carinara

i mean, if you have vascular typ of eds, there must be some symtoms that come with it or not? I don?t bruise easily, i dont have joint problems at all, iam half spanish, so my skin is rather dark not light! Like i said, i never thought about the possibility of even getting tested for eds because i know my POTS Symptoms so well after so many years having them. In the past years i had so many scanns of almost every part of my body, my aorta plus all the main heart and kidney veines are all ok, nothing wrong with them. I mean people must know somehow or feel something if they had this type of eds or not??? Like i said, iam quiet content at the moment, and get on with my limitaions due to POTS and so on. After i found a very good POTS Specialist i was sooooooo relieved, he must have said something if he suspected something like this going on or not? 5% of the world population have got a MVP. Thats not very unusual. The Mikroneurgraphy Test was good as well. Should every POTS patient get testet for EDS? And whats with all the other disorders that can contribute to POTS? It looks like i have the hyperadr. type of POTS (i just have to wait for one more blood test to return, but its almost certain) Because i read on this forum that some people with hyperadr. POTS also get MCAD, i had a look into that as well... But i don?t really want to drive all over germany again + all this stress with it, to find somebody who knows about eds if i dont really feel like having it. I mean i must notice something if i had it or not???? iam confused. Should everybody with POTS get tested for it??? Thanks carinara

Last night before i went to sleep i read this post. Reading about the vascular EDS typ scared the living daylight out of me. After so many doctors appoinments in the past, iam quiet content with my POTS Diagnosis now and i never thought about searching about other illnesses that might come with POTS. I saw 2 different POTS specialists which testet me for hours, they never told me that it is necessary to get checked out for EDS. In fact when i saw my "all time favourite" POTS specialist in November, i remembered reading about EDS on the Dinet homepage and therefore mentioned, that i can bend my legs quiet much and that my sister and my daughter can do scary things with their hands and fingers by bending them back. He also knows about my mild Mitral valve prolaps. I couldnt sleep well last night because i wonder if my mild Mitral valva prolaps means that i have the vascular type of EDS? I got checked out so often before i was diagnosed, had scanns of almost everything in my body. My MVP is nothing to worry about is what every doctor said so far. What should i do now? What other symptoms come with this form of EDS? i have no joint problems at all, so i dont really know what to do now? After 10 years of searching whats wrong with me and finally finding a Diagnosis i already adjusted to mentally, do i now have to start searching again? Sorry about this negative post, but reading about the vascular EDS is the first news since i got diagnosed 1,5 years ago, that really got to me. POTS isnt life threatning, we all know that, that is what makes all the difference for me. Whenever i get symptomatic i can tell myself that nothing bad is going to happen, with this EDS typ though, its all different, and i catch myself worrieng about getting a stroke now. I dont like that and it scares me because before i got diagnosed this was my main concern and i was so relieved when the POTS specialists and all the other doctors told me that there is no reason for me to worry about something like that. That was the news that made all the difference for me, i got my self confidence back and i didnt worry anymore. Reading this post changed it now and i dont know what to do. carinara

I can totally relate as well. Speaking always makes me feel dizzy and symptomatic. I love to talk to friends on the phone, i also need to talk at work but i get symptoms almost all the time. I found out that it helps when i dont speak with a loud voice!. Playing my flute is impossible. when i do these things it feels a little bit like the valsalca maneuver test. (or blowing up a balloon). I experienced, that as soon as my body feels some tension, it doesnt matter if it?s possitive or negative. My ANS goes mad. This is one thing that really bothers me, because i love discussing things and talking about interesting subjects. But i can never do that without getting lightheaded and dizzy and then i just listen to the others instead of saying much myself anymore. Inside i feel i have so much to say, but my body just goes mad. I guess that our bodys are so sensitive, that even the adrenalin that gets set off when we are excited is often tooooo much for us to handle. But i cant stay in a meditation mood 24 hours a day????????? Well i guess iam learning to be a better listener now

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

Hi Ernie, my thoughts and prayers are with you! Whenever i see a specialist i take a recorder with me and record the whole appointment because there is alsways so much talking and explaining and taping the conversation takes much stress off me trying to remember all thats been said. Maybe you also want to ask the specialsts there if you are allowed to record the conversations. that way you can focus more on the questions. All the best and keep us postet. carinara

Hello bibiz you asked at what point your HR gets dangerous. I also worried about that question before. Maybe this earlier post will help you not to worry to much. http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara all the best carinara

