Joann

I can't really vote on this, because I get really bad symptoms when I try to enjoy this activity! I have been told by some others that this can happen, I have the hyper kind. I am only posting this, in case, there are others out there like this too.

Ramakentesh, That makes me have a little more hope that I don't have true hyper pots. Have testing coming up and hoping for some answers. As to functional. It changes from day to day. There were times when functional was just getting to bathroom to bed, and if lucky to the couch But after medications and learning how to manage some what, I can have a few days where functional is taking care of my family, making meals, doing errands and going to work one day a week. Then I can back slide and functional is just getting up and trying to act normal for my daughter, and trying to force my body to eat and drink and just stand up! My hope is that functional will be able to complete a somewhat normal day without feeling like death. I wouldn't even care if I could never do steps or inclines again.

I think there are too many "specialists" out there. And they are too specialized, so if you don't fit in their little area they can't help you. And with this type of problem we seem to have problems that cross over many systems in our body. So no specialist can seem to address our entire problem they want to choose one symptom and treat that instead of looking and the entire picture! So sick and tired of it all. Just today I had a doctor's office call me and tell me the exact opposite of his associate. One is a neuro and one cardio. They are associates for the same clinic and they can't agree!

Badhbt, I think I will try massaging my leg and foot. My left leg has been really hurting me. It actually seems like it is causing some POTS symptoms. I stupidly tried to do some steps last week and ever since then it has been bothering me. I try not to freak out about it, but it hurts off and on and I get nauseous and tachy with it. Its odd, any bending of it sets it off. lLke today, I was sitting on the floor organizing my daughters closet and started to feel bad after a while and when I got up the leg started throbbing and then the pots stuff came. But if I just walk its okay, but any bending of it and its pain there and the pots stuff. And most of the day I feel like body is running on high. Maybe it is the bloodflow. I keep freaking out thinking there is something wrong with a artery in my knee. I know that sound stupid, but all of this stuff started around the time, I slammed my knee in my jeep. I didn't put that together til recently. Achilles2323 -sorry didn't mean to ask questions on your post, just interested in the answers you get too. Do your muscles ache all the time or at certain times?

I wish I had answers for you. There are people on this site that seem to have a lot of knowledge on this disorder. I am still in the searching and learning process. Maybe its neuorpathy? I know I spelled that wrong, but thats a possible?

CanadianGirl173- its possible you did too much. People look at me like I am faking it, I had one woman say directly to me " Oh, so you have a phobia of stairs?". I am proud of myself, I calmly said, "No, the doctors say this is an autonomic problem that my body cannot regulate blood pressure and heart rate correctly" In a way I am like Kelly Saved By Grace, when I lay down, it gets a little better but when it is bad it doesn't go completely away. And then for days afterwards, I am getting the symptoms when I get up. The thing is if I push too much, I relapse to where I cannot get up at all, and I do not want to get like that again. My symptoms make no sense whats so ever. This past week since I did the stairs, I have been really off. Nauseous, and pain on the left side, especially my leg, but also my left side above my hip and pressure below the sternum and heart races off and on. Today I figured I would tackle my daughters closet, most of the time I would be sitting on the floor. But it seems to make me feel worse than getting up and walking. It seems like when my left knee is bent or kneeled on I get the pain in the leg and nausea and head pressure. Its at its worse when straightening from that position. I am avoiding stairs for now again. I just don't know who I can get to look into this. I am hoping I can bring this up at my next visit to Cleveland Clinic, which is about a month away. I hope you figure the reason you are having this happen soon.

It could be many things, but one suggestion how are your vitamin levels? My vitamin d levels were really low and I had tons of pain all over. I got the levels up and still had pots issues but the pain of the body seemed better. I was taken off those high doses and have a feeling my d levels are low again, I am having a bunch of strange pains, in leg, foot, arms, neck, etc... I also am late on my vitamin b12 shot. Just a suggestion.

cupcakemomma5, So can you now do stairs? If you can, how did you get to that point? Any suggestions would be great When I tell my doctor what happens she just says I am deconditioned from the POTs and I probably did too much that day. But this began when I was still in good shape, just is worse now. I have wondered if there is some small artery or vein problem, but I have been told no, it doesn't sound like that and they don't want to check for this.

