carinara

I am very sensitive to motion as well. I sure know, thats it started after developing POTS about 10 years ago. Before that, i used to go Bungee jumping, I loved amusement parks and did all kind of stuff. Now, even turning around quick or sitting in the back seat of the car makes me motion sick. Going on an elevater or if i go too quick on my office chair with weels on makes me really dizzy.

I take a very tiny dosis of BB on a daily bases and plus needed. When i have big time flare ups (which happened 3 times in the past 10 years) when i was bedridden for a few weeks, i used to take them if needed. I always have one with me just in case. I found out, that even a tiny tiny dosis of BB makes my heart slow down. So i do break the tabletts in half . The past few months i didnt have to take an extra one. carinara

Sorry that i cant help you on that one. But i have always noticed that i get very dizzy and feel much worse, if i lean forward. Even if its just a little bit. Leaning back makes me feel better as long as i dont lay to flat. I have no idea why this is happening. It just feels as if the blood flow to the brain gets a little disturbed or so. All the best for you carinara

Thank you all for responding. Italy went very well for me. Our appartment was only a few steps away from the beach and it was in a dark and shady forest. The temperature was perfect for me. It never got to hot. We always made sure that we reserved a chair and a shady place near the water. So i walked there with my compression stockings on under some long jeans. Since it only took 2 minutes to walk to the chair i didnt get to hot and symptomatic. I took the stockings off on the beach and loved to swimm. As you all know, the water is a very good compression solution. There was always a very nice brize on the beach. I couldnt believe that i didnt get too hot. It was fantastic because i could sit in the sun for quiet some while. The wind made all the difference to me. Back at home i cant tolerate being in the sun at all, but on the beach with the wind blowing, staying cool was somehow no problem. We just went out in the evenings when the weather cooled down a bit. I never had to walk long distances. Only on two occasions i couldnt avoid feeling really sick for hours. Once i went into a outlet store which had really nice and thin trousers to sell. There were about a million people shopping in there and the temperature was like in a sauna. I really wanted to get 2 pairs of them nice trousers and walked around a little an tried them on. Boy, i felt so sick with it but i made it until i found them. Then i had to go outside, and lay down for the rest of the evening. (But the trousers are sooooooo nice :-) The other time was in venice. I wanted my daughter to see venice so much. We took a short boat trip there. Which i handled quiet ok. If you have ever been in venice you know, that you have to walk a lot, because there are no streets and no cars. When we arrived in Venice i noticed that the temperature was very hot there. I had my compression stockings on and long jeans and after five minute walk i started to feel big time symptomatic. I had to sit down straight away. Then all of a sudden a gondolier with his gondola passed by and asked us if we want to go on a little gondola trip? First i said no because riding on them is very very expensive. But then i thought about what else we can do in venice with me not beeing able to walk? I thought of my daughter and decided to give her a pre Birthday present that she will never forget. So i suprised all of my family with a gondola trip through venice. I just asked the gondolier to bring us back to the place we got in the gondola because i couldnt walk long distances. The gondola trip was very nice, and after my symptoms got much better after sitting for about 15 miniutes, i really enjoyed everything very much. The only thing was, that the gondolier let us off the gondola in some other part of venice. It took us about one hour of walking back and i felt so bad. I honestly didnt think i would make it. But like i said, no cars no busses in venice. At one point my boyfriend almost carried me. After we got to the harbour and i sat down for a long while and trank a lot, i started feeling better. All together it was a very very nice holiday. It went much better than i have expected. I plan on putting some holiday pictures on the "faces of dinet" site soon. Thank you all for your wonderfull tips. I used a lot of them. Corina, if i would have known, that we were so close to each other i would have been very happy if we would have met. Maybe next time :-) All the best to all of you. carinara

