carinara

Iam glad that you made it through the first days in school ok. In my experience they are the most difficult ones because it always takes a while to get in a good routine again It's very wise to take some work home with you and to take a nap as soon as you come home from school. These are some of the things i do in order to manage my job as well. I used to have a bad conscience when i came home and layed down for a while, but now i don't anymore. I know that if i don't do so and push myself, i have to pay for it! It's great that you found a good solution with your husband helping you and doing the homework with your little one. That way you can take some time to relax and get your energie back and iam sure your daughter appreciates it if you have a little more energie left to do something fun with her after her homework. I wish you all the best carinara

I also have experience most of the symptoms you do almost all the time. But when I get an episode, the symptoms are much much more intensive than usual. They get so bad that i was bedridden in the past for a while because my body went crazy as soon as I tried to stand up. During such an episode Iam totally helpless, at times i cant even go to the toilet on my own. My body seems to react extremly to every little thing like food, smells, noises, lights, talking and so on. I had 3 bad episodes like that in the last 10 years. Last year i was off work for 5 months due to a bad episode, And 4 years ago i was off work for 4 month. During my episode last year i finally got diagnosed after years and years of suffering. In between them episodes my body seems to get somewhat in balance again. Like i said, the symptoms are still there on a daily bases but much milder than during an episode. Thank god, that i now know that i am suffering from POTS and that i have found this wonderfull website because now i feel, that if ever such a bad episode happenes again, i know so much more about the triggers and what happenes with me. I hope this knowledge will help me get through an episode like i had in the past better ( Hopefully something like that never happenes again:-). I hope and wonder, that it might never gets as bad as that again because i now know what iam dealing with. Of course i have little episodes as well, but they last only a few hours or a day or so. Iam glad you asked this question because i wondered about the same question myself. All the best for you carinara

I talked to my boss about my health problems. Since i was off work for a few months last year (because i had a very bad episode), he was really concerned and told me, that he didnt want to lose me as his secretary. Many things have changed since then. Now he gets up and gets himself some coffee, instead of me bringing it to him. Whenever standing or walking is necessary i can ask some of our students to do it for me. It also helps me very much, that my sister works at the same company as i do. She is always there for me in case i have a bad day and can't get up without having symptoms. I avoid asking her for help because i am stubborn and want to do it on my own, but it's really a big help to know, that somebody is there to help if necessary. To get through my workday, i try to sit all the time. When i do have to get up, i make sure that i take all the necessary things with me, so i dont have to get up again for a while. I make sure that i do get up and walk around for a few seconds every hour to help my bloodcirculation. I eat at my desk and i have got fans positioned around me in case it gets to hot or somebody is smoking around me. I also made sure that my office light is not as bright anymore! They turned one big light off, so now it's darker in my office. I have my telephone, printer and copy machine all around me, i also have my drinks and snacks next to me. I have a fan and a water sprayer under my desk. When it gets to hot i just spray my compression stockings with water and let the fan cool my legs down at the same time. I have also a little fan right in front of me. These are some of my little tricks on how to get through a workday.

My TTT didnt even last 1 Minute. I was on Beta Blockers. My HR doubled up in a few seconds and i felt very bad and asked them to stop. The doctors stoped the test and said to me that this is all they needed to see! I have no idea what would have happened to me if they would have continued the TTT. Before the tilted me up they told me that if i would feel realy bad, they would stop the test straight away.

Oh, i can really relate to this. I experience the same sort of things at my workplace. I try my best to be friendly and look and act as normal as i can in order to keep my job! I make all the necessary adjustments to get through my work day. I have a 11 year old daughter and iam glad, that i have to work only 28 hours a week! Ist very hard at times and a challenge every single day! Every little detail is well thought of. If people only knew how much i need to stick to certain plans (like getting up 2 hours before I actually go to work, Get washed and dressed sitting down in a chair with rolls on and so on). When i arrive at work, i never use the stairs, i use the elevator instead. Today one of the bosses just told me that he thought i was lazy and laught at me! This happens very often. I did explain to people what is wrong with me and how POTS effects my life. Last year i was off work due to a very bad POTS episode, for almost 5 months. When i returned to work many people were interested and wanted to know more about POTS. But the more time goes by the more people seem to forget. I get asked out for meals at lunch time quiet often. When i tell my coworkers that i cant come (first i cant stand for long and eating makes me feel symptomatic as well) they look at me funny! Now i stopped telling them why i cant do things with them. They dont understand anyway. I just go to work, try to get things done and iam very thankfull for every single day i manage. As soon as i get home i need a biiiiiiiiiiig break before i can do a little housework. Thats all for me. I never meet friends after work or go somewhere for fun, only because i have to watch my energy and my health! Tomorrow for example, a friend just asked me out for a quick drink after work! I wish i could just say yes why not. But in realtiy i know i most likely feel tired and need to rest plus the hot temperature is really getting to me. I need my rest and if i dont stick to it (like last week where i didnt get much sleep) i have to pay for it! I try not to talk about my health at work anymore

