boymommy3

I am just wondering if any other POTSies have ever experienced excessive yawning? I don't do it much anymore, but I use to A LOT! It was like once I got started I just could not stop. I just read that that can be a symptom of MAS and, honestly, it made me freak out a little. I don't really know anything about that but just saw that is was fatal. Also because when I am symptomatic, I have lots of muscle issues. They twitch like crazy, but also feel very tight and stiff sometimes. Have any of you ever experienced this???

So glad you had such a good experience! We are huge supporters of the Vanderbilt medical community. We have a son with a CHD and have spent lots and lots of time at Vanderbilt Children's Hospital. I cannot say enough great things about our experiences at Vandy! I will for ever believe that God orchastrated our being there because it was not our first choice. If my sysmptoms persist I would love to participate in this program someday.

Thanks! I am so relieved to be finding all the info on this site! In the past anytime my doc has done orthostatics on me in her office my blood pressure either dropped or really didn't cange at all. Recently, however, I had an episode at home. A friend came over,because it scared me badly, and she brought a blood pressure cuff. We did orthostatics on me that day and my blood pressure went up, 141/86ish. I had never had that happen before that I am aware of but I also don't check my bp often. I don't necessarily think I am hyper-POTS but that was just a different result I wasn't use to seeing. Joyagh was also asking, and I have been wondering, are there a lot of people out there who have had negative TTT results at one time or another?

My mom brought up to me recently that it seems that I have my most major issues in winter. And when I thought about, she is actually right. A couple of years ago when it was severe was in winter. Does anyone else notice a certain time of year that is worse for them than another?

This might seem like a stupid question, but I am very new to all of this. What's the difference between Hyper-POTS and POTS?

This is interesting. I think I experience something like this. I will sometimes, out of the blue, have these feelings like you would get if something scared you really suddenly. Like my heart drops to my stomach, but nothing has happened to make me feel that way. I also don't feel anxious before it happens or have high hr, it just happens and don't usually last long.

I have POTS (not officially dx yet) and I think that my 12 year old son may have it. Last winter our whole family was sick a lot with one virus after another. My 12 year old though stayed sick. He began to have all kinds of GI issues, complaining of feeling week and saying that he felt like he was going to pass out. He actually did pass out once. He also developed terrible anxiety. He would actually have full blow panic attacks. Before all this he would go anywhere do anything with anyone, but all the sudden he wouldn't leave my sight. He did have some weird liver stuff go on during all that but nothing ever came out of it. Of course, he's never really had that classic HR issue that I am aware of though. It's been a year and while he's much much better now he still has times where he doesn't eat well and he also is still hesitant to go places without us. He also did just recently pass out. It was actually the day I went to the doctor because my symptoms were so terrible. When we went to my mom's to pick up the boys ds was lying down on her couch and he got up and walked a few step to me and said, "man I am dizzy!" He leaned over on me pretty hard but I had no idea he was passing out. I just happen to step back or something and he hit the floor like a lead balloon! After my husband and I started to read all this POTS stuff he said it sound a lot like our ds, too. From what I have read, it sounds like some kids get it when they hit puberty. It won't surprise me if this happens to him when he does, but I pray it doesn't!

Ok, so I exercised again tonight. I wasn't able to go quite as long. Just under a mile with jogging and walking. My heart rate was over 100 just walking from the car up the steps to even get into the gym. HR still went up to 160 but felt like it took a little longer this time. The difference tonight was that I started to feel nauseous and like my legs were going to give out. That's why I stopped. Again the moment my feet stopped moving I was so dizzy and had to sit for a few minutes. I did do a few other exercises with my husband after that but nothing that required me to be on my feet. While we were leaving I felt like I couldn't even walk down the stairs to get to my car. My muscles are so stiff now! I also had that yucky bloated feeling and feeling like I couldn't breath good on the way home. I am also having muscle twitches tonight which have slacked off the last week or so. Does any of this just seem to strange?! I guess I will call my doc tomorrow and just see what she says.

