carinara

Hello everybody, i just came home from a doctors visit. We checked my 24 hour urine a few weeks ago and today i picked up the results. Normal range my results Adrenalin ug/24h < 20,0 2,7 Dopamin ug/24h 190-450 276 Metanephrin ug/24h 52,0-341 570 Noradrenalin ug/24h 23,0-105 35,9 Normetanephrin ug/24h 88,0-444 177 As you can see, my Metanephrin is not within the normal range (mine was 570 and the normal range is 190-450) Iam a little worried now, if this could indicate a pheochromocytoma????? I had an MRT of the abdomen (incl. kidneys) 3 months ago and it was ok. I also had an catecholamin test in november 2008 my test results back then were NORA ADR DOPM 270.5 31.2 24.5 laying down 576.6 51.3 19.9 standing Iam a little worried about the Metanephrine being a little higher then normal. I read somewhere that pheos can also be in other places not just around the kidneys. I cant get in touch with my POTS doctor because he is away???? Does anybody of you know if the number indicates a pheo??? Thanks a lot carinara

Thats funny, because i experience something similar like you at work sometimes. The funny thing is, that it happens 95% of the time between 12 an 1 o'clock.Always at the same time. I also thought it might be a blood sugar thing at first but i do eat about every 40 minutes a few bites of protein, a bite of whole bread and a few nuts. The funny thing is that it always happens between 12 and 1 o'clock. Since i started to eat what i mentioned above, these panic or adrenaline attacks dont happen that often anymore instead of almost every day its now about once every 1 - 2 weeks. I had a bad attack yesterday again at 12.20. I dont understand it either.

I always carry my little electric hand ventilator which has a little water sprayer build in with me all the time, especially in during the summer. Air conditioning is not common in germany at all.

Have a look at one of my recent post. dinet.ipbhost.com/index.php?showtopic=14172&hl=carinara carinara

I noticed lately that it is almost not possible for me to look at my computer screen because about 80% of the time i get really sick with it. We have got 3 laptops and a netbook at home and it doesnt matter which one i use after about 15 minutes i get something what feels like a migrane aura but without the headache. I dont really know how to describe it well. the inside of my head feels strange and i get nervous somehow, my mind feels different than usual. Noises seem much louder then and they feel as if they would go direct through my brain it almost hurts somehow. I also notice that a metallic kind of sound like our netbook or my cell phone also create similar symptoms.I also notice that i see blue spots from time to time afterwards even hours later. Its also strange, that these symptoms dont go away when i get off the computer they almost grow stronger and they stopp sometimes after hours. I also have a computer at work were i have no problems like that at all. I remember about 12 years ago when i had my first computer i always felt very sick as well so that i had to lay down every other minute or wrote with eyes closed. It feels to me as if the computer screen cause some neurological problems in my head i dont really know how to describe them better, i just feel so strange with it and i have noticed that crying does relief the symptoms a bit. Any ideas? My partner just bought me a nice little netbook i can take with me anywhere, i really love it but i cant stand looking at the screen even though we set it into the darkest screen level possible. I tried to wear my sunglasses today to see if it feels better but i couldnt see much with them on so i just didnt bother anymore. I write this post with my cell phone at the moment because i don't want to look at any computers anymore today because i can still feel strange in my head from about 3 hours ago. Any ideas what this could be? Like i said before, i have no problem with the computer at work. Thanks a lot for your help carinara

