Becia

I apparently had three seizures last night, and woke up in the er confused out of my mind. The doctor thought maybe it was from the Tramadol I've been taking for my more and more recurrent migraines I've been experiencing the past couple week, but thought it could have been perhaps because of my dysautonmia as well. We really didn't get any answers to why I had these which were a first that I could ever recall, but I was curious if anyone else had on set seizures with their dysautonmia issues.

They also gave me compazine for vomiting and my headache that I still had at the time. I don't have a headache at the moment, which is nice, but my word, that stuff really makes me have horrible panic attacks, and they were amazed my heart rate hit close to 200, and then wondered why my bp was sky high, and I was fresking out about how horrible it felt. They are not my first choice of er, but just where the ambulance took me.

I guess I'm weird, because it takes me about an hour to see any result from my 10mg tablets, and there are lots of times that I don't see any result.

This happens to me when I am coming to from being passed out for a length of time. I'm kinda twitchy and shaky as it is, but my friends and I notice it more when I've been unconscious for several minutes, like when I fall and hit something.

Yeah. They upped my florinef dose last week to .02, and I've had headaches ever since. My bp has been running really high lately, but the docs said that's what they wanted to see. Doesn't help the fact I'm still passing out.

And we still laugh about the Arabic thing to this day... All I can say is maybe I thought I didn't want to offend anyone by cursing outloud where the kids could hear or whatever, but to be half out of it, and that's what comes out of my mouth, was indeed a venture!

I guess I'm kinda a rebel. I make myself leave the house at least twice a week, if not three. I attend church, surrounded by people who mostly understand, or I stay to myself in the youth room and listen from there. On Wednesdays, we have a church dinner, and I attend a class with a guy I live with leading it, so I've got security there, and he knows where I go when I feel like I need to escape. Being a musician, I also still try to attend band practice on Thursdays, using my ear plugs, going to the youth room if needed, and I stay to listen to thy choir. Things like that I hope I can get back into someday soon, but being a drummer, I know I don't have the endurance for it all right now, and I do good just trying to stay conscious. On those days, we also do grocery shopping, any other errands I may need, etc.

I also like going to the local band competitions to watch the marching bands, but those outings are done very infrequently right now, just because I'm sensitive, but I at least want to try them, and my friends give me that chance.

I've been given the option of not going places many times, but I don't want to feel like I'm giving up in my mind. I had been a homebody all my life, and just the past few years gotten the nerve to get out more, and then here comes pots taking it away. I try to use my best judgement, and have an escape plan in place if needed.

I've started to take acidophilus in the past week, trying to help some of my ibs symptoms. The bentyl I'm on for flares has been not very effective in this current one, and I remember taking this last time I was on antibiotics for an infection. Can't say I have any relief yet, but can't hurt... I too will look into the brands mentioned here.

Oh my Cala!!!! I busted out laughing at your story... You got more guts than I do going to places like that. I would even make the trip down the road to a haunted house.

My funny story happened when they thought I broke my hip right after my diagnosis. It had been maybe a week since I was diagnosed, and I was trying to come out of the bathroom, passed out, and woke up and couldn't move. That is typical of a bad out for me, so when my friends got home, they did they usual "let's try to move her up to bed," routine, and yeah, I screamed bloody murder. Called an ambulance after about 30 minutes of me trying to move my leg, but not being able to, and got these four totally hot dudes. I of course, was in my pjs, not wearing underwear, and the pain kept making me pass out. I speak a couple different languages, sign language being my fluent one, but I also speak enough Arabic to be dangerous. I came to as they were trying to move me, and started cursing in Arabic. Everyone was like "what tha...!?". I then also flipped a couple of them off. I wasn't very nice, but it had everyone laughing because most people would just curse in a language everyone knows, nope, leave it to me to find some obscure way of telling them off.

My friends also noted they had to neck brace me in case of injury, and that there is a setting on the brace called "neck less". We found that hilarious after I got a shot of pain meds, lol.

Social situations I too like to met with humor if I can, but some days are easier than others. I carry my kit around that has my survival stuff that helps me, but even then sometimes it's still a rough go. I had too many triggers while out today, so I'm sure I'm paying tomorrow for everything, but at least I managed to laugh a couple times, even if I did pass out.

I too, have issues in social situations, but lately, I haven't been in the situations completely alone, but with people who know my situation, and basically look out for me. They know when we get to church, I prefer to lay on the couch in the youth room and listen to the first service, because the volumn of the praise band is too much for me to handle, and the array of perfumes around me make me sicker. They know I have ear plugs for when noises get to be too much, and I frequently close my eyes or wear my sunglasses if the lights bother me. They know they need to warn me if they are suddenly turning lights on as well, and that action in movies surge me, thus causing me to pass out.

The few times I go out without one of them with me usually ends badly, or with them educating the people in how to handle me and my outs. I am in a wheelchair outsid of the house and in, and that's something we do for my safety, since the least bit of being up causes me to surge, and pass out.

An idea would be to try and get to the funeral area early, and see if you can scope out a place that is quiet and out of the flow of traffic, so if you do get overwhelmed, you've got a place to escape, so to speak. Take a cool washcloth in a bag with you, and if you start to surge or get overwhelmed, dab it on the back of your neck, escape to your quiet place, and recooperate before you head back out again. Sometimes it just takes time for people around you to understand what you're going though, but they eventually will understand. Just takes more time for others.

I'm 10 mg three times a day, but I only feel it in my system for about an hour and a half. I still have syncope episodes even when it's peaked.

