carinara

Hi firewatcher, it can get very hot in europe in summer and the airconditioning is not as common as in the US. So please take one of them hand ventilators (Wich spray water as well) with you. You can use it whenever you get to hot, its a great thing, i always have it with me. A seat cane is a great help as well. In case of long lines i always find a cool place to sit and let my partner stand in line, he calles me whenever its time for me to join him. I go most places if its not too hot and with my mini ventilator and lots of drinks i can manage ok. I sit down whenever i need to. On the floor or every other place. All the best for you

Long before i knew i had POTS I used to enjoy smoking. But then all of a sudden i noticed that i felt sick straight after inhaling the smoke, almost all the time. My HR increased dramatically 90 percent of the time and i got hid with lots of different symptoms within a few minutes. This went on for a few weeks. It made me feel so bad that i just quit smoking right after i colapsed one da. Up until today i never had the urge to smoke again (this was about 5 years ago). The knowledge about how smoking affects my body and the benefit of not having to experience these bad episodes whilest smoking anymore just made me stop just like that. The benefit of not smoking was much higher then the need to get some nikotin inside of me. It just made klick in my head and i never once thought about having another one (even though i smoked for many years prior to that) I can imagine that its much more difficult to quit smoking if smoking doesnt affect your well being straight away and If people are nor really ready to quit because they still get some kind of benefit out of it. My Dad for example, he was a strong smoker all his life. When he had a heart surgery 8 years ago, the doctors told him, that if he doesnt stop smoking, he will die because of it. He just stoped as well, and has never touched a cigarete since then. I really believe that if you really (from deep inside) want to quit smoking you can do it. Its more a psychological addiction than a physical one. There are a lot of good books about stopping smoking out there as well. You probably already know Allan Carrs Bestseller book. Meditation helps as well. In Europe you can also buy cigaretes which are made out of herbs ( no nikotin at all). If you ask people why they smoke, Some people think, that they only smoke because they need "something" in their hand that smokes,and the social thing with it. When they buy these cigaretes they find out that they dont taste bad and their first reaction is: wow, thats great, i just smoke them now. But after 2 or 3 cigaretes they find out, that there are no good, because all they really need is the nikotin in it and not the smoking cigarete in their hand. Thats when some people realize that they might as well just eat nikotin out of a jar . That sometimes just give some people the necessary reason to stop. All the best carinara

I can totally relate. I loved my garden and gardening, i love planting and watching my flowers grow. But since 2 years i had to cut them activities down a lot. Standing and bending over is just no good anymore. Today was a very nice day over here and i got some flowers yesterday and decided to plant them. I always sit on the ground whilest i do something in the garden. I put all the things around me so i dont have to get up in between. It wasnt hot outside, so i could tolerate sitting there for a while and it was great. Before i got sick, i had so many flowers in my garden that it took me ages to water them in the summer. But now the heat makes it impossible for me to water them. Thats why i only have a few flowers in during summer now. I can understand how frustrating that is, but on the other hand, i remember the times were i was bedridden and couldnt get up at all, thats why i still apreciate and am thankfull for what i have got now. I hope that you will get better soon, and please try to enjoy what you can do. All the best carinara

