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carinara

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Everything posted by carinara

  1. Does anybody know how a Mitral valve prolaps and POTS are related? I have both POTS and a mild MVP. I keep reading that they are somehow connected! Can somebody explain that to me? Thank you very much! carinara
  2. My BP varies from 110 to 68 to 180 to 130, my baseline is around 140 to 90
  3. I also have problems during the night from time to time! It seems like iam deep asleep one moment and half a second later when iam still in the progress of waking up, my heart goes off like crazy. As soon as i lay down flat on my back i can feel my heart beating all over the place, and i can see it also because my stomach is jumping up and down. My cardiologist told me a few years ago, that i should try to sleep in a more upper position. I know that he tells that all his other patients with all kinds of heart and BP probems too. Ever since that day i sleep more in a sitting than in a laying position. I bought myself a special pillow which i put in my bed. I dont remember the last time when i slept flat on my back. I must say, that it does make a difference to me. That way i can honestly say, i get less tachy and i can feel my heartbeat less. Like i said, i never lay flat on my back anymore. Maybe you should try it also, hope it works for you too!
  4. Hanging up and taking down the washing, Hoovering, planting flowers in the garden. Everything were i have to bend over or when i have to do things with the arms above my head. I do all the houshold stuff sitting down, but all that turning and bending makes me still symptomatic and i have to lay down from time to time. I try to do everything in slow motion to keep the symptoms somewhat under control. carinara
  5. Hi cardiactec i watched my HR over the last 10 years and i kept telling my doctor that something is wrong with me because my HR doubled up and I had loads of weired and bad symptoms whilest standing. There were times, were i was bedridden for weeks because my body didnt allow me to stand up. The TTT was just the final test for me showing everybody and myself that something is wrong with me. I got diagnosed with POTS last summer. But like i said, the TTT got stopped after 50 sec. No way i could have handled it longer. Does my Diagnosis not count now? because the TTT didnt last 30 minutes? I got diagnosed in a autonomic section in famous university clinic here in germany. I think, that If the specialis who diagnosed me would have had any doubts about my TTT he would have never gave me this diagnose. Or what do you think?
  6. Just wondering how long your TTT lasted. Mine had to be stopped after 15 seconds (in the upright position) because my HR went from 80 laying down to 160 being in the upright position. It had such an impact on my body, that i couldnt handle the massive symptoms any longer. Now, i feel a little insecure because i read , that a TTT should last 30 minutes. I couldnt imagine what would have happened to me if this test would have lastet only a few minutes longer! I felt so terrible! I just read on a different post, that somebody was concerned if panic or anxiety can produce a positiv TTT and one of the answers was: that patients get very nerved up for tilt's and have a blunted HR response during the first part of tilt (first two or three minutes) and then they calm down and their rates drop to normal, all while still in upright position.....if the test had not been carried out long enough, these patients could have easily been misdiagnosed with pots/autonomic dysfunction, but waiting a little bit, 20 mins, to see if they calm or HR drops, is a good tool -- because generally someone who is "just nervous" will calm down after several minutes, and so will their HR response to their nervousness.......... By the way, i was only a little nervous but not anxious before the test and I have very much difficulties standing. To get trough my day, i have to use a chair with rolls on because otherwise i cant manage. Iam a little concerned now, because my TTT lasted in total only 50 sec. Does this mean i have to question my diagnosis now? Thanks a lot Carinara
  7. Hello Seb10, your story sounds somewhat like my story. I also found this site a few month ago, contacted a doctor listed on dinets-doctors-list and finally (after 10 years of bad suffering) got diagnosed! To me, it was a great relief to have a diagnose after all, because then you know what you are dealing with and can adjust more. I am sure you will find a specialist in your area, just have a look at the above mentioned dr. list. Don't give up and hang in there! I wish you all the best! carinara
