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Gayle, Sorry you are having a bad day. Yes I am aware that I amfor the most part highly functional, but I am nowhere near where I was before. I was a total SPAZ. Not in a bad way...in a good way. I could handle school (6 classes per semster...in a microbiology major) playing 1 sport for my school and one sport outside of school in the same season, and still found time for a 20 hour a week job and a crazy social life. I never stopped, never got tired, never got ill. Now I can go to school and work but I am much more tired. I actually have to sleep 9 hours a night and get headaches, sometimes dizziness and basically live in fear of the unknown every day for a year now...it was a year yesterday...I try not to dwell on it. I am scared cuz nobody can find anything wrong and all the major research centers I try to get into tell me I am too healthy and will make a completly revcovery in about a year. Well hello it has been a year! Where is my recovery. I dont like not having a plan in life. This has put my entire life on hold. I almost didnt go to school this semster cuz whats the point of going to med school if I can do my job to its fullest after all the hard work. I cant play sports anymore and Sports are a HUGE part of my life...they are my way of relieving stress. I had olympic scouts watching me at one point...now nothing. My fiance hates me now cuz I cant do what I used to do and is not sure about what kind of future we will have. I know I will recover, its just my intuition, but I really want to know what causes this so I wont worry abou tit returning in the future. This is not my destiny by any means...dont ask I just know, but this illness has hit everyone of my pet peeves hard, espically my biggest one...not knowing why!!! I have to know why...I've always been this way. I am very very stubborn and persistant and I believe that IF their is god up there, then he made me this way to fight crap like this and to never take no for an answer...I never give up...perserverence should have been my middle name. I just surf around here, to look for clues about what avenue to look into next, and search for hope. Through this site and others I have learned that a lot of people DO recover...I have talked to a lot of them and I can see their similarities...and I fit right in with them. I realize that they dont lurk around these sites any longer, because they have a life again. But I still would pop in from time to time, because believe it or not I want to help. Even when I do recover, I still will remember this horrible nightmare and wish to study medicine and become an ANS doctor and help people who are suffering. I have found out the hard way that there is a lack of knowledgeable ANS docs, and I want to fill that void. Even if a few years down the road I decide that medicine is not for me, I would want to be an ANS activist. I believe that I am a special person and that 1 person can make a difference. This illness has made me into a bitter and sour, and I just want to get better so I can be that happy-go-lucky, smiling person again. I would go to counseling but I dont believe in it at all. I mean we dont have mental problems...we have a physcial problem causing a mental problem...if ya took the physcial problem away...poof...the mental one would be gone too. Besides how is someone not suffering gonna tell you how to cope with something devistating...they are gonna go home to their big house (bought by your money) with their loving family (dog and all) and then use more of your money and go to Hawaii for a romantic getaway...they really know how to tell someone how to cope with horrible things...I remember when I was aneroxic my parents made me go to therapy...ha that lasted one session...the lady was huge!!! She told me that what I was doing was unhealthy, and I looked at her and told her that eating all those krispy Kremes wasent exactly doing wonders for her cardiovascular system either! So that ended on a good note. Thats why support groups are awesome! Real people suffering with sympotms helping others. They know whats going on and how hey might feel. Thats just my opinion though and if counsleing works for you then thats awesome too. What ever floats your boat right?? Anyway I want to go have a drink and watch TV so I gotta go before I write a novel here. Just babling and trying to answer your question. My life has changed...and I will always be changed...even after recovery...I will appriciate life more and slow down a bit from time to time...and I will always wish that everyone who suffers from this orphan syndome finds answers and relief and can find a life once again. I feel sorry for everyone on here especially the ones who were hit with this crap overnight with prior history. At least if you have family members with symptoms or have had weird things like fainting or exercise/heat intolerence in the past you can piece things together and be like "well that *****...genetics/birth defects are a bummer...but when you get hit out of the blue...well if that is you, you know what I mean...it is really that much harder! Gotta go. I hope you feel better Gayle, Nina rest your muscles, and everyone else...dang heal already!! If only it was that easy right!

glad it was sunday and you got to take a day of rest before going off to work.

