Nikki

Hm alright. I'm going to check into some easier stuff to start with, at least for now..and just try not to overdo it. I guess I have to figure out how much is too much and I'll probably have these bad times happen again in the process of trying to figure out my limit lol. Thanks for the responses though.

I read a lot of stuff online about dysautonomia and exercise. Lots of people say when they stay active and exercise regularly, they feel a bit better. With me I always seem to feel a lot worse a few days later. Now, I have a lot of bad days..More bad than good - so I don't know if it's just my normal bad symptoms coming back or if exercise brought it on. Just last week, I was feeling a bit better so I did some cardio, salsa 20 minute dance video. The next day I just did exercises on my own, especially squats and stuff to try and build my leg muscles more. On the 3rd day I still did some exercise but towards the end of the day I was starting to feel funny. I can kind of tell when my symptoms are starting to come back after having a few days of feeling good. So far this week I've just felt so horrible..Very dizzy and vertigo-ish from time to time and just plain exhausted. Does anyone get like this after they exercise or could it just be my normally dizziness and such coming back? :-/ On my good days people tell me to just do other things I want to do and not worry about exercise since it always seems to do me in anyway..But I used to LOVE working out years ago. I usually did cardio for an hour every single day, sometimes more..I feel bad about laying around most of the time but I'm really too dizzy to do much of anything..and I'm just trying to figure out when I should just keep pushing or when my body really does need rest. Any advice would be greatly appreciated.

My family doctor and neurologist both think it would be a good idea for me to try Midodrine. I was wondering what other experiences people had taking this. I'm just a little nervous about it because along with having low blood pressure, I also get spikes in it. The family doctor said that could happen on it. I'm still willing to give it a shot since they seem to think it's worth a try, I just don't want to make anything worse..

I have the same problem. Some days are worse than others but my legs definitely feel very weak most days - especially compared to how I was before all this started. I used to do a lot of cardio workouts and kickboxing type of stuff..Tons of lunges and squats and never had a problem. Now sometimes just walking to do everyday things makes them ache. I find that wearing compression stockings really help though. My legs feel a lot stronger when I wear them. Have you ever tried them out?

I don't know if this is related to dysautonomia or what..But it has been happening to me for awhile and I wondered if anyone else experiences this. I've noticed lately that sometimes I'll wake up and feel fine..Then I'll decide to sleep a little longer and I'll wake up again, and feel so dizzy and kind of spinny. There's no real pattern to it, and the times can be different but I just don't understand it. Today for example, I woke up at 6:00. I felt pretty good. I was still tired though, so I fell back asleep until going for 9:00. When I woke up then I was so so dizzy. I was thinking to myself I should've just stayed awake earlier and maybe I'd still be feeling okay. This happens fairly often to me and I was just curious if anyone else knows what I'm talking about and if so, is there a reason this would happen?

I get these a couple times a year too. For me, I know artificial sweeteners are a trigger for sure so I completely avoid them. For me my vision gets all weird and kind of warped out of nowhere..Like if I'm reading, the words just seem to start running together or something. Shortly after I'll see a tiny bright speck in my vision that quickly turns into bright zig zag lines flashing on one side of my vision and slowly travels to the other side within 35/40 minutes. It was really scary at first but now I just kind of lay down and cover my face with a pillow or something to block out the light. I think it goes away a lot quicker that way. Afterwards I have bad headache and feel dizzy (more than normal lol) and sick in my stomach. Not fun at all..

My appetite has changed a little bit..Only because I'm almost always dizzy and sometimes that causes me to feel sick in my stomach, so I don't feel like eating as much. I lost like, 15 pounds when I was first diagnosed, but I think the last 5 of those fluctuate when I'm feeling better, and I lose it again when I'm going through a rough patch.

