khaarina

Morning appts are torture for me. I avoid them like the plague. Maybe once I get my insomnia under control I can do mornings, but I doubt it. Still, you gotta do what you gotta do. For people like us, being sick is a full time job, and even that feels like an understatement.

I tried a gluten free diet for a month and had no change in symptoms while on it or when I went back to regular food.

My tongue seems numbed also, but the tingling is more prominent, like touching live wires to the tip of my tongue. The only thing new is my doc increased my Midodrine dose from 2.5mg to 5mg, but I'm taking a pill and a half instead of 2 to ease into it. I've also noticed chest tightness and a few sharp chest pains that come out of nowhere. Also my heartrate is lower (low 60s), and I just feel like crap. I've had a lot of nerve related issues off and on since I've been sick (nerve pain, neurological itch, tonic pupil, etc.) so part of me wants to just ignore it and assume it's another one of those things. I just saw my doc on Wednesday and he barely knows what to do with me as it is.

I developed this new symptom last night while I was trying, and failing, to sleep. Anyone else get this? Any idea what it might be?

I have a lot of really bad unexplained itching off and on on my legs, belly, and back. I have also had a lot of neuromuscular symptoms. I don't know if my itching is neuropathy related or related to the blood pooling, but I definitely think it is a symptom of dysautonomia. Unfortunately I can't offer any suggestions for treating it because nothing worked for me. It usually lasts a few weeks and then goes away on its own.

Yes, it happen to me too when I was on 2.5. My doc recently raised the dose to 5 and I've noticed that it helps much more and it doesn't wear off as quickly. So, you may want to ask your doc if he/she will increase your dose. Don't try it on your own though. Too much can Midodrine can cause Bradycardia, scary stuff.

I fought so hard for so long to get a diagnosis that I haven't really had a chance to get mad about having dysautonomia. I've been plenty mad at some of my doctors though! The struggle changed me for sure. It made me focus on myself, care about myself, and fight for myself. After all that, I just can't see me getting mad at myself or the disorder that snuck up and became a part of me.

I have had minor symptoms for about 5 years (tingling and numbness in hands, muscle twitching, and fatigue) but what convinced me there was really something wrong was a sudden onset of fatigue, shortness of breath, tachycardia, palpitations, tingling in extremities, tremors, dizziness, disorientation, and a sharp pain in my upper left arm. This started on April 22, 2011. I was just diagnosed last month, so it took about 19 months.

I get something like that, though I would describe mine as more of a strong palpitation. I get a lot of little palps, but sometimes I get big ones that take my breath away and make me cough. I've been worked up with multiple EKGs, Echocardiograms, and 24 hour holtor monitors and they didn't find anything. I wish I knew what causes it too, it is pretty scary.

Thanks for your responses. I did some more research and there are some connections being made between dysautonomia and blood sugar regulation. I didn't find anything revolutionary, but it helps me make some sense of why I feel this way when I don't eat. In the mean time I put a plastic tub full of Doritos beside my bed last night. My husband suggested it because I seem to need the salt and the carbs, plus I love Doritos so maybe I will be more likely to eat some in the morning. It worked. I do love Doritos, lol. And I felt better much quicker this morning.

I don't have any evidence to back this up, but I suspect that many reported "side effects" are actually symptoms of a pre-existing condition that coincidentally occur at the same time the patient is taking the new medication. That being said, that doesn't mean flushing isn't a side effect of Midodrine. I'm taking it and I've experienced all the common side effects: scalp tingling, goose bumps, etc. but I don't flush. However, like the others mentioned, if you do try it and you have problems, it will only last about 3 hours.

"Probably thinks it's in my head or that I'm exaggerating" This one got me. Apparently all those docs who treated me like I was crazy gave me a bit of a complex because even now that I have a positive ttt, a medical diagnosis, and other irrefutable evidence of my debilitating medical condition, I felt a twinge of doubt when I read this answer. My spouse is pretty supportive, but it's ridiculous what some doctors can get away with.

I only pass out if I stand too long. When this happens my hands get tingly, then I get shaky, my feet turn blotchy purple, then nausea, dizziness, shortness of breath, ear ringing, and then I feel kind of like I'm under water. After that I either pass out or lie down. The symptoms almost always come on in that order. It usually goes on for about 10 minutes before I pass out. For some it can be sudden, but not for me thankfully.

