Nikki

I'm not married, but my fiance is very understanding. I was diagnosed in October of 2009, and since then I've only been able to get out to his apartment for one weekend. He comes and stays with me at my parents house instead. They're fine with it since they know I haven't been able to go anywhere for quite awhile. Being in the car makes me a lot worse, so we haven't been on a typical date or anything like that for such a long time. He really is fine with it though. Sometimes I will hesitate to tell him how I'm feeling when he asks (he asks a lot lol) and I always wish I could tell him I'm feeling fine and we can go out and do something..but that isn't the case right now.

We've been together for over two years now, and a lot of it was spent long distance. He knew I had dizziness and stuff for quite awhile, so this wasn't exactly new to to him. I'm glad when it got worse he stuck by me through it all and still is. I feel extremely lucky to have him.

It took me a while to be 100% honest with him when my symptoms took a turn for the worst, but I figure it's best to be honest. I can't help or change how I feel, and he understands that.

I'm in the same position you are..My BP just changes drastically both high and low at times..So it's hard to treat. It was super low for awhile (around 80/50), so I took Florinef, but then I guess it went up on its own, so the Florinef made it even higher (like 140/120) even just laying down..So I had to stop it completely. I hope to hear more responses on here cause I'm curious myself.

Thanks for the reply. I do get migraines as well, so I'm thinking it might just be a combo..I used to be able to handle the vestibular migraines by themselves, but the POTS on top of it has just really slowed my life down.

I get them too. Usually I see spots or dots in my vision, that's almost a daily thing for me. A few times a year though, I get the really bad ones where I can't see anything but brightness for 15 minutes or so, the zig zag brightness then travels from one side of my vision to the other. It is really exhausting afterwards. I'll get extremly dizzy and sick in my stomach for a week or so afterwards. I haven't had any since being diagnosed with POTS..I don't even want to think of how that combination would be.. :-/ I hope you feel better soon though!

I was diagnosed with POTS in October of 2009. Since then, I probably had 2 full weeks (spread out - usually it was a few good days here and there) where I felt good enough to go out and do something. My main symptom is dizziness. It's pretty much constant every single day..I just feel so spacey and like I'm on a boat. I do try to get up and move around when I'm feeling a bit better, but when I'm so so dizzy, it's hard for me to just get from room to room let alone push myself to do more...I spend a lot of the day laying down, and even when I'm doing that I still feel like I'm on a boat. Of course it's a lot better than when I'm walking, but it never goes completely away. I'm just wondering if anyone else is/was this bad? If so, did it ever go away? I heard some people are worse their first year or so after being diagnosed..then it might get better. It's just so frustrating when I feel horrible for almost a constant 5 months now and I have no idea what to do.

Right now I'm only taking a beta blocker (Pindolol) - which has slowed my heart down to a normal rate. I've only tried that and Florinef so far. The Florinef seemed to make my BP spike too much..I am going to see the cardiologist who diagnosed me at the beginning of May, but I was just looking for some input on here to see if anyone is, or ever was, in the same position I'm in now.

The same thing was happening to me awhile ago. My blood pressure was too low, so my doctor put me on Florinef to help raise it. After two months, nothing changed so he told me to up the dose. In the 3rd month, I had high BP spikes (like 140/125)..it would happen out of nowhere and I'd still feel like I was about to pass out just as much as I do when it drops. I would get shaky, and my chest felt tight while this was going on. My muscles hurt so bad afterwards just from quivering so much..I still haven't found anything that helps me yet..I think it's just too all over the place to control to be honest..I called the doctor when this was going on, and they said if my blood pressure were to stay that high for hours, to go to the hospital..They didn't really too concerned or surprised that it happens. They told me this kind of thing is normal with POTS. I wish there was something to help us out though! I know how frustrating it can be..

I live in PA, and we're supposed to get a lot of rain tomorrow. Today my head has felt so bad all day long..I'm extremely dizzy and have so much head pressure. I haven't kept track of the barometric pressure..but whenever we're supposed to be getting rain, I seem to get a lot worse.

