carinara

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.

Hi Daisy, The situation about your daughter reminds me of myself when i was a child. I was a happy go luky type of girl but i also got very anxious at times to a point how you experience it now. Looking back, i know that i never felt quiet well healthwise. Dont get me wrong, i participated in every sport you can think of, had a lot of friends and spend much time outside in the sun but i never quiet felt right and i didnt know how to explain it to my parents because i thought that it must be normal to feel like that and tried to blank it out. There were times when i was running around with my friends and felt so dizzy, but nobody knew. When i told my parents they said things like: you have been outside for hours and now that your home you are complaining (they thought it was just some kind of tactic for me to get out of doing other things around the house). I also remember when for weeks i didnt want to go to school because i felt disorientated, dizzy and over all not right but i had to go and at some point in during the class i felt better again. This was the time when i started to worry about dying. If i heard about a disease i became so scared that i will have it and checked myself and drove my parents mad because i kept asking them question about different illnesses. When i heard in the news that somebody poisened some schoolmilk somewhere and that some people had to go to the hospital because of this (of course they described the symptoms they had as well), i was frightened so much, that i stopped drinking milk in school. All this went on and on. I was only a child and as i look back now, i was only trying to find explanations of why i didnt feel right. I always wanted my parents around me because i was so scared that something would happen. But back then i didnt realize what the real problem was. I just didnt feel right but nobody would notice because i still tried to be an active child and there were periods of time were iam sure the symptoms dissapeared, but up to this day i do remember loads of situations were i was tachy, dizzy, and scared to death whilest being a child. Please go and get your daughter testet. I honestly dont think that somebody can fake a TTT under the eyes of experts. If somebody is "only" anxious without having POTS the HR wouldnt change that much from sittin to standing. And on the reverse, if a HR is that high during standing the pure act of sitting down wouldnt drop the HR dramatically if its "only" anxiety (hope you understand what i mean). Please take care, you and your daughter are in my thoughts. Carinara

i keep reading that many of you have underlying issues that causes or dributes to your POTS. How did you find out about them? I allready went to 2 different autonomic departments to get testet. In the first hospital they diagnosed me with POTS and did all the autonomic testing. At the second hospital they did the autonomic testing again and added a Mikroneurographie and some blood work to check my catecholamines. They confirmed my POTS Diagnose and send me home. When i asked them about all the possible underlying causes mentioned on dinet, they just told me that the world of medicine is not that far yet to know were POTS comes from. These doctors i have seen are working together with Vanderbuilt in the US, they travel back and fourth quiet a lot, so i assume they know what they are talking about. I just wonder why they cant recommend me any further tests to find out what causes my POTS. I am confused because so many of you do know their underlying causes. How did you find out about them? What can i do to find out more? Thanks a lot carinara

what Maxine wrote makes sense to me as well. It might have been a combination of things. You wrote that you had breakfast that day but how many hours were between breakfast and going to the movies? Long before i got diagnosed with POTS i went down every avenue i could think of, trying to find out what was wrong with me. At one point i talked to my doctor about getting a machine to messure my blood sugar because i couldnt think of another explanation of what was happening to me.There was one day were a real big and bad episode hit me, i messured my blood sugar and it was really low. My boyfriend took me straight to the doctor because i felt so bad and ithought i would faint any second. I also wanted to show my doctor my blood sugar numbers. By the time we got there and he took my blood (within 15 minutes) my numbers were normal again because our bodies are trying everything in order to put the blood sugar in balance again. 1 hour later it happened again. So i read a lot about this subject to get as many informations as possible. Sometimes when they say the blood sugar is in normal range, it might be on the low side of normal. Some people might feel ok with it but for other people it might be too low and they get hid with big time symptoms or when it gets real low with a shock. Now i keep something to eat with me all the timein order to keep it stable. Its also important what to eat because some foods raise the blood sugar real fast within a very short time but doesnt stay long in the system the result of this is, that within a short period of time the bloodsugar dops even lower then it was to begin with. I also have to eat a bite every 30 minutes or so. Maybe you should google and read about how low blood sugar effects people and just because your numbers were ok the moment they took your blood, there is the possibility that they probably werent a few minutes prior to that. Please dont get too upset and dont let anxiety spoil your pregnancy (i know thats easier said then done). My thoughts are with you. carinara

Did you eat something and/or did you take some food with you (besides popcorn) to keep your bloodsugar stable? Maybe it dropped too far? No matter where i go, i always have something to eat with me to prevent this from happening? Compression stockings are important as well. I can totally relate to you. Not that i fainted whilest sitting before, but i know how it feels to get one MAJOR episode where all the symptoms turn up within minutes and 1000 times worse then usual that all your calmness about living with POTS goes out the roof and it feels as if you start all over again with worrieng, being scared and insecure. Hope you are feeling better now, carinara