Ok, i wrote before, that i suffered from ANS Symptoms for more then 20 years before i got diagnosed in 2007. I went through very bad POTS flare ups in 2000, 2004 and 2007 that left me being bedridden for a few weeks + I wasnt able to work for 4 months each time. When my doctor + all the other doctors he send me to, couldnt find anything wrong with me, he decided i must have a panic or anxiety disorder. In 2004 just after the bedridden time was almost over and i could stand for at least 1 Minute, i changed my doctor and found a very nice new one who was willing to listend and understand my condition. At that time, i slowly started to work again and tried to get through the day With lots of adjustments and difficulties. Everytime i went to see her (about 2 times a year) she asked me how i was feeling, and i told her, that i feel a little better but that i still have lots of symptoms every day. Well that went on for almost 3 years. She always told me that she thinks i manage very well and she always let me know, that she really likes my positive way of thinking.(Thats was all before i got diagnosed with POTS in 2007). Sometimes i told her about my previous doctor telling me, that my symptoms are due to anxiety or panic and i also said, that i honestly believe that there is something else going on. I told her, that i only get anxious when my body goes crazy. If i feel ok, i never get anxious. After my body got more into balance again, i always looked back and remebered how anxious i felt during Them flare ups in 2000 and 2004. Then the latest flare up in 2007 occured. I went to see my doctor and told her about my poor health. The first thing i said was: I can feel that i start getting sicker again, but i am not scared yet, the symptoms doesnt cause me to have anxiety or panic yet. I told her, that i can see my body acting out of order and i can watch it come and go, without any emotional reactions. Within 2 weeks it got worse and worse, i had very bad tachy, i wasnt able to stand up and walk to the toilet. At one point my HR was so fast and loud, my boyfriend heard it when he sat next to me, he didnt know if he should ring the ambulance or not. My doctor came to see me, and i said that i think something major is wrong, but iam not scared yet, i can still watch it come and got without any emotional Reactions. A few days later i had them ?fits? almost every day. When i called my doctor (this was still before i was diagnosed) I told her about these strange episodes that seems to come every day now, even whilest laying down and about all the other new symtoms. I then told her, that i can feel the anxiety creeping in now but that i can still manage. After this went on for a week, i told her that iam anxious now, i told her, that i cant stay at home alone anymore because iam so anxious and panicky because i dont know what to do and react when these episodes start. She then turned around and said,: Well thats ok, everybody would be scared if they would experience these kinds of symptoms. A few weeks after that i got diagnosed. It took another few month for my body to get back to some kind of balance. Even though i am symptomatic every single day , i dont panick anymore because I now know what iam dealing with , and i know this is not going to kill me. (Where as before, i didnt know what it was), But if i ever get a bad flare up like the past 3 times. I KNOW, that my anxiety will come back again. I believe that every human being on this earth would get anxious if they would experience these kinds of symptoms. Even though i meditate an take great strenght out of my ?religion? that help me every day. I know that if my body ever gets totally out of control like before, i will slowly fall into being anxoius again. This feeling will stay with me for month until my body gets more under control and i feel i can trust my body more again. Then it will slowly dissapear again (thats how it was with me for the past 9 years anyway) All the best carinara

i remember having a routine blod test a few years ago and my cortisol was sky high. In fact my doctor said that she never seen such a high cortisol reading. I went through more testing then but somehow they never found anything. Since then i must have had at least 10 more bloodtests (due to hospital stays before i got diagnosed) but i never heard of my cortisol being too high again?

hi hopefulcase, congratulations on your new job. I honestly believe that it will get easier the more you get used to the new enviroment and people. You survived the first day and thats the most difficult and stressfull one. Wait and see as you get used to your new daily routine it will get easier. Congratulations also that you didnt go home when you felt sick you stayed in the situation and waited it out. I think thats very important because next time you feel like that at work you will know that you can make it. Before i got diagnosed and didnt know what was wrong with me, i had to leave my office more often because i didnt know how to calm my symptoms down. Now i can work with my limitations quiet ok. I told people that i cant stand long and thats about all they know. To be honest, thats all they wanted to know anyway nobody ever asked me more detailed questions about my condition. After i returned back to work after a 5 month long bad POTS episode in 2007 i decided to tell my boss whats wrong with me, he didnt really understand it . I honestly believe that he and my co workers think iam in perfect health again because they think i function so well. But what they dont see is how well planed my work is. I never get up, exept to go to the bathroom and i have 100 little tricks to get through my workday. I honestly believe that when your training is over and you start working on your normal work you will find also little helpers to help you, maybe you can also look for a spot were you could lay down for a while if you have to. That way it will show you, that you can also get through a flare of POTS symptoms outside your home, this will give you more confidence. I always think that it would be better for me to get really sick at work and my coworkers would ring and ambulance because they wouldnt know what else to do, then if i feel very sick all alone at home and i wouldnt know who to call. (We know that this condition wont kill us but sometimes it sure feels like it doesnt it?).I wish you all the best. Take care of yourself, make sure you can relax and calm down after you get home, iam sure you will make it.carinara

