Nikki

Popcorn, pickles, olives..and vegan beef jerky (very salty!), soups, and I drink Powerade.

I've heard of cutting back on carbs helping people. As far as exercise goes, I like to do yoga and pilates. Most of it is just lying down, and if I can't do certain parts, I just skip it and do what I can. Squats and things like that are good for building leg muscles.

Hm I can't relate to the feeling too skinny thing, but I undertstand how you feel about being unsure of what you're capable of doing. I'm the same way. I know if I go to a place where there are lots of crowds and I have to walk through them, it's going to set off my dizzines. It's not that I'm afraid of the people, I just know that it will make me feel unbalanced. So I avoid places like that. It's just sensory overload for me. On my better days I do just push myself to go, and usually pay for it afterwards. I don't let it stop me, but I it's always in the back of my mind if I'm going to be okay when I go places or if I'm going to be feeling horrible the next day.. I think that's normal for us to feel though.

Thanks for the replies! Yes, I have to go for my test at 7:15 am at the hospital here in town. The hospital called yesterday to give me more information (when my mom asked more questions they eventually said didn't even have my script for the injection, so they didn't even know what the doctor wanted exactly! They said I probably wouldn't have been able to get the test done anymore that day cause it probably would've taken too long to get all this figured out day of. So we had to run back to the doctor cause the staff didn't know what to do either.) *sigh* It makes me nervous to get tests done when all these people seem confused by the simple things..but I'm just hoping it goes smoothly and quickly!

I recently was given an endocinology-like evaluation from a family doctor and he is sending me to have something called an ACTH stimulation test done. He said sometimes with blood pressure fluctuations, something might not be right with your adrenal glands or cortisol levels..From my understanding they take blood once, inject something into you and then take blood in 30 minutes, and again 30 minutes after that. I was just wondering if anyone else has ever had this done. Is there anything else I should be prepared for? I'm not that worried about it..Just a little nervous since I'd never even heard of this test before.

I get this from time to time. I don't really know what would make them go away faster, or stop completely. I just usually lay down and try to get interested in something on tv, or just do something to occupy my mind until it passes. Just trying to stay calm & relaxed. Easier said than done though, I know..lol.

I don't really know what to tell you. I know it was uncomfortable for me as well. I think I was already really dizzy that day..and I know my hands felt sweaty and cold..I kept moving around cause it was getting to me..and the lady just said to stay still. I don't think it really meant anything to them. For me it came back normal. But who knows. :-/ I hope you get the results soon though. Maybe it was something more going on.

I know with dysautonomia..a common symptom is feeling tired and fatigued. I will feel that way from time to time..but also, once in awhile I feel..Hyper. It's hard to explain. It happened today (and I'm feeling pretty decent today, thank God ) when my mom and I were getting ready go run some errands. I told her it feels like I drank a lot of caffeine or something and just feel really antsy. Like inside, my body felt like it could've been bouncing off the walls but physically, I was just sitting there calmly. It's a weird feeling..but it didn't last that long. I didn't feel lightheaded, my heart wasn't racing..No actual symptoms aside from the hyper feeling. Does anyone else get this way, or knows why it might happen?

I tried taking Florinef when I was first diagnose at the end of 2009. For me it caused me to have really high blood pressure spikes. I'd have vertigo, chest tightness and start shaking whenever this happened. Now, I DO have these episodes normally but the Florinef cause them to be more frequent (a few times a week) and my blood pressure was like 170/145..I tried lowering the dose and staying on it for awhile to see if it went away, but it just kept happening, so I couldn't stay on it any longer.

I've had so many tests done for my ears when all the dizziness started (regular hearing test, ENG, caloric, VEMP, a CT scan cause they thought I might have a tiny hole in my ear). For me, everything always came back normal, or 'within normal ranges'..but I do seem to have fluid build up in my one ear from time to time. I've been having more vertigo lately and my neurologist said he thinks it could be inner ear related..My mom asked him if that was it, wouldn't something have shown up in all the testing I've had done..and all he had to say was, 'You would think so,' lol. So I have no idea..I was diagnosed with having a pseudotumor which I think can cause vertigo..It's hard to tell what is causing what with me though.. This is an interesting topic though. I was going to make a post about ear problems myself, so I'm curious to see more replies.

I feel the same way you do. I try to stay positive for the most part, but there are always times when I have constant BAD dizziness/vertigo for weeks on end, sometimes months, and it really is just too much to deal with. I guess I just keep hoping for things to get better. I always pay for things after I do them too. Even just a simple trip to a relative's house can do me in just because of the car ride alone. I don't really know how to handle it better cause I get depressed myself..I think we just have to take things a day at a time, sometimes an hour or even a minute at a time lol..I do really miss doing the things I used to be able to do. Even just going for a walk around the lake with my fiancé, it was something so small yet it made me so happy to just do something like that with him. I think if nothing else, dealing with this really teaches us to appreciate everything in life. To appreciate the good days we do have (even if they are far and few) and just to be thankful for the small things we are able to do, even if we do end up paying for it later. It's nice to have a message board like this so you can talk to other people who are going through the same thing. You're never alone with how you feel. I really hope you feel better soon!