I know that the TTT is really the deciding factor in dx POTS, but my doctor really believes that's what I have, and I do too. I am very new here and the deeper I get into these posts I get increasingly convinced of it. I also am amazed at the level of knowledge on this forum! The reason I don't want to have the test right now is because I have responded really well to the BB and I REALLY don't want to go off of it to have the test done. She said I'd need to be off for 48 hrs. before testing. The thought of going off makes me want to have a panic attack! The BB has really worked to keep my HR down. Then I begin to question myself about weather or not this is really what I have and what if it's not...then what in the world is wrong with me??? I have so many of the classic symptoms. Heart racing when I stand. Waking up at night with a racing heart. Sometimes it would be racing when I woke up but if not it's like I could feel it about to happen and if I move around in the bed, sit up, or stand to go to the bathroom it would start. Trembling/shaking all over excessing peeing GI issues terrible weakness ( feel like my knees are just going to give out) feeling sick dizzy/light headed (although I am not one who has every passed out, there have been many times that I have come very close) brain fog; unable to concentrate periods of getting very very cold (especially hands, feet, and nose) visual issues strange pressure/ some pain in my head and ears lots and lots of muscle twitches and also a feeling of my muscles being tight (sometimes wake up feeling like I have had a leg workout and haven't even gotten out of bed yet) It's just that the more I read that there could be things going on to actually cause POTS, I then question my decision to allow my doc to treat me as though that's what I have with no further testing. She said she was fine with that as long as I am but the minute I'm not to let her know. I have had thyroid problems on and off for years. A different doctor a few years ago put me on a BB for high/racing heart for what we thought was a thyroid issue. This particular BB had a diuretic in it but he never said anything. Long story short I ended up with critically low potassium because of that medicine (nearly died). During that time was when the POTS symptoms were horrific. Found my new doc and she said then that's what she though I had. A cardiologist said no but didn't do any testing. Took me a long time to get better, but I did. Like a light switch really, and have been mostly fine for a long time. Now after having the flu about a month or so ago, I can't get back to normal. Anyway, through all of this I have had tons of blood work and nothing ever shows up. I do know that my TSH is a little low right now but my edno says not enough to cause all these symptoms. Again that's when my regular doc said she really thinks I have it. I also stated in my first post on here that she told me to drink gatorade and when I did I could tell a difference in how I felt. Been drinking one every day since. I have also upped my salt intake otherwise as well but I don't have super low BP this time around. Last time I did. My mom also has MS and she is really wanting me to have an MRI because so many of my symptoms are so similar to hers, but my doctor isn't quite ready to do that yet because she just doesn't think that's what I have. I also don't really have anxiety over thinking I might have MS either. Advice on what I should do???

WOW! I have had something similar to this for ever! Not all the time, it just comes and goes. I will sometimes wake up in the middle of then night or very early morning (5ish) and I have always had trouble describing it. I find that I often have trouble describing many of my symptoms. Does anyone else have that trouble? Anyway, it's like I feel super hungry but also not. Almost a sick feeling. I have woken my husband up many times to get me a banana because I feel I can't even sit up in the bed. But often I can't even eat the whole thing because I feel so sick. When that happens I will often feel that way the whole day. A feeling like I need to eat but can't. I do also have times where I feel so bloated when I eat or drink the smallest amounts of things and if I over eat it's almost painful and I feel like I can't breath well. I have checked my blood sugar before and never had any major lows. I think 70 might be the lowest I have seen. Also never had any high or low blood sugars when the docs have checked it. I do remember though, when I was pregnant with one of my boys, when I had the glucose test my sugar was no where near as high as they expected it be after that nasty stuff they make you drink. That was years ago.

I have this feeling a lot as well, and more so at night than any other time, apparently like most others. But I also have the times when I wake up and my heart is coming out of my chest, and if I wasn't havinga panic attack before, I sure will be when that happens! I HATE that feeling! I have had this problem for years! I have also had hyperthyroidism for years as well (on and off) so up until a couple of years ago we attributed EVERYTHING that was going on with me to that. Finding all of this out now, though, we are increasingly convinced I have had POTS for quite some time. Yes....it's a simple blood test that can tell them what your cortisol is (I just had that test a few weeks ago). The NE and adrenaline I am not positive about, but I believe you can have that checked through labs also. I am sorry you are feeling this way, it really does stink!

