Nikki

Thanks for all the responses. I think I will ask my doctor about this. I really don't want to resort to that..but I know until I get anyway better, I'm going to be stuck in the house if I don't have something to help get me around. In the winter, I honestly don't mind just being stuck inside..but when it's nice outside, I really do wish I could get out more. I guess we'll see what happens.

I'm guessing the virus along with everything else could be causing the weight loss. I know with POTS, when I'm going through a really rough time I always seem to lose a few pounds. Since being diagnosed I lost 11 or 12. In my case though, I'm dizzy all the time so I feel sick in my stomach more..and I don't really want to eat. Plus, everything I do is so difficult, my body just feels like it's doing a workout when I'm trying to do everyday things lol. I have no idea though..it's just my guess!

Since being diagnosed in October of 2009, my symptoms have seemed to gotten worse to the point that it's hard for me to go anywhere anymore because of how I feel. Even if I'm having a decent day, I feel okay to do things around the house but as far as going out anywhere, I still can't because everything involves a decent amount of walking - whch I'm not able to do lately..and I was just wondering if anyone has gotten a wheelchair because of POTS, and if so was it something you decided on your own or did a doctor recommend it?

I don't really know what to say that would be very helpful..but do you take any beta blockers normally to help slow your heart down? My only advice is just to take it easy and rest until you feel a bit better.

For me Florinf didn't work so well. I didn't have any infections or weight gain..but my blood pressure isn't just low - it also spikes too..and when I was on it, it made the spikes even worse for me. It would go as high as 160/120 and so I had to stop taking it completely. I can see where it would help someone with JUST low blood pressure..but if it fluctuates at all, just be careful with it.

I agree with what you're saying. I think being gone a lot for work and leaving to hang out with friends are two different things. He's actually going to be gone for three weeks in Singapore for work this fall - and that doesn't bother me a bit. I guess I just feel bad that the places I could go if I felt better (like with him to visit his family and friends or something) I can't..He's fine with it. I guess I'm just the only one thinking it's a bad thing lol. Like everything else in life though, I guess I just have to wait and see how things go. Hopefully I'll get better and be able to travel some more and this won't be an issue for me. Thanks for replying.

Alright, thanks for the replies guys. I do trust him, and I never complain about him going off and doing things. I guess I just worry that we'll always be doing seperate things all the time if I don't get better soon.. I'm sure everything will work out one way or another though. Thanks again!

I'm not sure if this is the right place to post this, so just correct me if it's not. My fiance and I have been together for over two and 1/2 years now and engaged for about 7 months. We were in a long distance relationship for a good bit of those two years and after college he got a job in my state, so now we only live an hour apart. The thing is, I know when we were just long distance he would come and see me one weekend out of the month (it was an 8 hour drive for him) and other weekends he'd be visiting his parents and hanging out with friends and things like that. Now, in the fall and winter months we saw each other every weekend. The other day we were talking and he mentioned that since the summer is approaching, he's going to be gone a lot more than he has been. I'm pretty sure he's going to be gone three or four weekends in a row to hang out with friends..So we probably won't be seeing each other all that often if that's the case. My question is..I'm feeling bad that I'm never feeling good enough to travel far at all, so I can't go with him..He's very understanding about what is going on with me and have gone to doctor appointments and trips to the ER with me..Heck, he moved all the way out here because he does care about me..but I sometimes wonder if we were married or living together and I still feel how I do most of the time, if I'd be stuck by myself..and when I'm feeling bad, I like someone with me. Sometimes I'm too dizzy to get things myself, or afraid to walk around and I like someone there in case something were to happen. It just makes me feel better. My family thinks if we were married, he should stay with me most of the time (I'm not saying he can't go see family and friends, but maybe to space it out some, or something) if I'm still not able to travel. I feel like holidays might be an issue too. I don't want to be too sick to travel with my fiance/husband, and just get left behind because his family lives in one state and mine in another..but at the same time..he shouldn't have to be 'stuck' at home with me just because I can't go, right? I'm just torn because I don't know what to think..Or exactly how relationships work when one person is sick. In my opinion, I wouldn't leave the other one behind if they're not well enough to go - but at the same time I wouldn't expect someone to just stay with me when they have other things going on. He's able to go, so why sit at home with me when I can't do a whole lot anyway..Ya know? I don't know..I guess I'm just looking for opinions if anyone else has ever been in this kind of situation. What are you supposed to do?

If I'm standing for awhile my legs will definitely start feeling achy..and on my really bad days I don't even have to be standing at all. They just feel so weak and it's painful at the same time..Very uncomfortable.

Alright, thanks for the replies!

I saw my cardiologist two days ago. He wants me to do a 24 hour urinalysis because I have high blood pressure spikes, and he said he'd like to check for a tumor that could be releasing adrenaline and causing the spikes. I'm guessing with this test, they could still find something else that's hopefully not as extreme as a tumor..but I'm just wondering if anyone on here ever went through the same thing, and if it was related to POTS at all. I've been reading up on different forms of POTS and I have so many symptoms of the hyperadrenergic form. If you do have a certain form of POTS, does that mean that there is hope for better treatment since you can kind of be more specific, or is it basically all the same? I hope I'm making sense with my questions..I'm sill kind of new to dealing with POTS and I'm just trying to find all the information I can on it.

