Kujiforo

I'm more dizzy while laying down than when standing. For me it has to do with the act of changing positions, rather than THE position. From standing/sitting to laying down makes my dizziness flare the worst and makes my heart rate jump up as well. It feels like I am spinning sometimes, and other times, more of a weak/faint dizziness rather than spinning. Its very awful. I don't know how to manage it so I just wait it out until it passes. I don't have constant dizziness, but I do have episodes that can last for an hour or more, mostly at the end of a "bad day" of symptoms, as I am trying to sleep.

I too have near constant muscle and joint pain. Sometimes it is manageable, sometimes it brings me to my knees in pain. I haven't yet been diagnosed with POTS, but POTS has been discovered to run in my family and I do get tested soon. I can somewhat understand what you are going through. Normal pain medication doesn't seem to work well in alleviating the pain for me.

My panick symptoms come on whenever I start feeling bad, my mind doesn't make it happen...but its more of my body's way of reacting to being under so much stress and pain with symptoms all the time. Mine feels like an adrenaline rush to my head, making it spin, then I get cold and hot numb or tingling sensations, and find it hard to breathe. I feel like I am floating above my body and my body is dead weight being pressed down to whatever surface I am sitting on. Most all of my panick attack symptoms come at night when my body is trying to relax, because alot of my dysautonomia type symptoms flare up then. Its annoying at best. I just pray my way through it and try to force myself asleep so I do not have to feel it.

What i can do: Bathe occasionally Sit up, but cannot move around lots while doing so, like bend forward - that triggers attacks Eat just bits at a time What I cannot do: Cook, clean, household chores that require standing and walking much Get out the house for long periods of time Sing (unless I want to faint - I still push myself to do this because I enjoy it) Draw (my joints hurt too much so I only draw when able) Bathe daily Hold a job Sleep regular hours Eat regular meals, or sometimes, eat at all My level of function is very minimal lately, due to my symptoms growing worse. I attribute this to me being on my period right now. It seems to make my symptoms explode in a frenzy.

I had this just last night. It gave me panic attack sort of symptoms along with it, but mostly the muscle spasms and the feeling disoriented. It makes it really hard to sleep. I've still not been given a diagnosis of POTS but my symptoms are exactly as the ones I see here. I think this restless feeling and muscle spasms along with the feeling like you cannot get enough air is the worst. :\

I am super tired all of the time, not sleepy, just feel worn down, no matter how much I sleep. Its bad because I have hyper personality so I tend to push it even though I feel awful, then end up near fainting, just like I did a few minutes ago. Fatigue is a very large factor in whatever I have. I have yet been diagnosed, but doctors are leaning towards form of dysautonomia or Fibromyalgia (I don't know much about that). Often I feel like I'm really weak, sometimes so much my arms go limp...other times I'm so worn out from the widespread ache and pains shooting in random parts of my body. And sometimes its the tachycardia bouts that wear me down the most. But that general feeling of fatigue is just awful. I can relate!

I was taking Seasonique. It caused my tachycardia bouts to nearly double in frequency. I'm on my cycle now that I have stopped and its been the worst two days ever for me. I went to the ER yesterday looking for some relief. The doctor said my short of breath is caused probably both by the pills but also from stomach issues. They gave me a GI Cocktail and it helped tremendously. My GI appointment is still not for another months. With all my symptoms, I'm holding on by a thread to make it through another month. The ER doctor told me I may need to have my doctor push tests forward due to my pain and discomfort...he suspects Fibromyalgia, and that scares me. But he says all my symptoms seem to really reflect that, stomach issues and all. Needless to say, I'm still feeling horrible. No energy...feel like I can't breathe sometimes, pain all over. Its awful.