Hello everybody. Living with POTS and lots of orhostatic Problems for many years, i do now know many of my triggers. But there is one thing were i am kind of helpless and dont really know what to do and how to behave. I know that my body overreacts to any kind of stress, positiv and negativ. When iam aware of a upcomming situation that can set me off, i try to prepare myself for it. But sometimes this just doesnt work. Yesterday for example. Monday is the day were i have to work for 8 hours (the rest of the week i work 5 hours a day). I work as a secretary and iam so glad that i can sit down allmost all the time. With many tricks and a lot of adjustments i can manage my job ok most of the time. I felt quiet good yesterday and didnt have to many symptoms. Then all of a sudden i wittnessed how somebody got fired. I felt sorry for that person but tried to stay calm and get on with my work (I didnt even know that person anyway). All of a sudden i could feel the adrenalin shooting in. My heart startet to pound like crazy, my hands got cold and sweaty, i had bad visual problems and i felt very very dizzy. It feels as if my body got ist own brain and reacts how it wants to. I think i can handle most situation in life if it comes to handling them psycholocically but how my body reacts is a different story. Because i experienced these symptoms so many times before, i usually dont panick. But they still scare me. I really dont know how to behave when these episodes occur. They make me want to jump up an run around but this is not possible with POTS it would make it much much worse. I have to keep sitting down whilest my body goes mad. Afterwards i feel bad for a few hours. Thank god, i didnt have to drive home yesterday. Any ideas on what else to do. to make them episodes go away quicker? To me, it feels, as if lots of adrenalin is shooting out in my bloodstream triggered by a emotional, stressfull, exciting situation and that i have to wait until it gets out of my system again. Is that right? Is there a way to get rid of this adrenalin shot quicker? Does this have to do something with POTS? Do we handle adrenalin different then healthy people? It also seems, that if i had one adrenalin situation, that for a few days, my body seems to let go of adrenalin (or whatever that is) more easily, like as if my body then gets reminded to produce more adrenalin or so. Does anybody else experience these sort of episodes? Is there something i can help to make it pass away easier and faster? When i get orthostatic symptoms due to being to long in a upright position, i know i have to sit down because thats the only thing to make me feel better. But what can i do when this adrenalin thing happens and iam sitting already? Why does my body overreact in that way! Is it to much adrenalin that flows into our bloodstream or do our bodys react in a wrong way to even a little bit of adrenalin??? Thanks a lot for your help

Hi Corina, glad that you had such a nice birthday in Italy. We were in italy at the same time and my daughter celebrated her 12 th Birthday there too. I am so thankfull that everything went well and that i could manage somehow. You know what? We stayed near venice, only a little distance away from where you stayed. I wish you all the best and hope you are well. carinara

Hi everybody, can somebody tell me how "faces of dinet" works? I remember reading something about it a few month ago but i looked again today and didnt find anything anymore:-( Thanks a lot Carina

I wish you all the best and that you already feel better! Take care

Before i got diagnosed with POTS, i used to push myself going to places most of the time. I felt so sick, dizzy and lightheaded that it was a nightmare almost all the time i went somewhere. After i got diagnosed last year, all of a sudden i understood what was happening with my body. This knowledge and the experience of the past 10 years of suffering and learning how my body reacts in certain circumstances allowes me now to go out regularly. When i have a real bad POTS flare up and iam bedridden (which happened 3 times in the past 10 years). I of course cant go much places. But even then i try to do something outside of the house every day. Like somebody carying me to the car and driving around for a little while. Now my body got a little bit in balance again. I still cant stand longer than a few minutes without getting dizzy, and i do have to watch every little thing i do in order not to provoke my body to go crazy. When i go out now i make sure i dont have to walk for longer than a few minutes. Most of the time if i go somewhere, somebody is with me anyway. that means, that i can always get out of the car in front of where i have to go! I just try to sit as much as i can and make sure that i dont overdue the walking bit. Thats how i hold my job down as well. Sometimes i get so excited because for example i see something in a shop, that i just stand and walk to look at things, and most of the time this does provoke a big time flare up were i have to lay down in the car and wait for hours before i can get up again, but most of the time i just try to sit and walk for a few minutes and sit again. I sit everywhere if i have to like. on the street on the floor, i dont really care anymore about what other people say. As long as i know there is a place for me to sit down i go almost everywhere. I have my little fan with me i case i get to hot, i have an extra BB with me in case my heart goes mad and i always have my mobile phone with me. all the best for you carinara

I get this too. I have POTS. I get the same symptoms when i sing, talk to much or to loud, sneeze and cough. All the best carinara

mmmhhh, i never heard of a Id Bracelet like that here in Germany! Do you wear it all the time in case of an emergency, so the doctors know what they are dealing with? What is it for? I just imagine me wearing a bracelet like that, first of all i dont believe the doctors would find it and if they would somehow, they would read that i suffer from POTS and they wouldnt have a clue what POTS is anyway. Can somebody please explain to me what this is for? Thanks carinara

on my chest!