A therapist once told me, that i should try not to let POTS effect my life. In his theorie i should go anywere and do anything without even thinking or worrying about getting symptomatic. And if i do feel bad, i should just sit down and wait until my body gets in balance again! His opinion is, that if people worry about what might happen and it stopps them from doing things, they are suffering from anxiety. His opinion really got to me, because i dont really see it that way. I explained to him, how i have to watch and plan every little thing in order to make it through the day. Like taking my medicine at the right time, getting up 2 hours before i actually go to work, always use my chair (with rolls on), not to eat to much, not to talk to much, not to get stressed or excited and 1000 other things. I told him that if i feel ok, i go most places as long as iam not on my own. Lets say my family would want to go out shopping. If i would feel ok i would not hesitate to join them BUT, there are a few things that are necessary for me to do so. First of all, i would not be the one who is driving the car (because it makes me really dizzy at times and i never know, if i manage driving home again). Then i would only come, if its cool outside and if there are places to sit. (can not stand for long). Sometimes it works out ok and i feel well with it, at other times i dont and i start feeling sick! Those are the times when i really appreciate that somebody is with me and that i don't have to worry about how to get to the car or driving home and so on. Of course, if it went ok and i felt well i most likely would have managed going on my own in the first place, but i never have the urge to do things like that totally on my own anymore because of all the bad experinces i had in the past 10 years before i got diagnosed. I would just be a little more nervous and watch myself in order to not overdo it and bring the symptoms on and thats not worth it for me, If somebody is with me, i can just totally relax because i know that if iam getting symptoms (which i get on a dayly bases anyway) I can just concentrate on getting better and not worry about other stuff. Iam qiuet happy and content with this set up, its just the above mentioned comments from some people that put pressure on me. So that i catch myself analysing quiet often, should i be doing this or that on my own or is it ok if somebody is with me? What do you think? Is that some kind of selfcare or is it really some kind of anxiety? Thank you all so much for your help and i do want to let you all know, that i really love this site! I cant put into words how much i have learned here and how much i appreciate all your posts. I do not know how i would have handled the time after my Diagnosis (one year ago) without the help of all of you. I think iam still the only POTS patient in Germany, never heard of another one. Take care carinara

As long as I eat only tiny little meals (a few bites is all i can tolerate) and no more than a (even smaller)bit of chockolate or other kinds of sweet things, iam ok! Otherwise i get exactly the same symptoms like you do. Years before i got diagnosed with POTS, my doctors first focused on my high BP, after another year has passed without any solutions, i was send to a specialist who focused on my low Blood sugar! For many month i had to messure my BP and my Blood sugar! Nobody could understand what was going on. Once the doctors even watched me whilest i had a real bad episode after eating something heavy. They saw my tachy, me shaking and the rest of the programm and still had no idea :-(. Now, many years later i just know that these are all POTS Symptoms! But like i said, it took ages for me to realize how all the different symptoms come together and when they appear. As soons as you eat a meal, the blood goes to your stomach because thats were it is needed for digesting the food. The more you eat at a time the more blood is taken away from the rest of your body. If you eat sugars your blood sugar first goes high but after a short time it crashes down again to a lower number then you started from. Healthy people can adjust to them sort of things automatically, but with us its a different story. Thats why i always make sure, that i eat them sort of foods that keep the blood sugar somewhere stable and never eat to much at a time. There are also some kind of foods that make the blood pooling worse, i try to avoid them as well. Hope that helps you a bit. carinara