Hello again, first i want to thank you all for writing back and sharing your opinions with me. I just want to give you a quick update on the current situation. Two days ago, my Boyfriend changed into Mr. Nice guy again. All of a sudden he is in a good mood again, spents lots of fun time with my daughter and helps around the apartment wherever he can. Please believe me when i say, that his characterchange doesnt impress me at all. I have been there and seen it many times before. Last night i brought his mood swings up in a conversation and for a change, he listened. When i talk to him, i often think we live on different planets. When i say a, he understands b and in the end its always my fault anyway. Well last night he said, that he honestly believes that there is something wrong with him. He admited that he knows that he is out of order at times but he seems not to be able to control his anger. 1,5 years ago, when i told him that he needs to seek help otherwise he will loose us, he agreed to get therapie. It took a whole year before his psychologist had an appointment available, meanwhile he went to see a neurologist to get a prescription for the psychologist. A very good friend of mine told me, that he might have a borderline disorder. So i bought myself a book and searched in the internet about the borderline illness and to be honest, i really thought or think he has got something like that. So he went back to the neurologist (because he read about it as well and also thought that he might have it), the neurologist told him to talk with his psychologist about it, because he cant just tell him if he has got it or not, so he gave him a prescription for the psychologist saying that he might have a borderline disorder. When he first saw his psychologist a few month ago, he told me that they got on really well together. When i asked him detailed question about the counseling he told me that his psychologist doesnt think that he is a borderliner. He also said, that children get on everybodies nerves at times and that its normal to get mad sometimes. He even came home ones telling me, that his psychologist explained that his temper is due to his nationality (he is turkish) and that it always takes two to argue, WHAT???????? Then my boyfriend told me that his psychologist said that its necessary for me to come and join them because otherwise he doesnt know what else to work on with him. (that was after 4 hours of counseling and he is already healed ?????). At that point my boyfriend got really confident in thinking that he must be ok because his psychologist said so. That was the point when i decided to write his psychologist a letter in wich i described my boyfriends behaviour. I choose to write because i know i will be nervous and my POTS Symptoms might play up big time on thursday when our appointment is. I might just have to concentrate on sitting and breathing and my dizziness will most likely disturb my clear way of thinking and talking whilest being at that meeting. (Oh how i wish i could just concentrade on talking , but instead there are so many other things that distract us due to silly POTS Symptoms) So i will print everything out and take it with me, i also hope that i can sit down straight away, and that its not to warm in his office so i can manage ok. I dont know what Thursday brings, i just know that i need a plan. Maybe we can work something out on Thursday. On the other hand i might get there and the psychologist and my boyfriend are best buddies and they both end up telling me that iam just tooooooo sensitive. Lets wait and see what happens If you dont mind, i will all let you know how it went. Thanks for listening, carinara

Thank you all for replying. That means so much to me. I just want to give you some more detailed information, (if you are interested) so you can get a fuller picture of the situation iam in. It is not my first relationship with an abusive partner. In fact, my ex-husband (father of my child) was an addicted gambler (without me knowing about it for years). He was treating be really bad as well. In fact, he was more abusive then my partner now. When i was still married (this was about 8 years ago), i was totally dependend on my husband financially because i was working in his company. Back then i had my first real POTS episode were i was bedridden for a few weeks. But the doctors couldnt figuer out what was wrong with me and thats when my ex husband started to think i made it all up, he punished me every day because i couldnt to things as good as before. For years i thought it must be my fault because he is treating me so bad. But when i found out about his gambling and started to tell a friend about his behavior, she told me that its not my fault and that he ?s got a major problem. I started to read about gambling, i saved money, i read all the books about abusive relationships i could find, i went to a counselor and to an organisation who treats gamblers. The day, when my ex-husband put me against the wall with his hand on my throat was the day i left. After a short period of time, i had an apartment and my current job. I was very hurt and i didnt ever want another relationship again. A year later, i met my current partner. Like i said, i didnt look for a relationship but he tried so hard, he even followed and surprised us to a holiday in spain that i went on with my parents. After a little while, everybody loved him, especially my daughter (she was 5 years old back then). My boyfriend was an singer and actor and performed at a local theater for a few month. Shortly after we met, his job was over and he was ready to move back to his city (about a 6 hours drive). Where his next job was waiting for him. But he decided to stay with my daughter and me and so he moved into our apartment with us after a short period of time. We still live in the same apartment, so it is my apartment all the furniture is mine as well. He was unemployed for over 2 years, so i supported him. Now he?s got a job. Iam financially not depended on him. I still have the same job i had, when i left my ex-husband 8 years ago. I can pay my rent myself, just like i did before i met him. But i must admit, that his monthly part of the rent (because since he?s got a job, we share the rent), makes it easier for me financially. And when i couldnt work for 4 months in 2004 and 2007 his earnings helped as well. After a few months, he started to have these mood swings and he started becoming abusive. I still remembered all the books i have read and information i have had about abusive relationships, but he was different, he talked openly about his "temper" and that he always had it, even in his previous relationships. (and he is still good friends with his ex-girlfriend today). He told me about his violent childhood with his father beating his whole family. He never hit me or my daughter ever before, and if he ever does (like my ex husband once) then i will end this relationship, even if iam bedridden and cant get up. Thats for sure. Last year i told him, that i was going to end this relationship if he doesnt get help and works to controll his agressive side. Previous to that i organised meetings with several family counselors to talk about the problems. He said from the beginning, that he knows,,that talking about his problems wouldnt help him, but to show me his good will, he would come and join me. At every counseling, i was trying to explain that his mood swings come out of the blue, but the different counselors always said things like: you have to find a middle way or just communicate better. I read all the books about communicating in relationships i could find and tried everything i could to make things better, but its impossible with him. Its like being with a small child at times, if he is happy he is in such a great mood and everybody around him must be happy, if he is angry about something, he seems to let it all out on us immidiately. It feels like as if he cant control his impulses, like a small child. Dont get me wrong, sometimes there are periods of time, were he is totally in balance. From last august on until 4 weeks ago, everything was more or less ok. He is funny and all my daughters friends love him and by the way, he seems to be able to control his anger when somebody else is around anyway). He can also be very caring and loving. Whenever he gets mean though, i dont just let it happen without responding. If it happenes that my daughter is around, i stand up for whats right and tell my opinion or tell him off. I make sure that my daughter and i go into a different room or ring my sister, or if i feel up to it, we leave the house. My daughter is also allowed to talk about how she feels about his moods, to the rest of my family. So its not a secret. Everybody knows about his agressive moods sometimes. And he knows as well that everybody knows. Iam very open about it, he should know that people know and that they think its not ok. My daughter is in the middle of puperty now, she isnt scared of him. In fact, i think she see?s him more like a brother typ. When he treats her mean, she tells him off as well, she gets up leaves the room and i talk to her straight away and we both agree that he is out of order. Sometimes he appologices, but most of the time he doesnt. Like i mentioned before, this coming Thursday i will join him with his counselor. It seems like they havent worked anything out yet. My boyfriend shouted the other day that talking doesnt help him and even though he tells me he wants to change, i dont see that he really does want to. Last night i wrote his counselor a letter, i thought its a good idea if he knows how i feel and what really happens at home. I dont want to spend another counseling hour talking about "why men dont like to talk and women cant park". Thats somehow always how he gets away with his behaviour. In his mind he thinks thats normal . I havent slept much the last few days because all of this is getting to me. My HR shoots up faster and higher as usual when i get up, my symptoms are worse due to this stress and tomorrow is monday and i have to work 8 hours. I dont know what Thursday brings, i wish i had a normal relationship and i dont know what will happen next. He doesnt talk to me about his moods. They just happen, he screams and forgets about them. Can he change? Or is it just a waste of time for me to try again and again? Carinara