Seattlerain, I understand what you mean when you say you feel like this is different. I have some symptoms that others don't and I don't have many of the symptoms that many here have. But then I have heard that POTS is different for everyone. So.. maybe it is. Then again, I it could be something more that is causing the POTS symptoms. Unfortunately, getting medical professionals to listen to us is very difficult. They have their preconceived ideas and often don't want to look out of the box. I believe most hospitals will not admit you, and if they do they often just do the basic tests and let you go. I have been admitted three times, and each time I thought finally, now we will figure it out. That didn't happen, they would run whatever test they thought it could be, stablize my bp and send me home. Even when I told them I was not any better and wanted them to check more. Add to the fact that recently insurance has more stringent rules, and are covering less. I just had a ttt test denied because they said it was not medically needed! REALLY. Like we do these tests for fun. I was told I had to have proof I faint. Well, I have high bp, not low so I don't faint. Anyways, I am not saying to not go to ER. If you feel like you need medical help immediately go! But otherwise, I think we all have to search for that one doctor who is willing to listen and think out of the box. And often we have to wait forever to see these doctors. I am still in awe of how Kris on this forum has gotten all of her doctor appts. in this past month! I hope you feel better and hope you find a doctor to help you. I am still searching for that doctor and my answers.

I cannot go up or down stairs. I get pain in left side of face, neck, arm and left leg. I have been told it is not my heart. Yet, I often wonder. I will continue to have these pains off and on for days afterwards. I also will have bp spikes after this. I still think it is cardiac related, but I am told no. Yet it is odd, I can walk on flat land for quite a long time, but cannot do stairs or incline. I went up and down my stairs for the first time in 4 months, I went up 2 or 3 steps then stopped and read then went up a couple more. I had symptoms later that night and off and on for days, so I just don't know. I can do the porch steps 2 or 3 no problem. If this has never happened to you, it certainly might be a good thing to get it checked out. It never hurts to rule out things.

I do have muscle or nerve pain in the leg, but mainly the left. Most of my symptoms occur on this side. It seems to start in the knee area and then go outward. But back when I was really bad, and occasionally now, my legs will feel really, really heavy. I described it to the doctor that it felt like magnets were in my legs and it felt like I was being pulled to the ground. I just got the look, you know the one, "this chick is crazy" look. LOL

As many people on this site can understand mornings are always rough for me. But some mornings are worse than others. Today was like that for me. I woke up in the middle of the night with sweats, tummy trouble, headache and heart palps. I gave up sleeping about 5:30 and got up. I took my first batch of meds at 6 a.m. and got my husband and daughter out the door for work and school. I was proud of myself, I was soldiering thru the crappiness I take another bp pill between 7 and 7:30, and I have a usual ritual. I break my pill in half and I get a small glass of water and take them to the living room and place them on this table and wait to take them at a certain time.Now, I am going for tests at CC soon and have been told I may need to wean off my meds. So I decided to try and put off meds by about 1/2 hour. I was listening to the news and was on my kindle and decided finally it was time to take my pill. BUT... it wasn't there! I freaked, looked all around the table, checked my glass. Did I take without realizing it? I still had water in the glass, and part of my ritual is to drink all the water with the pill. I was freaking out, I missed a dose once and within hours my bp and heart rate were soaring and I was really awful. I checked the bottle, did I not take one out? Nope the right number was in there. I wondered did I drop in route? By now, if anyone was looking in our front window, which by the way, I had opened the blinds up completely for the best light, and put every possible light on!, they would think there was a crazy woman bouncing around the house. I was on my hands and knees looking at dust bunnies. Swept the kitchen, the living room and the bathroom (why there I don't know). I took every thing off my messy two tiered table, and spent time gong thru my daughers huge bin of school supplies that is on the bottom level. No pill.... My dad called me and said oh, you probably took it. Which of course, annoyed me, because I was thinking, he thinks I am nuts. I told I am 99% sure I did not take it, but because I am not 100% sure I can't get another pill. Now I was pulling out the couch and sweeping the half I could get under. I shook out the blanket I had!!! My house was getting some areas cleaned that I thought I was unable to clean, but panic will do that. LOL. My dad came over and said let me help. He got down on his hands and knees on the other side of couch near the front door and said if I find it I get a hug, ok? Yea, sure dad. He gets up and says how about one now and then one when I find it, Fine. I give him a hug and then he opens his hand and says is this it? I couldn't believe it he comes in and in less than a minute finds it!!!! I hugged him again and he showed me where it had gone. It was on the opposite side of the room where I had not been. I probably dropped it on my shirt or blanket and when I stood up it flew!! I am klutzy but I did not take the pill and not remember it. What a relief! I had spent an hour looking, and then my dad helped me push the table, couch and mircowave tray back into place. Some areas of my house are now cleaner than they have been since I have had this syndrome (18 months) and I feel a little better that I have not lost all of my marbles yet. Now if I can just convince any neighbors that happened to see my morning performance!!! Oh, and I was able to take my pill an hour late and feel ok. Ain't life grand!!!