  8. Hello everybody, Iam very sensitive when it comes to medications. Even a tiny dosis can make me feel real ill. Thats why iam very concerned now and worried, if the current medication i take is good for me. Before i got diagnosed with POTS my doctor always tried to treat only my higher BP with a Beta Blocker and Atacand. Now after i got diagnosed with POTS, my medication hasnt changed. I got diagnosed in the autonomic station in a university clinic. The doctor in charge send all the reports and results to the doctor where i live, she should take over my treat plan now. The only problem is, that she hasnt heard of POTS up until a few month ago because i gave her some infos about it! When i called the doctor in the autonomic center and asked him about Atacand he told me, that i should talk to the doctor who treats me about it. But like i said, she doesnt know! I just searched the internet about how Atacand works, and thats what i have found: Atacand? (candesartan cilexetil) is an angiotensin receptor blocker (ARB) Angiotensin receptor blockers work by inhibiting the effects of angiotensin II, a hormone that constricts blood vessels and leads to hypertension. For my understanding, it sounds as if this medication works against the POTS mechanism. Iam confused about me wearing compression stockings from the outside to compresse the blood vessels and take a medicine inside that widens them? This makes me very insecure now. I was always told to do something about my higher BP, but is that the right solution? I still cant stand longer than a few minutes before i get real symptomatic! I would appreciate your help and opinions very much! carinara
  9. I had a very bad POTS episode a few month ago! My heart rate would double up within a few seconds from laying to standing. My heartbeat was so strong and loud, that people standing next to me could hear it, I felt my heart all the time! I was so scared and thought that my heart would jump out of my chest any second or just explode. With it came all the symptoms you can think of, like shortness of breath, dizziness and so on. It just happened, that i was hosptalized back then (i wasnt diagnosed with POTS yet). And so it happened, that the cardiologists and all the nurses saw me having such a bad attack. I kept telling them, that i cant stand upright without my heart going off again. They never heard of something like that, but thats a different story..... Afterwards the doctors said, that even though it might have felt real dangerous to me, there was never any danger to my heart. The echo was ok! They explained to me, that the heart is a muscle and when the muscel gets tired after a while it will slow down again. They told me, that if it gets that bad again, i should tell myself that my body is doing a workout whilest iam sitting. They said, that for my heart it makes no difference if its beating that fast because of intensive sports or because of the tachykardia I have. They also gave me the tip, that if my HR gets that high, i should hold my breath and press it in my lower body (just as you do when you are having a baby). This brings your heartbeat down really quick. I had 2 more echos within 6 weeks, all of them were ok. A few month later i got diagnozed with POTS! I often tell myself now, that even when the doctors didnt know what was going on with me, they told me that my heart was never in danger at any point. Now i have a diagnosis and know the mechanisms behind the whole thing, that does make things easier for me. My body is a little more in balance again, even though i have symptoms every day and cant stand for longer then a few minutes) But my heart isnt that crazy anymore and i dont feel the heartbeats like i used to a few month ago. But i know, that if i get a bad episode like that again, that it will most likely come back ( thats my experience in the last10 years) I try to exercise whenever my body allows me to. Even if it's just a few minutes a day. It sure does make me feel better. Take care Carinara
  10. I can relate to so many things that you all wrote. I wanted to be the best mother in the world myself, but when my daughter was 1 year old i got really sick with pots. i was bedridden for a while. But back then nobody knew what was wrong with me. Doctors always told me that they can't find anything. I felt so sick almost every day. I couldnt lift my daughter up without bad symptoms or change her nappies and since everybody told me that i should just try harder, i pushed myself to a point where i felt bad 24 hours a day . I put myself under a lot of pressure because i wanted to be the mum i always dreamed of.I dont remember how often i just cried because i wasnt able to take my daughter to the playground and if i did manage to, i was so dizzy that i couldnt play with her and ring somebody to pick us up. Since i got diagnosed 10 month ago, i startet to learn about whats been going on with me in the past 10 years. If i only would have known all this before, i would have gone about it in a total different way. For years people made me feel as if i am a lazy mother because i couldnt keep up with all the activities healthy people do with their children, and i cant really blame them, because i had no diagnosis then, I had such a bad conscience all the time. The harder i tried, the worser i felt. now, that i know so much more about this illness, i wished i would have known this years ago because now i know that i was always right when i said there must be something really wrong with me. It's not lazyness ist POTS