rqt9191,Like i said, this was many years before i got diagnosed with POTS. Nobody had a clue what was wrong with me back then and i was glad that somebody at least found something that wasnt right. My POTS Dr. said as well, that dysautonomia and too much blood volume doesnt go together, but he is also suprised that it does help me for some reason. By the way, i stopped the pill a few years ago and it was a good idea because i did feel much better afterwards.

jenwic, Well, the doctor told me back then, that my blood volume was to high (the hospital i stayed at had some special medical machines that can meassure that). He scanned my heart whilest my legs were liftet higher then my head and showed me what happened. He said that whilest laying flat, my heart cant handle the increased blood flow to my heart and that this causes a stress situation to my body and sweats an tachy starts. Back then (like i wrote before this was long before i got diagnosed with pots) i took the pill for Many month without a break because my gyn?kologist thought that my health problems are due to hormone problems. So it made sense to me as well because i didnt have a period in a long time which made my blood volume higher. The doctor also told me to give a little bit of blood everytime i can feel the symptoms (like higher BP or tachy) get worse. Now that i know i have POTS and that in theorie more and not less bloodvolume should help. I did stop the giving blood thing. But i startet it again because it does make a difference to me. Its only 50 ml a month ( not even a cup full). Elevating the bed plus this giving blood thing are both ment to decrease the big bloodflow to the heart in during the night. It seems to work with many people here who have heart and BP problems. There was a tv show with my doctor about it here in germany a while back. They showed how you can get the highest effect with as less medication as possible. This syndrom is called (Herzinnendrucksyndrom) which you would translate in heart inner pressure syndrom. Since i dont know anybody else in germany with pots i do not know if iam the only one in Germany. But i remeber reading on many pots sites that elevating the head end of the bed is a good thing to do anyway. So why not try it? Hope that helps you a little

I used to get them night sweats as well. I used to wake up and my chest and shirt was very wet plus my heart would be really fasr. This was before i got diagnosed with POTS. During a hospital stay i had the opportunatety to have a long conversation with a very good cardiologist, he eyplained to me, that the sweating and the tachy in during the night comes from laying flat. Then he went into an explanation about the bloodflow to the heart whilest laying down and so on. He told me to elevate the head side of my bed and try to sleep that way to release my heart. Since then (its over 4 years ago now). I have never slept or layed totally flat on my back again. My head and chest are always positioned higher than my legs when i lay down, and i found out that i feel better the more my my back is elevated. So i sleep more sitting then laying. I got diagnosed with POTS 3 years later! Since i sleep like that my nightssweats are more or less gone. A few times a year they still occur but these are often the times when i find my self waking up in a flat position (because in during my sleep i moved to much and didnt notice it), but before i used to get them on a very regular bases. It also seems to work with a lot of other people as well. Maybe you should try it also. All the best

[quote name='HoudiniCat' Than you everybody for your replies. HoudiniCat, on my TTT my HR doubled up and my BP went from 135/90 to 149/102. The test 'only' lasted 50 sec. because i could tolerate it anymor my heart was trying to jump out of my chest and all my symtoms hit me with such a intensivity that i couldnt handle it any more. I would really be interested in what your doctor tells you when you ask him why you still get the other symptoms if your HR and BP are normal. I would really appreciate it, if you would let me know later on. carinara

Hi Tammy, i can totally relate. Before i got diagnosed i tried and tried to keep up with the rest of my friends and family but i couldnt, i felt sick all the time. My doctors didnt have a clue what was wrong with me, so they told me as well to try harder. They suggested me to go to a sauna once a week to strenghten my circulation, i tried my best but felt really ill all the time but i was so stupid i tried it over and over again but it just didnt work. My HR went up the roof and i felt so sick with it, the same with sports to the extend that i was trying to skate a marathon. Back then i wasnt as wise as iam now, i kept going to this stupid sauna once a week and because i could only tolerate a few minutes in this very hot room, i was again told: well, you didnt try hard enough?!? Because of all them people telling me that i dont try hard enough (before my diagnosis) i even went on a pilgrim walk in spain with a heavy back pack on it in the hottest summer climbing the highest montains, i got so symptomatic i honestly thought iam going to die. But there again, i got told that i shouldnt panik over nothing, everybody feels dizzy at times and I DIDNT TRY HARD ENOUGH! I felt like a jerk all the time. I tried my best and went over my limit on a daily bases. Friends took it personal when i didnt have the energie to do things with them. They didnt understand. I lost one of my very best friends due to this and you know what? She works in the medical field and kept telling me that i should try harder. Now after my diagnosis i can feel that my family understands a little bit more. But still family and friends keep asking me to do things i cant do without being on risk to get really symptomatic and when i try to explain to them, they still let me know that maybe i should try a little harder. Well, i dont do it anymore. I do it only when i feel its ok and necessary and not when they tell me to. I can see how some friends look at me when they see me do one thing one day and i tell them another day that i cant do the same thing. They dont understand. Through all this i do know now, who my real friends are and who isnt. All the best for you.