Hello everybody, iam embarassed to write about my relationships problems and POTS but i really need some of your advice right now. Iam in a relationship for more then 7 years now. My boyfriend is like a ticking time bomb at times. He gets very verbaly aggressive towards me and my daughter and he screams and shouts and gets so mean and there is nothing i can do about it. When he is in a bad mood he will laugh at me when i cant get up. He knows how stress effects me (hyperadr. POTS) but he still picks on me and wants to argue with me about every little thing. If i try to talk with him, he tells me to shut up and gets aggressiv, when he sees me having to lay down because of my high HR he sometimes says things like: oh do you feel bad again (in his ironic voice) and calls me all kind of names. Whenever he is in a good mood, he is a totally different person. He goes grocery shopping and takes my daughter and me out on little trips, he is even really funny and does some fun things with my daughter wich i cant do anymore because of POTS, he also looks after me and cares sometimes. If i were healthy, i would definately leave him, nobody diserves to be treated like this. The past week his moods were extreme agressive, i even had to ring my brother in law to try to calm him down because my body couldnt handle the stress anymore. Oh how i wish i could just run out of the house in them sort of situations, but i cant. My sister who knows about his mood swings (and friends as well) tell me to through him out of my place and to split up with him. And beliefe me, if i would be healthy i would. But iam so scared. Who gets up at nights in case i have a bad episode and need urgent help? Who walks with the dog if i cant?, who drives me to doctor appointments hundrets of miles away if i have to go there? I cant do that on my own. If i split up with him then all the little fun things my daughter can do with him (when he is in a good mood) are gone as well. Then we cant even go on our booked holiday and i promised my little one that she will see the ocean this year. Because of my suffering from POTS, she doesnt have a mum who can to lots of stuff anyway. I also work 28 hours a week and my day is well planed so i can manage the POTS symptoms, work and all the other stuff. I cant do it all on my own though. All my friends live far away, my parents are always travelling around the world and have their own life. My sister is also working and even though she offers her help, you all know that there are a million tiny little things that we need help with at times. I know i wouldnt ring her in the middle of the night because i cant get up to use the toilet on my own. On top of this all, i got a letter in the mail yesterday. My landlord wants to sell the apartment i rent of him, and he offered me a very nice price in case i want to buy it. If i decide to buy it, and split up with my boyfriend then his part of the money is missing and what if i get as sick as in 2004 and 2007 and cant work for 4 month? How nice it would be to have somebody on my side who treats me right with respect and love. Every day i try to be the best person i can be, i hate stress and arguments, i always try to talk things over and treat people with respect. My head is spinning right now, i have a bad headache because of his bad attacks today. I supposed to relax on the weekends to get some energy back for my next working week. His mood is better now, he even laughed with my daughter a few moments ago. Please tell me what you think? If my friend would be in a situation like this, i would tell her to split up. But i have POTS,and a job + being a single mum. when my friends tell me to get rid of him and i tell them about my struggle due to Symptoms, they just say things like, well you will manage or dont panic. BUT THEY DONT KNOW WHAT DYSAUTONOMIA FEELS LIKE. Sometimes my partner goes weeks without being mean to me, then i can really relax and enjoy our family life, but every once in a while he totally goes mad. On thursday we have an appointment with his counselor, my partner has been there a couple of times but without succsess. No i have to go so we can talk about his agressiv side. I am very nervous about it already because i dont want to end up being told i am to sensitive or something stupid like that. Because my partner is a very clever man and knows how to play being every bodys darling. Thanks a lot. And sorry for the long and confusing post. Carinara