Hello everybody, can somebody please tell me which foods cause vasodilation? I know that carbs do so, thats why i stopped eating them. but iam sure there must be more out there, i have already asked my doctor but he can't help me on that one. Thanks a lot carinara

Oh yes, there were a lot of things i did instinctivly right. I got diagnosed in 2007 but was sick since 2000. When i first discovered the wonderfull dinet web site, i cried when i read the ?what to avoid? section on it, because it was 100% what i have avoided automatically and instinctivly after so many years of suffering. Like: - Eating tiny little meals spreat all over the day - I took showers sitting in the bath tup with cool water - Most of the time i sat down whilest fixing my hair - I stopped playing the flute because it made me soooooo very dizzy - When i tried to lay in the sun in the back yard, i put a big ventilator next to me and sprayed myself with water to keep cool. - I didnt drink alcohol anymore because it made me sick - I stopped smoking because the nicotine made my HR go mad and triggered all kinds of symptoms - I refused to take medicines because of my severe medication sensivity - I sat down whenever i could and sometimes on the floor, if i had to stand for a minute i always moved my legs. - Instinctivly i always put my knees up to my chest while i was eating because it would make me feel less dizzy - When my daughter was little i started changing her diapers on the floor - I started sleeping with my upper body elevated because otherwise i could feel my heartbeat all over the place Iam sure there were many more things i did, but thats all i can think of at the moment. Because nobody knew what was wrong with me, and doctors kept telling me that i was fine and nothing was wrong with me, i pushed myself and pushed myself so bad because i felt as if i just didnt try hard enough. Everytime i had to do one of the above mentioned points i felt bad inside and weak and silly. I bet you can relate how relieved i was when i finally discovered dinet, and read all this ?what to avoid? points on the dinet site, then found a doctor through dinet and then finally got a diagnosis carinara

Iam also very very sensitive to all kinds of medications, thats why i got myself an appointment to get pharmagenetic testing done. I have first read about this option here on dinet a few weeks ago. I have to get some bloodwork done in 2 weeks. I really hope it does help.

Hello everybody i always noticed that about half an hour after i eat carbohydrates my symptoms increase a lot. A POTS doctor told me once, that the reason for this happening is, that carbohydrates cause blood vessels to dilate. Because i felt more symptomatic in the past few weeks (probably due to the hot weather) and because i need to function at work as good as i can, i tried to cut almost all of the carbohydrates out of my food in order to have some more calculated controll over my body . I must say not eating carbohydrates at all really makes a difference to me. But every now and then mostly in the evenings like today, i do eat a tiny piece of bread or some potatoes but like i mentioned before, after about 30 minutes my symptoms increase big time for about 1 to 2 hours after eating them. During these episodes i notice (besides all the other usual symptoms) that i cant breath right, it feels as if there would be a hole somewhere in my body were the air dissapears. The other thing i notice is that in during these times my left side and arm feels heavy and i can,t lift my left arm over my head (even whilest sitting down) because it causes my HR to do funny things plus i get very dizzy. After a little while (maybe when the carbohydrates are out of my system ) these weird symptoms are gone again. Has anybody experienced this before? Can somebody explain to me why dilated blood vessels would cause breathing problems and problems with the left arm? Thanks a lot for your help, carinara

Iam so sorry to hear what you are going through at the moment. I have been there myself. My ex husband never took my illness serious (i wasnt diagnosed yet). He thought i made it all up and that i just didnt try hard enough. I then was alone with my little one and was very very scared. But in the end i was happy that all these negative energies my ex husband brought home every day, were gone. Even though you probably cant see it at the moment, all of this will make you stronger and in the end happier. You dont deserve something like this. You are not alone, there are higher powers that pretect and guide you through all of this. You are going to learn many lessons now that other people dont ever have to learn. Please trust life and know that something good is coming out of it in the end of the day. You are in my prayers, carinara

I can totally relate. Whenever i can sleep in like on the weekends and on holidays, i feel much worse. Thats the reason why i always get up early.