I was very symptomatic and sick on and off for 11 years before i finally got diagnosed with POTS in 2007. In these years i went on 2 cruises and got very seasick both times. I also flew about 10 times in that period of time, which didnt make me feel much worse then i normally do. Maybe you should try to get on a little day trip out on a ship first, before you go ahead and book a cruise that lasts 5 days? I couldnt tolerate the movements of the ship at all but hopefully your reaction to it will be totally different.. I wasnt sure, if i should share my experiences with you, because i dont want that you get discouraged in joining your family on this trip, but then i thought, that if i would have known back then what i know about POTS now, it would had helped me a lot. Now i personally wouldnt go on a cruise again. But like i said, thats only my experience and i do get motion sick quit quick at times. By the way, i never heard of reasons that POTS Patients shouldnt fly???? can somebody explain to me what these reasons are???? My family is also planning a family trip in April. They all want to fly to Spain. I flew there so many times before i was diagnosed without getting to stressed out about it. For sure i always had to sit down and wasnt able to stand for longer then a few minutes. But that is all possible on a plane. So what are the reasons not to fly? All the best carinara

Hello, i can also totally relate. Maybe you want to have a look at this post: http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara all the best Carinara

i strongly beliefe that all this happened to me for a reason. Even though life has been a hard struggle at times i have learned so much i would have never learned without this illness. I trust in god and life and wonder what happens next..... All the best for all of you

I am so glad that you finally got a diagnosis. I know exactly how you feel because the same thing happened to me. I was sick for more than 10 years before i got diagnosed in 2007. In those 10 years nobody could help me, doctors didn't believe me. And when I showed them how my HR jumps up as soon as I stood up they laughed at me and told me that there was nothing wrong with me. When I said that I can't stand longer then a few minutes before I get really sick (for example whilst waiting in line) I got told that I have a panic disorder and that I didntt try hard enough. A Therapist told me that I should put myself into as many situations as I can that normally make me feel sick (he thought I had a panic disorder). All my symptoms he said are due to anxiety. I had a job and was a single mum and I pushed myself through all these silly suggestions. I went to the sauna, I stood in lines and tried to do everything that healthy people do. But I felt so sick all the time and my self trust went away. When I finally got diagnosed, it all changed. I now know what I am dealing with and that made a whole world of difference to me. It feels like a great rock fell off my shoulders! I am so much more confident in everything I do now, because I KNOW that there is really something wrong with me, and if I feel that I can't do something because it would make me sick, I won't do it. I don't stand in lines anymore and I don't go to saunas anymore and I dont feel bad about it anymore. I hope that your diagnosis will also change your life, like it has mine.

I have a little fan thats works via USB Stick blucked into my computer at work. And i also have a little fan that works with batteries. Whenever i am confronted with strong smells (for example my boss smokes like a chimney at times) or parfumes or other things. I turn one of my fans on and put it right in front of my face. That does help me a lot. carinara

My BP is all over the place as well. In all the years before i got diagnosed with PoTS i always thought that my BP is making me feel so bad and so weired. After i got diagnosed with POTS in 2007 everything fell into a different picture. I stayed in the hospital for several weeks and my BP got tested all the time in different situations my BP rates were from 110/75 to 170/130! But it never really made much difference to me symptoms wise. Sometimes when i felt really bad and i thought that my BP was high, it ended up being more low and at other times i thought it was low but then it turned aout being high. In my case my symptoms and me feeling bad is more an autonomic thing and not so much a BP thing. carinara

When i had an appointment with 2 very good POTS specialists in November. I had to go through a lot of testing! My BP is always on the higher side. When i had to stand up after 3 hours and So they could perform some more tests on me, my BP raised and my HR almost doubled up. Like always i started to feel dizzy and lightheaded after about 1 minute. My BP stayed high but the blood pooling in my legs was there anyway. The doctors pointed at my legs and showed me. In fact thats the first time when i watched my legs and noticed how they changed their colour. My BP was high all the time (170/110). They explained to me, that when i stand up the blood dissapears into the lower body. Thats why i feel so dizzy and sick. The HR and BP are just tools trying to compensate for the blood dissapearing or pooling.

