carinara

Hi Endure, i have just read your post today and hope that you are feeling better now. I just wondered if the doctors in Turkey speak enough english to understand you? In case you need any translation help, please let me know, my partner speaks turkish fluently. All the best, carinara

Here is the link to the post mentioned earlier: http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara all the best carinara

Heavy meals cause some POTS Patients to have bad blood pooling in the stomach due to digesting the food. If i dont watch what i eat i can set of real bad symptoms because of the blood going more into my digesting system and away from my brain and other parts. Before i got diagnosed i suffered bad tachy almost everytime i ate a normal size meal. Now i just eat tiny little meals and avoid carbohydrate because they set my system off as well (always about 20 minutes after eating them). My POTS doctor told me, that carbs dilate the blood vessels.

I can totally relate to what you are saying. I had 3 bad POTS episodes in the past 10 years. During these times i had no controll over my body, i felt exactly how you described it in your post, everything set my ANS off, i couldnt tolerate noises, smells, lights, my HR doubled up as soon as i tried to stand up all the time, i was so sick, just crawled to the toilet not knowing how to manage to use it. I couldnt stand up at all. Back then no doctor found out what was wrong with me and they ended up telling me that i must be toooooooo sensitive. After a while i started to believe my doctors a little and tried to put my mind over my symtoms but that wasnt possible. My instinct kept telling me to get up and walk and thats what i did every single day. I always waitet until it was dark outside because in the evenings i always felt (and feel) a little better, i craweld in the back yard and walked a few steps and craweld again. For me its sooo important to have the feeling that i do something about it, train a little every day. I asked my family if they would take me out for a little car trip every day and they did. Sometimes it took me ages to get to the car wich was right in front of the house. I always had my hand fan with me in case i got to hot. If i felt ok, we would stop at a shady place and i would try again to walk for a little while. Sometimes it was possible but sometimes not. This little routine made me feel more normal in during those weeks and months, my daughter was only a baby then and i wanted to be the mother i always dreamed of. After a while my body got more in balance again so that i could return to my job. I have POTS symptoms on a daily bases but these extreme symptoms are gone for now (again). these episodes happened to me in 2000, 2004 and 2007 and even when i had to sit in a wheelchair because i couldnt stand up without very bad symptoms (in during the day), i would find a few minutes in the evening (when i felt a little better) to go out the house and walk or crawl and to go on a little car trip with somebody from my family. This helped me a lot mentally. On each of them episodes i missed about 4 months of work, but after a while my body seems to get back into a better balance wich allows me to do more things again. Even tough i cant stand longer then a few minutes now, the extreme sensitivitys are gone for the moment and that makes a great difference. Right now it seems that i can controll my triggers much better but i know that if i get one of them episodes again that once again i have to wait it out and walk again. The only difference now is, that i got diagnosed with pots in 2007 and i finally know whats wrong with me, were before i didnt. Maybe it would help you as well to set tiny goals every day. All the best carinara

most of the time talking makes me very lightheaded and dizzy. Sometimes i have to lay down whilest on the phone ( at home) and close my eyes and whisper in order to try to keep an conversation up. The same thing happens to me if i try to sing, blow my nose, or try to play my flute. (i guess its similar to the valsalva maneuver). It also changes from day to day or hour to hour, yesterday for example i had no problems holding up an conversation but at other times its a nightmare. carina

Everytime i get a new pair of compression stockings (about every 6 months), i also get headaches at first. I figured that its because they are tighter at the beginning and after a while they become a little more comfortable and wider. I had to take them off the other day (after work) because i felt that they made me ill. But i do need to wear them in order to manage my job.

I had my first bad POTS crash down, shortly after my daughter was born but even before that, i remember that i never felt "right" As a child and teenager, i remember not being able to stand long without getting dizzy and lightheaded, it was impossible for me to stand and play my flute (in an orchestra) at the same time, i always pretended that i would do, but didnt. I also remember feeling out of it, i used to describe it as a feeling of not being 100% there, and this one really scared me back then. Another thing was the tachykardia i experienced from time to time. Thinking back i remember that i got prescribed my first Beta Blocker at the age of 14. But i didnt tolerate them at all. But i still had quiet a normal childhood and teenage years, i did what everybody else did, but very often i felt very bad with it.