Alos, I have had an ultrasound before that was completely normal, holter monitor, and a bajillion EKG's. None of which ever show anything. I haven't ever had a stess test, though.

Sorry I wasn't any clearer. I did warm up and cool down. My HR didn't stay that high the entire time. When I would start to walk again it would come down some (140's- 150's), but then as I started jogging it would go back up. It's just that I felt like when my heart rate was 160 I wasn't exerting myself enough for it to be that high. And even though I did cool down, the minute the treadmill stopped I was so dizzy, but again my HR had slowed because of the cool down. I take Toporol Xl 25 mg./bid to keep my heart from flying out of my chest. I seem to respond really well to that. I just wonder if I should contact my doctor about how I felt after the exercise.

I did 1.15 miles on a treadmill tonight. I walked and jogged. Once I got going pretty good I felt pretty good, but my HR was 160 with very little effort. Also, the very second my feet stopped moving when I was finished the whole room was spinning! There was a chair that was pretty close to the treadmill and I made there to sit down. I was so dizzy and thought I might faint. I never really do faint, but I will feel like I am going to. Is this normal for POTS people?

I have problems with my eyes and have a hard time explaining it. I feel like I can't focus on things very well and I also have trouble going from one thing to the other. Like if I'm looking at the TV and then move to something else it takes me a while to focus on it. I recently went to the eye doctor, partly because I haven't been in forever and because of the issues I have been having( and I noticed a big difference in how well I see out of my right and left eyes). I thought for sure I would need glasses. I acutally don't! My vision in my right eye was only 20/30 and I showed no need for prescription what so ever in my left eye I was really surprised!. He did, however, schedule me to come back to have a field test/study (not sure what that is) because even though my vision in my right eye wasn't that bad, it didn't show improvement with correction. I go back Wednesday for that. He said that if I had something neurological going on that this test should show it.

I have been having problems with pressure in my ears lately. Not really chronic problems. It's kindof a new symptom. Does anyone else have pressure issues. It's almost like my ears feel stopped up. Sometimes I find that POTS symptoms are so hard to describe. Does anyone else have this problem?

Well, I am no where near as knowledgeable as most others on here because I am just learning about this disorder. However, my latest onset of symptoms came during or directly after the flu. That was in early in December and I am still symptomatic. Was the tamiflu a 5 or 10 day dose? Usually, if they are giving it to you to TREAT flu as opposed to PREVENTION of flu it's just a 5 day dose. If that's the case, and he's only about 5 days out, then I would say give him a couple more days before you try to much. Again though, I am very new here, so not sure if that's the best thing to do.

I understand not wanting to go to the ER but please make an emergency appointment with your doctor tomorrow. If you tell them your situation I am sure they will work you in even if they are busy. Do you have any kind of support system at all??? I can't say that my symptoms have ever been as bad as yours seem but I do have so much compassion because I do know how hellish this is, and it just breaks my heart for you! I know about trying to be a mommy and trying to deal with this, I have 3 boys. I am so very sorry that you feel so badly. You are in my prayers!!!