Maybe the smell caused your POTS Symptoms. When i have a bad POTS episode, i get to a point were all kinds of chemical smells have this kind of reaction to my body. Nail polish, hair color, even a lotion made me feel realy sick ones.

Hi Dani, I can relate. When i was a child and a teen, i also remember that i got dizzy spells and that something wasnt quiet right. Back then i was a member of a orchestra and i couldnt play my flute whilest standing up. There were many occasions were i didnt feel right but nobody took me serious and somehow there were times In between were the symptoms were gone i guess. When i was 25 years old i had my first child. Soon after i noticed more dizziness, lightheadedness but i tried to Ignore it . But after a while it got so severe that i couldnt stand up anymore without getting severe symptoms. My heart was pounding fast and strong, i was lightheaded and couldnt think straight, i got scared as well because i had To look after my little one and there was no way, i could even hold her up myself anymore because of all these weired and strong symptoms. There again, no doctor could help me. So i tried to go trough this phase on my own. I was Bed bound for a few weeks, but slowly my body got more into balance again, and the severe symptoms dissapeared again. Dont get me wrong, i still felt dizzy and sick at times, but i tried to ignore the symptoms again. I always knew something wasnt quiet right because there werent many things i could do without getting dizzy and tachy, but sometimes i felt ok, so i pushed myself to do sports again, even went on a marathon (which made me sick, but i thought everybody would feel like this). For years later, the same thing happened again. All of a sudden i was bed bound again for a few weeks. I went to the hospital, nobody could help me, they said everything ist fine. So i had to fight this one out on my own again. And after a few month my body got more in balance again, so that i was able to manage my life again (like my job, houshold stuff, looking after my daughter and so on) There again, i was never symptom free, but the symptoms were lighter and not so severe, and i tried to ignore them again to an extend were i went on a pilgrim trip in spain in a hot summer walking with a heavy back pack miles and miles. Even tough i felt so sick all the time, i tried to practise mind over matter and remebered that all the doctors told me, that it is just in my head.... Then in 2007 it happened again. I went back to being bed bound for a few weeks with the same severe symptoms again. There again, doctors told me, that there is nothing wrong with me, That was the time when i searched and found this wonderfull website. With the help of Dinets physicians list, i got diagnosed and iam now in contact with great POTS specialists. They all told me that POTS is not progressive. The severity of POTS symptoms change from day to day, sometimes from hour to hour. Knowing and finding out about POTS made all the difference to me. Now i do as much as i can to try to control my symptoms, and as long as i stick to my routines and tricks, i can manage ok. I look more after myself. I adjustet my lifestyl to my condition and i hope that if the symptoms ever get as bad as they were again, that i Can stop some of the severity by knowing what iam dealing with now. Iam happier now then i was in the past 10 years because of what i know now. POTS is normally not progressive, it wont kill us and who knows, maybe one day the symptoms dissapear again. I wish you all the best carinara