I try to avoid garlic because eating it makes me sick. I get tachy, cold all over, shaky and my BP drops. I used to love garlic but noticed that i felt really bad every time i ate some. I dont react as bad to onions as i do to garlic. But onions hurt my stomachbig time. carinara

Hi everybody, I have a stupid question that comes into my mind every now and again. Well, i try to keep the story short. It already happened twice that some friends and people asked me whats wrong with me and why i get dizzy so quick and what my brain fog and the "disorientated" feeling is all about. When i tried to explain to them, that these symptoms occur due to some blood loss and oxygen loss in the brain due to upright posture or heat and so on, they looked at me and said:- so what if you have not enough blood in your brain and you start doing silly or dangerous things because you are so confused???? Then they came up with things like: The possibility to grap a bottle of cleaner instead of a bottle of limonade and drink it, or to put some dog food in the pan or to do something stupid like leaving the house naked..., Well to be honest, their stories did scare me a little bit even though i feel i know that this is not possible. But then i read in one resent post that somebody wrote that If I am feeling that way, I may "mean to pick up a pen", but I "pick up a knife"... (maybe this is just an english saying, i do sometimes drap into the language barrier!!!)., thats when i remembered the situation i mentioned above. I do remember that years before i got diagnosed my daughter was only a baby, i felt so sick and dizzy all the time that i did develop some fears of being afraid of doing something i didnt want to do due to brain fogg and dizziness, like i double checked on the food i prepared for her and so on. Since my diagnosis in 2007 i feel so much better because i know what iam dealing with now. But today i found being a little worried again due to what i read, hope you dont mind that i got this of my chest now, but it does cause me some insecurity. Any ideas? And sorry again for this silly question.

Hi Melissa, I am on a strict diet since 5 years as well. When i eat carbohydrates My system goes out the roof as well but as long as i only eat proteins iam ok. I also eat only tiny little bites spread all over the day. A doctor once told me, that carbohydrates. cause expansion of the blood vessels and thats 100% true for me. And that eating too much at a time causes blood pulling in the stomach, thats also true for me. Concerning the drinks i drink i have to make sure they dont content much sugar otherwise my blood sugar goes crazy leaving me with worse symptoms again, so i drink only water mixed up with a little apple juice. I also wear my compression stockings every single day. My workplace doesnt have air conditioning either so i put a ventilator under my desk + a tiny one in front of me, every now and then i spray myself and my compression stockings with water, thats ok most days. All the best for you, carinara

I get motions sick very easy. I noticed though, that the severity of my motion sickness changes from time to time. Before i got sick with POTS i loved to go on rollercoasters or go bungee jumping but these days are over now, i guess. Situations that make me feel motionsick are: When i walk out of an elevator i feel as if iam still moving for a while afterwards. I also noticed that the ?still moving? feeling in a more severe way when i get out of a plane. When i move my head, turn around quick or look on the floor i also get motionsick so i try to move around in slow motion when i notice that iam more sensitive. Like the past few weeks for example iam getting motion sick so very easy that even moving around in slow motion doesnt help me. I sometimes get motion sick when i watch a ?fast? movie on tv or in the cinema or when i look from one person to another in during a conversation. Does anyone also get motionsick because of nodding their head in during a conversation? I do all the time. I have tried to keep my eyes shut whilest talking but then feel stupid about it and open them up again. It feels to me, as if i would just be capable of a good conversation if i keep my eyes shut and don?t look from one person to another....., (thats why prefer conversations over the phone or via emails.) Watching a life tennis match would be a nightmare for me i guess. Before i got diagnosed with POTS i remember going grocery shopping on many occasions feeling very motionsick just trying to find the foods that i needed to buy by looking around me. So i figured i just turn my whole body around and not just my eyes or head if i search for something. I must have looked like a robot to other people. But even turning my whole body around didnt stop me getting motion sick. Sometimes i feel as if noises make me motionsick as well. Like vor example in the cinema. If there is a loud noise moving from one speaker to the other i have to hold on to my seat because it feels like iam falling off it. Driving is ok as long as it is a smooth and easy car ride. As soon as it gets too fast with too much braking i get sick as well (you know we have got the autobahns over here in Germany and my partner loves to drive fast, all this braking and speed makes me sick as well). carinara

Hello neighbour, a very warm welcome to this wonderful forum. I live in germany and like you already mentioned, there are not many useful POTS information and articles around in the german language. I hope that you will benefit from this forum as much as i do. By the way, the next time i will be in austria i will loook around for a man with a kilt on :-). Have a nice week und servus :-) carinara

It looks like i have to appear as a witness in a court case wich is and will be very emotional for me. The date is set at the beginning of august. All my POTS Symptoms flare up big time when iam under stress or in a stressfull situation. Iam very concerned about how i can get through this situation. First its probably going to be very hot and there is no air conditioning in the courthouse. I probably have to walk up many stairs which is a problem for me also. I dont even want to think about what will happen in case i have to stand up at some point in during the hearing. Iam really concerned about how my body will compensate all these things combined with the added emotional stress. My HR and BB get really high (HR of 200 and BB of 180/135 are possible) Please i need any advice i can get to handle this situation. I would really appreciate your help. Thanks a lot, carinara