  11. Just one more thing. I forgot to mention that just before my rehab was finished, i found out that the rehab doctors made a shellong test (because they didnt have a TT) on a woman who had some problems whilest standing, they even told her to start wearing compression stockings! So after all, my presence there and the information i gave them, might help other people in the future, you never know :-), Take care
  12. Hello corina, i just wanted to let you know that i went to rehab myself last year. When i got there not one of the doctors even heard of POTS before! I gave them all the informations i could ,to inform them. Some of the doctors believed in it, others didnt, I also gave them the phone Nr. of my POTS doctor from a famous universitiy clinic, but only one rehab doctor contacted him. The rehab stuff saw how i suffered and still you could see, that they thought i just didnt try hard enough , at the beginning of the rehab, they even tried to get me jogging with the running group in the hottest summer, but i couldnt of course(even though i overdid it most of the time, just by eating a tiny meal or something and i got real symptomatic, they couldnt relate) The best result of this rehab for me was, that the few doctors who kind of believed me, understood me a bit and were friendliy enough! and that i didnt have to worry about everyday things like, cooking, housework and going to work. I was able to just concentrade on me and watch myself. The massages i got a few times a week i enjoyed! But the most important experience was, that i could try and practise how far i can get with my condition and knowing that medical stuff is always around, just in case! Hang in there! carinara
  13. Hello everybody! i would be very interested to find out to what degree you depend on other people due to POTS. I used to be a indepented person before i got sick about 10 years ago. Now i wouldnt get far if I didn't have a lot of help of my family! I hold a job as a secretary and i have a 11 year old daughter and if i didnt have all the support around me, like my mother picking me up from work, driving my daughter to her appointments, driving me wherever i have to go) i wouldnt manage! When i have a real bad POTS episode with all the symptoms you can think of to the point were just getting up to go to the loo is almost impossible, it comforts me a lot if somebody is around! When i get that bad (this happened last summer again) iam totally helpless on my own, and that scares me! Now, my body got a bit in balance again! I still can't stand without getting symptomatic, but i know much more about all my trickers like food, talking, heat, and so on now. With this knowledge in my head i make sure, that if i go somewhere with my family that i never overdue it in any shape or form. Like a few weeks ago, we all went to a concert. I got out of the car right in front of the building and sat down waiting for the others finding a parking space. During the concert i sat down all the time and i had my little fan going! After the concert we went straight home. I really enjoyed the night out. But to be honest, i would have NEVER done it on my own. As long as i know that there is somebody with me who can drive me home when i get real bad, i will try to go to most places! (Like iam invited to a wedding tomorrow, hope I manage) Its a great relief for me to know, that i can at any point just lay down and just concentrate on getting better without wondering if i get myself home, walking to the car and driving and so on! For the first 8 years of POTS i tried my best to stay independend, people kept telling me, that I should try harder to do everything on my own. I tried and i felt so bad with it, i overdid it on a daily bases! I felt symptomatic all the time. Now, since i know more about POTS and found this wonderfull website i know that if healthy people would experience them sort of symptoms, they would just stay in bed all day long and call in sick. At the company i work for, iam the person to call whenever somebody is sick and doesnt come into work. These people who have told me before that i should try harder to do things, are exactly the people who stay at home when they have a cold or a muscle ache. Sometimes people stay away for weeks because they twisted their leg. When they call me they expect me to feel sorry for them and i tell them to look after themselves and get healthy before they come into work again. (whilest i close my eyes talking to them on the phone concentrating because i get very lightheaded at times) . I try to convince myself that it's ok to depend on other people at times and that in order to keep the symptoms somewhere under control,it's also ok not beeing able to be as independent as i use to be! But at times i feel frustrated and do things to show myseld that i can manage all alone, but most of the time i feel real bad afterwars! How do you feel about that? Thanks a lot Carinara