I still have yet to watch the full episode. I'm surprised to hear of the mention though!

I haven't seen this before. I will have to check it out. Looks like an interesting blog!

Well, I'm pretty sure it's 'normal' for us. I was just curious if it happened to many others on here.

I get tremors when I'm going through bad fluctuations with my blood pressure. Usually if I start shaking, I know something is wrong..It takes an hour or so for it to pass.

I'm sure it could be. With me, I find that any other thing that is going on with me at all (a simple cold or infection) makes me feel ten times worse. I think we're a lot more sensitive to things like that. I hope you feel better soon though!

I'm guessing this is normal for someone with POTS, but lately whenever I sit up to fast, or am standing for any length of time I see tons of bright dots in my vision. As soon as I lay down they go away..so I'm assuming it's just a blood pressure thing. I'm just curious if others get this way too. It always used to happen to me if I got up too fast, but then would go away. The past week it seems like it will only go away if I lay down. So I'll be walking wherever in my house and then have to get down to the ground quickly or else I'd probably faint. I don't know why it's happening so much lately..Hopefully it's another thing that will just come and go?

Alright, thanks for all the responses. I think I'm going to bring it up with my cardiologist at my next appointment and see what he says just about it too. Thanks again!

I haven't even heard of this before. It looks interesting though! I wonder if it really works..

Okay, thanks for the replies. I'm guessing mine probably drops really low..but I don't know, for some reason I have a feeling mine goes super low and then shoots up because when I wake up feeling horrible I'll wake up and it will be like 130/97 or so..but it IS super low before bed..I don't know if something in me triggers it to shoot up when it goes too low or what..This is all so confusing lol.

The past week or so, I find myself waking up very very dizzy. I'm always dizzy to some extent, but this feels more like a spinny type feeling..and see spots and dots in my vision like crazy if I wake up during the night. It's almost as if I'm close to passing out..but I'm alseep. I took my blood pressure laying how I normally do at night, and it was 85/57..I'm just curious if anyone knows what a 'normal' blood pressure should be while sleeping? If mine is that low while I'm just laying there, I wonder how low it goes when I'm actually asleep..and am thinking that could be part of my problem.

Thanks for responding to both my posts, yesterday was the first for an all day bout of vertigo for me. It was something different from the symptoms I've been experiencing and it was a bit scary. Today I am still very dizzy but the intense vertigo has eased. Sorry to hear you are going through a rough time too and hope you are feeling better soon. Nikki

Yesterday when I woke up I felt like everything was spinny on me, even the slightest movement I made made it so much worse, was also diagnosed with migraines before my diagnosis of POTS but the vertigo was never that bad before so I was wondering if the intense vertigo could be a symptom of POTS?

As soon as I woke up this morning the room felt like it was spinning so I took my blood pressure and it was 136/97 and my heart rate was 119. I also felt very shaky and any head movement made the dizziness worse especially looking down and when I stand up almost immediately I feel like I am going to pass out. I took half of a 5 mg pindolol hoping it would lower my heart rate which it did, right now my blood pressure is 103/64 and 74 beats per minute but any movement is still making me extremely dizzy and still can not stand. I am waiting on a return call from my doctor but was wondering if any one else has experienced something like this. Any advice or input would be greatly appreciated. Thanks

I was diagnosed with POTS in October of 2009, so I was 21. When I was 12 years old, I passed out in school (only time I ever have too..so we didn't think anything of it since all the doctors said it could just be a one time thing) but I hit my head off the chalk board and a hard floor (it happened in the art room)..Ever since then I'd complain about seeing spots and dots, and being light headed but for the most part I could still do things I wanted to do. (I'd still go shopping, on long walks with my family..do crazy cardio workouts for about 40 minutes or so every night..things like that). I'd say in October of 2008 is when I started getting worse..I'd have less and less good days and started having almost constant dizziness to the point where it was hard for me to go places, and even just get around the house at times. In October of 2009 I had one of the worst weeks ever with my dizziness, feeling sick..and getting chest pains (which I never had before). I went to the ER and my heart rate and blood pressure was all over the place..I would just sit up a tiny bit and the machine would start beeping like crazy.. I had a tilt table scheduled so they just sent me home and told me to rest. When I had the tilt table, they told me it was POTS and said that'd it'd take a long time to figure out something that helps, and it definitely has been. I'm not sure when it started exactly. I thought it was when I hit my head, but my cardiologist thinks it happened from a virus around October of 2008..The only thing I can think of was that my fiance had pharyngitis (a bad case of it) and afterwards I did have a bad cough..but I don't know if it can be caused from something like that. I definitely had problems with dizziness, but it wasn't this bad until around then..So I'm starting to think it could've been from that.