Nikki

Ah, I'm so sorry to post that so many times. I didn't think it went through and I can't figure out how to delete it.

With me the dizziness feels like a very lightheaded feeling. I keep describing it to people that it feels like I'm on a boat. If I'm up to long, I start to get a disconnected feeling like I'll faint if I don't lay down. The 'boat' feeling is usually always there though, no matter what position I'm in. Just now my BP was 103/69 (and 81 bpm) while laying, 97/79 (and 109 bmp) while standing. Earlier today though, my blood pressure was 88/57 while laying..I don't remember what my heart rate was with that. It seems like my blood pressure runs on the low side most of the time, but I don't know if that's the problem, or it fluctuating so much is. Yes, I've been downing fluids. I drink about 96 oz daily. I have a 32 oz. bottle of Powerade and I just refill those bottles with water and usually drink two of those, which is another 32 oz each. So I'm definitely staying hydrated lol. I also make sure to get enough salt. I usually don't have any other symptoms. At times I will feel shortness of breath..but I could deal with that if I could only find something to make this dizziness go away.

The past two weeks have been really rough for me. I have almost constant dizziness and it will just not ease up. I have to spend most of my time laying down just to feel decent (even then I'm still a bit dizzy!) but this has me wondering..I was diagnosed in October of 2009. I had the tilt table test done and have taken a beta blocker and florinef since..but nothing seems to have changed. I'm still lightheaded everyday to some extent, and still have these really bad times where I feel like this medication hasn't helped at all, and isn't going to.. So I guess my question, or questions, are - has anyone ever had such horrible dizziness for weeks on end? Even months at times, without much break? If I do feel better, it's for a day or two and then back to being *really* bad again..Also, what happens typically when you're diagnosed? Do you just try different medications until something helps? Are there more tests that doctors usually want to have done? I really want to feel better and not so dizzy all the time..and I'm fine with trying medications, but when they don't help I just feel like I'm wasting time, and that there has to be more I could be doing to get better..My doctor basically said to try these and come back in 6 months. I called today saying nothing has helped so far..but I'm just wondering if it's just a long process of trial and error with medications until something works for everyone. Any advice is greatly appreciated!

My BP is all over the place too. About a month ago I kept getting spikes (my highest, while laying was 147/120), now lately it's on the lower side (80/56 while laying). I would definitely ask your doctor about it though. I'm not sure what causes these changes.

I never tried that. What symptoms does it help with?

I've been dealing with lightheadedness for a long time now. I had passed out and hit my head off a hard floor when I was younger, and since then I was always a little off..Since I got POTS, the dizziness that comes with that on top of the dizziness I already had is just so hard to deal with at times. It might take a long time, but eventually it always seems to pass so that I can have some good days. I guess just keep drinking tons of water and doing what you're already doing. Hopefully you feel better!

Thanks for all the responses everyone. It's really uplifting.

Today is a pretty bad day with the dizziness..it has been for the last two weeks or so. I decided to take my blood pressure while sitting and standing since I hadn't for awhile. While sitting it was 96/66. When I stood up, it shot up to 120/107. I stopped taking Florinef because I thought that was causing my spikes (they were worse before)..right now I'm just on 5mg of pindolol (beta blocker)..and I thought if anything my BP would be lower. Does this make any sense? Is there any reason for the bottom number to change so much just by standing?

I was diagnosed in October of 2009, since October of 2008 I have seemed to have slowly gotten worse. Lately it's been the worst I've ever felt..I haven't tried many medications or anything so far..but I've talked to a few people dealing with POTS and they said when they were first diagnosed they couldn't even get out of bed. They couldn't stand up without blacking out..and years later they're able to do so much more than they thought possible and they aren't on any medications. I guess I'm having a bad day and am trying to think positive and be hopeful that things won't always be like this..so I was just wondering if this is a common thing to happen, or if has happened to anyone on here?

I was taking it for 3 months. I've been off of it for about 3 weeks now. Thanks for the response!

I'm doing some research..Trying to find things that might help me get better. My main symptom is dizziness and years ago when I went to a neurologist (also diagnosed with migraines) he said that I should take magnesium supplements, that it might help some. I've read that it can support a healthy nervous system..So, starting today I'm going to be taking one of those (250mg)..I'm just curious if anyone has taken any natural supplements and noticed improvements in their symptoms. If so, which ones helped with what?

I was taking Florinef for about 3 months. A few weeks ago, I kept having blood pressure spikes. Normally my BP is low, but out of nowhere it would shoot up to like, 140/124. The doctor told me to stop taking it. My blood pressure doesn't go that high anymore, but at times it goes up to like 120/90 (when normally it's 100/75 or or something..but I'm still feeling dizzy and lightheaded. I was taking half a beta blocker, but my heart felt like it was racing (especially in the mornings) so I'm taking a whole one. If anything, I would think my BP would drop (I was on a whole one before and it went too low, so I had to go down to the half...but now it seems to be staying higher so it seems okay to take a whole one). So I'm just wondering, could the Florinef still be in my system keeping it a bit higher than normal, or is it probably just my body acting weird?