i just wanted to let you know, that over the past 2 weeks i tried to find some options at work for me to feel more secure in case my symptoms get bad and my sister can't back me up. A few weeks ago a new coworker started to work in the office right next to mine and it so happened that her son goes to school with my daughter and that i was the only person she knew in the company. I noticed that she often talks about her private life and confides in me a lot. She also tells me about her medical problems from time to time. On a few occasions she asked me stuff like, if i would like to go for a walk with her or to the carneval (a big thing over here) and then i briefly explained to her why i cant come with her. Ever since then i notice her asking me questions concerning my health situation from time to time. Last week for example when i had to get something for some customers and it happened that she was standing next to me, she offered me to get what was needed and also told me that i could call her if i need help. I asked her if it would be ok for me in case i feel really sick to come into her office and sit down for a while until i feel better and she didnt have a problem with it. Its really a good thing, because in my office there are always people coming and going in order to see the boss and her office is much much quieter than mine. I knew that my sister would have today off because she planned it for quiet some time now and thats why a while back i also put a holiday in for the same day, just in case. This whole week i was wondering if i should take the chance and go in to work anyway even though my sister wouldnt be there , just to prove to myself that i can do it ( i did it so many times before but since i started to feel worse again last november iam more insecure again). I kept going thru my mind what i should do, should i go or should i stay at home? Really i would love to stay at home because getting up and ready for work + work is hard for me every single day and my symptoms are limitting me every day. + 2 days ago i had a very bad episode at work again were my body just set off on a bad surge and it just happened that my sister was there accidentally and covered me. When this surge hit me i watched my thoughts and all i wanted to do is get out, run away, go home, cry and so on and after 15 minutes the worsed part was over and i felt better again. So up until last night i still didnt know if i should go or just take the chance to relax an extray day at home wich i would love but at the same time i felt sad because it would feel as if i would the projected fears of how i would feel at work, win and i dont want to be a victim of fears. Last evening me and my partner also had to go to a parent night at school (the first time i went out during the week within months) and by the time it was finished and i was in bed it was after 11 o'clock. I normally go to bed at 9 and my alarm clock goes off at 5.30 in during working days. I knew that the less amount of sleep would probably cause me more problems today and so this morning when the alarm clock woke me up, i just spontaneously decided to stay at home and take my holiday as i have planned a few weeks ago. On one side i feel relieved because i have an extra day to relax before monday is here again but on the other side i feel like i have failed and that i act like a little child always planning and watching out that somebody is there to babysitt me just in case i get drapped in one of them bad episodes that make me feel helpless, not able to get up and trying to still look professional in whatever i do. I know that its ok to depend on people with this illness but i just don't want to depend more then i have to , iam a little scared that i would miss the point where i just ask for help if its really necessary. I would love to get to that point were i can feel and show how i feel wherever i am regardless if somebody i know is with me or not. Now i sit here at home and still wonder if i should have gone to work and my sisters next day off is coming soon........ Sorry, i hope iam not too complicated. carinara

I know that for many of us here and for myself as well, the knowledge that POTS is not life threatening is so very important because our symptoms very often feel so scary and threatening that we need to assure us mentally all the time that this is not going to kill us even though it feels like it. I dont like to think of anybody panicking about this video now. I watched the video and i really liked it and i think that its a great way to spread the awareness of dysautonomia in general. For many years and throughout this Forum everybody and all the doctors (mine included) reassured me that POTS is not lifethreatening. If you google any illness including flues, allergies and all the rest of it, you can always find a case were somebody died of complications of it, There is always some scary story to be found. If you google POTS you wont find anything like that. The other thing is that if somebody dies suddenly and it seems like there is no obvious reason for it, they would naturally jump to the conclusion that whatever illness this person had would have probably caused the death (for example Diabetes, allergies, asthma, and all the other illnesses that exist). Iam quiet sure that for example if somebody with dysautonomia would fall bad on their head (not due to dysautonomia symptoms but due to slipping out because of a banana or somebody pushing that person) and die from it without a witness, people would think that it must have been the POTS that caused it and if that person would have suffered from something else, then this would be the reason. Hope my writing makes sense to you?!?!?!? So please dont worry and about POTS being lifethreatening now. Carinara