  14. My daughter has many of the same responses as you, in addition she goes almost completely blind if she turns her head past a certain point . No doc that we have mentioned this to has any explination. Guess the symptoms you describe must be something related to the POTS or maybe you have dysautonomia also- have you been tested for this? sending you hugs and best wishes--susan How do you get tested for dysautonomia? I got tested and diagnosed with POTS, and a mild mitral valve prolapse I thought POTS is a part of dysautonomia! Since my native language is not english, i just looked up how wikipedia discribed dysautonomia, thats what i found: Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and a number of lesser-known disorders. So i dont really understand what you mean when you asked if i was tested for dysautonomia! all the best wishes to all of you! carinara carinara
  15. thank you all for replying, this forum is such a great place! For the first time i can talk to people who can relate and understand me! At last, i know that there are other people around who experience the same strange symptoms and thats very supporting! I can relate to all of what you wrote. Scart, i know how frustrating it is to look after a little one, when your body just doesnt function right. When my daughter was still little ( she is 11 now). I felt very scared at times due to my bad health. I can't count the times when I got real symptomatic to a point like you experienced lately in the pool! I got very anxios then, because I wanted to protect her and as you know, there are so many dangerous situations children can get into (like runing around not being aware of cars driving by, climbing up things or 10000 other situations! But i must say, that back then i wasnt diagnosed yet! I didnt know that much about my triggers then. Iam sure, that if i had known all what i know about POTS now! I would have managed much better! I can also relate to asking people to sit across from me (not next to me), because i often get symptomatic if I turn my head to talk. In fact its hard for me as well to have a chatter,i try to prevent lightheadness by talking extra silent, but then people complain and tell my they cant understand me and i should talk louder! I feel better if i do one thing at the time like for example first eating, then talking and so on.But when all of them things happen together like when your invited to a birthday party and everybody is talking loud, the radio is playing and the food is served! Thats often to much input for me! Like MaryP wrote, i also try hard when anybody is around, to hide how i feel and to keep the lightheadness away by trying to sit all the time if iam out! But i often have a bad conscious coming with it, when i see for example how other people just Get up and do little chores without problems, i always want to help others and thats a big thing i had to learn lately, that in order try to keep the symptoms away as much as possible, i have to keep sitting. Not being able to offer, for example older people the last seat in a bus, makes me feel real bad! Sometimes i still do it, but then i often get to a point where i get realy bad for hours.
  16. Hello everybody, I experience and read about many situations that make people with POTS symptomatic, like eating big meals, heat, bending over and so on! But there are other situations that make me feel real bad at times as well, like getting real dizzy if i move my head to look whats behind me or if i move my head quick from one side to another (like people do when they for example park a car or watch a tennis match). Quick movements on TV or the cinema in connection with loud noises also make me feel dizzy. I also cant tolerate bright lights or candels right in front of me. I cant tolerate hot food and most of the time I get symptomatic about 1 hour after I had a meal. (Even though my meals are very very small). I also get uncomfortable if I sit down with my upper body bending a little forward. (My POTS Dr. recommended this position to me, he said it should comfort me, but in reality it makes me even worse) Can any of you relate to those Symptoms and what kind of weird symptoms do you experience? Thanks a lot for your time and effort! Carinara
