Nikki

The Spoon Theory makes perfect sense. I'm sure a lot of us can relate! Thanks for posting this.

About two months ago, I went through a really rough time. I was very dizzy and couldn't do much of anything. After about a month, I felt a little bit better. I still struggled from time to time, but I pushed myself to go out and see family, and get out of the house. I had a pretty good month. Even if I didn't feel good enough to go anywhere in the car, I was still able to do things around the house without a problem so I was content. For the past week and 1/2, it's back to being super dizzy and having a hard time just getting around the house. I just keep telling myself this will pass again..It's just a bad time. I find myself talking about stuff I did when I had my good run those weeks to keep myself happy, and I keep telling myself that I'll be able to do that stuff again soon. Sometimes I just feel like this is never going to end. I'm going to feel how horrible I feel today, forever..but I know that's not true. I just have to get used to the ups and downs of dealing with this. So my question is, what does everyone do to keep themselves strong until they get to their 'better' days again? How do you all keep yourselves thinking positive when you're going through a really rough time?

Does anyone else here have this? Some days it's hard for me to just turn my head without becoming super dizzy. Or bending over to pick something up? I need a few seconds to adjust once I stand upright again. I find little things too, like a scroll of text going across the bottom of the tv screen can make my head feel so floaty. I also get migraines, so I don't know if this is only from that, or if POTS can do this to people as well.

Hm..I've been diagnosed with migraines as well. I tried Topamax but that didn't help me at all. I hit my head years ago..and my cardiologist thinks that the dizziness I'm experiencing now (what has been really bad in the last year) is from POTS. Before that was probably mirgaines, or from hitting my head. I used to complain so much before about being lightheaded, but I could still do a lot of what I wanted to do. If only I could find something to help the dizziness from POTS, I know I could deal with the lightheadedness I used to experience before the POTS. Well, thanks for all the responses guys.

Brenda, The dizziness decreases a little bit while I'm laying down. It doesn't go away completely though. I'm sorry to hear how bad your daughter is. I can definitely relate. I can't really do a whole lot lately..Some days are better than others but for the most part I have to be sitting or laying down. I've always had lightheadedness, but this past year it has just gotten worse. I hope it is just a bad time for me and will get better..I hope your daughter gets better as well.

I was experiencing symptoms for about a year I was diagnosed, but have only been getting treated for it since October of 2009. I've been drinking tons of water, Gatorade, and Powerade and will continue to do so.

This is a really great post.

I'm not sure where to post this exactly..I don't think it belongs in the chit chat forum because it has to do with dysautonomia. I've been with a guy for over 2 years now. We met online years ago, decided to meet in person about 3 and 1/2 years ago. Things worked out with us and he drove to visit me every month (we lived 8 hours apart) since. In October of last year he found a job in my state, moved an hour away from me and now we see each other all the time. He proposed to me on our 2 year anniversary (November 19th). We don't have a date set or anything like that yet, but we have talked about it now and then since. Now, here is my problem (?)..I was just diagnosed with POTS in October..I've been dealing with dizziness for a long time, but within the last year it's gotten worse. Almost constant. I know he loves me and cares about me..I guess I'm just nervous about living together and taking such a huge step when I'm used to pretty much spending a lot of my days laying around at home (my parents house) and my mom helping me out with whatever I need, whenever I'm having a bad day (which is a good bit of the time). Another big (the biggest) concern and why I'm so hesitant is because I don't have a job..It would be impossible for me to work right now, and I have no idea when that will change. He told me I don't have to worry about that..but I always thought before you start a life with someone else, you should be able to take care of yourself..and dealing with POTS has made that quite a struggle for me. He told me that we shouldn't put everything on hold because of my health because I might always have to deal with this, which is true.. I just honestly feel useless and worthless half the time since I can't do a whole lot..and if I was living with him, I feel like I wouldn't be pulling my weight in the relationship since there isn't much I can do. He's been super understanding and supportive of everything going on with me. He's gone with me to doctor appointments and seen me at my worst in the hospital..I'm not afraid of him changing his mind about me or whatnot anymore, I think it's just a me thing that I need to get over. How does everyone else do it? If you live with someone, or are married..and can't really do a whole lot - how did you become okay with that? I'm always one for telling people they should do what they can do, and not feel bad about it because they're doing their very best..and I truly believe that. I guess I just have a hard time taking my own advice..