I can feel a heart beat in my neck, when the normal steady heart rate is interrupted by an irregular one or when my HR shoots up or calms down and ist trying to be steady again. When i had a heart monitor on once i had several of them monitored. Afterwards the doctors said, that they are just some irregular heartbeats which everybody got. Normally you cant feel them, but for some reason i do sometimes. They said that they are normal and i shouldnt worry about it. all the best carinara

Hi Pat57. Thanks for the information. Well my HR doesnt get really low in them sort of situations. Its just that the tachy doesnt kick in sometimes. My HR stays normal or gets a little higher but not extreme high like in the mornings or in other situations. Sometimes when i get up my HR gets really up and at other times it goes only a little up and comes down to normal again. But it doesnt get really low.

Sorry, i forgot to add a part of the article i have found about POTS and NMH: What are NMH and POTS? Neurally mediated hypotension refers to a drop in blood pressure that occurs after being upright. We define NMH by a drop in systolic BP of 25 mm Hg (compared to the BP measured when the person is lying flat) during standing or upright tilt table testing. Although NMH may be slightly more common in people with a low resting blood pressure, most people who develop NMH during standing have a normal resting blood pressure. NMH is an abnormality in the regulation of blood pressure during upright posture. It occurs when too little blood circulates back to the heart when people are upright, and triggers an abnormal reflex interaction between the heart and the brain. NMH is sometimes known by the following names: the fainting reflex, delayed orthostatic hypotension, neurocardiogenic syncope, vasodepressor syncope, vaso-vagal syncope. Syncope is the medical term for fainting. Postural tachycardia syndrome refers to an exaggerated increase in heart rate with standing. A healthy individual usually has a slight increase in heart rate-by about 10-15 beats per minute--within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats per minute, or if it reaches 120 beats per minute or higher over the first 10 minutes of standing. POTS is an abnormality in the regulation of heart rate, not necessarily in the resting heart itself. Some patients with POTS in the first 10 minutes of upright standing or tilt testing will go on to develop NMH if the test is continued; the two conditions often are found together, and they are not mutually exclusive diagnoses.

Hello everybody! I just got back from my italy holiday. It went all very well and much better than i thought. Iam so thankfull for that. I noticed lately, that my body does correspondent differently to a upright position within the hours of a day. Where My POTS is really bad in the mornings.(heart rate shooting up upon standing and so on), i feel i can control most of the symptoms more in during the day, because i know many of my triggers and try to avoid them as much as i can. Then when it comes to the evening hours i noticed that my HR sometimes stays normal when i get up and walk. But as longer i stand or walk around ( 5 to 15 minutes) the more dizzy and lightheaded i get. I have to sit down quick otherwise i get really ill. I also noticed that sometimes my HR does shoot up but then after a few minutes it comes down again and the symptoms start. Sometimes when i sit down and wait until i feel better again, i can walk further for a little while and at other times it takes hours before i feel able to get up again. Iam diagnosed with POTS. But i also read that NMH and POTS go hand in hand with many POTS Patient. It feels like all the blood is Getting out of my head, leaving me with lightheadness, dizziness, tiredness and sensivity to all kinds of things. I also noticed that my BP drops upon standing when i get like that. When i get an episode like that, it feels like POTS Symptoms just without the fast HR. Does anybody of you experience POTS symptoms but without the fast HR from time to time? In my understanding the fast HR in POTS is because the heart is trying to compensate for the lossed blood into the lower body and legs. Is it possible that at times the heart doesnt try to compensate, the HR doesnt shoot up and at other times it does again? I dont really have a good POTS doctor and i don't know if its necessary to have another Tilt Table Test done just to confirm NMH along with PoTS. It wouldnt make a difference anyway or would it? (i dont want to have another one) Most of the time my BP is to high whilst sitting or laying so iam not allowed to take any kind of medicine that make the BP higher.I do take a Beta Blocker wich helped me a lot with the tachy. Do i have to get more into discovering whats happening to me in them sort of situations or can i just leave it and think of it as some other strange dysautonomia symptoms. To be honest i dont want to play all this doctor running around game anymore. When i got diagnosed last summer at an autonomic section of a hospital, i did explain my symptomy to them. They did a few tests with me and after the TTT was positiv they said that my symptoms are all due to POTS .I was happy and relieved about finally having a diagnosis. But now, since i know so much more about PoTS it makes me wonder if them sort of symptoms i have at times, need to be looked further into? I would really appreciate your opinions!