Thank you all so much for your replies. Lieze: a few years ago a cardiologist prescribed me a medication called lexotanil its a tranquelizer (Bromazepam). Back then my cardiologist figured that my sympathetic nervous system is far to sensitive. He used to tell me that my sympathetic nervous system is as tall as the eifel tower and that he tries to bring it down to its normal size with the help of this medication. I took a tiny amount of it over the period of a few years and at first i experienced that it helped a bit. After i got diagnosed with POTS in 2007 they told me to stop taking it and i stopped. And you know what? I did feel better not taking it. I remember that they told me that i could take a tiny dose whenever i need it. Therefor i always have a pill with me in my handback but up until today, i never took one. I always tried to go without it and forgot about it i guess. Iam a little worried about the side effects because iam very sensitive to medications and like i said, i havent taken it for years. But you are right. This is at least another option i can look into. HoudiniCat: I can so relate to your work situation. With me its the worst at work as well because of the same reason like it is for you, i want to appear professional and not sick. Whenever i get so sick at work i cover it so well that nobody ever notices it. Even during the worst adrenaline/panic attacks i appear relativly calm on the outside but on the inside my body is going craaaaaaaaaaaazy and at some point my mind follows. Thats when i can feel the pressure i put on myself by trying to hide how i really feel. Thats mostly when i start thinking about running home because there i can be and act according to how i feel like laying down even crying sometimes. I know that i will feel better afterwards. But at work i cant do that. Sometimes i fantasize about how it would be if i would let it all out at work as well, it would surely take a lot of pressure away from me knowing that i can be myself no matter where i am. But in reality that is not easy. All i know is, that i want a safe little place when i get like that until its over. EarthMother: like you, i spend dozens of years in therapy i also always wanted to become a therapist myself and therefore i took every oportunatey i could get to learn as much as i can. I share the same opinion you do when you say that ?exposure therapy? doesnt work for us potsies. Long before i got diagnosed i tried all kinds of therapies including exposure therapy. I was told that i should put myself into as many situations as possible that normally cause my body to go into a panic state. These situations happened mostly when i went into a sauna, or when i was standing in line in the supermarket. For months i exposed myself to them situations. I went to the sauna every week and i felt so sick almost all the time. My therapist didnt believe me when i told him that it gets worse and worse. Can you imagine how relieved i was when i found out i had POTS and read what provokes the symptoms. All i read about what to avoid ,i knew already but i always put it down to being to sensitive because thats what i was told for many years. I also practise to feel really really bad wherever i am and thats a good thing to do in my book. The only place i dont want to feel that way though, is at work :-( I also practise to connect myself with my inner body like our friend E. Tolle says. It helps me to realize and feel that iam not what i think, i know you understand what i mean:-) jenwic: I agree with you, that distraction seems to help some. When it gets really bad and iam not at work, it helps me to get my cell phone out and play a bubble game. This helps me to focus on something else. Mdcountrygirl: when i was hospitalized due to extreme POTS symptoms (this was about 1 month before i was diagnosed) i had a very very bad episode in the hospital. Like you described i was struggling to breath. My Heart Rate trippled up when i was trying to stand up and i was shaking all over the place. I felt so sick and adrenaline kept shooting out of every cell in my body when finally the panic kicked in on top of all of this i thought that i was going to die. This was one of my worsed episodes ever. The nurses kept running around me and the doctors put an ECG on me. They were all very interested to see what was going on. After my system settled down again the doctor told me, that i was never at risk of something bad happening. He reasured me that my heart was fine and healthy. Ever since then, i tried to think, that if my heart goes that crazy it might be a good thing because my heart is training without me moving around. I was told that the heart makes no difference between racing due to sports or due to a dysfunction of the ANS. I feel that i do know a lot of things about handling those kind of situations as long as i feel ok and my body is in some kind of balance. But as soon as my body goes crazy my thoughts start to race and i seem to forget all that i know.... Most of the time i feel as if i can handle the fast HR quiet ok but what scares me more are the kind of symptoms i get in my head. I get vision problems and i cant focuse anymore. I also feel a pressure in my head and get very very light sensitive. My ears start to ring and i feel so dizzy and lightheaded. I dont even want to know how high my BP gets in these sort of situation. When i get all these symptoms it feels as if my lights would go out any second wich lead me to the thought what if i get a stroke now... I try all the technics under the sun to stay calm and sometimes it works but sometimes it doesnt. Its just so problematic if i get these kind of symptoms at work. I wrote before in another post, that iam lucky because my sister works in the same company i do which means that i can contact her so she can back me up. But she is on holiday soon and i can feel that this makes me very nervous...... carinara