My main symptom with POTS is dizziness..It's almost a constant thing anymore. I was diagnosed in October of 2009. Since then I've been taking a low dose (2.5 mg) beta blocker (Pindolol) and .2 mg of Florinef a day. I was only taking half of that until they upped it because my BP got too low. My heart rate has gotten somewhat under control since I've been taking the beta blocker, but I'm still super dizzy and can't really get out to do much of anything anymore. I guess my question is..Do you think after taking these for 2 months, it probably would've helped me if it's going to? Also, I had about a month where I felt horrible..then a few weeks where my symptoms got a bit better and I could do more. Now it's back to feeling horrible again. Everyone thought maybe the medication was helping, but I guess I was just having a good run for awhile. I know I'm probably always going to have good days and bad days - but once you find something that actually helps..I would think the 'bad days' wouldn't be as bad as always, would they? Has anyone found anything that helps them a good bit?

Wow, this is ridiculous! I'm so sorry to hear you had to go through all that..

Does anyone else have this? At times it gets better but lately I've been feeling like I'm on a boat all day long. It seems that being on the computer too long makes it worse..Any kind of focusing for too long, really. I felt this way for about a month straight..Then it got better for a few weeks but now it seems to be back. Hopefully it doesn't last as long as last time..I'm just wondering if others get this way..and if so, how long does it last?

My main symptom with POTS is dizziness. The other day it was really bad after I was up cooking for hours so I laid down for awhile. I noticed whenever I sat up the room just felt like it was moving around like crazy on me, I pretty much had to lay flat for about a half hour till the worst of it went away..I decided to check my blood pressure during this and when I was laying down it was 82/52. When I sat up (still mostly laying, I just sat up the slightest bit) and my blood pressure went up to 130/98..Normally my bp is 110/65-70 on good days. I'm still new dealing with all this and I was just wondering if anyone else has crazy blood pressure changes when they are only moving around a tiny bit?

I hear a lot about POTS flare ups, and I'm just curious, what is really considered a flare up? With me, I'm dizzy almost daily..but there are times when it gets really bad for a week or two - I'm guessing that would be considered a flare up. How long does a flare up last for you?

Well, I had one done years ago & the family doctor I was seeing at the time said everything was normal, but the papers said abnormal..but she said it wasn't anything major. In October of this year I ended up going to the ER cause my dizziness was so bad and I wasn't eating and they suggested I see my family doctor later that week. (I got a new one since years ago - that one didn't know what she was doing lol). So I did and she just said to wait and see how the tilt table goes (I already had that scheduled). Then I was waiting in the waiting room in her office cause there was a line of people waiting to get blood drawn and I almost passed out waiting. They had to take me back to a room and told me to lay down for a bit and she hooked one up to me then that I had to wear for a day. It did show that things were changing a lot when I wrote down my symptoms were really bad. I wouldn't really say it helped me get a diagnoses though, because I had probably 3 of them done in the last 8 years..and no one thought anything of it till they already knew I had a tilt table scheduled..

My cardiologist said as a good exercise to kind of 'train' my body is to just stand up against a wall for 10 or 15 minutes or so, and to keep track of my blood pressure and heart rate to see how it changes. Well, I tried that today and was only standing for 4 minutes before I almost passed out. When I first started standing my blood pressure was 104/73. Four minutes pass and I get super dizzy so I quick sat down on the floor and then laid down when just sitting didn't help. I took my blood pressure when I was laying down and it went up to 152/107. I'm just a bit confused because I thought when you feel like passing out, it's because your blood pressure is too low? My blood pressure normally runs low, but seems to shoot up when I'm on the verge of passing out. Does anyone else get like this?

I know what you mean. A lot of medications have the same side effects of what we're already feeling! So it's hard to tell which is which, or if we're having a bad reaction from the meds or if it's just a 'bad day' for us. Crazy!

I had a tilt table test done in October of last year. I wasn't given any medication beforehand..They just hooked me up to a blood pressure and heart monitor..Those little electrode things were placed on my chest and they started an IV. I was laying down for about 25 minutes. Then they tilted the table up and I thought I was going to pass out right away. I saw tons of dots and spots and felt that weird..disconnected feeling that you get when you're on the verge of being unconscious, but I didn't pass out or get sick. Once I was standing up that way for a few minutes, the worst of it passed. I know sometimes they will give you isoproterenol to speed up your heart if nothing happens but he said I basically have my own isoproterenol because my heart rate was 135 laying, and went up to 180 when they tilted me upright. They kept me tilted that way for about 20 minutes. The only thing that happened afterwards was that my legs felt numb for a bit but once they unstrapped me and I was able to move them, I was fine. I pretty much had my normal lightheadedness once it was over with and was just tired. Nothing too bad though!