I have been getting severe shortness of breath now...chest tightness, but not pain so much. More like I feel like I've been working out and pulled chest muscle and its so tight I can't breathe well so I hyperventilate. D: I have not been checked for allergies specifically (only by being around/taking things and getting severe allergic reaction by trial and error), but I am allergic to many household cleaning products, and pollen, and most medications (which is another reason doctors are hesitant to put me on anything). I guess my body is just a wreck. My birth control pills I take for PCOD seems to enhance my shortness of breath, chest pain, anxiety episodes....so I'm stopping them. My episodes used tobe once a week or less before I was in 2 weeks on those pills. I think they mess with my hormones too much. I've been on them nearly 2 months and since I have, things have gotten worse. So I'm stopping those and see if I see an improvement. My cysts grow and burst painfully while on them anyhow, so they aren't doing too good of job. Been on them 2 months already, I should have been seeing improvements. Instead, just got worse side effects. If anyone has any more NATURAL suggestions to relieving PCOD symptoms besides birth control, I'll be glad to hear. I also heard Paxil is great for both POTS/dysautonomia symptoms as well as reducing anxiety attacks. Its something I want to look into.

I sometimes have to take hydroxizine to knock me out if I'm feeling particularly bad with pain symptoms that day (I get widespread pain). Other than medication occasionally, I usually can't sleep well without having on some musick playing in the background. I guess musick helps me relax and drift off to sleep easier. Also laying on my right side helps me sleep better, as I always have the problem of being able to feel my heart throb strongly in my body, which can keep me awake. Laying in a certain position (for me, on my right side) lessens that sensation, and helps me sleep.

@ Lieze - Yes. Its so hurtful and you feel so alone! If not for my friends on the internet, I think I'd have died. They are my ultimate support system. My family still thinks I'm just crazy and expects way too much out of me. And yes, Tachycardia seems to be the ultimate symptom that leads to everything else: sweats, fainting, short of breath (thats my scariest symptom...I REALLY hate it), feel like my chest is being crushed. It kind of feels like my body is running inside (like physically running miles and miles) but my actual physical body really isn't. That's the best way to describe how I feel like. It feels like I'm running and out of breathe but my body can't ever stop to give me the rest I need. With people screaming at me, my heart rate elevates even more. The doctors have already TOLD THEM to not put me under any stress whatsoever, until they find out the underlying problem. I'm not even supposed to be bending over, much less working for them and carrying their groceries in, etc. or even cleaning my own house. I've reduced showering to once every other day due to me being so sick after I shower...just saps my energy right out of me. I just think my family brings on anxiety/stress that I can't handle, makes my attacks worse. I really wish they'd take the doc's advice to not aggravate me and make symptoms flare more.

I am so sick of being called lazy, irresponsible, stupid, ignorant, insert other hurtful term here...and so tired of being told to 'get up and do stuff for yourself, get a job, etc.'. I am so tired of family members that drag their heels when trying to help. They eventually help (sometimes...), but it takes every ounce of energy for them to do so. I'm disgusted with being called crazy, and sad at the fact that they mostly think I do all of this just to get someone to wait on me hand and foot. The energy I once had is gone. My heart rate stays so high it feels as if I run miles even while laying or sitting down. My body reacts as if its been hit by a truck and doesn't have any life left in it to move with. I used to be so hyper and active. But above feeling well, I wish that, even with this sickness, whatever it is...I wish I had just a little support without being yelled at or pushed around (literally pushed sometimes). They don't understand how much worse it makes me feel. Or maybe they do, I don't know. Today I'm at my wits end, so much that I am crying, being yelled at by my mom because I felt so bad I practically passed out on my bed and didn't wake up in time for something. I'm glad I'm at least alone at my house instead of being over at theirs where there is physical violence as well. But i also don't like being alone. Because I feel so weak and hurt so many places right now... I want some food (I'm starving) and can't go fix it myself....I'd also like to lay down, but I pretty much collapsed in this chair and haven't moved since. I wish my fiance' who is in England will get here soon. He's pretty much the only person who whole heartedly supports me, even if he can't understand my sickness first hand. How do you deal with being so sick and having little to no REAL genuine support?

I can't work at all. I had to quit my job last year when this started and haven't been able to work sense, much less even stay sitting or standing for a good amount of time to work. Or stay conscious sometimes. Nobody would really tolerate me having to lay down whenever I need to, on the job. So, until the problem corrects, I won't be working. Its rather frustrating. Especially when family yells at you to get a job.