Thanks Nina...its just scary cuz I dont know what is causing it and it quite frankly looks ugly! I hate it. It wasnet too bad though so I guess I'm lucky. It kind of makes sense to me now. My veins could have been damaged and lost thier tone...so I need to lift more weights to improve their tone so I can recover. That would explain why when I lay down my BP drops a bit more than it should...cuz blood is still pooling because the vessel capasity is high...you dont have to be vertical to have blood pooling a tad bit. It would also explain the rise in BP I guess. What lower body exercise are you refering to?

Why would this be some kind of joke??? I dont think this is funny at all...its scary!

Well the last two nights were quite the nights for me. My fiance and I took his little nephew to the monster trucks. They were pretty cool but really loud. Dang all of our ears were ringing the last two days. His nephew stayed overnight with us and we played video games until like 3AM...then the next morning the kid decided to wake up at like 8...way too early for us...we like to stay up late and sleep in. Anyway we had to go to a birthday party yesterday at 3. Then we had my fiances company party at 7. It was a blast! They had gambling stuff set up. I made it my priority to stay with his boss at the craps table all night. I won the equliviant to 2.3 million dollars. (I wish it was real money) We had a auction for prizes at the end of the night with the money...we left with gift cards and a playstation 2. It was fan. Anyway I stood completly still at the craps table for at least 2 hours. I felt fine. No lightheadedness, no headache, no plapatations nothing. But after I left the table my fiance said dang your legs look kind red. They were pretty red but nothing to write home about. My question is why would they get red like that? I know blood pooling but why does it pool? I dont have EDS or anything, I am so not flexible!! Also I never get a drop in BP when standing, and as long as I have my beta blocker, my HR is fine. In fact my BP ususally rises when I stand for a long period of time...doesent that mean my veins are constricting or could it be my arteries are consitrict extra tight to make up for the lack of venous constriction? Is this nerve damage or denervation and why dont I feel symptomatic when this happens? What can be done to help this?

My lowest was like 95 (sleeping) highest was like 150 (also sleeping) average was around 110 I think. That was a while ago. After my ablation my resting HR is in the high 70s and on some rare occasions the high 60s. Before POTS my resting HR was in the high 50s...I was in such good shape! I'm a basketball player...or should I say I was...hoping to be again. I can kick some *** on the court despite me only being 5'4"!

Wow that is great news, I hope everything works out for her!

Actually Any, I do have the heart rate increase every time I stand up...I guess it just deosent bother me too much. My heart rate can be really high and I dont seem to notice it too much, unless I am trying to play sports of something like that. I do take a beta blocker and that lowers my standing heart rate from like 110 to 80. I have been DX...well...kinda...my doctors exact words were..."I think a mild case of POTS is messing with your system, but its very mild and I very sure you will heal in about a year." He is Mayo Clinic trained...tried to get me in there cuz I insisted but Dr. Low didnt think my case was severe enough and said I would most likely get better in a year or two and I should just live my life. So nobody even wants to see me. Just cuz my symptoms arent severe dosent mean they dont bother me and interfere greatly with my life. I just want to know whats going wrong so I dont keep thinking "Do I have a brain tumor?" and thoughts like that. Anywho, I know you dont have a family history over here,I was just saying that most do. You dont have to have a family history either per se, you might have abirth defect causing this stuff...you seem to have alot of muscle waisting...thats odd and scary I bet Have you look into mitochondarial issues? Thats the next avenue I would search into if I were you. I think I was reading a post a few weeks back about exercise intolerance you said you have it as a child right?? I'll quote ya. "I don't know why your doc would ask this, but I definitely had crappy exercise tolerance growing up. I often would not be able to finish the 600-yard run we were required to do when I was in fifth grade. 600 yards isn't even that far. I never gave much thought to it, but I guess I have lately because of my health problems. I am guessing maybe it gives the doctor insight into possible cardiovascular issues.Amy " So you did have something not quite right back then...not in the shape of POTS but something was fishy? Humm dosent it make you wonder. I'm gonna build a big MRI type machine that can scan a body and pinpoint what is wrong and where. Well if I want to do that one I better get started on my engineering degree...lol