I wrote here before how emotions effect me. It only takes a tiny amound of stress (it doesnt matter if it is positive or negative) for my body to go into adrenalin rushes or panic modus with all the POTS symptoms playing up big time. Most of the times i can watch these surges come and go without really getting anxious or panicky about it. But sometimes (especially at work) i start to panick and i get very hectic and anxious because i guess iam afraid of dying or getting a fit at work?!?!?!?!?As soon as i feel that way i get the thought, i need to go home, but i usually stay there and try to get over it somehow without anybody noticing it. Before i got diagnosed with POTS i saw a therapist because for over 10 years doctors couldnt find anything wrong with me and decided that i might suffer from anxiety or panic attacks. They had no clue when i described them the symptoms i get mostly upon standing and the rest of it. (even though i showed them how my pulse doubled up from sitting into standing). Thats why i decided to see a therapist to try to work on the adrenalin rushes (then so called panic attacks). I learned a lot and it was really reasuring to hear, that a panic attack wouldnt kill me. I practised to just breath through these surges and wait them out.I also learned that i shouldnt avoid situations that would cause a panic attack. I was told that people who get diagnosed with panic attacks are usually healthy and that a critera of the diagnosis of a panc disorder is, that there is no confirmation of an illness that could cause these kind of symptoms, they must be purely psychological. With this knowledge i lived for many years prior to my POTS diagnosis. Whenever one of these surges appeared i stayed quiet calm because the doctors told me that there is nothing wrong with my body and a panic attack wont kill anybody. Now after i got diagnosed with POTS i notice, that iam not so calm during them episodes anymore. I wonder if people with POTS can stick to the same advice concerning panic attacks like people without POTS. I heard a million times that POTS is not going to kill us but i also notice, that whenever i get one of these surges for example at work i get insecure and i ask myself if its really safe for me to sit and wait it out without leaving the office. Every day i get confronted with many situations that touch me emotionaly and that for set me into a hire wire state like for example: Today at work i got excited because a coworker visited to show off her newborn baby. It was also the birthday of my boss and i wished him a happy birthday I got involved in a discussion for only a few minutes... and many more situations.... My therapist from a few years ago (prior to the POTS diagnosis) told me to stay in them sort of situations and dont run away and leave them. Am i still safe doing this??? Even though i have POTS and because i have these symptoms due to an ANS dysfunction? My BP gets really high in during these situations but doctors told me that i shouldnt worry about it. My Heart is ok. I have just a tiny MVP How do you alle handle these, can you realte somehow? Can i really expose myself without risking big damage like a heart attack or stroke? Because these are the thoughts that come into my mind as soon as i get into such a situation. Should i just sit at home and never do anything to wake up any emotions that set me off in order to not provoke my ANS? I dont want to die only because i watch an exciting movie or because i say good bye to a friend who moves away. All these situations set me off big time Thank you all so much for your help. carinara

I also experience them kind of symptoms. A few years ago it got that bad, that as soon as my body got under some kind of tension, i wasnt able to focus anymore. I was extremly sensitive to lights as well. Because of a great Eye doctor somebody recommended to me, i found out that i have an impaired binocular vision. He told me that it's quiet common, but because of the testing lasting a few hours, 'normal' doctors don't do them kinds of tests. I bought myself the right classes (with a prisma in it) and i felt 100% better after it. That happened about 4 years ago. After a long period of really feeling better in that department, i now get them symptoms again. I constantly put my classes on and then take them off again. I just doesent seem to find a way to get comfortable. The light sensivity is also back again. I plan on going to the eye doctor again, I think that i might have to get new classes. Here i found something about impaired binocular vision: Binocular vision is the term used to describe vision in which both eyes are used together. This type of vision is advantageous as it gives a wide field of view and the ability to detect faint objects is enhanced. It can give steropsis which is parallel vision provided by the eyes' different positions on the head giving precise depth perception. Binocular vision is usually accompanied by single vision or binocular fusion which is a single image being seen despite each eye having its own particular image frame. Lack of binocular vision is normal in babies. Adults that do not have binocular vision can experience distortions in depth perception and visual measurement of distance. Double vision can also be the result of a lack of binocular vision. Binocular vision can become impaired by any visual condition where the binocular visual skills are underdeveloped. An eye exam should include the testing of these skills. They can be tested by judging the ability to move the eyes across a sheet of paper, the ability to use both eyes together, the ability of the eyes to move and work as a team, depth perception and the ability to transform images from a vertical to horizontal plane. Binocular vision impairments can result in partial or total loss of stereoscopic vision and need to be treated. Most of these impairments are easily detected due to their obviousnes

Thank you so much for the pat on the back. I can relate so much to your work situation because mine is very similar to yours. carinara