Well, with the waves of weakness I can definitely relate. It seems to happen out of nowhere for me. Like I'll be getting dressed, or just walking around the house and I'll get so sleepy and my arms and legs just feel so heavy all of a sudden. Once I actually do give in and just lay down it feels like my body just got such a relief!

I do get the hot and cold changes often too. Sometimes I'll have the chills, and other times I feel like I have a fever because I feel so hot. They don't last long for me though.

Today is a bad day for me..My dizziness is really bad, and it got me thinking. What is enough to make someone with POTS go to the hospital? I've had really bad days before, and I always just wait them out and eventually it gets a little better. The only time I went to the ER was before I was diagnosed. I felt horrible, was super dizzy..and I couldn't eat anything for a few days. They saw my blood pressure and heart rate was all over the place, gave me fluids (even though they said I wasn't dehydrated) and told me to rest and 'try not to fall'. They knew I had the tilt table coming up, so maybe they were just thinking that doctor could deal with me in a week or two.

After I was diagnosed, there was a point when my blood pressure would spike in the 140/120 ranges, and the nurses at the office of the cardiologist I go to said if it were to stay that way for an hour, or a few hours then go over the hospital. It doesn't really seem like any symptoms are a major concern for people..and I'm just wondering, if you go to the ER..What can they do to help you besides give you fluids? Is there anything?

Even though I've seen tons and tons of doctors over the years, I try to avoid going to them unless I really have to..I feel the same about hospitals, if not stronger lol. Unless I faint (which has never happened so far, thankfully) or my heart feels like it's going crazy, I probably wouldn't go..

I guess my question is..when do you think it's time to get things checked out when you already know what's wrong?

Wow, I didn't expect it to be so common to be honest! I'm glad I'm not the only one though..I looked up myoclonic seizures and it sounds a lot like what happens to me. I didn't know it had a name. Thanks for all the responses.

This has always happened to me off and on..but more often recently. I can be sitting or laying completely still and I'll just feel a weird kind of jolt like feeling go through me. Sometimes I get really dizzy for a few seconds when it happens, but then it goes away. I literally jump when it happens. (Like when you're watching a movie and something scares you that you're not expecting? A 'jump' like that). It's really strange and hard to explain..I'm just wondering if this happens to anyone, or if anyone knows what I'm talking about. If so, does anyone know why this happens?

My pretty much constant symptom is dizziness. I'm usually lightheaded to some extent..Today is one of those days. My BP was a bit on the low side earlier, but now it's fine (109/77)..but I'm still pretty lightheaded, extremely tired and feel super weak. I did have a bad migraine last night, so I'm thinking that could be causing some of my problems today..but I'm just wondering do you still experience symptoms when your blood pressure is normal?

Well, I was taking a quarter of a 5mg beta blocker - Pindolol. Today I took a half of it though cause my BP is running higher lately, so I figured it wouldn't hurt since my heart was going crazy earlier.

Last night I woke up at about 2:00 to go to the bathroom. As I walked over I felt my heart rate going super fast..I got back to bed once I was done and once I laid down, it seemed to slow down, and I just fell back asleep. I woke up for the day around 7:00 and again, I felt my heart racing. So I sat up and took my BP and it was like 135/90, 112 beats. When I laid down it was like 128/80, 105 beats. Now, I guess that's not TOO high, but I know when I was up and walking around it had to be pretty high..I never felt it it just in my chest beating like that before. (Hopefully not TMI - but it's also 'that time of the month' so I'm thinking maybe that is throwing my body off some?) Has this ever happened to anyone? I'm guessing it's 'normal' for us, but I'm just looking for some reassurance, I suppose.