TO be honest I dont really think I have POTS, but I do have the symptoms sometimes...I dont have problems standing but I do get an increase in heart rate when standing (without my beta blockers of course) and I get fluxuatations in BP as well. Sometimes my BP goes high for no reason at all...I'm just weird...I dont really know what I have...maybe a chiari??? thats my theory of they day...I just think of one thing, get tested for it and then go on to my next cuz my test results are ALWAYS normal! So go figure! I stress out too much cuz I know I will just wake up one day and be fine again...but I will always be afraid that it will return again, which is why I really want to know what caused it and what is going on...so I can avoid whatever I did to bring this on...by the way I havent eaten a hamburger since I ate the one that I am 99.9% sure caused my symptoms. I was the "model" of health prior to this...people used to envy me cuz of it...m fiance used to tucker out at like 2am and I still wanted to party, he would be like" **** dont you ever get tired?" He would always get colds and get pissed cuz I never understood his misery of stuffy noses and coughing...people still envy my family cuz they are all so healthy...so I have no predispasistion over here at all...which is what makes me so frustrated...it seems like everyone that gets this is predisposed to it in some way shape or form...except me...Faint??? whats that??? I have never fainted EVER! I didnt even know what it felt liek to be sick...I never had headaches very often...only when I go to a high pollen area like Missiouri where my grandma lives, due I get a sinus headache...tired whats that? I've never been tired. Infection??? I only had 1 sinus infection and tonsilitis in the 10th grade...I actually know a few others (6) who have no predispasistion...and they eventually got "normal" again so I guess I should have hope...just getting tired of waiting and putting my life on hold over here...Ok I dont need to vent anymore...I dont want to start crying or anything now do I? Many prayers needed over here...I hope my prayers are heard. Ok shuting up now. I feel a good cry comming on.

I fly about 10-12 round trip flights a year. My flying time is like 5 hours...6.5 when you add the lay over. I change planes in Dallas, Texas and walk to the next gate fine...well first you get on the tram and then go to the next terminal and then RUN to the next gate with all my stuff...I feel fine afterwards...but thats just me and I seem to be different than most on this site anyway...but dont worry about the flight; it will be fine!

I guess I'm the other way around. I never get sick and never had. My fiance just had like 3 horrible colds...yesterday he had to come home from work early it was so bad...we kiss, share the same cups and he breathes on me all night, yet nothing for me. Last year he had the flu really bad (before I got POTS) nothing for me! I have an awesome immune system. I'm not good about taking my vitamins either, other than a B complex. Must be from all the OJ I drink!

My dad had a benign meningioma on the left back side of his head in his cerebellum. He ended up getting a MRI becasue his neck was hurting. It turned out that he had a pinched nerve causing his neck to hurt; it had nothing to do with the tumor and he was lucky that his MRI of his neck caught it. They saw a shadow on his MRI and then did one of his brain and found it. Two weeks later he had it out. He is doing great now-a-days. His balance is a tad bit off and it hurts to turn his head too far around from th scar tissue but he is still my normal loving dad. Watching him go through his surgery was the hardest thing I have ever had to witness. It sucked. He was in the hospital 24 days cuz they caused a stroke by cutting a blood vessel to removed all the tumor. My dads tumor was huge...one of the largest his neurosurgon had ever seen...and my dad had no headaches...no major symptoms...a little bit off balance, had a tad bit of trouble swallowing, and couldnt feel hot or cold with his right hand. Strange, but they were so mild he thought nothing of them. I am just scared I will have to go through this too. I hope not and my CT scan was clear only 6 months ago...looked great! So I know I should not worry too much...it probably part of hypovolemia and POTS but I still get scared as I am never sick. My headaches seem better in the morning and come on with activity later on in the day. Thanks for your response. What kind of cyst did you have?

Good luck with the surgery. I had a ablation done with POTS or whatever it is I have, and things went fine. I was told that they were going to give me some meds in my IV to make me sleepy and I would feel it burn going into my arm...ha! As soon as I saw the orange gunk hit my arm I was out. When I woke up my head was spinning and my doc was there talking to me. I was speaking back but have no idea what I was saying...too groggy...but however, the effects of my meds wore off very fast and I was soon more awake than I wanted to be. Things will be fine. Rest and recooperate,...as much as a person with POTS can anyway. Once again good luck!

Does anyone know if POTS symptoms can actually be symptoms of a brain tumor? I have a headache in the back of my head for like 4 days now...its very mild but scares the heck outta me. I have had a CT which didnt show anything but am still scared. I never heard of POTS symptoms being a sign of a brain tumor...maybe a brain stem tumor though and they are deadly and occur 80% in kids under 15. I just get scared cuz my dad had a brain tumor about 10 years ago, I dont want to go through what he did...I might not be a lucky as he was. He turned out fine. I pray that I am fine too.