Hi! I am so soooo very happy to find this forum! You can't possibly know how relieving it has been to read your personal stories! Well, I guess you can know. My story is very long so I won't share it all at once! I haven't been officially diagnosed with POTS, but my doctor truly believes that is what I have, and as my husband and I have researched more and more we are increasingly convinced as well. From all the reading we have done about how little doctors, even specialists, know about POTS I count myself extremely blessed that my doctor was the one who brought it up and told me she thinks it's what I have. I did have a cardiologist tell me two years ago with no testing what so ever, and very matter-of-factly, that I do not have POTS. I think I will start with the present and work backwards with my story. So here goes.... I had the flu earlier in December and have pretty much been a mess since. In terms of my medical history, I have suffered with hyperthyroidism on and off for about 14 years. It has been a yo-yo of a journey with that. Almost all of the symptoms that I have had this go around were some of the same exact symptoms I had two years ago. With that being said, I have read that some people can have a remitting/relapsing form of POTS and I believe that may be how mine presents. I say that because when I when through this a couple of years ago there was literally a light switch kind of day that my symptoms stopped. Ok so for my current episode.....(I think the brain fog is getting me right now because I am having trouble keep my thoughts straight!) So yes, I had the flu earlier in December. I was sick for about 4 or 5 days. The first two days weren't too bad, but days 3 and 4 I thought I might die! I also had high heart rates those days (in the 140's). So I could feel that I was getting better from the flu but I wasn't feeling well at all. It started with a couple of nights when I went to be I got soooo very cold! I kept telling my husband that my bones were even cold. I could do nothing to warm up. It was almost painful. Then, one night I got up to go to the bathroom and my heart began to race and pound like crazy. I woke my husband and he said my HR was at least 160. I had a very scary experience happen two years ago because I had critically low potassium and it felt like that was happening again. My husband called his sister, who is an RN, to come down (at 4 am!) and I was telling him that I needed to go to the ER. I felt like my muscles were all stiffening up on top of the high HR. She got there and began to check me out while my husband went to get an Ativan. After taking that about about two hours of them talking to me, things settled a bit. She left and we were able to get a little rest. I went to the doctor the very next day. So again my doctor (she is the absolute best!) brought up POTS. She did ortostatics on me in the office several times and my HR was around 107 lying down and immediately upon standing it would go up to 130's -140's. My BP wasn't low and did change much this time, but last time I went through this it was low. Actually that day my BP was higher than normal. 127/86. I am normally 110-116/76. Anyway, she really wanted me to schedule the TTT and she did all sorts of labs and sent me home. She did, however, send me home with Ativan to take (very, very low dose) to help when I have the really bad, spiral down moments. I seem to respond well to the Ativan. She also prescribed a BB. Toporol XL. Within hours of taking the first dose of BB I could feel my HR slow. However, was having terrible muscle twitches, a general terrible feeling, and dizziness. I also will sometimes have these crazy shaking episodes. I mean I will literally shake/tremble from head to toe. My teeth will even chatter sometimes and I can not stop it. What has been new this go around has been really strange head/eye stuff going on. At this point the reason I haven't done the TTT is because I have such good results with the BB that I DO NOT want to go off of it to have the test done. Especially if it won't really change my treatment. My doc said she is comfortable with treating me as though that's what I have as long as I am comfortable with it. If at any point that changes I am to let her know. She had told me to drink gatorade and we didn't know why. My husband said that she must have thought I was dehydrated. He got me a 32oz gatorade and I got about half way through the bottle and I told him that I thought I might feel a little better. He said that I must have been dehydrated. The next day I didn't drink one. Then the next day I was really awful and later in the afternoon he said he was going to get me another gatorade. Again, when I got about 1/2 way through the bottle I noticed a difference in how I felt. I mean I was jumping stumps or anything, but I could tell a difference in how I felt. He and I both thought it was so weird! THEN...I read that that is a method of treatment for people. That's truly the moment that I began to really believe she was on to something. I have drank a 20 oz. gatorade first thing in the morning every day since. The other thing that hit home big time was I read about people having trouble retaining fluid and peeing a lot. Oh my gosh!!! When I have these episodes I pee like CRAZY!!!! I have done this for ever and no one could ever figure out why. Truly, my doc didn't even think that much about it or didn't think that it was my most pressing symptom. When this happens and I pee constantly it is literally CLEAR, like you can't even see it in the toilet. That was always what I found so strange! I kept telling my husband that I knew I wasn't THAT hydrated. That I actually wasn't drinking that much. I use to have a lot of anxiety about but not now that I know it's a symptom. Ok, that's enough for now. Or probably too much! I just have felt so alone for so long, I just want spill all the beans in one breath!!!!