AshleyPooh

Yeah I made the mistake of taking it on an empty stomach. I ate right afterward and felt better, except for the whole upset stomach later on. I think I will do as everyone suggested. Since I have these tablets now, I will cut them in half and eat them with food. After I run out, I'll switch to thermotabs. I don't understand though why the bottle doesn't warn about the side effects

Yikes, I really wish I had researched the possible side effects of salt tablets before buying them! I got some Sodium Chloride tablets from a company called CMC today, trying to boost my blood pressure as my midodrine, even on the 5mg dose is not keeping it up. I got them from the pharmacy, the pharmacist did not say anything about possible side effects, and neither did the bottle. Within a few minutes of taking one tablet , I nearly vomited. This subsided as I relaxed a bit then ate some food to help coat my stomach. But... About five hours or so later I had the worst upset stomach ( won't go into details). It was ... horrible to say the least. How can anyone take these? Is there any form of salt tablet that won't destroy the stomach? Because good grief, if not, I might dissolve like half a tablet in some food or something but otherwise these tablets are worthless

Well, the dysautonomia may not have caused her death, but may have made her more likely to die from the pneumonia b/c : if she was on medications that affected her heart rate, this could have aggravated her pneumonia b/c pneumonia already affects your heart rate negatively. I had no idea she suffered from this though, and I'm definitely grateful to her brother for bringing attention to it.

lol an interesting forum question, and one I was kinda wondering about myself. For me, pre medication, I was getting so out of breath that I began to worry I would pass out ( and I'm not even talking serious exertion here). Thankfully since I started medication, I don't feel anywhere near that way, so things are looking up

I have NCS (maybe pots too i don't know) , and recently started getting ocular migraines. also have had myofascial pain for about 4 or 5 years. interesting. My mother has both migraines and fibromyalgia, but no dysautonomia.. hmm

Such a sweet guy, he probably saved her from a faint. I'm glad she has somewhere to start now, on finding out what's wrong with her!

Funnily enough badhbt, my cardiologist said she wasn't too worried about me laying down on midodrine. Maybe b/c my bp was so low, they knew I wouldn't spike that high

I called my cardiologist today and they permitted me to go up to 5mg 3 times a day, so double dose basically. I took my 5pm dose that way, but honestly, it doesn't seem to have really changed anything. Just took my bp and it's 95/54, not really different from earlier before the double dose. maybe it's just a wonky day, or maybe i need to take it that way for a few days, i don't know. gonna chug a lot of water and salt, and see if anything changes. On the bright side, my pulse isn't in the 90s today, it's chilling out in the low area, from 50s to 80 or so

Welcome to dinet, and I'm so so sorry about your illness! I really hope you find a treatment that will help you! Please let us know if there's anything we can do for you!

That's interesting, loonymom. I always wake up as well, multiple times in the night. At first I didn't really know why I was waking up, but gradually began to realize it was because my back was sore from myofascial pain. I still wake up quite a bit, but as long as I get up for a minute and move around, I can usually go back to sleep. I'm so glad your son is getting some sleep relief. Insomnia at his age must be just miserable!

I personally have not found a fix to this, except eventually getting sleep. My symptoms are terrible the day after not sleeping ( like today actually, I feel so out of breath it's ridiculous). The best sleep aid I have come across, meaning the most powerful, is Unisom. It's over the counter, and will knock you out like a heavyweight champion. the only problem with it is a heck of a sleep aid hangover the next day, so I only use it for ' emergency' sleep deprivation. Also I found with Unisom, the antihistamine is so powerful that if you resist sleep even for a minute, you will start getting some serious restless leg syndrome type stuff, fidgety to the point of near pain. My boyfriend kept me up once after taking it, only for a while but he was watching tv. I wound up constantly stretching my leg muscles and arms to get rid of the feeling, but as soon as the tv went off and i relaxed, I was out. Decaf coffee is also a good suggestion. It has just enough caffeine to help energize you, but not to send you into tachy problems. I need some right now, really....

Hi all So when I was first put on midodrine, it was working pretty great. my blood pressure became more stable, went up to a relatively normal level, was feeling good. Gradually though these past two weeks, it has stopped working like it's supposed to. I'm not sure if that's a normal thing? I'm on the lowest dose, 2.5mg? and i remember the doc saying that if I needed a dose increase to call them, so I did and left a message for them to get back to me. Was just wondering if other people experienced this as well. The first week on this medication was great, this week, not so much. bp dropping back down into the 70s/40s again, pulse going back up to 100s. Frustrating! Just curious how much midodrine it took to get others stablized? Ashley NCS

You know , weirdly, my cardiologist told me to eat TABLE SALT, not just sodium in foods but sodium chloride specifically. I wonder why?

thanks for replying. yeah i will definitely be careful from now on about what or how much i drink. Also i think i might need to go up on the midodrine, but we'll see how i do after a few days, when everything is more calmed down. On a similar topic, I almost fainted today lol i think b/c I possibly broke my pinky toe. After I hit this lawn chair with my foot and I heard this loud ' snap' sound, i was leaning against the wall and suddenly got super overheated and flushed. Not sure if that was a reaction to the pain, or something going on with the vasovagal stuff, but i went and sat down afterward and didn't have any problems after that

i hate how i feel after eating a big meal, like someone has drugged my food and I"m trying to think through a london fog or something, blegh