Hi Naomi, Wow I remember I was talking to you on the IST board a few months ago. Wow I cant believe that this has happened to you! I feel so horrible. These types of illness should happen to murders and child molesters...not members of society that can actually contribute something to this world. Anywho I decided not to have another ablation, thank god. Something in my gut told me not to do it. My parents also were against it, and I really trust my mom intuition. I guess I can say that my failed ablation was really a success. My EP barely ablated anything as that was his method; he is very frugle the first time, and if there needs to be a second surgery, so be it...its better than a pacemaker or junctional tachycardia! I'm sorry that this has happened to you. Have you ever been told that you might still recover from whatever is causing the POTS, and then your heart might be ready for a pacer and then; well you can get on with your life? As for me, I am still trying to figure out secondary causes to my POTS. I am going to have an MRI to look for a chairi malformation as I do have a lot of neck/back of head pains, and a history of weird neck problems in my family, so maybe an answer will lay there. I really hope so as this is a possible cause of POTS that can be cured with surgery. Not fun but better than life with POTS. Wow I am still trying to express my sympathoy for the successful ablation. Too bad that one was a failed attempt too. Its funny how a failure can still be a success. I hope you sue that doc outta his pants. There is another memember on this site: goldicedance I think that has the same problems as you do. The only difference is she has a pacer from the whole experience. Maybe she can help you out more than I can. I know it is hard for you, but try to keep your chin up and hope the dysautonomia goes away...do you know how you got POTS??? Virus, family history, preggers??

I've had this for about a year and that only infection I had was a sinus infection that I got before I even had my sudden onset and 1 yeast infection. So no I dont get sick but then again I never really have ever been sick before.

Rita I was under the impression that you were able to do much more...sorry for that...you have such a positive attitude...for that I commend you...keep it up! I just meant that we were similar in our onset (stomach virus) and we both seem to be very persistant. Yes I feel very lucky that I can do so much and with so little meds, but my heart still aches for a full recovery, and I think that in time I will make one. I really hope you do as well and it seems that the top doctors say you will, and you gotta believe them...they see this stuff all the time and probably make the best predictions. I'm glad you got a good prognosis. I am timid however, of going to palces like mayo because I think it was you that said you went there and all your tests came back fine. That would frustrate me greatly. Although it also gives hope because it means that your damage isnt great enough to pick up on the tests, which is a plus because there is less to heal. I'm just not sure I want to spend all that money on any testing center, givin the fact that I am able to do so much, and that means most likely my tests would be fine and they would just tell me to wait it out and my recovery will come with time. I dont need to spend thousands of dollars to figure that one out! Gayle, I'm glad to hear that someone else has BP similar to mine. Did Mayo tell you why this occurs or if it is anything to worry about?

Thanks guys, This is just a strange symptom for me to deal with. I've had this stupid illness for nearly a year. I just want some improvements as the tinest improvement would throw me back to normal. I'm not too sure about the baroreflex being damaged either...but wa wondering if it is under control of something else in the nervous system that can just make it go out of whack. Laura, I dont think I have blood pooling as I never get red legs/feet, nor do they ever hurt and I dont really have a lot of trouble standing up. Maybe though, this is because I do rise my BP in this response. Rita, We do seem to share a lot of similarities with our illness it seems dont we? As for Mayo, I have tried to get in. First I tried to get into the Scottsdale Clininc cuz it is much closer to my southern California home. They laughed at me pretty much and told me that my problems dont sound autonomic in origin but I could go on the waiting list for an internest. No way. The same thing happened at the Rochester location. Same story. My neuro even knows Dr. Low and when he tried to get me in Dr. Low said that is is probably post-viral and I will be better in a year give or take. How nice he can make this assumption based on not even looking at me. So so much for Mayo. Claypso, Thanks for the information, I remember reading that article too. I never really had this problem before all this POTS stuff so I think it is just due to my autonomic issues. Tearose, Yes I did have an eating disorder many years ago. Five years to be exact. I dont know for sure but I assumed that if it were going to hurt me, then it would have done so long before now. Even when I was aneroxic, I had tons of energy and still played sports. I was only aneroxic for about 4-5 months...then I got better. I had fatty liver and hypothyroid as a result. My endo said they would improve as I re-nourished myself. To his surprise I healed amazinly fast! He was shocked at how fast I got my levels back up to normal. My body likes to heal I guess. Where is that healing power now when I need it? I have searched for issues reguarding eating disorders and ANS issues and found none. If eating disorders caused this kind of stuff then a lot more people would be having this issue. Thats just my two cents.