thank you all for your replies. I think you are all right when you say, that i should confide in a co worker if necessary. In 2004 and 2007 i was off sick for 4 months each. Back then i didnt have a diagnosis yet and i was in an out of hospitals trying to find out what was wrong with me. When i finally got diagnosed in 2007 and returned back to work after another 4 months off sick, i did have a talk with my boss and explained to him that i might need to lay down from time to time. He told me back then, that he doesnt want to loose me as his secretary and that he didnt have a problem with me laying down if its necessary. So i guess he wouldnt have a problem with this now either (3 years later). Ever since back then, he also gets up to get his own coffee 90 percent of the time instead of asking me to get it for him, so i guess this is also a sign that he still remembers that there is something wrong with me. I had a talk with my sister yesterday about this subject, she reminded me, that there is always the possibility for me to ask our apprentices to get things if i cant get them and she is right. I watched myself at work today and found out that iam doing quiet well on my own most of the time and I dont need my sisters help every single day. Its just sometimes when i feel really bad its so reassuring to know that she is just a few seconds away in case i need her help. Today for example she had to go into a meeting, and my first thought was, what if i start feeling bad now? Who could i ask for help? I could feel my body reacting to this thought and realised that its my thinking that caused my ANS to react. I practise every day to try to live in the present moment and dont project fearfull thoughts into the future. But sometimes it just doesnt work all the time yet. When i know my sister is at work i feel much much more relaxed and if i know she is not there, i feel tense and stressed and this tenseness and stressfullness sets my body off. I know that our ANS reacts much more sensitive then the ANS of healthy people. But i also know that normal people who get panick attacks feel kind of the same way and there ANS reacts out of order as well. So what i want to say is, that i dont like the thought that just knowing that my sister wont be there makes me more stressed inside and my ANS more allert and that because of this reason i wouldnt go into work. BEcause then my thoughts are responsible for my POTS to act up because of my fear of being allone at work. If i can manage most situation at work on my own i figure i should be able to manage them as well even if my sister is not there. Hope that makes sense. And so what if people see me when iam at my worst, there are just human beings as well and knowing that its ok for them to see me like this takes a heavy weight of my shoulders. I just have to keep telling myself that this is not going to kill me. Thanks a lot carinara

Thank you very much for your replies. The thing is that i dont really like to be so dependend on people especially my sister at work because that means that whenever she is sick for a day or in a meeting or if she needs to leave work earliler, i will start getting nervous and thats not good. Before i was diagnosed with POTS i was very sick as well and because doctors kept telling me that there is nothing wrong with me and that i am just anxious and panicky i went to a therapist. He told me that i should seek situations that make me feel nervous just to overcome my fears. Well, i always knew that there was something major wrong with me, but i still stuck to the advice my therapist gave me and made it somehow. I managed a lot of situations prior to my diagnosis just because nobody believed me an therefore i got insecure and pushed myself to my limits all the time. Now i know whats wrong with me and i know what to expect and right after my diagnosis i was so reliefed and happy and i was more easy going because i knew this is not going to kill me. But now somethow i feel insecure again. I feel as if i need to manage my days at work on my own if necessary, otherwise i freak out everytime my sister cant go to work. Sorry if this sounds confusing.

hello everybody, i would really apreciate your input on this one. I work in an office for 28 hours a week. Iam really blessed because my sister works in the same company. I feel terrible in the mornings, thats why i get up at 5.30 and slowly get ready and waking my daughter up all sitting down on an office chair with rolls on hoping that i will be more stable when my sister picks me up at 7.45. I only have to walk a short distance plus i use the elevator but by the time i sit on my chair in the office, i feel bad and it takes a while before i can concentrate and start my work. My boss and my co workers dont know much about my condition and iam a specialst in hiding it. In 2007 i missed work due to POTS for 5 months. Thats when i also got diagnosed and when i returned to work, i tried to explain to my boss (iam his secretary) what is wrong with me. There are so many occasions at work where i feel awfull and they happen every single day. Iam very lucky, because i sit on my own. That allows me to sometimes just sit there trying to get my symptoms under controll. And whenever i get really bad i can call my sister and she helps me with whatever there is to do. I know she is just a few offices away and that really makes me feel secure a lot. Back in November my POTS got worse again and i had a few bad POTS attacks at work. I called my sister and she came down picked up my work, locked it away and sat with me in a dark room where i hided so nobody would see me like this. She also drove me home on a few occasions before. She covers for me if needed. So whenever i start feeling really bad at work, i know that she is there in case i need her and thats a great help for me mentally. Up until last September i was ok whenever she was on holiday or had a few days off, but since i got worse again a few months ago, i feel more insecure again. I just found out, that she will have a few days off soon and this makes me very nervous. I thought about taking the same days off so i dont have to be at work without her but i realize that this is not a good solution because i let my fear and nervousness win then. The problem is, that my body reacts very very strong to any kind of stress and nervousness and i just know, that i will feel very stressed when i go to work knowing that i have no insider around to help me if needed. I catch myself worrieng and creating nightmares about this and then i remind myself that i can do it, but the next bad thought is just around the next corner again. I dont really know how to go about it. There isnt really somebody at work i can talk to about this and i sit in a place were many people and guests walk by if they want to go see the boss. What do i do if i start to feel really really sick? Sometimes when my boss asks me to get something for him and i cant get up, my sister will help me and nobody finds out that she got it. What do i do when she is not there? When i start feeling really really sick, all i want to do is get out and home as quick as possible there wouldnt be time to lock the things away or explain to somebody that i dont feel well and so on. My mom who lives only a few miles away would pick me up any time. I know that. But i also know, that the 15 minutes that would take her to come to pick me up are soooo very long. Where would i lay down? What if somebody sees me an calles an ambulance? I dont want my coworkers or my boss to see me shaking crying and panicking. Any ideas???? I wish i could stay calm in them sort of situations because the extra stress just makes my system go extra hire wire. Iam usually a very calm person and i hate it that i kind of panick about this situation. I try my best to stay positive but i dont know if its workin. Thanks a lot carinara