Hi Angela, with my last post i didnt mean you personaly i meant people with POTS in general. I guess i didnt choose the right words. That was because i was at work when i wrote my post and i had to write quick plus english is not my native language, i guess i just got carried away and wrote without having the time to be more detailed about what i meant. Sorry if i offended you. All i wanted to say was that a difference of people with POTS and people with ONLY panick attacks (without POTS) is that the HR of people with POTS usually comes down after laying down where as the HR of people with ONLY panic attacks (without POTS) stays high no matter if they lay down or not. Their HR is not connected with their position. carinara Carinara, As you should know, we are all different, therefore reacting differently to individual situations. My HR does not always come down when I lie down because of my IST. It is not because of anxiety. Sometimes I have to have medical intervention to bring it down. Angela

Not necessarily, I have POTS AND IST. My HR doesn't always go back down when I lie down... Just a thought, Angela Hi Angela, if you lay down for a while, eventually your HR would go down. But if you would keep standing (without sitting down) the HR wouldnt go down. A person with panic attacks would also get an attac laying down if he is confronted with something that creates panic within himself it wouldnt make a difference if he would lay or stand.

Hi Julie, thanks again for your reply. Iam going to take your and Prof. Molderings informations with me on my next doctors appointment. Thanks also for listing the symptoms for mastocytosis/MCAD- Reading trough them, it looks like i dont have many of them. But like i mentioned before, when these periods occur, my body reacts much more sensitive than usual. The last time i had these "attacks" was in 2007. So i guess for now, i can just do the blood test. And if ever my body gets into this bad state again i will have to to the urine tests. Julie, please let me know if you think so also? Now blood test, and if i ever get that sich again the urin test???? THanks a lot carinara

like it was mentioned before when people with POTS lay down, their HR goes down. When people with panic attacks lay down, their HR doesnt change. People who suffer from panick attacks learn in their therapies, that they should stay in the situation that frighten them until their panic goes away. For example: if somebody has a panic attack standing in line in a supermarket this person should stay in this situation until the panicky feeling goes away and then leave the situation. For people with POTS its recomended to avoid standing in long lines, because of the blood pooling and so on. So if somebody with POTS tries to stay in this kind of situation it would never get better. It would get worse and worse. For people with panick attacks its also recomended to keep putting themselves in situation that cause their panick to come up, the theorie behind is, that as more often as they experience that nothing bad will happen to them, the easier these situations get. If you tell somebody with POTS to expose yourself to situations like, standing in line, going to the sauna, and so on on a daily bases to overcome the panicky feeling, this will never happen.

Hi Julie, thank you so much for your reply. I have contacted Prof. G.J. Moldering via email yesterday. He wrote me back today saying, that he doesnt see patients and that i cant come and make an appointment with him. With his email, he also send me some informations about mast cell diseases in general. But most of the informations was about mastocytosis. He told me to take these informations to my doctor and show her. Well, out of experience i know, that my doctor wont take the time to look at all these pages. Up until today, my doctor hasnt even read the articels about POTS i brought her. (All the facts that she knows about POTS are from what i have told her and my experiences with a POTS specialist 500 km away) So in order to get further in getting testet for MCAD i need to minimize the informations i give to my doctors, otherwise nothing will happen. I know she hasnt got time to get deeply involved. So just for my understanding (so i can pass the infos on to my doctor) does MCAD has something to do with mastocytosis? and, what kind of Blood tests should my doctor do on me???? I really hope somebody can help me, otherwise iam stuck. And again Julie, thank you so much for giving me all this information and the contact details of Prof. G.J. Moldering

I always try to find the blessing in every situation and crisis. And even if it might seem at first if there is none, it always turns out that there is one. Before i was sick, i took things for granted. I just got up, walked wherever i wanted. I did my sports, went on marathons and besides my full time job, i also was an aerobic instructor in the evenings. Now since iam not able to do these things anymore i look back and am thankfull that at least i once experienced these things. The memories are inside of me, i can remember them clearly, i can feel them i can even "smell" them sometimes. In my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. Having this illness tought me to be thankfull for the little things in life. I get excited about silly little things now, now i appreciate situations that before i wasnt even aware of. I try to learn as much as i can out of suffering with POTS, just as if i was researching this illness in every subject to learn and help other people with my experience. I believe this illness was given to me to teach me many things. Iam looking forward to the future and wonder if my destiny is to be healed. When and if i become healed, i will use this experience to help others who are struggling through illness. My way of dealing with POTS didnt just happen over night either. It took many years of not knowing what was wrong with me, fighting it, and all the rest of it. Learning Is always a process. Its important to let all your feelings out, its ok to cry to even scream thats all part of dealing with this. I wish you all the best and please try to find the blessings in your current situation. A big hug from carinara

Hi Alicia please have a look at : http://dinet.ipbhost.com/index.php?showtop...mp;hl=binocular all the best carinara