This past week I went to an eye specialist (after seeing my regular eye doctor, things didn't look 'right' so he sent me to him). He said that I have optic neuritis in my left eye, optic nerve swelling in both eyes but the left is worse (my vision as been messing up in that eye more lately, kind of like a funhouse mirror-look to things). He asked me if any doctors mentioned it and in the past two others have, but I was never really tested for it. He kept talking about MS but said he said it could be anything and he can't say because he's not a neurologist. I thought we could finally be on the right track to finding out what else is going on with me. Problem is, I saw a new neurologist today and he's pretty much chalking it up to anxiety. I've heard it from so many other doctors over the past 10 years that I was already irritated and frustrated 5 minutes into the appointment. I told him my heart rate and blood pressure are all over the place no matter what I do, he pulled a confused face. I said that the eye doctor said I had optic neuritis, he pulled a face..He had me lay down for a bit and took my blood pressure and it was 140/100 laying and kept rising when I sat up and stood..and he seemed to take me more serious after that but still said that sometimes we're anxious and don't know what's causing it until we take a deeper look at our lives and see what's going on..yet, he said I don't look like an anxious person..so he needs to take some time 'scratch his head' and get back to me, basically. He was pretty much questioning everything past doctors have said and questioning me..Asking me what I do all day and when I said I can't really do a whole lot cause of how I feel, he didn't seem happy about it. He asked if I'm working, I said no to which he responded with, 'why not?' It's like are you kidding me? I would think doctors would have a more of an..understanding personality about them to know how much things effect people and their daily lives. Instead I get treated like I'm crazy person who doesn't want to do normal things. I explained how I used to do tons of things (and listed them off), but I just can't with how I feel. Whenever I said how dizzy I am, he'd just say 'but you never faint, right?' and I said no..and he must have said, 'but you never faint' 5 times likes he's trying to get it into my head. I'm aware I don't faint but feeling so dizzy that I'm walking like a drunk person half the time doesn't make it any easier to deal with.. So I have no follow up appointments scheduled with him..He wants to talk to my family doctor first. I do get an MRI tomorrow..and now I don't know who to send the results to. This is the third neurologist I've seen who hasn't taken me seriously. I feel like I might as well settle with a lousy one in my town instead wasting an hour and a half car ride each way to someone is going to treat me just as bad. What do you tell doctors who think it's all in your head, basically? Is there anything that will get through to them? I just feel so hopeless trying to get things figured out..

My main symptom with POTS is dizzines..and it seems whenever I have an infection or something going on, it makes it 10 times worse. I take baths as well, but I no longer use any bath salts or anything like that (I used to when I first switched from a shower to a bath) but I got a UTI and was in the ER and felt terrible..so I avoid all that anymore. The last time I was in the ER was for a UTI & bladder infection as well..They're horrible but it's good that you're feeling a bit better now. Hopefully it continues!

The bottom of my legs and my feet can get freezing cold at random times. I'm not sure why it happens exactly, but it definitely does lol.

I posted a topic about this today (and saw your reply, so I thought I'd check out your post!). My vision is the same way the past few days..I went to the eye doctor today. He just squeezed me in (I have a full exam scheduled for next week) but he seems to think this is a busted blood vessel and that it will clear up and go away on its own. So I'm guessing it's that, or a migraine. I do get ocular migraines, and I've had distorted vision before, but it never stuck around this long..so I don't know. I'm just hoping it goes away on its own. I never really get headaches either, but there are all different kinds of migraines, so this could just be one of them. I hope you feel better soon!

For the last week, I noticed that in my left eye, there seems to be a bright speck in the side of my vision. When I cover my right eye and just use my left, in my peripheral vision everything looks distorted and blurry. Kind of how a migraine aura would be but this seems to be sticking around. I have both a doctor appointment and neurologist scheduled for next month so I plan on bringing it up then..but I was just wondering if anyone ever had this happen and if it just went away on its own.

I think the beta blocker could still be in your system. Have you talked to your doctor about it? I hope you start feeling better soon. Good luck with the Florinef. Be careful though, for me it gave me very high spikes in my blood pressure. Which makes you feel just as bad as if it were low lol. I hope it works for you though!

Do you wear any compression stockings? Sometimes those can help. I have waist high ones and I like them much better because the thigh high ones just do not stay up for me and it gets uncomfortable under jeans and stuff when you can't really adjust them lol. I know when I'm sitting or standing certain days my feet will get bright red in a matter of minutes. The stockings definitely help with that.

Well, I just try and look at it like there are side effects for everything..and everyone is different. So you really never know how something is going to react until you give it a try yourself. I was on it for about 3 months and I had really high blood pressure spikes with it (like, 175/143 while just laying down) which makes you feel just as bad as when it's low. My BP fluctuates a ton, and gets high even now..but definitely not as high as when I was on that. I hope it works out for you though just keep an eye on things with it.