Its tough, like everyone has said. We have all been there. It is freezing where I live and I think this causes even more isolation. When it is warm out, sitting outside just makes me seem like I am more involved with the community. Also, more people are out and about the neighborhood. Right now everyone is hibernating, they only go out when they have to, and all our houses are shut up tight. I have been really lonely and depressed. But... spring will be here soon. So if you can soon, try just sitting on your front porch or lounge chair. I understand wanting to go out and change the world. I miss that too. You are young and there is a good chance you will get better, but that doesn't help you now, I know. I can only tell you we are here for you, understand what you are going through. I will say when I am feeling bad, sometimes talking to someone on the the phone, talking not texting, seems to bring up my mood. I talk to someone about topics that do not concern my health.Can you skype or face time your friends? My daughter and her best friend often cannot go to each other's house, so they will often set up their skype and go about their night watching t.v. or whatever together. I also have listened to a couple of the oprah and depak medatations that some one mentioned on this site and they reminded we have to have balance and passion. The passion is what struck me, I need to find something that I can be passionate about again. I have centered on my health and its restrictions and what I and my family have lost. I need to find something I can do that I can be passionate about. Maybe that is something you need too. I know we do not have as much energy or physical capabilities but there has to be something we can be passionate about, while we continue to search for answers. I am trying to search for that, whether it will be a craft, writing, some type of volunteering from home, cooking? Hoping for smiles and better health

All the best. Keep us informed!

When I did laundry, bending to get the dirty clothes out of the hamper and then trying to get the laundry out of the dryer would knock me out. But I no longer can do laundry because I cannot get to the machines. They are in the basement and I cannot do stairs at all. A set of stairs can cause symptoms for weeks. I still think this is more than the POTs. The heaviness of pushing the vacuum can sometimes cause problems. I do think this has slowly gotten better as I have regain some of my weight and strength. The bending and stretching make it difficult for me to make beds, this also was worse last year. When I am having flares I cannot do straightening of the house because of bending, but on good days this is not a problem, as long as I don't have to lift or move anything heavy. Funny enough, I am the opposite of boymommy and dishes are the easiest for me. Well, when I do them in the sink, if I need to unload the dishwasher it can cause problems. This syndrome makes no sense whatsoever! LOL

I can relate to your problems, but I am sorry I don't have any suggestions on what medications will work. When I am feeling somewhat good, the nights are usually fine, but when I am feeling bad I can feel bad from just turning over. I also get the sweating, it is usually at its worse between 4 a.m. and 6 a.m. While I do get increase of heart rate, which is why they feel this is POTS, I get large increases in BP with these episodes. I am also taking metoprolol, I take 12.5 in am and 12.5 in pm. I also take cardura, which is one type of an alpha blocker, I think. We probably need additional medications, but finding what ones is the challenge. That is why I am continuing to find further diagnosis and testing. I think if we can find out what kind of POTS, or the cause we can then better treat it. Oh, and I also usually feel better as the day progresses, unless I do something I know will trigger it.

I actually was on my meds when I had the TTT. My doctor didn't want me to have to go through episodes for it. She said she would account for the meds. She said the TTT indicated POTS, but wasn't going to say for sure it was hyper or not. I did have raise in heart rate and while I wondered how it would test on meds, I still expected it to show the bp increase that is typical at home. It showed my bp going up but also going up and down! I have recently had Dr. Shields at Cleveland review the results and he wants to re-do the test. He said there were two schools of thought. 1. off meds is the pure-ist method and 2. if you have it will show regardless of meds. He said my previous TTT showed irregularities of heart rthym and bp, but wasn't sure what type of autonomic problem it was. He would ideally like me off meds for the next test, but I told him I didn't think I would be able to function and get to Cleveland off them. The autonomic clinic is supposed to call me prior to test to see what will be best.

badhbt I get the twitching while I am sitting, relaxing in my rocking chair (no, I am not 80, but they are really comfortable). I get them in my upper legs and arms. I sometimes will get them in my back also, those are really odd they feel like little bubbles bursting under the skin. The ones in my arms and legs are more like the normal twitching, they are when I am relaxed but they are also more frequent when I am having flares. I wondered if it was a deficiency of something? They were much worse when I was worse, imagine that.