Hello everybody, i have a few questions about MCAD and i really hope xou can help me answer some of my questions. I had 3 major POTS flare ups in the past 10 years each of them made me bedrest for a while. My usual POTS symptoms are much much worse in during those times because my body then reacts 100 times more sensitive to things likes for example, smells, heat, noise, food....). Then I cant even stand up because my HR jumps from 80 to 160 within a few seconds and my BP goes rocket high as well During those times i experienced massive so called "attacks" even lying down. These "attacks" look and feel very frightening and life threatening to me and the people around me. (People around me used to hear my heart beat because it got so loud, fast and strong). It felt as if there was a motor in my chest going faster louder and faster and whenever i thought there is no way it can go faster and stronger, it sure did. i also started shaking so bad that the whole bed used to shake. Another thing i have noticed is, that in these periods i have frequent urination, that means i have to use the toilet about 3 times an hour or more all day long. thinking back, I remember that i had an "attack"right after: -smelling fingernail polish -eating something spicy -standing up after a stressfull conversation -waking up 1 hour after falling asleep (i was in the hospital back then, and they tried a new BB on me). Other symptoms i experienced in during those times besides the above mentioned are -Trouble breathing (like some weight is laying ob my chest) -My upper stomach feels as if i had swallowed a hairbrush -Hot face (but not red) -Tongue is white with a bright red line in the middle I must also mention, that i had these episodes before i was diagnosed with POTS (in 2000, 2004 and 2007). When i stayed in the hospital back then and prior to my POTS Diagnosis (Summer 2007) the doctors tried all kinds of different Beta Blockers and other stuff on me wich made me feel worse. The doctors even caught one attack on monitor and told me that its a normal sinus tachykardia, they also told me that my trouble breathing comes from hyperventilation. Even though i have told them that i never have breathing problems except in during those times, they didnt pay attention to it. After a while by body always seems to bounce back into some kind of balance again, like now. I still have to watch wathever i do and be carefull but these massive attacks, the frequent urination, breathing problems and the severe sensitivity to all kind of stuff are gone again for now. I still take a tiny dosis of BB now and feel very comfortable with it I have read a lot about MCAD on Dinet and searched in the internet about it but I have found out that MCAD is not an official illness or diagnosis in germany yet. I also contacted my POTS doctor, (i got diagnosed in 2007) he told me that he doesnt know much about MCAD and that he thinks that its just my POTS becoming worse for a period of time. But he suggested that if i ever get these attacks again we could take some blood and send it to the US (Vandy) Well, Iam not really happy with this solution because there are a few things about MCAD that scare me and make me feel insecure. I wonder if there are things i can find out straight away and not when or if i ever feel that bad again. (hopefully never ever) I hope you guys can help me out. By the way, i just have to wait for some blood work to come back. But my doctor and me are almost certain that i have got hyperadr. POTS Here are my questions for now: 1.) do the above mentioned symptoms sound like MCAD? 2.) is it possible that MCAD comes and then dissapears again for about 2 to 3 years? (because thats the time period when they seem to occur with me) 3.) are there any blood tests my normal doctor can do to check if i have got MCAD now (and not when i feel so bad again)? (My POTS doctor is 500 km away)and like i have mentioned before, MCAD is not an official diagnosis in germany yet. 4.) how do i know if these attacks are just (bigger then usual) adrenaline surges or really MCAD? (i have got hyperadr. POTS) 5.)I remember reading about anaphylaxis shock and MCAD,can MCAD cause an anaphylaxis shock? 6.) is it possible that these attacks i had were / are such analphylaxis shocks or can develop into one? As you can probably tell, iam getting a little anxious about this analphylaxis shock. In the past when i experienced these "attacks" i just waited it out, knowing that it wont kill me. But reading about analphylaxis shocks being able to kill people, really scares me. By the way, i dont have any allergies Thank you all a thousand times for your help and sorry for this long post. carinara

my heart goes out for you. Iam so glad that you found some adjustments that allow you to spend more quality time with your mum (and also go to the hairdressers). All the best and a big hug from carinara

i know exactly what you mean. During my bad POTS episodes in 2000, 2004 and 2007 (when i was bedridden), i often experienced these kinds of episodes. They scare the living day light out of me. It felt like my body reacts to every little thing 1000 times more than usual and there is no way to stop it. All i could do was wait these situations out. Back then i didnt know i had POTS, so not knowing what this was scared me even more, it always felt like dying. I hope that i will never get in such a state healthwise, but if i do, i will definately get tested for MCAD.

hello calypse, my BP is always on the high side, i usually dont suffer from low BP. carinara