I was in a 10 weeks rehab in 2007. I was hospitalized and one of my biggest concernes has always been my higher blood pressure (with and without tachy). (Because that was the only thing my doctors could messure prior to my POTS Diagnosis). MY BP went up to 180/130 at times. Other times it was too low but 90% of the times it was to high. Well. In the hospital I spent many weeks on discussing my BP Problems with many different doctors. They meassured my BP all the time, during standing, during stress and so on. Whenever i thought and felt that my BP must be really high, they meassured it straight away. Sometimes it turned out to be high, sometimes it was normal. They put a 24 hour BP test on me twice. I asked them all the questions i always wanted to ask, like: do i have to lay down when my BP is so high? Do i always have to meassure my BP and to make sure it stayes down, do i have to stop going to my limits? What numbers are still ok and am i in risk to get a heart attak or a stroke??? Well, all kind of different doctors told me the same, they said, as long as the BP goes down (during the night when you sleep for example) its ok. Only if you have real high numbers ALL THE TIME and OVER A LONG LONG PERIOD OF TIME, (not days, but months and years) Then it CAN cause damage to you and only then you are at a higher risk for stroke and so on. In my case the BP does come down during the night and sometimes during the day as well. If you look at the monitoring of the 24 hour test you can see how the BP curve comes down in during the night. They said, that there is no danger and i should not avoid activities because of the BP because thats not necessary. They explained to me what BP numbers people reach, in during sports, lifting weights and so on. These numbers are not dangerous if they dont stay up there 24 hours a day! They even showed me their numbers and i could see, that they had higher numbers from time to time as well. The doctors and the hospital stuff really wanted to try to help me get rid of my BP fear and did everything to help me not to worry about it anymore. Day said, that everybody has episodes of high blood pressure in during the day. Thats normal and ok. They also told me not to meassur my BP anymore. Iam so thankfull that i made this experience and that they helped me not to focus so much on my higher BP. Now, i still meassure it before i go to bed at nights, but thats it. Iam not worried about it anymore! Maybe you can make all the necessary tests on what can cause high BP, and if they all turn out ok and if your BP does come down as well, then i wouldnt worry about it too much. I do take a BB as well. All the best carinara

Nice to hear from you. Iam so sorry for what you have been through. I can so relate to you, because i also went through a ?nightmare? divorce with POTS. I?m so glad that you have so many nice and loving people around that Are helping and supporting you. Isnt it wonderfull how the universe works? At first we might be scared to do the final step and get separated or divorced because we don?t know how to handle all of this (especially with POTS) on our own. But then, when we finally do, another door openes up and we are blessed with love from other sources.Please never give up looking for the blessing in every situation, even though sometimes it feels like there is none, there always is one in the end. I wish you all the best an am looking forward reading your posts. A big hug from carinara

I forgot to mention, that i keep a diary since many years. Every evening i write down what happened in during the day, how my health was and what there was for me to be proud and thankfull for. Since 2004 i write my diary into my MDA wich is also my mobile phone, that way its just a click away to find out how i felt on each and every day. Writing and reading up on my diary for so long, i can truly see a pattern of bad periods followed by better periods. When iam real bad i find notes were i felt as bad as that before followed by better times. Thats helps me a lot.

In the last 10 years there were 3 occasions were i was really really sick. On every of these occasions i was bedridden for weeks, couldnt go to work for 5 months each time. I was totally dependend on other people because i couldnt do anything without severe symptoms. I was hospitalized for weeks and was very worried about my little girl because i am a single mum. All these was before i got diagnosed with POTS. Nobody knew what was wrong with me. On many occasions i thought i was going to die because my whole system seemd to be failing. In during these times i always knew that all of this must happen for a reason and that i just havent discovered the reason. I tried to be patience. I always remembered that these bad days are going to pass again some day, like they had before. I tried to change my perspective looking at my condition. Maybe it sounds funny but i tried to look at my situation as if i would make some kind of a a scientific work out of it. Like a researcher searching and finding out what was happening to me. Just as one day i would hold a medical speech in front of many doctors presenting them all the insight of this illness or writing a book about it. This changed my point of view into another directon. Being a spiritual person also helps me a lot. I also always try to find the blessing in every situation. Wishing you all the best. carinara