  17. I was of work for 6 month last years due to a very bad POTS episode myself. At the worsed time, i couldnt even get up and if I did so, i had very bad spells. I experienced the same bad Episode 4 and 8 years ago. But i must say, that the Episodes settled down after a while. I always took the evening hours to walk as long as my body would tolerate it and even when i was at my worst, i persistet on a dayly trip around the village in the car.to keep some routine and get out of the house. My mother picked me up then and even just walking to the car was realy difficult. But like I experienced before, my body got a little adjusted again. Iam back at work for 29 hours a week. (because i have a child as well)I make sure that i just get up if i have to. I have found so many little tricks to make it trough the day! I was diagnosed with POTS about 10 month ago and know now whats been going on with me in the past 10 years. When i had a very bad Episode 4 years ago, nobody even knew that i had POTS. Then i returned to work after 4 month not even knowing what was exactly wrong with me. Back then, i tried to function like a healthy person, but felt bad all the time. Now since i know so many of my Triggers, i can manage. Dont get me wrong, iam still not doing great healthwise. I still have to do all the housework sitting down in a chair and be very carefull about so many things, but you probably know yourself how it feels looking at something in front of you and not knowing how you are going to get there because you cant get up. With that experience branded in my memorie, i often feel like tarzan now. I hope that it slowly gets better and better and I do hope, that if I get another real bad Episode like that, that all them things I learned from this site and my doctors will help me to cope with it easier then the last few times. I wish you all the best, and I do believe that in time you will become your own health specialist and that your body finds a way to regenerate. Carinara
  18. Thank you for writing back. My mother is german but my father is spanish, i have got a spanish and a german passport. But i do live in Germany! I also have many relatives in the uk. due to my former marriage! My family is a very international one as you can see!And i can relate to all of you because i have been to the uk and to spain so many many times. Tessa, i would be very interested in knowing if you have a good doctor and if pots is well known in spain! Because nobody of my relatives (and i have got some in the medical field in madrid) have heard of it. Thank you all for posting! Carinara
  19. This happened long before I got diagnosed with pots 10 month ago. When i first got really sick, i went a neurogolyst. I had to lay down in the waiting room because i couldnt stand upright. The nurse did some little tests on me and got really unfriendly with me because she wanted me to stand still and i couldn't. When i saw the doctor to discuss the test results afterwards, he told me that there is nothing wrong with me and that I am most likely under a lot of stress. I told him, that i have no stress and that I know that something is not right. I explained all the symptoms to him and startet to cry because i was getting so mad, my daughter was only 2 years old then and i couldnt do all the things i wanted to do because my body didnt allow me to. My doctor looked at me and said: Well i dont quiet understand why you cry now! You must have a depression or an anxiety disorder. He gave me some pills and send me home. This really got to me! up until that day i never ever thought about that kind of subjects and now the reason for all my symptoms and not being able to stand up should be all in my head? After this bad episode passed and i felt a little better i followed my doctors advise to go to a sauna to strenghten my body circulation and to pick up my sports again. So i startet doing sports and felt really bad during and after it. I even went to the sauna and got really sick. I tried all this for a very long time. The sauna made me feel so bad, i didnt tolerate more than 1 minute at times. But my doctor kept telling me that in his opinion ist just my anxiety thats trying to stop me from sports and such things. When i demonstrated him how my body reacts from sitting to standing he just ment that there are no records of how a body should react whilest standing. It took many more years before i finally got diagnozed.
  20. Hello everybody! This site has been such a great help for me! In fact, it helped me to get finally diagnosed about 10 month ago! After years of bad suffering and doctors telling me that they don't know whats wrong with me, i found this wonderfull website and a POTS Doctor in Germany. He did a TTT and my HR went up from 80 to 150 in 10 sec. For the first time in over 10 years sommebody knew what was wrong with me and understood my suffering. Iam so glad that this place exists. Sometimes Iam wondering if iam the only member from Germany or Europe in here? If there are any more, i would really be interested in what doctors you see, or were you got diagnosed? Thanks a lot for your time and effort carinara
  21. Hello everybody! thank you all so much for your replies! Tilt Table training was mentioned here, i never heard of that. The next Tilt Table is over 200 km ( about 150 miles or so) away from were i live! I dont really want to try something like that on my own by standing on a wall or something like that, because of me getting symptomatic so quick. How do you all do your tilt table training? I find out though, that standing time is much better for me in the evening!