I honestly thought the same thing with myself lately. I'm going through a really rough time right now..and both times I've felt like this I went to the ER and it turns out it was just my normal POTS symptoms along with a UTI/bladder infection. I took the antibiotics and within the week I was feeling really good. I took one of those at home tests to check for a UTI and supposedly I don't have one now. I do think I have a head cold or something though that is making me worse. I don't know what it is but I think antibiotics help too!

Anxiety..Stress..Allergies. Nothing serious, but I had no idea what was going through the doctors heads when that's what they came up with when I described my symptoms lol.

Well, I know when I get stressed out or upset about something, I definitely feel 10 times worse than I normally do. That's not necessarily trauma, but I can definitely see where it would happen.

No, I'm not taking any Midodrine. The only thing I'm on right now is a low dose of Pindolol to slow my heart rate (which actually does help most of the days). I had to do a 24 hour urinalysis to see if it was anything adrenal related. The doctor said there could be something firing off adrenaline causing my random spikes..which made perfect sense, but things came back normal. I just don't know what to think anymore. When the doctor explains something to me that would make perfect sense considering my symptoms, it always comes back that everything is fine. Don't get me wrong, I don't *want* something to be wrong..but when I know something is, I wish I could just figure it out already. Oh well, thanks for the responses though!

Within the past few months, I've been getting blood pressure spikes here and there. A lot of times I'll even be laying down while it happens..but if not, I just feel very dizzy and disoriented out of nowhere. I'll usually tell my mom about it, she'll get the blood pressure machine and I'll just go lay down or stay laying if I already am. This happened a few days ago..I was laying in bed and I told my mom it feels like a spike or something. We checked my blood pressure and it was 148/106. After laying for half hour, it started to go down. I eventually got up to go to the bathroom quick, took my blood pressure when I came back over to my bedroom and my blood pressure was 99/83. While this goes on, I almost always feel chest pressure (where if I take a deep breath in, it makes me so much more dizzy). I also feel very shaky and you can physically see me shaking a bit. Before the other day, it hadn't happen for a month or two and I'm not sure what brought it on..but I realize that out of all the times it's happen, it's always been around 6:00 at night. Sometimes a little before, sometimes a little after..but it's always around then. Never in the mornings or the afternoon. I think I asked about blood pressure spikes before, but does it make sense that it's usually always in the evenings? All my symptoms are totally unpredictable..but I was thinking about it and that one really isn't. It seems like if it's going to happen, it'll be around that time. Does anyone else experience this?

Well, I can't exercise that often..When I do it's usually only for 15 minutes or so, but my blood pressure seems to go a tiny bit higher, along with my heart rate. Nothing major though. Which surprises me..Doing normal things most days makes both things go crazy. When I exercise, it stays within normal ranges lol.

I feel the same exact way.

Well, I have been diagnosed with migraines (before the POTS) and they seemed to think that all my dizziness was from that. I never get headaches, but I do have the vestibular/basilar migraines. My dizziness is more of an oxygen deprived feeling, I would say..cause when I sneeze/cough/laugh too much it definitely gets worse..I do have the occasionally spinny feeling but it's mostly just plain dizziness. I guess it's hard to tell what is coming from what lol. I have had my ears checked very well. Had TONS of tests done with that, so anything ear related is pretty much ruled out now. I'm going to make an appointment with a new neurologist and see if they can help me at all. Thanks for the replies.

Right now I'm just taking a small dose of Pindolol to slow down my heart, which seems to help most of the time. I was taking Florinef, but along with my blood pressure being low I also get spikes..and while I was on Florinef, the spikes were way too high so my cardiologist didn't want me to take it anymore.. I'm really hoping it just gets better with time.

I was just wondering if anyone on here has chronic dizziness with their POTS. I hit my head years ago..and I was always a little light headed from time to time but it was never as bad as it is now. I would say since October of 2009 (when I went to the ER cause I was super dizzy..) my heart rate and BP were all over the place..Later in the month I was diagnosed. My cardiologist seems to think that my dizziness is a mix of POTS and something else going on from when I hit my head. It was much more manageable before..Now I hardly ever get out because even a car ride makes me feel horrible. Another thing is, the doctor said the POTS symptoms should go away when I lay down..but when I lay down my heart rate and blood pressure are STILL all over the place..so in my mind, it makes sense for me to be dizzy all the time because my body is always out of whack.. I was just wondering if anyone has gone through the same thing and did it get better? I know some people say symptoms could go away (or at least ease up) after a year or two..and it hasn't even been a year for me yet and I'm just worried it will never go away..