Hello Janie, welcome on the Dinet Forum. Hope this post will help you: http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara all the best, carinara

In my experience, me feeling the worst in the morning has nothing to do with circadian. More so with my system being relaxed and therefore trying to stabalize again. I experienced so many times, that as long as i am on the go and stick to my daily routine i feel the best. I'am on a weeks holiday from work at the moment. Whenever i fall asleep in during the day whilest trying to meditate, or reading a book and wake up again (even if i just sleep for 10 minutes). I feel as bad as i do in the mornings and it takes a long time for my body to adjust again. Thats why i try not to ever fall asleep whenever i still have an appointment later on, because i never know how long it will take before i feel stable again. When my christmas holiday is over and i return to work. I will stick 100% to my routine ( getting out of bed 2 hours before i have to leave the house, doing all the morning chores sitting down). Otherwise i wont make it. And i make sure that i never take a nap. carinara

Julie, thanks for sharing the two articles. very interesting! I found my doctor being a part of the second article about POTS. Thats also the doctor i asked about MCAD. There is so much more to learn! carinara

Julie, thanks a lot. Thats very interesting. I will definately get checked if such a bad episode appears again. At least i know now, that there might be something else involved and that there is a way to check it out. When these episodes happen i feel so helpless. Now, i feel that there might be something to help me manage these times better by looking into MCAD. I havent found any articles about in in german yet. Can anybody tell me if MCAD is a serious condition? Can it seriously harm us? carinara

I also have to eat every 2 to 4 hours in order to keep my blood sugar stable! About 4 years ago i had to meassure my blood sugar daily so i developed a feeling for it and found out what my body is doing. I have totally changed my eating habbits since then and i always stick to them in order to not to mess my Blood sugar up. Now i know how i have to go about it to keep it stable. I always have food that keeps the blood sugar more stable, with me. I would never ever leave the house without plenty to eat. (just in case). I also stoped eating sweets and chocolate because they cause my blood sugar to drop after a little while and make me feels bad. carinara

I'am just wondering if the MCA can change from time to time. Whenever i get in a real bad POTS hole that lasts for months and my body gets totally out of control, i do experience some symptoms that are listed under MCAD like shortness of breath, different smells send me into attacks, have to urinate up to 6 times an hour, my face feels swollen and hot and so on.... In during them times i do experience my worst attacks and my body seems to either be in a state of a attack or needs to sleep to wake up to another attack. After a while though, my body seems to get more in balance again and all the before mentioned symptoms disapear. Just to return a few years later again. That hapened already 4 times in the past 10 years. Iam now wondering if it's possible to get MCAD just sometimes and not all the time. Because most of the time i seem to manage my PoTS symptoms but like i said something strange happens after a while and my body goes crazy and i cant do anything about it. After reading this post, i wrote an email to my POTS Doctor yesterday. He said that he will discuss it with some expert but he thought it would be a good idea to get some blood if ever i return in such a bad health stadium and then go from there. What do you think? is this possible? carinara

Hello everybody! Last year when i was in hospital during a very bad POTS episode, i didnt know were life was taking me. I have been sick for more then 10 years, was bedridden for weeks on and off and couldnt go to work for months. By the time i went to the hospital i thought my life is falling apart, i couldnt stand up anymore, i couldnt look after my child, i was so sick and i felt totally helpless. No doctor could help me, nobody took me serious! Then when i got diagnosed (due to this wonderful site and the physicians list on dinet). I felt a great relief! After so many years of suffering and doctors telling me it must be all in my head and i should just try harder, i finally knew that i was right all the time, something was really wrong with me. In the hospital i set myself little tiny goals. Everyday i wanted to walk for a little while, even if it was just a few meters. So thats what i did. I had to sit down very often, feeling afwul but i made it to a sign just outside the front door of the hospital. When i looked at it i found a a poem that made me cry straight away because it just touched my soul. From that day on, i walked to the sign every day just to read it. I had to get there! When it was time to leave the hospital after a few weeks all the nurses and patients of the hospital floor were i stayed, said goodbye to me! Thats when i thanked them and told them about the poem i have found and how much it has helped me to understand and strengthened my way of viewing things differently. They were all touched and i ended up reading the poem aloud to all of them. I'am sure you can imagine how nervous i was and how my body reacted. My HR shot up to 160 and i felt sooo dizzy. But i made it and it was all worth it. I just found an english translation of this poem written by S?ren Kahl, hoping that you will like it. And i want to wish everyone of you a happy and healthy new year. And iam so glad that i have found all of you! Thank you ! Lots of love from carinara The Miracle of the Pearl There is a story of a pearl here at the beach. She arose from an oyster by a little grain of sand. It penetrated to its middle and the oyster put up a fight. But the oyster had to live with it and lamented: Why me? When a pearl is born, it is born through great pain. And the oyster believes it has to die, rage and sadness filling its heart. It starts to endure, to jacket this grain. Little by little its lament falls silent and also its powerless anger. Years went by. Day by day at the bottom of the sea the oyster opens and closes. It feels as fit as a fiddle. The pearl is born. It glitters in the sunlight. All the pain is forgotten, but the miracle is not. Every pearl teaches us to pray, it helps to trust and to understand, because the Creator of all things has seen your pain, as well. Now grows the faith, hope, love, and even joy deep in the sorrow. That's how your pearl is born, too, a gift for all times.