For the past few days I feel very short of breath, almost like a tightness in my chest..I'm very dizzy too (Hopefully not TMI but it is 'that time of the month' and my symptoms always get a LOT worse around this time). The breathing thing kind of freaks me out though. It feels like I can't get a full breath at times, or like I have to force a yawn in order to breathe comfortably. This comes and goes..but at times it get so bad where I literally just have to lay down..even if I sit up, my chest feels like it's getting tighter. I'm hoping it's just a bad time and it will pass soon..but I'm just curious if anyone else gets like this too.

Yup, it happens to me too. I went to go see Quantum of Solace (that James Bond movie) with my fiance when it first came out in theaters and I felt horrible the entire time..There was WAY too much stuff going on for my brain to keep up! I also kind of get that same feeling when they do like an aerial shots in movies. I don't know if that part is weird or if that happens to other people too..It definitely gets frustrating though!

I've recently had spikes (I even posted on here cause I had no idea what to think!) but I had to stop taking Florinef because it never happened before that. Since About 4 days after I stopped taking it, the spikes stopped happening. Maybe it's because of something like that with you..Definitely check with your doctor.

I've noticed whenever I lay on my side, my blood pressure drops. My feet and head are pretty much at the same height..Me turning is the only difference. For example, when I'm laying on my back my BP could be 113/75. When I lay on my side it goes to 88/58. Does this make any sense? Is there a reason for this?

Thanks for all the responses. I've have three of these episodes in the last four days so I'm pretty much exhausted right now. Yesterday was the worst, my BP had gone up to 176/124. It's hard to recover from this happening once, let alone multiple times. I called the doctor on Tuesday, and they never got back to me.. I've been on florinef for about 3 months now..I was taking .1mg a day, then .2 because the .1 didn't seem to help. I'm thinking maybe it just didn't kick in until now, and maybe .2 is too much..So instead of waiting for the doctor to call back I just am only going to take .1 a day again..I never had these bad ones before so I'm thinking maybe it's because of that. Hopefully I'll hear from the doctor today and get some answers from him.

The other day, I wasn't feeling that great so I decided to take my blood pressure laying, sitting, and standing. I probably should have realized that I shouldn't have stood up but I was curious, so I did it anyway. Once I was standing I felt like I was going to pass out so I quickly laid down on my led. Even when I was laying down though, that feeling didn't go away. I just felt on the verge of passing out. I keep describing it as a dream like feeling, and I felt very warm (even my tongue felt warm or numb, or something!) My blood pressure was 140/108 (when normally it's low) I basically had to lay with my feet up against the wall in order for that feeling to go away. I tried sitting up, and that same feeling came back. Eventually, I was able to sit up without it happening but it took awhile. This never happened so bad to me before like that. Afterwards, I was very shaky and had shortness of breath. I've just been laying around all day yesterday (this happened Tuesday night). My blood pressure is still on the high side, but not as bad as that night. Laying all the time seems to have helped some. I'm just lightheaded..and wobbly when I'm walking around. Has anyone had this happen to them? If so, is there a reason..Does something trigger these kinds of episodes? Does this kind of thing just come and go with POTS?

Thanks for the response. Yes, I've been seen by two ENGs. One in my area, and one in Harrisburg who sent me to a cardiologist once everything checked out okay. Between the two I've had a lot of things checked with my ears. The VNG testing, tracking test, VEMP testing, and a CT scan of my inner ear. Like most all tests I've had done, everything came back within normal ranges.

My symptoms seem to come and go. Lately they're pretty bad..but they were like this about 2 months ago for about a month straight. Then I was good for a few weeks and was able to go here and there and do what I wanted. Now it's back to the bad days for now. So it really seems to come and go a lot with me. I've only tried two medications so far (Pindolol and FlorineF) and they haven't helped. I plan on calling the doctor today to say nothing has changed, so I'm hoping eventually something will work to make my good days more consistent.

After reading, I always felt a little dizzy once I looked up from the book..Or even just reading too long. Yesterday I was writing a letter to a friend and the same thing happened. I get super dizzy, and it throws me off for a few hours. I don't know if this is POTS related or not..I read somewhere with POTS, that any kind of focusing for too long can cause this to happen. I'm probably due for another eye exam soon. The last time I was there, the eye doctor said the muscles in my eyes don't focus how they should, fast enough to adjust to eye movement. My mom was thinking of this the other day, that maybe the two are connected in someway. Would that make sense?

I felt the same way before I was diagnosed, actually. I have my periods of ups and downs..and whenever I wasn't feeling good, I didn't feel good enough to go anywhere..Doctor or not. When I was feeling better I didn't want to go because I didn't want to use up my good days at the doctor/hospital, doing things that I know would make me feel horrible again. I really think you should have the testing done though if your doctor seems to think it could help you even more in the long run. Maybe your tests won't go as bad since you're already feeling pretty good to start off. You have to do what you feel is best for you though. I wish you the best either way.

Thanks for all the replies guys. I was just curious.. I have a good support system around me who are always there to cheer me up if I start feeling sad or upset about things. For the most part, I am pretty positive. Even though this is a struggle, I know it also could be so much worse. I'm super thankful for everything I do have and am able to do.

My cardiologist said the same thing to me..That I should feel better when I lay down because there is no gravity for my body to be fighting against, basically. That's not the case for me. My main symptom is dizziness..and while it does ease up some when I lay down, it doesn't go completely away. I hope you feel better soon though!

Wow, that's how I am on docks too. I always get really dizzy at the lake while I was on one because like you said, I guess my brain feels like I should be moving too! Not a fun feeling lol.