A while back i read about the spoon theorie in one post. When I read through it, it really touched me, because that is exactly how i feel. Now I often use this theorie, if i have to explain to somebody how i feel. Hope it helps you as well. Have a look at: http://www.butyoudontlooksick.com/the_spoon_theory/ all the best for you carinara

Hello corina, nice to hear that you enjoy your rehab! I went to one myself last year. And even when all the appointments (i had to go to every day) really made me feel sick sometimes, i did learn a lot about how far i can go before i get really symptomatic. It did give me a lot of convidence back! I wish you all the best and a lot of good experiences and much fun as well:-) carinara

This happens to me, when my blood sugar is really low. Whenever i get bad POTS episodes, i have to have something to eat next to my bed, otherwise my blood sugar will crash! During those times (before i knew i had POTS) i felt like you described! Now i always have a banana next to my bed and as soon as i wake up, i take my medicine, drink something and have a few bites of my banana! All the best for you carinara

Hi Carly, i think staying in touch with him is a great idea! I really think its great that you are so sensitive and worry about this little boy and his situation! Experiencing that somebody really cares, can make a big difference to this little boys life. I can also understand that you are a little worried about if writing to him is appropiate! I have a 11 year old daughter myself and if a grown up person would write her letters, i wouldnt know what to think about it. So therefore i would recommend you, to let his parents know, that you would really like to stay in conact with him (because of all the reasons you wrote in this post). In my opinion you dont have to ask yourself the question if its appropiate as long as your heart tells you, that you can really make a difference to this boys life, and that you help him to experience that there is somebody around who cares. The world needs people who take over responsibilitiy and dont just turn away. (sorry about my english) carinara

Hello everybody! Last year we had to cancel our summer holiday because i had a real bad POTS episode and I was bedridden for quiet a while. Now my body got a little in balance again, and with a lot of little tricks and adjustments i now manage my days quiet ok. This year I promised my daughter to take her to italy. We both love the ocean very much! I now booked up the apartment we will stay in. I really want to take her there. I figured out that if i plan the trip ok (make sure the air conditioning in the car is working, take a fan with me, get enough sleep, wear my compression stockings and so on) i will manage somehow. I just wonder how i get trough a day on the beach? Last weekend i tried to lay in the sun in our back garden. I constantly sprayed water on my body plus i took the fan outside. I was suprised how well that worked. ( i even got a tan because i get dark real quick :-)) I used to love the sun but these days i cant tolerate beeing in the heat exept when i use the water sprayer and the fan at the same time. I know, that i cant take a fan on the beach with me, but maybe the breaze will be good enough? I will also make sure that i have a place in the shade to sit down! But i have no idea what iam going to do with my compression stockings! They are the first things in the morning that i put on and the last things at night before i go to bed! Should i give it a try and not wear them? Should i leave them on and go swimming with them? I really want to go swimming again! I know that if i get there and its really hot and i feel bad, i will just end up sitting in the appartment most of the time or in the airconditioned car being ill. But at the moment i kind of get a little excited as well and look forward to that holiday, in my fantasie i just walk on the beach like i used to. Any ideas on how to get trough a day on the beach? Thanks a lot carinara

Maybe you want to have a look at one of my posts i wrote a while back. http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara All the best 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 obviousness.

Sorry, i didnt want to worry you about flying! I just wrote that I experience the same kind of dizziness when iam flying, but that doesnt stop me from flying at all. In fact, all the past years i had to fly a lot and because i didnt know what was wrong with me back then, i just thought it must be normal to feel like that after landing. Now since i know about the POTS mechanism i at least have an explanation for all them weired symptoms. Iam sure you are going to be ok on your flight. carinara

Hi, ist me again! Maybe you want to have a look at, hope it helps! take care carinara http://dinet.ipbhost.com/index.php?showtop...9&hl=vacuum