My favorite helper is my office chair with rolls on. I use it almost all the time when iam at home. With this chair i can get almost all the houshold chores done like, cooking, hoovering, hanging the washing up and taking it down, cleaning the kitchen, sink, bathroom, toilett and so on. As long as i sit and take my time, it seems i can function. I find it very good that i can change the height of the chair with one hand grib, because for some chores lts much better do sit higher and for other ones its more convinient to sit lower. Before i started to use this chair i couldnt do half the things i can now. At first i thought, that i should use the chair only every once in a while so i dont get used to it toooo much! But going to work and having to walk around sometimes in order to get my work done ( iam a secretary) + walking from the car to my office and back. I feel that i am on my feet enough, Why make it harder at home if i have a solution that makes me feel much better? At work i dont have the opportunatey to roll around with my office chair and almost every time i have to get up for a few minutes i feel the symptoms hidding me. So at home, i do my best to prepare things in order fo me to feel better and a simple office chair has brought me so much relief. I can sit so low on it, that it is no problem to use my legs to push myself through the house. Thank god i have tiles in almost every room. But its not really a problem on carpets either. I once rented a wheelchair. But i found it too heavy and too wide. I didnt fit through the doors as easily as i do now with this slim office chair. And everytime i use it, its also a little training for my legs. All the best carinara

When i first became sick, my daughter was only 2 years old. I couldnt stand at all then and i felt soooooo sick all the time. My doctor didnt beliefe my suffering. He just told me, that i must suffer from some kind of anxiety and that its all in my head. If i would have known then what i know now. I would have trusted myself more and not listen to what my doctor said. I was reading a million anxiety books and got so scared and insecure about myself. I missed so much quality time with my daughter because i wasnt the mother i wanted to be. I couldnt stand longer than one minute and was bedridden for a while. Everybody told me i shoult just try harder and i had such a very bad consciense all the time. I cried a lot because i just wanted to run around with my little one. And i couldnt because of something that is just in my head??? If i could turn back time, i would be much more relaxed now because i now know what i am dealing with.

When i have a bad POTS Episode (my last one was in 2007 and i was off work for 4 months). i have the same problem. I have to go to the toilet at least every 15 minutes. It`s a major problem for me then, because getting up in during them times is very very difficult for me because i get big time symptomatic. I never know what to do then because on one side i should drink as much as i can and on the other side, the constant getting up thing to use the toilet makes me so sick. One time when my partner drove me to the hospital which is about 2 hours away. We had to stop 10 times because i had to use the toilet. I was crying in the car because i wasnt really able to stand upright in the first place and then also had to find a toilet. All the best carinara

I used to love hot baths but now i havent had one in over one and a half years. I just take cool showers whilest sitting down now. I have an office chair with rolls on which i use to roll around in the house almost all the time. When i have a shower i roll my chair in the bathroom get undressed whilest sitting on my chair. Then i sit in the shower and keep the water just warm, never hot. Then when iam finished i get out of the shower and sit back in my chair again. That way getting a shower is not a major problem for me anymore. I used to get so sick before i knew my triggers. Like i said, i used to love hot baths but i felt very sick after them most of the times and had to lay down for a long while in order for my body to calm down again.

I wish i would have known earlier that: i shouldnt believe people when they tell me that it's only a "mind over matter" thing, when i feel dizzy and sick all the time and that i should just try harder (i was a master in trying harder anyway) That it's ok to ask people (mostly family) for help if ist needed and don't feel bad about it. and that i dont have to put so much pressure on me + have a bad conscience because i cant to all things by myself anymore. That when i plan things beforehand because i know off my limitation, it has nothing to do with being anxious. Because it seems to some people that not being able to just jump up and do things sponanioulsy, means being anxious and nervus, BUT THATS NOT TRUE I wished i would have known about POTS 10 years ago when it all started. My daughter was a baby then and i felt so sick almost all the time.