Hello everybody, whenever i get emotionally involved (it doesnt matter if it is in a positiv or in a negative way), my body goes crazy and my symptoms play up big time. Iam a secreatary in a big companie with many co-workers and whenever somebody turns to me because they seek help or want to know my opinion about something personal, that makes my inside react emotional, i get sick. I love helping people, i love to listen to their Problems or stories but as soon as i get emotionally involved my heart rate starts to get really high, my vision gets blurry, i start to shake and i feel sick. It feels that my bodies reaction has nothing to do with my mental state because my mental state is quiet calm. I feel as if i can handle most things mentally. It feels as if my Body has its own mind as soon as iam in a Situation wich involves a tiny amount of tension. The same thing Happens when somebody for example tells me something nice like a birth of a child, or if i watch a sad or happy movie,or when i receive or write an emotional letter. Iam a very emotional Person and i like it that way but in order to live with this reaction i cant spend 24 hours a day in a meditating state of mind, Now i hate to go to weddings or birthdayhparties and such things because of the way my ANS reacts as soon as i get emotional. One thing that helps me is crying.Crying is a great thing that helps me calm my ANS down again. But i cant cry in publik or at work, thats just no option for me. Does anybody else experience this sort of thing? How do you handle it??? Is there anything i can do about it? I dont want to train myself to become a cold heartet?person without feelings (its not possible anyway:-)) Thanks a lot, carinara

actually when i feel this way, i dont feel like laying down i wanna run and get the extra energy out of me. But i cant of course, i just keep sitting where i am. When i experience my other POTS symptoms laying down helps almost evey time. But i dont think it will help with this symptom. I also dont really think that its an adrenaline surge because i also know how they feel and i didnt have any tachy with it. I normaly have no problem sitting up all day long as long as my legs are a little elevated of the floor. I felt this way before when i had a little alcohol many years ago. Its also strange that it happens very often between 12 and 1 o?clock. If i do get my period within the next few days then i guess its to do with my hormones because i have had strange reactions to it lately. I hate it when I dont know why something like this happenes and what i can do to prevent these symptoms or what you can do to stopp them. They just come out of the blue. From one second to another and like i said, laying down doesnt help with this one.

Hello everybody i would appreciate your opinion very much, maybe you have an idea what this could be. Today at work around lunch time i started to feel tense all of a sudden, i got very lightsensitive, i felt as if my BP igot really high, my Heartbeat was only a little higher then normal. At the same time i felt cold and an inner shakin, my hands got ice cold. I couldnt think or concentrate anymore. It felt like a full blown panick attack without panick. I get these episodes from time to time my HR is not high when these occur only a little higher than normal but no tachy. These episodes last for about 30 minutes then they dissapear again. Within them 30 minutes i have to pee at least twice. I know that these episodes (like today) had nothing to do with a low blood sugar, i also didnt eat something different then usually (i always eat the same food at work, every day). Is it possible that my body can only take a certain amount of workstress and tensness and then unloads itsself with an attack like that? Today i just watched the symptoms without panicking, just like a researcher. What is it that makes me urinate a lot in during these episodes. What are they? Any ideas? My periode should be comin soon, maybe hormones? I experience POTS symptoms every single day and know myself very well. I know how my body reacts due to wrong foods, hot or warm temperatures, in the mornings, in stressfull situations, low bloodsugar, and so on. But what i dont get is what the cause of these episodes is. I sat in my chair didnt do anything to provoke any symptoms just did my work. I remember trying to be funny and tell a joke to my boss and shortly after that these episode began. Was it the possitive stress? Talking makes me dizzy a lot, but it was just 3 seconds??? Thanks a lot for your help. carinara