I can totally relate. Before i got diagnosed with POTS i talked to many doctors about my weired symptoms. Since nobody could help me i tried to convince myself that there is nothing wrong with me and that its just in my head. When i went into stores i usually got bad symptoms straight away. I got lightheaded, dizzy, and couldnt walk straight, i felt drunk and disorientated. My HR shot up and i had to leave the store on regular bases only to sit down somewhere. When i told my doctor he said, thats anxiety. So i went to the store almost every day, to proof to myself that its no anxiety. I studied my reactons and tried to learn from them. First i thought that it must be the bright lights that make me feel sick, than i thought it must be the moving around, turning my head around, so i tried to always move my whole body, not just my neck. It didnt help also, this game went on and on. Now after knowing and learning about POTS, i dont put any any pressure on me anymore. I still get them symptoms almost all the time. At work for example, there is a long hallway, and whenever i have to walk on it (on the way to the bathroom), i feel like iam drunk, sometimes i cant walk straight, it feels as if i just came out of an elevator. Whenever i turn around quick (even sitting down) i get like this. I also get like this in the cinema, noisy crowded rooms and so on. Or in restaurants with candles on the table (i always have to blow them out, otherwise i cant sit there long because of the candle light). I dont go grocery shopping anymore, i wait in the car whilest my partner goes into the shops. But if i really need something and get excitied about something i want to buy, i go into a mall or a shop. I know my limits much better now, so i sit down, as soon as i feel my symptoms coming up. I even lay down, if i have to. I know, that these trips make me very ill at times,thats the reason why i dont want to take that risk by just going grocery shopping. But i take the risk when i really want to buy something wich happenes about 8 times a year or so. carinara

Thought I would share....have a great weekend :-) When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the two Cokes. A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls . He then, asked the students if the jar was full. They agreed that it was. The professor then, picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then, asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.' The professor then, produced two cokes from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed. 'Now,' said the professor as the laughter subsided, 'I want you to recognize that this jar represents your life. The golf balls are the important things---Your family, Your children, Your health, Your friends and Your favourite passions--- And if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like; Your job, Your house and Your car. The sand is everything else---the small stuff. 'If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you. 'Pay attention to the things that are critical to your happiness. Spend time with your children. Spend time with your parents. Visit with grandparents. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf ball first---the things that really matter. Set your priorities. The rest is just sand.' One of the students raised her hand and inquired what the Coke represented. The professor smiled and said, 'I'm glad you asked. The Coke just shows you that no matter how full your life may seem, there's always room for a couple of Cokes with a friend.'

Hi Gwen, i also had blood sugar issues for many years but ever since i changed my diet about 4 years ago, i can handle them ok. For me its important to eat tiny little meals at a time (not more then a few bites) spread all over the day, i only eat food that doesnt make my bloodsugar spike up quick. i avoid sugars, white bread and only eat food that keeps my blood sugar more stable. I also experience a dramatic worsening of symtoms right after eatin carbs (like potatoes or rice) 2 POTS specialists told me, that thats because carbs widen the bloodvessels and therefore cause my HR to go crazy. You probably know that eating big meals (well big for me is more then 10 bites) causes blood pulling in the stomach to digest the food, so thats a big no go for me as well. Since i got POTS eating has become a well planned issue for me, i dont remember when i had a spontanious meal But iam glad that i found a way to keep my symptoms more under controll. All the best, carinara

Hello again, Iam happy if i can help you, with some more informations: Prof. Dr. Jens Jordan (Director of the pharmacology institut, medizinische Hochschule Hannover) is the most experienced expert in Germany. He worked with Prof. D. Robertson in Nashville, TN for a long time. The Professor who diagnosed me, recommended him to me. (Because i was searching so urgently for an experienced expert). I contacted Prof. Jordan at the school of medicine in Hannover and he scheduled me an appointment with his 2 assistant medical directors who are very familiar with POTS , iam very glad that i finally found somebody who knows and got experience with POTS. I found out, that his whole crew moved from the autonomic section of the charite hospital in berlin to Hannover a few month ago I?am not sure, if there is still an autonomic section in berlin, but i would imagine there is. If you need further information, please feel free to contact me via Email. Wish you a nice weekend, carinara by the way, i also take a tiny dosis BB 4 times a day. The dosis is so small, that normal doctors dont believe it would help much. But it sure helps me a lot. My BB is called Dociton 10mg. I take 5 mg in the morning and at night + 2,5 mg around lunch and in the evening. Iam very sensitive when it comes to medications, in the past i suffered lots of bad side effects. But never with my BB, this tiny dose works very well for me.