I can totally relate. I also have a job and a child and i know how frustrating it is not to be able to keep up with things and try to keep the symptoms somehow under control or deal with them during work when you are not able to lay down. In order to get through a workday i now try to make things easier for me. I try to sit all the time, i'm not driving to work myself a workmate is picking me up. I get up 2 hours before i actually leave the house. When i get home i need to rest. When my batteries are recharged again, i try to help my daughter with her homework. If iam not able to, i ask my boyfriend to help her. My parents help where they can as well. It seems like my whole family is involved in making things easier for me. I think it's a great idea if you have found somebody who will do the homework with your child! Maybe there is some other stuff that you can get help with like shopping, housework and so on? A great help for me is also my office chair with rolls on (dont know what the english name is). I use it almost all the time. The chair is next to my bed and when i get up i sit on it straight away, i never stand the first hour after i get up! Maybe if you had one of those you feel better as well and you could also be more mobile in the classroom? I also use a little hand fan very often, it seems to help me when some of my symptoms start. Have you tried compression stockings? They make a big difference for me. I wish you all the best, hang in there. Iam sure that when you and your family are in a good routine again, like after your husband has worked a couple of weeks in his new job and you see that your daughter gets on ok with her homework, that everything falls more into place again. carinara

Hello everybody! Iam off work at the moment because of our upcoming italy holiday in the next days! Last year we had to cancel our holiday because of a bad POTS Episode and this year i promised my daughter to take her there, no matter what. I hope it all turns out ok. Therefore i wanted to slowly get the packing done today. All this bending down and turning around (even though i did all this chores sitting in a chair) made me (much more than usual) really dizzy, kind of disorientated, lightheaded and 'seasick'. Normally i try to avoid this tasks, but today i had (and still have) to do them. All this symptoms are things i deal with every day. But when the symptoms get much more intense than usual to a degree that i feel extreme disorientated and out of balance, dizzy and so on, i get anxious with it because even though ( i hope) its not going to kill me, it sure does feel life threating to me. I had them spells so many times before in the past but somehow they still scare me. All i can do is lay down and wait. Thats usual the point when i start feeling nervous with it because it feels like 'my lights are going off' any second and thats when i dont know if i should ring somebody just in case? Before i got diagnosed one year ago, i had no clue what was happening to me for years. Now after i know so much more about POTS it does help a lot, but still when i get very symptomatic i lay down with the phone next to me and instead of just letting go, i watch myself and try to figure out if and when i have to call somebody before i faint? Die? Something else happens? I only called somebody once or twice in the past.Then i feel that i can more let go and relax because i know that somebody looks after my 11 year old daughter and if something happens to me somebody is around to help and do something like calling the doctor if iam not able to or whatever?!?! Like i said, i do get them symptoms on a daily bases and i do have to lay down every so often. Iam not talking about them normal daily symptoms. I'm talking about them symptoms that make you feel really spaced out, it feels as if all the blood is going out of your brain, you ears ring and your vision is really blurred.I would really be interested in how you handle it when you get extremely lightheaded, dizzy and disorientated and you are alone at home and cant get up? How do you stay calm? Is there a sign when you have to call an ambulance? (its probably a silly question but thats whats running through my mind in them sort of situations) Thanks a lot carinara

yes, and it often changes during the day. I dont know why?!?

I was in a 10 weeks rehab last year. Before i got diagnozed with Pots, i had many years of suffering and no doctor could help me at all. Nobody had a clue. After my diagnosis last year (i had a very bad POTS episode) I was hospitalized and one of my biggest concernes has always been my higher blood pressure. (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 to low but most 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