Well, it seems like my BP is never low. Iam a "blood pooler" though, and it does feel that all my blood is dissapearing in my lower body when i get up or on other occasions. My BP is still high then but i get presyncopel. It feels as if my Bloodvessels dilate on many occasions i know this feeling because it happens to me when i eat carbohydrates or when a doctor described me a diuretic in the past. My BP always stayed hight though.

Hello everybody, is it possible to black out or faint with high blood pressure? My Bp is always on the higher side but i still get all the presyncopal symptoms like blurred vision, ear ringing and so on. Even if it feels like my BP is low, it never is. When i have one of these episodes and i measure my BP its always high. How is that possible?

Thank you all for your replies. Yes, singing, reading loud and playing the flute are also big no goes for me. The pain and muscle tightness that come with it feel like the "coat hanger pain" that many POTS Patients suffer from. I am going to see my physiotherapist next monday.He helped me about 2 years ago when i felt very bad. I hope he can help me on that one also. Take care, carinara

Hi everybody, since 2 weeks i feel really really dizzy and lightheaded whilest talking. Its so bad that i wasnt able to do a few important phone calls today. I also get very dizzy and lightheaded only from looking down or turning around. My neck and shoulder muscels also hurt very much. I have experienced these symptoms before but at the moment they are as severe as i last experienced them about 2 years ago when i was very sick. Iam so glad that i have a few days off of work. I cant hold a conversation at the moment and i catch myself whispering a lot. Do any of you have some ideas what i can do about this? Thanks a lot, carinara

I trained myself so i dont have to go to the toilet in during the night because it makes me very dizzy with hot and cold flashes, i also get bad vision problems and ear ringing. In fact its ALWAYS a big problem to get up for me after sleeping. Therefore i have an office chair with rolls on parked next to my bed. I sit on it and roll wherever i have to go .

EarthMother, thank you so much for your post. I just looked Dinet up to see if anybody responded yet and when i saw that you were the first one who wrote something, this put a smile on my face. You are so right by all you are saying and deep inside of myself i do know it as well. Its ok to get help in them sorts of situations but when i feel so bad, i seem to forget it or iam not able to connect with this knowledge. Sometimes it seems as if all i have learned so far about POTS, life in general and spirituality is hiding somewhere. But if i become still and, meditate and trust in a higher power, i know all is going to be allright. Its ok to get help i guess because we are all there for each other. I would love to offer my help to somebody in need as well. But then there are times like at the moment, when everything is upside down and i just react as if i never experienced symptoms like that before. Everytime it hits me that hard i fall into the same trap but i can feel the panick is getting a little better each time. I had so many things going on the past 2 weeks (3 courtcases, a hospital stay, about 6 doctor appointments scans, Ct's and on top of it i just bought my apartment) all this appointments and work i could only handle because i have people around me who support me and drive me everywhere and stay with me even to hold my hand if i need them to. Iam very blessed i know. Its just me thinking back, that without their help i couldnt have done these , and this makes me feel like i need a babysitter (again)....., but i try to remember now what i already know and what you reminded me of EarthMother. Reading about your Blood sugar problems make me sad. I mean i just tried the whole milk with nuts you suggested to me, yesterday and today and i can tell that its helping me at the moment but then on the other hand its not helping you anymore. Maybe i should stop mine again...., Iam sending you healing thoughts and dont forget, our bodies are just trying to heal themselfs and therefore sometimes there are doing funny things. Kayjay, thanks for your post. I noticed that a really good cry helps me a lot in them sort of situations as well. Iam glad that you also have people around you who help. Thanks again, carinara