  22. Hello again, glad to hear that iam not the only person on this planet who feels this way. The medicine i take is a beta blocker and atacant which is a medication against high blood presure. I dont know how it is in the U.S. but in Germany where I live. Nobody knows much about POTS. I only saw my POTS doctor once ( and i found him through this web site :-)). He told me that i shouldnt take any otherer medicine, because my blood pressure gets quiet high at times, more so when i lay down. Midodrine highers the BP even more, so thats why i stick with my medicine i have been taking for the last 4 years. I dont know how often you all see your POTS doctors. If i have a question i can always ring mine and ask him things. But to be honest, i learned far more on this website and through my experience in the past 10 years than through him. Our Family doctor doesnt know much about POTS, but she is willing to learn. At the moment I tell her about it and print out informations for her.
  23. Hello Deucykub, thank you for letting me know, how you deal with these situations. After i read your note, i remembered, that my doctor told me a long while ago, that i can take Lexotanil (thats something similar to what you take) if i get in them sort of situation. But i have got a problem with taking tabletts. I try to avoid it where i can. My experience over the past years was, that i do react highly sensitive an often have many side effects to all kinds of medicines. Thats why i always hesitate and rather not take much. But like you said. Maybe i should just take them with me and if a really bad or exciting situation happens, i will know that i have some kind of tool that will probably relief my symptoms a little bit. I wish you all the best and thank you as well for your compliment on my english :-). carinara
  24. Hello everybody, This is carinara writing to you from Germany. I am so glad that I have found this web side. It helped me so much understanding whats been going on with me over the past 10 years and finally finding a doctor who diagnosed me after testing me for POTS. Sorry, that my english is not 100% correct but i hope you can all understand me. My body reacts to all sorts of things like heat, food, exercise and so on. I do my best to deal with all the symptoms, for example eating tiny meals, not bending over, try not to stand for longer than a few minutes, not talk to much and move my head and so on. But what really gets me, is how my body reacts symptomatic to any kind of stress, positiv stress or negativ stress or to emotional situations. I am normaly a mentally strong person with strong believes. I use to help where I can. But now it seems like my body reacts on its own. For example: Today I saw how an ambulance car came and picked up my neighbours husband because he is old and ill and needs to go to the hospital. My old self would go over to my neighbour to make sure that she is ok and offer her my help. Today (like so many times before) I saw the ambulance and my body reacted badly, it took me a while just to get my heartbeat down and my lightheadness away, and now afterwards I feel totally exhausted. It really gets me down, because mentally I can deal with the situation today, its always my body reacting so symptomatic that all i can do is try to relax, breath and try to help my body to get into balance again. These also happens when i get really excited. For example on my daughters birthday when i want to surprise her with a nice present. My body cant stand the positiv kind of tension and reacts exactly the same way. Its like my body makes no different where the tension comes from, it doesnt matter if its A positive or a negative occasion. My body reacts the same! It makes me sad, because i feel how I sometimes try to avoid happy, sad and exciting things because of all them symptoms. Isnt that what life is all about? Sometimes when i get in a discussion at work, i want to really state some facts, but it takes only a few seconds befor the tension causes me to become very symptomatic again. Sometimes I just go for it and let it all out, but then afterwards feel very ill and have to go home or try to find a place where i can lay down for a while. More often i just try to avoid discussions now! But really i do like to have a good discussion from time to time but i cant without getting really ill. Does anybody of you experience the same thing? How do you deal with it? Iam half spanish with a lot of temparament. This temperant i have to meditate away all the time. This makes me sad.
  25. Hello everybody :-) Every morning my alarm clock wakes me up 45 minutes before I actually have to get up. I take my medicine, put my compression stockings on and slowly sit down on a office chair with wheels and roll to the living room. I sit on the couch and drink my drink that i prepared the night before. After 30 minutes i take my chair aigain roll to the bathroom to get ready for work. After all that i wake up my daughter and wait for her to get ready. That way i have no stress in the mornings and a lot of rest in between things. I also have a hand ventilator with the option to put water in it to spray. Its a great help and i always take it with me. I event went to a concert the other week. I sat down and had the ventilator on the whole time. I never leave the house without my ventilator. At work i have a big ventilator (fan) just in front of my legs. Last sommer i found out that it is a great relief when it is warm in the office. It makes it a little easier to stand up if i have to. (Hope you can all understand my english)
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