Just wanting to let you know, that hoovering or scrubbing the floor realy sets my symptoms of. I often had spells similar to what you experienced from this kind of houshold work. Now i always hoover whilest sitting down in a chair and even this makes me symptomatic. I think it has to do with bending over and adding pressure whiles doing it. I honestly believe that it had nothing to do with riding your bike prior to the cleaning. You said you felt good when you got home! I experienced so many situation where i was proud of myself because of a stressfull workday i managed or other situations then i get home turn the hoover on and find myself laying in bad for the next few hours. I noticed that this is a big trigger for me. I think you should go on riding your bike as long as you feel good with it and when you get home just make a little rest, drink something and wait until your body cooled down. Ist so important to exersice . All the best for you carinara

This is a wonderfull thing you are doing. I believe that things always happen for a reason. And loosing your letter was probably ment to be. Iam sure your going to help so many people with this group. I wish i knew of a group around were i live. Good luck and all the best. carinara

I experience the same things as well. When iam on an elevator It also feels like the ground is just bouncing up and down after I get off. I experience the same symtoms when i get off an airplane. Sometimes it takes hours before it goes away. Some days its better and somedays ist worse with me. By the way, before i got diagnosed last year, i went trough 10 years of severe health problems. At times i was bedridden for weeks. One day when i had a 'good' day, i promised my daughter to go to a amusement park with her, so i went on a roller coaster with her. This was a nightmare experience! It was like an elevator but 1000 times worse. Never ever would i do something like that again . Before i got real ill with POTS i loved them things, i even went bungie jumping and so on. But now I even get dizzy driving a car. There are also often times, when i dont know if Iam moving or if the things around me are moving. It seems as if it takes a long time before i can focus on the movements around me and my body system gets adjusted. This also happens when iam for example watch TV. If there are quick picture changes on the screen, i have to close my eyes otherwise i feel as if i fall over. Thats even worse in the cinema. Sounds and smells make me feel dizzy as well. I think this all happens because of our autonomic system being so sensitive. It just reacts to every tiny little thing. carinara

My partner is a very difficult person to live with. He gets in terrible moods from time to time and never stops to pick on my daughter and me. I try to avoid arguments because they really make me feel bad healthwise. Today he is in a very bad mood again. Defending my daughter and me cost me so much energy. I was so much looking forward to this weekend because the working week (i work 28 hours a week) whilest my daughter is in school (she is 11) cost me a lot of energy. I adjusted my life to POTS as good as i can trying to raise up my child in a good way and manage my job. After many years with severe health problems my partner slowly took over some of the things i used to do, like going shopping, driving my daughter to her appointments, walking with the dog.... and so on. Iam very glad and thankfull for that help, because i feel really bad at times and i couldnt do it on my own. But when his moods swings over again i feel as if iam a prisoner in my own home because i cant walk away. I would love to just leave the house when he gets like that, but my body doesnt allow me to. I tried all that before, i didnt get far because of the symptoms. Just today, i realized again, how i dont want somebody who treats me that bad. Its so unfair. I tried everything to understand or talk with him. Its impossible! I know, that if i was healthy i wouldnt put up with it, i would just walk away or tell him to live somewhere else. I wouldnt Be so helpless! But on the other side, if i didnt have a partner, i couldnt manage the daily chores. I have a very loving family (parents, sister..) who help me as well in during the week. (like making meals for my daughter in her lunchbreak and driving her to different places) whilest iam still at work. I know i can always turn to them if i have problems but i feel they allready do so much to help. I dont want to worry them! I feel so frustratet. Before i got sick, i would have never let somebody treat me like that, i would have stood up for myself and would let all my anger and dissapointment get out. Now, i still say my opinion and fight against wrongfulness but afterwards i feel real symtomatic like now. All i can do now is lay down and wait until my body is in balance again! I went trough so much in my life already, i am quiet happy with my life at the moment healthwise. One year ago i was so bad that i was bedridden because i couldnt stand up. Iam thankfull that my body got more in balance again and that i found a lot of adjustments that help me. I thank god every day for it.I dont want to spend any times on stupid arguments but like i said, arguing seems to be my partners hobbie. Any tipps on what i can do if i cant run away? With how much do I have to put up with? (by the way now he is trying to be nice again whilest iam laying down being sick) instead of having a nice relaxing saturday i Now have to recover from all that tension. Sorry about being very personal, i didnt want to write about it in here at first, but then i thought if somebody understands then you guys. (because everybody else just tells me to walk away) I WISH I COULD Carinara

