something metallic and a few times have smelled smoke (when there is no smoke). I have researched and auras are really simple partial seizures happening. So, maybe this is what is happening. It's not really considered a seizure disorder though, from what I'm learning. Could this be what's happening?

This is probably not it, but I would question if Neurontin can cause things such as tardive dyskinesia? The symptoms you are describing don't sound like classic tardive dyskinesia. Tardive dykinesia can be caused by a serious side effect of certain psychotropic medications (usually antipsychotics). So, I doubt it is and don't want to scare you. Just a quick search I found this: http://www.ehealthme.com/ds/neurontin/tardive+dyskinesia http://en.wikipedia.org/wiki/Tardive_dyskinesia As for myself, I have been experiencing increasing muscle twitches and spasms. They happen mostly to my hands and feet and only when they are at rest. They will happen multiple times an hour. They don't hurt and I really am not too concerned about them, except that I hope they are related to the cause of my problems so I can fix it. I just had a nerve conductivity test this week and hope to have the results next week. I have had the twitches 4-5 years now and this is the first time I had the nerve test. No other Doc took them that seriously. I should say that I also have a general feeling of weakness.

Sometimes it's this simple things that get past us, but if you just started a new med and that happened I would say its the new med.

It's frustrating because it's one test, wait two weeks. Then another test, wait two weeks. It's been 3 years of this now. I've lost a little faith in the medical feild. I had this thought in my head that we had so much figured out, but have learned we really don't. If I had to start over and pick my first doctor I think my first question would be "if you don't know what it is will you be straight and tell me you don't know and refer me to somebody you think does?". It takes a lot from somebody to admit they don't know. Often it's simple stated it's psychological if they don't know. Frustrating!

I just can't get out of my mind that I am not at the root cause of my health problem! Maybe it's because I have a history of getting the wrong answers, such as "it's anxiety". I'm diagnosed with Neurally Mediated Hypotension now. But, like another post stated, even when my blood pressure is normal I feel awful and dizzy. I've tried all the medications and intervention for blood pressure, blood volume and to keep a stable heart rate. All the medications have done is make me feel worse. I actually laugh stating "medications have actually helped me because they made me feel so much worse that when I go off of them I realized I wasn't as bad as I thought." I know I got a laugh from some of you on that. Anyway, I just feel my diagnosis isn't at the root cause, which is where I want to be. Finding the core issue is essential!! My thought is that if you don't get down to the bottom of the fire, you will never put it out. Seems I'm just aiming at the top of the flame right now.

To get the full benefit you need your whole body tilted. I'm not sure if any of the studies included using a wedge. Maybe I'm wrong. But the idea is also to built orthostatic tolerance, by using that gravity with you feet down lower to pull that blood back to your heart all the way from your feet. Tilting the whole bed does this. Almost like a slight tilt training.