Hi all I'm needing some information here. First off, I have recently diagnosed NCS. I'm on midodrine 2.5 mg 3 times a day. Ever since I got on the medication, I've been doing really well, pulse and bp under control nicely. A couple of days ago, I went out with my relatives to a class reunion. I drank some, not crazy amounts but enough. The next day I felt completely exhausted, bp and pulse were not behaving like it has. Day after that, bp was ok, but pulse was hanging out in the 90s. Today, I went swimming briefly ( like fifteen minutes) at the pool, just like wading. Then I went to a church function for my uncle, then back home. I have begun feeling really weird, kinda buggy eyed, foggy headed... strung out like I've drank caffeine. My pulse has been shooting up to 120, and that's sitting down, not standing. Not sure what's going on. I've drank tons of fluids to help me fix what the alcohol dehydrated days ago, ate salt, and am on my medication. Can alcohol affect our systems that long after drinking it? If not, is it typical of NCS patients to feel weird like this even on medication sometimes? And silly as this sounds, would laying down flat resolve these symptoms? I will find out tonight maybe on that one. I find it strange that I'm so groggy and brain fogged when my bp is actually okay ( probably b/c of the jacked up pulse). Just wanted to know what other NCS folks think about this. p.s., I've already figured out that alcohol is a no go from now on, don't worry I learn my lessons well

That's great! I am not on B12 injections, as I have no insurance and can't afford them. But I do have some high potency B12 vitamins I'm about to start taking, and I hope they do something for me as well. So far my midodrine has been pretty helpful. I forgot to take a dose yesterday, after a night of ... well drinking at a class reunion of my aunt's (and dancing which i couldn't have done without my midodrine) and the alcohol leftover in my system was kicking my heart rate up a lot, felt miserable. Definitely remembering to take them today, and no more alcohol for me!

I find that caffeinated coffee makes my heart race, so I avoid that. Decaf coffee is okay, I just make sure to drink a lot of non caffeine fluids behind it. I drink tea everyday. I have found decaffeinated breakfast tea, which is awesome. There are some teas I have that aren't decaf, but I make sure to test them out and see how strong they are. Don't drink caffeinated tea in the evenings, just decaf. I'm pretty intolerant to caffeine. Makes me shaky, and causes heart palpitations like really bad. The cardiologist said I should just stay away from it period, but that's hard sometimes, especially when you are a tea junky!

Nutmeg, Hanice? What does it do? I have heard of idiots who tried to smoke it lol but I have never heard of problems from eating it?

Hi IceLizard, welcome to the forum. I sort of have similar experience i think, and I will tell you why. Before my tilt table test, I thought I was going nuts. The reason was that I would check my blood pressure, and it would be super low. I'd check it literally a minute after, and it would be just fine. I'd still feel terrible, but my bp would look normal. My blood pressure was what you'd call a ' roller coaster' issue, it kept diving down then popping back up to normal, then back down, then back up. It could look perfectly normal, depending on when you take it. I used to check mine multiple times in a row, because I would get drastically different readings each time I think this was my body's way of fighting the drops in bp, by boosting heart rate and raising the bp back up, but never fully able to keep it up. Has your doctor talked about putting you on a blood pressure medication? I'm on midodrine, just started it on the 2nd, and so far it's been keeping my blood pressure pretty steady, and I can tell too, because I don't feel so out of breath and fatigued and stupid like I did all the time before the meds. I would definitely get looked at by a neurologist, and if they say it's just the dysautonomia, maybe ask about what a blood pressure medication could do for you

Hot tea is my comfort food, so no hardship there! I drink it all the time, and especially now since it's helping keep my throat less irritated. I talked to the pharmacist, and he said that phenylephrine is a stimulant, therefore I shouldn't take it. They said pretty much that anti histamine is about the only thing I can do, and maybe a cough suppressant that isn't a stimulant. So that's what I've been doing, taking benadryl at night so it helps dry up some of the stuff in my sinuses. I'm slowly getting better, might still lose my voice but oh well, I need to be more introspective at the moment anyway I am finding that remembering to drink the amount of water they want me to ( at least 60 oz a day) is rather hard, and I am literally starting to write down how much I'm drinking because I keep thinking i've done enough and really I haven't. Is a bit frustrating. I'll probably do better once I get over being sick, and actually feel like eating and drinking again. On the whole, this cold medicine thing isn't really surprising. I was never able to tolerate Sudafed either. Made me so nervous I couldn't sleep , even if I took it in the morning!

You need to see a cardiologist, I think. My brother had A fib, collapsed one day and was hospitalized, to find that he had something called WPW or Wolff Parkinson White syndrome. Basically it's an extra electrical lead in the heart that fires off, causing afib. They did surgery and blasted it away, and he's doing much better now. There are a few reasons for AFib, but that's one of them. I don't know of any AFIB that doesn't need to be investigated pronto though! I would suggest seeing a cardiologist

so far, it seems to be actually controlling my blood pressure. it's been running in the 117/74 area , which is really good for me. my heart rate is chilling in the 70s and 80s, and i run a little tachy too normally. I'm not sure if it'll stay that way, or if it's just a good few days lately, but we'll see!

Hi all I am sick with a cold, and got some theraflu over the counter for it. I know I am not supposed to take psudophedrine, so I got a different kind, but when i got home and looked up drug interactions, it says that Phenylephrine is also something i should ask my doc about before taking? I understand that they probably don't want you taking anything that can raise your blood pressure extra, but as I'm on the lowest dose of midodrine, and my blood pressure still isnt' really even high, it's low-normal, would it hurt to take theraflu tonight? just curious if anyone else has run across this problem. I'd call the pharmacy but they are closed.

Shan: I am feeling both 'more' normal and 'less' normal lol. More normal in the sense of not having as many issues with the NCS, but less normal in that I'm sick :/ Stupid sinus infection/ virus!! No wonder I was having so many issues yesterday! but the side effects of the new meds were disguising me being sick. I probably had a fever and couldn't tell b/c of the goosebumps/ chills ! Ironic I hope you also feel more normal and well