Never really smoked, except for a tradition I have on my brothers death date and birth date, which is to go to his grave, smoke a few , and leave the rest if the pack on his stone (he died when I was young, I remember him smoking and started that when I was of age), and as for caffeine, used to drink a lot of it, but have been off of it for a year, except in cases of severe migraines, when I will have one can of pop with my meds to help with the effectiveness (sometimes this works, sometime it doesn't). They both make me jittery, and pop really makes my hr go up. I sometimes drink tea, mostly decaf, but every once in a while I get some that isn't, but the tea doesn't raise it much.

Yes, all the time. It's on the list of things for me to discuss with the doctor on Wednesday when I go for follow up.

As for helping pots, I have no clue, but the anti oxidants of it is pretty cool. I just know lately I'm having whiny girl moments and chocolate just makes me happy, lol. I love dark chocolate just because of the taste.

Hope someone else has some better answers for ya.

Group hug! Totally was having withdrawals. I kept thinking off things I wanted to ask on the board, only to find or remind myself the board wasn't up, lol.

Yeah, I get that a lot. I finally told one friend who keeps telling me "you look perky, you look fine, etc" that if he truly we what I felt like he would be second guessing himself before lavishing those comments on me. To the people around me constantly, who know the look I get before I pass out, or when something is triggering me, I look as good as POTS can look, in their words. I am pale, I have oily skin because it takes so much effort to wash my face every morning and night (and I just remembered what's I forgot at the store yesterday... Biore face wipes!), my hair is a mess under my scarf because I don't have the energy to take a shower in the am and fix it t where it lays down. I'm uncomfortable in my clothes, my socks rub my ankles the wrong way, and frankly, if I could just sit in a hot bubble bath, I keep thinking I would feel better and look better. Well, maybe not a hot bubble bath, but a girl can dream!

I do my hardest to put on a brave front for those not used to being around me. And frankly, I'm a girl, so every now and then, do like to break out of my normal track pants and t shirt routine, and wear some nice jeans, or a nice dress. I like to try to do whatever it takes to feel like a human, and not feel like a prisoner to my body. Sometimes I succeed, other times I fall flat on my face, literally.

Do I look healthy to myself? No. Do I get tired of explaining to others that I might look good, but if you knew the struggle I went through to get this way... Yeah. Some get it, some don't.

I vary with dealing with temperatures. Cold one minute, burning up the next, so I layer too, and always have a hoodie around. There are times I can handle one or the other better though, like when my meds are in my system and working.

Sorry I don't have any answers for ya, but just wanted to wave at ya from southeast Ohio *waves*. I have seen docs at osu, and they have referred me to Dr Grubbs in Toledo, but I have yet to be able to get there.

The last time I really ate was last week in the hospital, because i was on Iv fluids, and had room in my stomach to have food. My friend brought me sushi... It was amazing.

I struggle with the same thing, and now that I am home, still am fighting to get that happy medium. I'm tempted to try protein shakes too, because I know I need some more calories.

31.

Thanks for the responses y'all. Glad to know I'm not alone! I managed to eat some lunch and I've munched very very carefully on some apples today, which are just about rotten they are so mushy to begin with, lol. Been very slow doing anything today, and just irritating. I will definitely read up more about it

Anyone else experience trouble swallowing? Like, you take a drink of water, and just can't, and get choked on it, etc? For about the past week, it's been getting harder and hardere to swallow for me, and its really annoying when you have pills to take on schedule, food you have to force yourself to eat, and of course, our favorite, staying hydrated. We originally thought it was because I was kinda out of sorts due to a slight concussion last week, but I'm still having a tough time. Really chewing food and taking small bites and sips, trying to swallow twice to make sure it got down, but still getting choked.

When I was in the hospital, the EP cardiologist that saw me mentioned possible autonomic failure, and that perhaps this could be connected to that in the long run (which scared me to a heart rate of 170 sitting up), but I was curious if anyone else experienced this, and if so, how are you managing?

Thanks in advance!

I think the Benadryl just makes me relax a bit more so the meds have a chance of working. As for lowering or raising, I don't know at the moment, never really tracked that part because I pass out 20 or more times a day.

I think the Benadryl just makes me relax a bit more so the meds have a chance of working. As for lowering or raising, I don't know at the moment, never really tracked that part because I pass out 20 or more times a day.

My cardio dude put me on Paxil because he was worried with my mental health from being basically home bound. I just started it, so I can't tell a difference yet, but I can tell you I have struggled with depression off and on all my life, and what I used to do when these swings would hit, I cannot now. I would go hiking to my favorite spot and do photography, and I was away from the stresses of the world. I would instantly come back better and my mind cleared.

Now that I'm slowly accepting my diagnosis and what all is going on around me, I'm coming around and trying to be a bit perky with everything. Yesterday I was told I seemed to be more empowered since i got out of the hospital this week. Well, yeah, I had some confirmation in some areas, and advice in others, and its been better explained to me. So yeah, I'm more of I have this, it doesn't have me. This morning kinda bites because I have yet to rouse myself from bed because the feet on the ground thing isn't working like it did yesterday, but that's okay.

I hope you get something that helps you. And I'm a hugging kinda of gal, so I send you a big (HUG) too.

I can't tell it's working for me, but I drink it anyways because I can use all the help I can get. I'm not a big fan of the favors though, s I have the powdered version I can make taste a bit stronger, and I add lemon juice and slices to make it like a fruity lemonade. It's okay.

My only problem it's drinking so much in general is I feel like all I do is drink, so when it's time to eat a meal, I'm not hungry, because I'm just full from fluids.