Well, about 10 minutes later it was 112/90 and my heart rate when up to 130. When I laid down for a bit it went down to my normal 100/70 and 70-some beats. I was just wondering cause a lot of people told me anything under 200 for the systolic is fine, but that's usually not the number that goes crazy for me lol.

I just did 15 minutes of light cardio on my Wii. I took my blood pressure when I was finished since I was feeling a little more dizzy & having some shortness of breath. I got a reading of 156/136 and 112 beats. Now, I know the top isn't that bad for doing some exercise..but the bottom seems pretty high to me. Is that normal for people with dysautonomia? Everything I read says the diastolic shouldn't change a whole lot, or possibly 15mm at most. Mine is normally in the 60's or low 70's..My blood pressure is normally all over the place but when it gets that high, I feel just as bad as when it's low..Does anyone else have this happen?

My grandmother just called me (I'm not sure where she heard about this) but she knows I struggle with dizziness a lot. Supposedly it just came out not too long ago..but I was wondering if anyone had heard about it or tried it? Here is the link to their website if anyone is curious. http://www.zyvestra.com/

Aw that's great.

After trying different medications for POTS (and none of them really helping me much so far) I was just curious if anyone had any luck going the natural way. Does anyone know if any certain vitamins or supplements could help some of our symptoms? Any experiences trying things like this, and if so, did it help you any?

Yeah, the do know about my health but they still seem to be forcing it lol..I'll be talking to my fiance early in the day and hopefully we can come to some agreement. I guess I just feel strange having to possibly be laying down in front of people that I've never even met before. I feel okay doing it in front of my own family and people close to us cause they fully understand what it's like for me..but I just feel uncomfortable if it's someone else. Guess that's something we just have to get used to though if it comes to that. :-/ Thanks for responding.

I know what you mean. For me the dizziness is the worst..Focusing can be so hard at times. I agree with the person above me, I have no idea why anyone would ever TRY to feel this way lol. It's horrible!

So I am having a really rough time now. My symptoms have been really bad recently and I've been pretty much stuck in bed for a good part of the day, for the past week. Another problem is my fianc?'s family is in town. Some of which I haven't met before and he really wants me to meet them..He's really understanding normally about me not feeling well and not being able to do things but since his family is only here once a year, they seem insistent on this happening - tomorrow. The thing is, my fianc? and I see each other a lot and on my bad days he tells me I look miserable and not good because of how bad I feel and suggests we go lay down. I don't want to be meeting some of his family for the first time, feeling so so dizzy, having stabbing chest pains..and just looking white as a ghost and run down. I'm just not in the mood to make happy small talk when I feel like passing out just standing..But I don't know when I should push myself anyway, or give my body a rest. Has anyone ever been in this position..What do you do?

Yes, at first I had seen an otolaryngologist in my town who did a bunch of tests (hearing tests, ENG, caloric test..) then he sent me to a neuro-otolgosit in Hershey who did more hearing tests, a VEMP test and sent me for a CT scan of my ear at his last attempt at finding something wrong - he was thinking maybe a tiny hole in my ear or something..but all the tests came back good or 'within normal ranges'..So I really don't know what else there would be to test with my ears. I recently saw my neurologist and he said he thinks some could be inner ear related but when we asked wouldn't something have show up with all the tests I had done, all he said was, 'You would think so..' and he didn't say anything more about it..Other than I'm a big mystery. :-/

I definitely feel a LOT worst. The dizziness gets horrible around that time..If I'm already feeling bad, it makes me feel worse, if I've been feeling good - that will be the thing to ruin it. I always dread that time.

I've probably experienced any kind there is to experience lol. Dizziness has always been my main and worst symptom. Sometimes I'm just a little lightheaded off and on (those are my good days)..The bad days (like the past..oh, month now) have been mixes of lightheadedness, a boaty feeling, the slight vertigo feeling and just being off balance. Some days all of them are combined. Haven't really found anything that helps it though..and I don't think the doctors know what to do with me anymore. :-/

Right now I'm going through one of my bad bouts. I'm so so dizzy, my blood pressure and heart rate are fluctuating a good bit..and I just feel horrible. Too much noise or movement always bothered me when I wasn't feeling good but lately I'm noticing that when I'm already feeling horrible any kind of movement I make bothers me. Just turning my head a tiny bit left or right (while laying down even)..Or turning to go down the hallway can totally throw me off and make me feel almost spinny for a second. Even just focusing my eyes on something makes me more dizzy. I was just trying to send a text to someone and just looking down to find the right buttons to press gives me that dizzy/spinny feeling. I was just wondering if anyone else gets like this? Does it sound like it could be just from POTS/dysautonomia?

I get the tiny sparkles when I look up at the sky or in a white room or something. Not the tv snow though. I have been diagnosed with migraines..So I'm guessing it might just be from that.

When I'm having a really bad time, I get that way a lot. It's so scary and frustrating at the same time. I think it might just be a blood pressure/heart rate thing because the one time I was in the ER, when I just sat up the smallest bit to try and get comfortable, their machines would start beeping a ton..That was one of my worst bouts but I definitely know what you mean.