Hi to all the night owls who might be up like I am! I just was thinking as I usually seem to do too much of anyway, but I had an important but tricky question over here that seems pretty important. Anywho, I was just wondering if a damaged baroreflex could cause hypotension when supine. I seem to be at 120/80 standing and drop to like 105/65 supine/sitting. This seems to be a new symptom and is not realted to my salt/fluid intake. I was just wondering if this had anything to do with my baroreflexes or not. Most literature about baroreflexes seems to be with high BP which I also tend to have when I'm overly stressed. Can this also be related to hypotension too, and what can be done about it? Does this lessen the chance for remission? This might be a question for one of the "super smart" veterns on here. Have a good night.

True Nina that it dosent matter in terms of treatment the how you got sick, but I am under the impression that it does matter in the prognosis. If I can really find out that I had an autoimmune reaction (hence the autoantibodies test) to my stomach virus/bacteria whatever, then I can be highly assured that I will recover, givin the fact that I have no deeper underlying connection/predisposistion to autonomic problems as I can assure you that nobody in my family has ever shown problems like this (or any problems to be honest...I have the healthiest family history of anyone I know...no cancer, diabetes, genetic diseases, heart disease...only mild high blood pressure on my dads side). That being said, and the fact that I have never been sick before, I think I have a great chance of recovering and am just looking for support until the day I do. As far as seeing a doctor, I have. He is not an autonomic specialist per se, but he did study at Mayo Clinic under doctor Low and said that I might possibly have a mild post viral/bacterial automimmune thing going on and he assured me I would recover with time as he has had other POTS patients much worse than I was and they are healthy productive members of society now days. He also said that sudden onset POTS is very likely to recover...isn't that what you said too? I'm just here looking for hope/support to keep my spirits up that I will recover and get well and work hard and help patients that are suffering from these diseases and donate money to helpful foundations and so on. Another reason I like being here is that I can obtain a lot of information about dysautonomias so I can use that more in medical school. Thats why I ask so many questions! Hope this clears things up for ya. We dont hold grudges around here do we? Tasha Oh yeah Veryblue...I would love to talk you as you seem almost identical to me...veryblue where are you??

Humm...very true Rita...but if you dont have nerve damage (or I mean if it healed)then what is causing your symptoms...did they bother to tell you that? I'm not a big fan of places like Mayo if ya didnt notice. They just treat ya like a rodent in some experiment.

Forgot to mention that I have had an ADH test that came back way low...doc said it was cuz I drink too much...but I only really drink 2 liters a day and honestly have been doing that way before I had autonomic issues. I was a basketball player and always stayed very hydrated. Never seemed to bother my ADH then. Go figure! But to answer your question I think you would have to drink an enourmous amount to wash out ADH...and even then you wont wash out ADH...your pitutary gland senses when you need ADH to be released...more when you are dehydrated and less when you are consuming aduquate liquds. Make sense? How much water does Nicole consume?

Hello, I know that if you drink too much water you can actually wash out your electroytes. So I think it would help if Nicole drank a sports drink like Propel in addition to pleanty of water.

Julie: Yes there seems to be an autoimmune association to dysautonomia. My GP feels this is what happened to me. Ok I'll admit it...I told him my theory and then he agreed that it made perfect sense...(I bow as I win my nobel prize...lol) According to research I've seen, this seems to be the case in post viral/bacterial onset POTS. An autoimmune mechanism attacks the nerve meylin sheath and not the virus...this also explains why people who get POTS due to a mild virus are more likely to get normal again...the meylin sheath simply heals itself. Hope this make sense. As far as meds go...I dont seem to be sensitive to anything at all and never was. But might I remind you that I never took a perscription drug until I was 20 (with the exception of birth control) and POTS hit me suddenly...now I take beta blockers. But I have taken tylenol, motrin, cough syrup, sinus meds, clartian and stuff like that with no problem.

I know this is probably a stupid question (although I know that no question is stupid.) but why do people woth POTS develop hypovolemia? If you indeed have nerve damage then why would that cause hypovolemia? Hope someone knows as this question has been naggin me greatly. Thanks in advance!