The psychosomatic question was something that i got involved in very deep in the last 10 years. When i was so very sick years before i got diagnosed and my doctors didnt find anything wrong with me, they told me that it must be psychosomatic and you know what? there was a time when i really believed that it must be this way. I went to a million therapys, i went on two psychosomatic rehabs and i read many many books. I always wanted to become a psychologist myself and all them different therapies really interested me. I almost always ended up becoming good friends with all the doctors because we always had much in common.. I really wanted to understand what was wrong with me, and why i couldnt stand up and walk, why my HR just goes mad when i get up and why my ANS is so very sensitive. We searched through all my childhood, my whole personality we searched through and worked through. i had a happy childhood and there was nothing i could remember that went wrong with me so that my body gets that sick. One thera pist told me, that it must have been the occasion when i accidently fell of a chair when i was a few months old, in his opinion i must have gotten so scared that my heartbeat went crazy and my body remembered it and decided to always act like this, then i started to meditate and visualize how i could stay upright, it didnt help. Then i practised the "mind over body" game. Can you believe that i went on a marathon (fell and had a bad accident) and into the sauna once a week for almost a year ( made me so sick with a HR of 180). I know within myself that i tried all the things there are to try to get rid of this so called psychosomatic thing.When i got finally diagnosed in 2007, i was bedridden and couldnt even go to the toilet on my own (all that because i fell of this chair when i was a baby?) i finally found out about POTS and had a lot of tests done to me. I saw the german POTS expert and he told me once and for all, that POTS is not a psychosomatic illness, there is no way that you can control your blood flow mentally. Of course your way of thinking can make a difference of the way you handle this illness, but you cant cure it. And you know what? thats exactly what may experiences are. I remember reading about this also on the ndrf handbook (mind-body, page 63) it says: The ANS operates exactly at the border of the mind and body. The brain uses and depends on the ANS for the internal adjustments that accompany every motion a person performs and every emotion a person feels.....

I do all my housework in slow motion and sitting on an ordinary office chair with rolls on. I roll from room to room and its working very well. Maybe you can try it also, carinara

I can also just drink decaffinated green tea otherwise i get tachy. I tried it a couple of times, first i thought it had a positive effect on me and drank it on a regular bases, but within a few days i couldnt tell any difference to my usual symptoms.

Hello Brwneyedchic, congratulation on your baby boy and all the best for you and your little family, carinara

very interesting, thanks to everybody for your replies. ramakentesh mentioned an autoimmune form of POTS. Can somebody explain to me what this is? thanks a lot, carinara

Hello everybody, for years i have noticed that whenever i begin having a cold my symptoms improve at first. That means, that whenever i can just feel the cold symptoms creeping in like throat hurts, sinus problems, sneezing and so on. My POTS symptoms improve. Then i can stand without getting sick or tachy. i can go without food for hours without having blood sugar problems. A few years ago (before i was diagnosed) i would go for long walks and shopping trips on these occasions because i could stand for ages. two days ago i started getting a cold again. Yesterday and today i felt POTS wise much better again, i could stand without getting Tachy. Then when the cold is at its worst (like i can feel it now) all of a sudden my HR shoots up and my POTS Symptoms are much worse. Iam a little scared about going to sleep tonight because 8 out of 10 times my system will do the opposite of what i usually does then. That means that an hour after i fall asleep, i wake up with a real slow HR and i feel as if iam going to faint and cant move and cant seem to higher my HR. I usually never have a low HR. just on them occasions. Can anybody tell me why my POTS Symptoms improve at first and then get much worse after the cold is on its high point? Has this something to do with the autoimmun system. Thanks a lot carinara

Hi alicia, i really hope that you feel better today. Being at a funeral of a relative is the worst situation i can think of. To be honest, i sometimes thought about how i could handle something like that, and i have no idea, the emotional stress wouldnt allow me to stand up at all, my HR would go out of the roof. Since having POTS i cant be as spontanious as i used to be. In fact, every time i have to go to a social gathering its well planed. I only go to"necessary " events. (Birthdaypartys, Christmaspartys ...) I have to make sure, that i sit ALL THE TIME. In order to talk to people i have to make sure that i dont talk to loud (because of dizziness) and i can hardly eat more then a few bites, because otherwise my tachy starts. I usually eat a tiny meal before i leave the house so i can just concentrate on talking to people whilest iam on a social gathering. Sometimes i enjouy it and at other times it makes me sick so i have to get out of the situation to lay down somewhere. I wouldnt got out in during the week when i have to work the next day. Thats to much for me to handle. I got so used to being like this, that even though i cant just stand around like others or dance and so on....i try to make the best out of it. Most of the time, people dont even notice that something is "wrong" with me and i dont tell them either, i just sit there all night and if they think i am boring because i dont move and dont drink, i just smile at them. I honestly think that having to go to a funeral is the worst case, so if you go to a more positive gathering next time i hope that it will make you feel better. All the best carinara