My blood pressure goes all over the place..It doesn't seem to matter what I'm doing. I think I just get days when it's low, and days when it's higher. Just last week my BP was low one day (like 85/53), I turned over to my other side and it shot up to 120/90. I don't really understand it to be honest. When I was taking Florinef, my spikes would be super high (like 140/120 - that's while I was just laying down) so I had to stop taking it. A normal blood pressure for me is usually 110/70-ish. There are times when the bottom number is 80 or 90, which is high for me..but my guess is if our autonomic nervous system is messed up, it can probably fluctuate either way. I'd definitely see what your doctor has to say about it though.

My blood pressure is pretty much all over the place..On my good days it stays within normal ranges when I change from sitting to standing. When I'm having a bad day, it can either drop when I stand OR go up.

I take Pindolol to slow down my heart. I have vestibular/basilar type migraines and it doesn't seem like it increased my migraines at all since taking it.

I get the same way. Laughing too much makes me dizzy..Even a sneeze will do it! When I'm at my worse, talking will make it worse too.

The cardiologist that diagnosed me recommended I get an Omron brand one that has the arm cuff. We had a cheap wrist one before, and when I said it was a wrist one he shook his head and said it should be an arm one. This is the one I have. http://www.amazon.com/Omron-HEM-780-HEM-78...e/dp/B0009XQUES It works good.

I get the same way. If I'm online too long, I start getting lightheaded and my head just feels weird..Almost like it's hard for me to focus and feel normal. When I'm already having a hard time with dizziness, even replying to a text is hard. I'm not sure what causes it exactly because sometimes it doesn't bother me at all and other times I can't even be on for 10 minutes. Along with POTS, I've also been diagnosed with vestibular/basilar type migraines. So I think it might just be a combination of those.

I'm sorry to hear you and your daughter are going through this. I'm sure it must be very tough on both of you. You just have to stay positive and strong for her. My dizziness started years ago (when I was about 13 - I'm 21 now) and my mom pulled me out and home schooled me in my 8th grade yet because it was just too much for me to try and keep up with with how I felt. At times I do think I might have missed out on different things, but at the same time a lot of great things that I wouldn't trade for anything happened to me along the way that I might have missed out on if my health, and life were different. I'm sure your daughter will have struggles in high school but as long as she has good support around her, I'm sure she'll be fine.

Mine seems to fluctuate a lot. The last two days for me have been pretty good and my BP seems normal (for me). Around 110/70 is normal for me. Sunday night though, I got very dizzy out of nowhere..I was lightheaded all day with my blood pressure on the low side while laying down (85/53) when I got the bad dizzy spell, I took my blood pressure and it was 130/91 (all I did at that point was just roll over to my other side while laying). It just shoots up out of nowhere at times..I was on Florinef, but had to stop taking it. While I was on that I got crazy spikes (150/126) so yeah..I figured when I stopped taking it, my normal spikes wouldn't be going THAT high anymore. It just changes a ton. From what I read though, I guess it's 'normal' for us dealing with POTS.

I saw this last night. I honestly don't know what to think, if Dysautonomia was the cause of her death or not. I'm glad to see her brother talking about his experiences with it though. Hopefully it will raise more awareness.

I haven't tried any antidepressants, or Midodrine. I started both of the medications I'm on now at once, then stopped the Florinef, just took the beta blocker alone..and now I had to add it back in (only a lower dose) because my BP was going to low. I did call my cardiologist on Monday to see what they say and they have yet to get back to me. About the compression stockings, I have been trying them. Only the ones that go up to the thigh, and the lowest compression. I did some reading on that and also asked the nurse to ask the doctor if I could go up in those. I think I might get the ones that go to my waist next time though, the thigh ones just don't seem to stay up where they're supposed to.

Thanks again for the responses!

Yeah, I've had everything with my ears checked. They were thinking it could be something like that before. I had lots of basic hearing tests, caloric testing, ECOG testing, VEMP testing..and a CT scan because he thought there might be a hole in my ear or something..Everything came back normal. I think I'm just a big mystery to most doctors..lol.