I will definitely look for the Yahoo group and I already requested to join the Facebook one. In the past week I have done 20 minutes of pilates and I just finished doing a 10 minute standing ab routine. I found a few free exercise things On Demand on TV. It's good because most of them are short..I try to aim for 20 minutes. Right now if I do the longer ones I make sure it's one where most of it is spent laying down, which means a lot of leg exercises - which will hopefully help with blood flow! It's hard because I was so used to doing an hour or so everyday..Now I need to push myself to do 20 minutes lol. At least it's something though, and I have to keep telling myself that.

Before I got sick I used to love working out. In fact, I was probably a little obsessive with it. I would do 4 miles on the treadmill each day, plus a workout dvd. To me it was just so much fun. I really liked the dancing/kick boxing workouts. My favorite was Turbo Jam if anyone has ever heard of that. My worst symptom with POTS is dizziness. I know I would be on the floor if I attempted doing that kind of stuff anymore but lately I've been feeling a bit better. The dizziness comes and goes a lot..Most days are usually a struggle but since I've been feeling a little better I have it in my head that I would really like to start exercising again. Now, I know I can't go crazy with it like I used to, but I think it would be good for me to a least do something again. Like I said, workouts always just made me feel really good once I was finished and I miss that feeling. Since it has been awhile though, I'm wondering if anyone else on here does any sort of light workouts that they could share with me? I do have yoga and pilates dvds but I would like doing something more aerobic. I don't know how long this feeling will last. I could wake up tomorrow, feel horrible and then my whole exercise plan will go out the window..but in the hopes that that doesn't happen, any advice, tips or suggestions for me would really be appreciated.

Welcome! I hope your appointment helps lead you in the right direction. I know how frustrating it can be to deal with. I hope you have a great 2010 though. :-)

This might be an odd question, but whenever I sneeze (and usually it's a few times in a row) I always get really lightheaded. Same thing with laughing. If I laugh a bunch I just feel a little woozy for a few minutes! Anyone else get this way?

I used to feel the same way, to some extent. I always worry if I will have side effects. The thing is though, if you have something wrong to begin with, chances are things will stay the same or only get worse if you don't try medication for it. My dad always told me that if I do have to take something (he knows I get worried) to not read the side effects, don't look tons of stuff up online about the bad things that happened to people that were on it. If you take something and feel weird, or something strange happens, then read the side effects or do research. Because if you read all the bad things that can happen, you will probably think one of them is happening to you even if it's not. Plus everyone is different. What is horrible for someone else might really help you out. So you never really know what effect it will have until you, yourself, try it. I know it's probably hard though. Easier said than done I suppose..but I wish you luck.

Thanks for all the comments guys! I was definitely just riding in the car, not driving. I don't have a permit or license because of the dizziness. I had my permit for awhile - but it didn't go so well. I did end up going this weekend and I'm glad I did. The ride there and back was difficult and I'm definitely paying for it now (I feel like I'm on a constant boat ride today lol) but it was definitely worth it..It was a good weekend aside from the occasional dizziness while I was there but I'm still really happy I went. I basically did the same thing I do at home..When I get a bad spell, just lay down till it passes. I do think on the days I feel better, I just have more confidence and feel comfortable doing more. I hope I continue to have more days like the past few.

For the past few months I've been really out of it. I have really bad dizziness. Some days are a little better than others, some days I can hardly walk around the house. Lately though, I'm trying to push myself to do more things on the days when the dizziness isn't terrible..but it's hard. I find that if I'm around the house, not feeling good, I get in the habit of just staying in. Even when I'm a little lightheaded, I'm afraid to go somewhere thinking what if it gets bad and I can't just lay down somewhere? My house has become my little..safe place, and I know that's a good thing, but I don't want to feel like I have to stay in all the time. Has anyone ever felt this way? What did you do to get yourself out of that cycle? Today, I'm going to try and attempt to surprise my fiance. He's been living in the same state as me for awhile now (we were in a long distance relationship for 2 years) and I've never been to his apartment. He's fine with coming to my house and staying with me. Of course he'd like me to go see him but it's never been a real issue. He's very understanding. I'm just kind of nervous. It's an hour car ride (which can feel like a LOT longer when you're already dizzy to begin with). Plus, this might sound weird since it IS my fiance I'm going to see after all, but I'm just used to being at home and comfortable where I'm used to being.. and I can lay around in lounge clothes and just doing nothing if that's how I have to get through a bad day. So I just feel like what am I going to do if I have a terrible day and I'm not at home? I know these are crazy thoughts..and you can't live your life saying 'what if' all the time. Especially over the small things..but I think I'm starting to worry about everything all because of how I feel. It's really stopped me from a lot and I don't want it to anymore. Any advice?

My hands and feet are normally freezing to the touch. The only way I can tell for sure blood is pooling is when I'm standing or sitting too long. My feet turn a really reddish/purple color. It goes away when I lay down, though.