Hi Jana, if i can go to the cinema depents on how i am feeling on that day. Sometimes it is no problem at all and on other times i have to leave or sit there with my eyes shut. Its not as if i go to see a movie very often, but if i really want to see one i'll go and try to see it. Thats how it is with everything in my life now, i just have to wait and see how i feel and then i decide if i can do something or not. Sometimes i cant do things because i cant tolerate anything that wires up my ANS, other times (sometimes a few hours later) my ANS is reacting different and all of a sudden i can do things. carinara

Recently i have been reading posts about Pharmacogenetic testing. It suposed to give doctors the ability to know beforehand how a patient will metabolize different medications. Pharmacogenetics (often abbreviated as PGx) is the study of the ways in which our genetics affects our ability to respond to medications. It is a relatively new field, its progress accelerated by the Human Genome Project and the study of molecular biology. A small number of genes controls the way our bodies react to medication. Researchers have identified variations in these genes and have correlated these with variations in the way patients metabolize different drugs. It is now possible in many cases to predict how a given patient is going to react to a given drug. Physicians armed with that knowledge can adjust dosages or even select alternative therapies, which decreases their patients' risk of experiencing Adverse Drug Reactions (ADRs). ADRs are a serious problem, and can result in hospitalizations, disability and even death. Studies show that ADRs take more than 100,000 lives and cost the healthcare system billions of dollars every year. Pharmacogenetic testing can significantly reduce the risk of ADRs by helping physicians identify which of their patients are at risk, and guiding them in choosing alternative therapies. The ultimate goal is fully individualized therapy Iam super sensitive to medications and experienced the weirdes side effects in the past. Whenever my Doctor prescribes me something besides my BB, i usually dont take it because iam too afraid of how it effects me. I just got over a cystitis without taking any medication and wonder what i do next time i come down with something. Has anybody of you had any experiences with Pharmacogenetic testing? I read somewhere, that ist just a simple blood test, is this true???? Does it really help? I always thought the medication sensivitiy is due to an error in our ANS but reading about Pharm.testing makes sense to me as well. I really look forward to your responses. If its really a good thing to do, i will search the internet for information In german and get all the information about the procedure and so on together to present it to my doctor otherwise nothing will happen if i leave it up to him. How frustrating it is, that i always have to do the research on my own. My doctor always asks what to do, because he?s got no clue. I give him the instruction and German articles to read but when i see her again i always find out, that she didnt even touch them...... Thanks a lot carinara

So interesting question ... did many of us have undiagnosed POTS as young people and furthermore what speculation do we have on the impact this may have on our current situation. i also wonder if this is was happened to me. When i was a child / teenager i felt dizzy and tachy a lot. I remember not being able to stand long. Another thing is, that my doctor prescribed me my first BB at the age of 14 and it made me feel even sicker. Well, nobody took me serious anyway. Then this period was followed up by many years were i felt quiet normal and ok. Then 2 years after i had my child (i was 27 then), my body acted up big time POTS wise. Ever since back then it waxes and wanes. I was finally diagnosed with POTS at the age of 36. carinara

I was just reading a post that reminded me of a phenomenon i experience a lot but never got around posting about it. Iam interested in finding out if any of you have experienced not being active enough being a big trigger that worsens the POTS symptoms. In during my work week, i stick 100% to a routine that works best for me. I go to bed around 9 and get up at 6. I watch the food i eat and a million more things in order to get through my workday more or less ok. I always push myself to a point were it doesnt hurt me yet. Then, when it comes to the weekends and/or holidays ( which iam always looking forward to), i feel much worse, then i experience that my circulation becomes worse, i feel weaker and dizzier... ( i have been experiencing this for many years now.). In during the week, i always look so much forward to the weekend because in my mind, iam dreaming about being able to sleep in and relax more but every weekend i find out, that ist not doing me any good. I figured out, that my body might function better under some kind of ?tension? because if i get too relaxed it harms me much more then it helps me. This is something i have experienced for many years now. Even during my real bad POTS Phases in 2000, 2004 and 2007 when i was bedridden for weeks and off work for months, i had the urge of somehow getting up and doing stuff no matter what. By the way, when i say getting up and doing stuff, i mean getting up and sitting on my office chair with rolls on and doing things with this chair, very carefull in slow motion ) and not too much. By being active i dont mean doing sports and excersising,( i used to do marathons and miss it sooooooo much) just everything besides laying down too long. Its always so hard to find the middle way between doing too much and too less I would really be interested in finding out, if any of you have experienced this phenomenon as well? And what your opinions are why this occurs???. Thank you very much to all of you. I am so thankfull that i have found this wonderfull site with all the wonderfull people in it. My life is so much better with all of you in it carinara