Since my POTS became worse about 3 months ago it seems like every other week one of my many symptoms playes up big time, i mean much much more then when iam not in a POTS hole. Then after a little while the symptom settles down again and another symptom playes up big time again. First my HR was much higher then usual acompanied with all sorts of bloodregulation problems, then my stomach and digesting system went mad, now my bloodsugar is totally unstable again + my dizziness and lightheadnessnes is much much worse it feels as if i have no blood left in my head when i stand up or even turn around. Looking back at my last big POTS crashes in 2007 and 2004 i remember the same weired thing. It seems as if my body goes through some kind of pattern to get into some kind of balance again. Is this possible? Has anybody else experienced this? Up until about 3 months ago, i knew more or less how my body is going to react to different kind of situation. I do know my body well by now but ever since this bad POTS episode started back in September i cant really calculate how my body responds anymore. Its a big struggle and what gets me is, that i start feeling anxious again (like in 2004 and 2007). I am a secretary and work 28 hours a day. At the moment its a very big challenge for me to do so and get through a workday, i can only manage it with a lot of tricks and arrangements. Iam lucky because my sister works in the same companie. That means whenever i have to secretly lay down (so nobody finds out), i call her and let her know where i am. That way i feel safe and she can cover for me in case somebody asks. When my body goes crazy at work i feel i can only stay calm because i know that my sister will come and look after me and i also know that she would drive me home if its necessary. If i didnt have her i know that i would panick at work when i start getting and episode. This tiny extra bit of stress (because i knew i couldnt turn to somebody) would just push me over the edge and my symptoms would develop into massive no controlable ones. The same at home, iam usually ok during the day when iam alone, i make sure i have everything i might need around me. But i do admit, that i feel much safer if somebody is around me...., This weekend for example, my boyfriend had to go on a business trip and i was nervous about staying alone at home because the nights are very difficult for me because i cant get up. My body needs ages before its ready to get up (thats why my alarmclock normally wakes me up at 5 so i can leave the house at 8). there are often situations when my boyfriend looks after me when i wake up with tachy and other stuff. He brings me what i need and i feel safe and looked after where as if i was alone i would panick because i couldnt get up and i wouldnt know when to call somebody for help. It feels that as soon as there is somebody around i can give the responsibility away because i know that somebody can get help if its necessary. When iam alone and this happens i feel helpless. I feel as if i have to stay allert to watch my body and decide when and if i should ring for help. Another thing is that i cant relax at the moment, because as soon as my body gets tired it feels like its shutting down on me, so i dont take a nap (even though iam so tired) because it takes ages for my body to get in some sort of balance again its leaving me sick for a long time afterwards. All these things are the reason because i asked my sister to stay overnight last night and tonight iam planning to stay at my parents house with my daughter. (remember my boyfriend is away) But even though i feel i made the right decision by making it as comfortable as possible for me, I at the same time constantly put myself down because of not staying alone at home in during the night and therefore acting like a little child instead of a 38 year old. I feel as if i need to be babysited and this leaves me feeling dependend and weak. On the other hand i know, that as soon as my body starts to respond more normal again, and i can trust my reaction again, i will feel more independend again. This morning for example i woke up with bad tachykardia and just about made it to the toilet then i returned to bed until my lightheadness, ear ringing, HR and so on felt better again. I could stay calm because i knew my sister was asleep in the other room ready to help me if i needed her. She left around 9. I still didnt feel ok but i decided to go shopping with my parents and my daughter just to get out of the house. When they picked me up at 12, i felt kind of ok, thats why i went into a shop with my daughter. After about 10 minutes i started to feel as if i had no blood left in my brain so we went back to the car and i put my feet up. I started to feel so dissorientated and lightheaded again that i spend the rest of the shopping trip in the car. If i would have been on my own i would have panicked so i was glad that my 13 year old daughter was with me, (even though i didnt tell her how bad i feel). It just helped me to stay calm knowing that somebody is around and can get help if necessary. Now after 1,5 hours i feel a little better again and wonder why i need a babysitter at times. Is this normal in them sort of situations? It feels as if i need somebody to take care and babysit me when my body acts up like that. can somebody relate? My parents just dropped me of at home and want to pick me up in 5 hours to stay the night, i ask myself now if i should cancel staying at my parents house tonight and just try to survive the night on my own with my daughter? Just to prove to myself that iam not acting like a 5 year old? I start to wonder were anxiety starts and were selfcare starts and if its ok to get help like that or if i should try to manage on my own, Am i too anxious? Iam normally a very calm person but when my body starts going grazy i can only stay relaxed and calm if iam not alone. Any ideas on how i can change that? Is there some kind of therapie out there on how to learn to stay calm if it feels as if one is dying? Thanks a lot for your help and sorry for this long post. carinara

ok, my new plan is to try the nuts with the whole grain bread now. Thank you again and take care, carinara