Hi Cordelia, welcome on the Dinet Forum ! Iam also from europe (Germany) Finding Dinet in 2007 really changed my life. With the help of the physicians list on Dinet i finally got diagnosed after suffering for over 10 years without getting any help from my doctors. Reading through the posts on the forum helped me so very much, it felt as finally all the different symptoms and health problems fell into place and for the first time in my life i knew what was happening with me. Now i have a great POTS specialist in germany. Maybe you want to think about travelling to germany to see a specialist? All the best wishes carinara

Great answer firewatcher, i will print this one out for me:-) (since english is not my original language, i sometimes have a little difficulties putting the right words down to express what i really want to say) Thanks carinara

Hi Brianala, i just want to let you know, that i can totaly relate. I experienced the same sort of things before i got diagnosed. I was so sick for more then 10 years, pushing myself all the time. During that time I went through a dramatic divorce, had to hold down my job to earn some money for me and my 2 year old daughter. It was so hard and i was sick every day. Sometimes i couldnt stand up at all. I tried, pushed and went over my limits almost every day. Doctors kept telling me that they cant find anything wrong with me and that i should just try harder, and i tried and tried up to an extend where i had devastating episodes all the time. When i got my diagnosis in 2007 it totally changed my life. I am so relieved that its not just in my head. I still work and iam still a single mum, but most of the pressure is gone now. I know so much more about my health situation now, that is a big plus and means that i now have the tools to manage my daily life much better. Now i feel that all the pushing i have done in the past helped me to get to know the reactons of my body better. That means that now, i dont put as much pressure on me as i used to do before my diagnosis (because i know about POTS now). on the other hand i also know from my experience that i can push (if necessary) and it wont kill me. I look after myself and try to work with my limitations and its much easier for me since i got my diagnosis. I didnt get lazier since then, i just use my energy differently now to get through the day. Iam lucky because i am a secretary and can sit all the time. I also need to lay down for a while after i come home + take breaks and take things slow but I found a routine that works for me, (hope it stays like that). I wish you all the best, take care, carinara

Hello again, thanks for the other link, i will watch it later on. I thought that people on here might have already seen the youtube link i postet earlier. I also think its funny and i really like the set up. It?s 11.25 (almost lunch time) here in germany at the moment. So its time for me to fix something to eat, and for you to go to sleep. :-) good night wishes from across the ocean. carinara

Hi Suzy, thanks for sharing. After i watched the video, i searched myself and found another very good one. Maybe you also want to have a look. There is also a Part 2 iam thinking about making my own POTS Video in german. I havent found any of them yet. There are so many english videos out. thats great! All the best carinara

Hi firewatcher, nice to hear these news. After reading last weeks post about EDS, i really got worried about having it myself (the vacular type of eds really frightened me). Even though i have almost no symptoms , it really made me nervous because i can bend my fingers and feed a lot and so can my daughter and my sister.+ i have a mild mitral valve prolaps I contacted my POTS doctor ( he is one of the main POTS specialists in germany) and he told me, that he doesnt think that i have any form of eds, especially not the dangerous vascular type i was worrying about. He also said, that (the more severe eds) usually gets noticed in childhood or later on because of severe symptoms and that i shouldnt worry about it.. He sent me a very new and interesting link, maybe you would like to read it also. http://www.ped-rheum.com/content/7/1/1 (Iam glad that i have the opportuntey to contact my doctor for questions like that, this fear of might having this vascular type of eds really scared me and made me feel more insecure again. After getting diagnosed with POTS and learning about it, and finding out that it wont kill me, this vacular eds thing rally got to me, i hope i can let it go now.) all the best carinara

I go to bed between 9 and 10 at night and get up at 5.45 in the morning. I normally sleep ok (exept when i have a bad POTS flare up) I always feel the worse in the morning. I take my meds whilest iam still in bed an wait until they work a bit. Then i slowly get up and sit on the couch for a little while to give my body the opportunatey to get used to the upright position. After that i roll around sitting in my office chair, wake my daughter up and get us two ready for school and work (I always sit and never walk around in the mornings). Getting up that early gives me 2 hours before i have to leave for work. I can do all the things slowly then, otherwise it wouldnt work. By the time we have to leave the house, my body got a little adjusted so i can manage the mini walk to the car ok usually. In my experience sticking to this routine works the best for me. Whilest i had a real bad POTS episode and couldnt work for almost 4 month in 2004 and 2007 i had the opportunatey to sleep more and longer hours, but this didnt do me any good. Sleeping in or taking naps in during the day makes me feel worse. Even on the weekends, when i have the chance to sleep longer, i usually dont do that anymore, because it makes me feel more symptomatic overall. I usually make sure, that i never take a nap in during the day because my body takes hours before it adjusts to beeing awake again. In my experience i feel the best when i get up early and move around and do something. When i just sit and lay around i feel much worse. Resting during the day is ok, but having a nap is a big no go for me. More then 8 hours sleep is no good for me either. I also found out, that i can rotate the hours as well, like for example if iam on holiday, i can go to bed around 1 in the morning and get up at 9 again, that works ok as well. carinara