Are you kidding me? I have this problem as well and never know why. I get small bumps everywhere on my body and it itches liek crazy, especially when it touches anything. I usually have them at nights. So I have to shed clothing and itch all over. One of my worst episodes of breakout happened last night. I get splotches of red but with notable flea-bite looking bumps. I never knew these kinds of things could be related to dysautonomia or POTS. I am amazed. :\

I have horrible problems with temperatures. I feel cold all of the time, but heat makes me have spells. I can't take hot showers or baths, but I can never tell how hot the shower water is because I can't feel it as my skin and "inside" always feels so cold.

My nails are amazingly fast-growing, hard, and grow very shapely - people always ask me "Are those real?" I'm too lazy to keep cutting them down (although I hate long nails) but i do on occasion.

I also keep a sort of log. My heart rate sky rockets even with the slightest movement, though my blood pressure is doing better lately. I took mine the other day. At rest my blood pressure was 120/70-something and my heart rate was 89. On standing - 110/70-something and heart rate at 130. But on some days my blood pressure is 70/50 and my heart rate is 170 when I move around or stand suddenly. So... I'm guessing (if this is even what I have - this POTS thing) that it is typical to see fluctuations to the extreme. I see them in myself and others here have seen it in themselves.

The doctors haven't given me any medication, because they don't know what the exact problem is (and they don't want to "mask the problem") so I've pretty much just suffered for a year with all my symptoms. I also hyperventilate. I can't seem to control it when I do, it is like my body naturally reacts this way. I also notice I have very poor breathing patters. I breathe chaotically without noticing, including holding my breath for some seconds, then breathing fast, then too slow. No matter how much I try to remind myself my breathing ends up in a wreck. Its disturbing because it FEELS like I can't get a proper handle on it. And whats worse is that I do not notice it until its too late, and then I feel like I'm starved of oxygen.

This is my scariest symptom with, whatever I have. It feels like I just can't breathe, a very smothering feeling. It normally occurs after I eat with/without chest or stomach pain, but sometimes strikes at random, daily. My heart rate increases right before the sensation. I have only passed out a few times from it. Chest pain usually just feels like someone has a finger and pushing it into my chest area. I've been to the ER with it, they just say my heart rate is really high and my blood pressure low, but they do not know why. It does not appear to cause damage to my heart, but it sure feels so awful. Does anyone with POTS or other dysautonomia have this problem? Its my scariest symptom to me and hard to stay calm during an episode (Which can last from 5 - 30 minutes typically). I feel really drained afterward.

My blood pressure bottoms out much of the time and fluctuates between normal and low during each day. Usually around 70/50 when I am having my worst episodes. I've never had high blood pressure. I can usually tell when I am about to have an episode because my ear buzzes and/or pops denoting low blood pressure. I have not been diagnosed with any form of dysautonomia, but most doctors have suggested this, so I am to be tested soon, given my array of symptoms.

I usually keep it in to myself and try not to let others see that I am suffering. I focus on other things to take my mind off of it when I have an attack. Sometimes I say "You've been through this before, so carry on." I hate having others talk to me when I have one, if they notice. My family is not very supportive much of the time. So I try to typically avoid them, when having a bad day.

I am the exact same as you. Same symptoms, same frustration. I used to be healthy and work out daily. I used to have a job. My symptoms started a year ago after a deadly reaction to the drug Elavil. It nearly killed me. Ever since I have not been the same. Some doctors say my plight points towards that drug, some say it is in my head, some do not know what to think. None have ever given me a real diagnoses. I have been to ER countless times, have all the heart tests, my heart looks healthy and fine. "The heart just sometimes go fast." They said. But mine produces such horrible symptoms, and they do not seem to care, as long as it does not kill me. But I do not have a life any longer. I am ill daily, though some days are better than others. Just saying I'm in your position! Never give up. I'm confident they will find a diagnosis for me soon, and for you as well! Then treatment and a cure! I'm only 24 years old. I want my life back, and by God, I will have it back one day soon.