I hate to eat in the morning, always have. The idea of eating within a few hours of waking up just grosses me out. I think maybe it is because my symptoms are so bad in the morning. Anyway, lately I've noticed that if I don't eat in the morning I feel terrible. Mainly nausea, extreme fatigue, and dizziness. Then I'll eat something and 30 minutes later I'm good to go. I've tested my blood glucose several times and my numbers are always normal. I've been on Midodrine for about 3 weeks and I feel much better while on it, but not unless I've eaten. Does anyone know why this could be happening? Do you think it is something I should be concerned about?

I had a similar sensation experience when I tried 30-40 thigh high stockings, so I took them back and got knee highs. My cardiologist said that knees highs wouldn't work for me but I can literally feel the blood in my legs getting pushed upward and maybe it's all in my head, but I think I feel a little better when I'm wearing them.

I was on a 5 day Prednisolone treatment for a skin allergy. It not only cured my skin problems but I felt quite a bit better in general. I told my doctor this, but he didn't seem to think much of it so I assumed it was all in my head. Do you know of any good articles about Prednisone and POTS that I could share with my doctor?

Before I was started on Midodrine I could technically walk about a block (as long as I didn't stop and stand still) but then I would be sick for a couple of days, so it wasn't worth it. Now, as long as I don't forget to take my medicine on time, I can walk a lot more and I don't usually get sick, just a little winded and dizzy but that would pass once I sat down for a few minutes. I find myself looking for benches and chairs wherever I go now because I know that I will probably have to rest. For example: I can go with my husband to the grocery now but at the end I sit on a bench while he does the checking out.

I know exactly how you feel. It took me about 4 days to fully recover from my ttt. I did pass out though, and I was up for at least half an hour I think, but either way the recovery is rough. Once we get potsy it can take days to recover, fainting or not. After my ttt I was worried there for a while that I might never recover, but of course I did and when the doc put me on Midodrine I felt sooo much better. So hang in there. Though it may be gradual, I am sure you will start feeling better soon.

I'm curious about this because I've noticed recently that my right hand is often much colder than my left hand, so much so that I can fold my hands together and warm my right hand with my left hand. My hands and feet have been cold for as long as I can remember, but I never noticed a difference from one hand to the other until the past few days. It happens a lot when I am using the computer for a long time. I am right handed so that is the hand I have on the mouse. Could that have something to do with it?

Before I was diagnosed I kept falling in the shower because of this. I thought I was becoming a clutz.

Oh, I forgot to mention, I also got a substantial amount of color back in my skin (especially my face) and I was able to think more clearly. Not bad for my first day on a new medicine!

Thanks for your comments. I have some interesting (and exciting) results to report from my first day on Midodrine. Within about 30 minutes of taking it, my head felt like a plasma ball--you know those glass balls with the lightning looking stuff inside that follows your finger when you touch it? Literally, the tingling followed my finger when I touched my head! It felt really bizarre but it was no big deal. In fact, I kind of liked it because it told me that the medicine was working in my system. The other side effects were a dull achiness in my chest and goosebumps all over that came and went, but all that pales in comparison to the benefit I've already noticed. First of all, my headaches disappeared. I hadn't realized how often they occurred until they were gone. Second, my hands and feet visibly shrunk (I could make a proper fist!) and I no longer felt like a big overfilled water balloon. And third, I had tons more energy and tolerance to standing and walking. I went with my husband to the grocery store and I got through the whole thing without having to find a bench and sit down. When we were finished, I wasn't lightheaded, drenched in sweat, or short of breath for the first time in a year! I'm definitely not 100% but the difference is amazing. I only wish I could take it at night too, but the doctor said I would get high blood pressure if I lay down while on it. So, I guess the next step is to figure out how to deal with this insomnia.

My right pupil gets really dilated when I am feeling really bad. It was my primary care physician who first noticed it. He referred me to an opthalmologist who diagnosed me with Adie's tonic pupil. I have since learned that this is a pretty common problem with Dysautonomia, but I don't know what causes it.

My doctor diagnosed me with NMS yesterday and I will be starting Midodrine today. I am a little apprehensive about it because I have tried so many drugs that failed me. I would be very interested to hear about your experiences (both good and bad) with trying Midodrine. I am wondering about side affects, how quickly it takes affect, which symptoms improved and which didn't, etc.

I was diagnosed today with NMS by my new Cardiologist following a tilt table test. I was a little thrown because my primary care physician was convinced I had POTS. I have been researching it and it seems to be very similar to POTS. Does anyone know of any good websites that explain NMS or the difference between NMS and POTS?