Hey jump, i know what you mean when it comes to work. I am working 28 hours a week as well. Like you, iam also a very positive person and try to make jokes and cheer everybody up. When i had my las very bad POTS episode in 2007, i couldnt go to work for 4 months. Thats when everybody realized that i must have some kind of "serious" illness ( not just a flue). When i returned to work afterwards i did explain my situation to everybody and thought that it would stick in their mind from now on. When i am at work, people usually never know and see when i feel bad, because i sit on my own (iam a secretary) and i already have so many little tricks that help me through my workday that i seem perfectly fine to my colleques. For example: My workplace is 4 miles away from my home, therefore every night (when i usually feel best POTS wise) i drive my car there to get a park spot right in front of the building and not 300 meters away. My partner drives behind me and picks me up whilest i leave my car parked there over night. In the morning, my sister picks me up ( she works at the same company). she drives me right in front of the entrance door of my office and then turnes around to find a parking spot somewhere ( usually all the close parking spots are gone by that time). So, i get out of the car, go straight into the building, take the elevator (iam the only person using it) and walk straight to my office to sit down and wait a few minutes for my body to calm down again. BUT WHAT PEOPLE SEE is: that i am in a good mood walking quickly to my office, telling everybody good morning with a smile on my face and getting on with my work. In their minds i must be ok again, because even that i told them in 2007 that POTS is chronic and that it will stay with me for a while or always. They dont get it, because colleques keep asking me if i want to go skiing, hiking, skating .....with them. I now just excuse myself by telling them that i have no time. I dont have to get up that much at work (thank god), but when i have to, i try to find something to lean on or pretend i have an urgent phone call to make. When its time to go home, i friendly tell everybody good bye and walk to my car which i parked right in front of the building the night before. sit in it and wait until i feel ok to drive. Nobody has noticed that yet. Nobody at my work has an idea how hard just the normal every little things are planed by me. They dont see my struckle and i dont feel like telling them anymore either. Its not important for me what they think anymore because i know that no matter how hard i would try to explain POTS, unless they dont have it themselves they will never truly understand. Usually iam so exhausted by the time i get home, that its not possible to go (for example) to the bank. I do them sort of things just on my very good days. And even if i feel good in the afternoon and decide to go into a store, if i feel bad 2 hours later, i wouldnt even bring the trash out. So i dont put myself under pressure anymore. I do them sort of things when i feel ok, when i feel bad i dont do them. And with POTS you know it can change any minute. I know that its hard for people to understand why i can do things one day and dont another day. But thats how it is for now and thats what i have to work with. When normal people have the flue or migranes or whatever, they usually dont do things they normally do. When i have them, i usually still go to work, because if the flue doesnt make my POTS worse, i see no reason not to go to work because for me nothing feels as bad as the POTS symptoms. So dont put yourself under pressure anymore. Try to work within your limits and dont worry about being able to do one thing today and not the next. Enjoy them when you can and be thankfull and proud that you achived them on that special day. love carinara

thank you all for your help. When i read through the EDNF site, i find that i dont really have any of the symptoms listed, exept maybe a little hypermobility on my feet (but iam not sure). All the other symtoms that are listed under VEDS i dont have. (Thank god). So should i still try to find a doctor to do some tests? Reading through some german EDS sites it seems as if you only go and see a doctor if you have the listed symptoms. thanks again carinara

i can totally relate to you. Up until 15 month ago i always felt so bad when i couldnt do all the things other mums could do. That was the time before i was diagnosed. I always tried to be like all the other mums, but i failed daily. I remember so many times, when i sat in a cool space in our back garden, trying not to fall to pieces, unable to walk more then 10 steps and watching my neighbour baking a cake, playing with her children, doing homework with them, taking them to the local pool, cooking a meal and going jogging ALL IN ONE AFTERNOON???? I always felt so very sorry for my daughter not being able to have a mom who can do them sort of things with her anymore. Don?t get me wrong, i tried very often but with devestating results. I was constantly having a bad conscience. And people around me telling me, i should just try harder, made it all much worse. Now since my diagnosis iam a totally different person. I try to live with my limitation and try to make the best out of it. When i see my neighbour doing all her daily programm with her kids, i look at her and am happy for her. I then do something that is manageble for me, with my daughter. We go for drives out in the country, my daughter gets out of the car to buy some icecream and i just sit and wait, we watch a movie together and if she has a football match, i make sure i sit there for how long it takes. Now i feel proud of myself of what i have been through the past 11 years and how i managed somehow. I am very thankfull for the things i can do and appreciate life much more then before.