I try to go for a walk in the evening hours whenever my body allows me to. Sometimes i feel ok after it and other times it makes me real sick. But i try very hard to stick with it because i believe that i do get some benfits from it in the end. Today i noticed (like so many times before), that after a while my hands seem to blow up. My venes come out and my hands look swollen and I can feel pressure in them. I thought, that it might be the gravitation ( standing upright and the arms dangling down) I just realized today, that this is a thing i have noticed so many times in the past before but never paid that much attention to it . It just always seemed to be there. Now i wonder if this is also a POTS thing. I would be very interested if anybody else gets that. Thanks and a nice weekend to all of you Carinara

When i got a real bad POTS episode a few years ago (long before i got diagnosed) i went to a alterantive hospital trying to get my symptoms under control. Back then, the doctors just focused on my tachy and my higher BP. i was 30 years old back then and more on the skinny side. They focused on getting my changing BP under control. They assumed, that this would be te solution to all my problems. Well, i must say that out of all the doctors trying to help me in this matter, this professor helped me the most. Iam not sure if you heard of the : inner heart pressure syndrom (in german: herzinnendruck syndrom) The professor told me plus i read it in his book and on the internet. That many woman most of the time woman who go into menopause have problems with getting higher BP. When the period stops then they have more blood circulating around in their body. When you lay down on your back, the heart gets in stress because of the increasing blood flow to the heart (more work for the heart to do)He has got a volume ekg where the patient can see how the blood flow effects the heart whilest laying down flat) During the night, the heart gets into stress because of that. That increases the BP and so on. Well of course, iam far away from the menopause but at that time, i took some medication to stop my periode and therefore i was somehow in the same situation. What the professor recomments to his patients is to sleep in a uprighter position and to let a tiny amound blood every 4 weeks. (between 40 and 80 ml). Ever since then i stuck to that. After i got diagnosed with POTS last summer i thought about stopping the procedure of letting blood, but my doctor who stood by my side through many years of not knowing whats wrong with me, told me that we should stick to it. Because my Base BP gets really effected by this thing called bloodletting. I talked to many woman in this alternative hospital and this procedure has helped most of them. The hospital and the professor who treated me have been on many german health programms on TV and it seems like it works for many people. Iam not sure if there is some information about that available in english. But if somebody is interested i sure will look into it. Like i said, this procedure only effects the BP side of things not POTS in general. carinara

I experienced very bad low blood sugar problems in the past. In fact whenever my POTS gets really bad to a point where I am more or less bedridden for a few weeks (that happened 3 times in the last 10 years) my blood sugar went total out of control. Even now since my body is a little more in balance because of a lot of adjustments and so on... i still have to watch what i eat in order to keep my glucose level somewhere normal. (and my POTS Symptoms as well, but thats a different story...) I changed my whole eating happits 4 years ago. I eat well-balanced food now and made myself a eating plan which i stick to since 4 years. No more white bread just wholemeal bread, no fast sugars and almost no chocolate. I prepare my food one day ahead and always take it with me to work, i never go anywhere without some food, because if i feel my blood sugar dropping, i eat a tiny bit (a few bites) and drink some apple juice with water and wait until i feel better. In emergencies i eat a sugar cube plus eat a bit of my food as well. In fact i never eat just something sweet on its own, because then my blood sugar gets high quick but drops down even lower afterwards. I also try to avoid much carbohydrates. They make me worse in general, POTS wise and Blood sugar wise. When i had a medical test were fasting was involved i talked to the doctors and they told me, that a little mouthfull apple juice is ok. It depence on what kind of test you have to go through i guess. If its a glucose test then of course you cant drink anything sweet. I know of cinnamon drugs that should help to stabilize the glucose level. carinara

A few years ago i started on?Metoprolol that made me real sick! Then i switched over to Propranolol which i can tolerate very well. Since iam very sensitive to any sort of medication, iam glad that i have finally found a BB that works for me. I take a tiny dosis 4 times a day! carinara

My BP is more on the high side! I take the BB for both reasons. My higher BB and my HR. When i was bedridden for a few weeks a while ago, my BP was to high even then. Just every once in a while by BP drops low. But you know what? it makes no difference at all to my symptoms. I get symptomatic just the same!