Aimes, All of those issues you just listed are things I have dealt with. I also have scoliosis. I will say my digestion issues were awful last year, but now they are getting better unless I am in the middle of a flare or "episode" then it comes rushing back. Still a year ago today and for a good 4 or 5 months I was miserable almost all the time. Now I am having more times where I feel better. Now normal but not as awful, I think it is a combination of things, bp medications (which I think probably still need to be tweeked), learning some triggers, gaining back weight and some strength and not doing as much, probably controlling the panic I feel when it occurs. The pressure you speak about happens to me during bad flares, but also yes, if I push too much along with the head pressure, I will get it around the nose (the sinus) area, have no idea what it is or why. But I am still going for testing and answers, I am hoping once I get some more answers I will be able to better manage this. And I hope you are right, that they will figure this out soon for us. I was trying to search the other posts, were you the person that mentioned you have bloodshot eyes? I was reading posts and unable to respond at the time. This is something I haven't been able to figure out, maybe the meds or maybe symptom, but my eyes are always blood shot, but actually get really bad when I try to put eyeliner on or any other eye make up. It is as if my blood vessels burst with the lightest touch. Which scares me, what the heck are the other blood vessels in my body doing?

Aimes, I don't experience the deafness, (at least I haven't yet). But the rest of the issues are all things that happen during my "episodes" especially the high bp. The diastolic number often scares me. I also usually have to go to the bathroom. I don't remember my bp coming back down from that though, I usually have to lay down if it goes that high. My head also gets that full feeling, I describe it as if a bicycle pump is pumping so much air into my head it is going to explode! My body gets really really tight and sore when the bp goes really high. Can't really help you as to why or what to do, but just let you know that others experience it too.

I am bumping this topic. I am currently having problems with this. My doctor does not want me to do birth control because I do not have the low bp, I have the high bp spikes He is afraid of strokes. But I have such problems right before and during. The past few days I could tell it wasn't going t be good, the bp wasn't bad but I had problems with bad gas (just walking can bring it on), not being able to sleep, nauseous, appetite gone, sweating off and on (when I am not my usual freezing). Yesterday I drank my usual amount, but I had to urinate tons. Like every hour, large amounts. Now I usually have to go often, but not these amounts. Today I started and I was hoping it would help some of these symptoms, but on top of this, my bp is going up with standing (so far not too high) and I am sooooo tired. I actually fell asleep during the day, which unless I am down from a flare I do not ever do. I have forced myself up, My body feels like I have a large magnet that is pulling it to the ground. I am also have some, not too bad pressure in the usual sternum area, that I get when I have flares .I have children coming home ( I am suppose to drive and pick them up in 1 1/2 hours). So what are peoples opinion- is there anything to help this besides birth control? Do I try and drink more? How can I keep it from going right out? Should I force myself to exercise. Any suggestions would be great. I just don't want this to get any worse and turn into a large, longer down cycle. Thanks

I have realized that most of my goals are more of wishes. Like most here to get better, find the cause, to get to my old self, to find a doctor that really connects with me and helps me. But while I wish for them I guess my goals are to be more patient, and to learn to deal with this better emotionally, to try and live my life while dealing with this, to not allow this to take over my life as it has. To enjoy the little milestones, and maybe not push myself so much. I am so discouraged when I can't do the things I used to- like go up and down stairs, or work my normal hours, but I need to realize that I am maintaining myself at a higher level than a year ago. And one other goal, to figure out a way to pay all my medical bills. Hopefully I will figure out a way to make money, creatively from home.

Omg, badhbt, I nice glass of wine or an ice cold beer on a sunny day!!!!

I am a realist, I do try to be optimistic, but that is not my natural inclination. That said being negative and depressed definitely won't help. I hear often that those that are more upbeat and positive often feel better and probably do better. That makes sense being depressed does things to the body, so being upbeat would help. Plus all of the those things you listed may help you have a better mind frame, and i think help you control or divert pain. Each person is different so you would have to see what works for you. I don't find some of them helpful, but many do. Plus, some of them take time to learn and work. I do use yoga breathing and read others stories to get inspiration (like Michael J. Fox).

With this rollercoaster of a ride with POTS, I admit there are times, especially when I am really sick and unable to do anything, that I am just depressed. Sometimes just crying lets it out. But when I can, I try to get busy, call someone, get on the internet, if my body will allow it- get out in the fresh air. Last year, when I really couldn't do much, I would go in the back yard and lay on a lawn chair in the sun. I would doze, or read, or even watch/listen to t.v. in the garage. But being outside helped. For me, being enclosed in the house drives me crazy. I am one of those that can't handle cold, but I am okay with heat, so I can't wait for spring. This weekend it may get to 50!