carinara

I tell you though, one of my biggest triggers right now is simply not being on a regular wake/sleep schedule, and not being active enough. I graduated in May, and I've been at home while I am looking for work. It is killing me. My circulation has become terrible, I'm tired all of the time, and I feel so weak. I know when I start working that I will perk back up. Every time we had a vacation from school I would get like this. Iam so glad, that you are doing better  I can totally relate to what you said about not being active enough being a big trigger. 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. Then, when it comes to the weekends and/or holidays ( which iam always looking forward to), i feel much worse, then i also experience that my circulation becomes worse, i feel weaker and dizzier... ( i have been experiencing this for many years now.) Its interesting that you mentioned this happening to you as well ....... i was planning to write a post about this phenomenon on several occasions but never got around to it but i might as well just do it now. all the best carinara

Oh yes, i get this as well... ramakentesh, i really like your describtion: "altered position sense", thats 100% how it feels like. Any idea why our bodies don't sense the positions right? How is this related to POTS? carinara

Like summer, 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

Thanks so much for this touching and inspiring story. Reading through it made me cry. Love is all that counts. God bless you and your mum.

i make sure i get at least 8 hours sleep at night. Then my alarm clock goes off 2,5 hours before its time to get out of the house. I put my compression stockings on and take my BB whilest iam still in bed. I also drink half a litter and wait in bed (sitting upright) until i feel good enough to get up. My office chair with rolls on is just parked beside my bed. I sit on it and roll into the bathroom. I get dressed, washed and wake my daughter up all sitting down on that chair. I always prepare everything like breakfast and so on the night before. I also make sure, that i have at least 20 minutes to just sit down and relax before i finally stand up and walk to the car which is parked right in front the house. Thats how i manage. carinara

All the POTS specialists i have seen so far told me that the lightheadness in POTS occurs because of the blood pooling in other parts of the body whilest upright. Reading about the possibility of constriction in the vessels of the brain just concerns me now. That sounds very dangerous. Can somebody let me know if that is dangerous for us in terms of for example getting a stroke? Thanks a lot, carinara

I can very much relate to your symptoms. But one thing that really helped me was the suggestion of a friend to go and have a visual disorder test. When i got testet they found out that i have a visual disorder called `Winkelfehlsichtigkeit` i just searched on the internet but didnt find the english word for it. But i did find and english article about binocular disorders: http://www.vision-therapy.com/general_bino...ion_disorde.htm When i was diagnosed with this disorder a few years ago, i got some glases with a prism in it, and all of a sudden the symptoms got much better. These disorders are a little bit like POTS. Not many people seem to have heard of them. But all the symptoms you have described plus dizzyness, not being able to focus right, the letters seem to move around, headaches, fatigue and so on are all also symptoms of this disorder. When your eyes dont function correct TOGETHER they can make a lot of funny symptoms. And another thing as well. Them disorders have nothing to do with normal bad vision ( like when you go and get tested for some glasses). the testing for this disorders take at least 2 hours and you need special machinery for it. Maybe you should have a further look into it. All the best, carinara

Hi Broken Shell, i experience this every day even though my BP is always on the higher side. When i meassure my BP in during the day (which i don't do very often anymore) its usually never under 160/100, when iam under stress the numbers are even higher. The only time i meassure my BP now is before i go to sleep. Thats when my numbers are normal or a little low. I get lightheaded very easy. Almost every time i get up i feel as if i have not enough blood in my head. This also happened during my TTT and other tests while standing up even though my BP was on the high side. My POTS doctors didnt seem to think that thats unusual with POTS. carinara

a few weeks ago i bought some open toe compression stockings, i have been using the closed ones for ages but i figured that in during the warm/hot months the open toe ones would be more comfortable and cooler.Now after wearing them for a while i must say that getting them was a good decision for me. When it get too warm/hot, i can spray my toes with water... They definately make me feel cooler then the closed ones. Of course in during the winter months i will switch over the the closed ones again. carinara

great idea. I would really like to participate, but because i live in german, it might be too difficult to join! Maybe you can let me know how much it will cost to post the square over here and then i will send you the money for it ???? carinara

I used to love laying in the sun before i got POTS. It took only a little while before my skin turned really dark and i loved it. Now after developing POTS i cant tolerate the heat anymore so i came up with another solution to keep my skin a little tanned. I usually go to the tanning bed once every 2 weeks (but only in during the colder months of the year). I always take a water sprayer with me and put the fan and the airconditioning of the tanning bed onto the highest level. The combination of the fan, airconditioning plus spraying myself with the water sprayer keeps me cool all the time. I never got hot using the tanning bed up until now due to these little helpers. I usually tan for 13 minutes. The tanning bed cabine also has a chair, so i can get dressed whilest sitting down. carinara

Hi bluesman, i was diagnosed with a mild mvp. carinars

Hi Julie, there are no dumb questions :-) My blood was taken: 1-3-5-7 and 9 minutes after standing up.(not during an TTT) I had to sit down after 9 minutes because i started to feel sick. carinara

Thanks ramakentesh, next time i see my family doctror i will ask her about an autoantibody test. You wrote that people with EDS also get leg pooling and i also read the link you mentioned. It said that: 2) Normal Flow CFS/POTS is characterized by normovolemia and normal supine heart rate, peripheral resistance and blood flow. Upright, splanchnic vascular regulation is abnormal producing venous pooling, intense peripheral vasoconstriction and acrocyanosis. Patients are often hyperflexible and may fulfill criteria for the Ehlers-Danlos Syndrome. Well, i am not really hyperflexible and i don?t really have many other criterias about EDS. and when i asked my POTS doctor about EDS and if he thinks that i might have it, he also said that he doesnt think so. I don?t really now how to go from here, its like fighting windmills. I (like many of you) have to inform and teach my family doctor about ths illness and about necessary checks and blood draws and so on. So i have to make my own "searching plan" For the past 2 years i havent really searched about other causes because i was just so relieved when i got my diagnosis in 2007. Last November i had an appointment with the POTS specialists in Germany they did lots of test with me and they confirmed once again that i have POTS but that was it. But me reading so many Posts on here and finding out about underlining illnesses, i really want to search and find out as much as i can. Who know, maybe i find something that can be treated and then makes me feel better:-), carinara

thankful, thank you very much for your reply. I also cant take midodrine because my BP is to high to begin with. I react hyperadrenergic and i guess (looking at my catecholamine numbers) thats because my body reacts abnormal (hyperadr.) to a normal (catecholamine number) situation. I hope this makes sense. ramakentesh, thanks for letting me know, that your levels are similar to mine. I do feel relieved now, because i had no idea what to think of my blood work. carinara

Hello everybody, i just got my catecholamin test result back this week. The test was done last November. First they took my blood whilest i was laying down and then whilest i was standing. (I just stood on the floor, the blood wasnt taken out during an TTT). NORA ADR DOPM 270.5 31.2 24.5 laying down 576.6 51.3 19.9 standing My doctor told me that the numbers are a little higher then average but they are not extremly high. I have no idea what to think about this now. Do any of you have any experience in this? How were your numbers? Are these numbers a sign of the hyperadr. type of POTS? I would really appreciate your help. carinara

Hi ramakentesh, i just wanted to say thank you for your long and detailed answer regarding my question about caffeine and hyperadr. POTS. I live in Germany, and my POTS doctors don?t really search for what kind of POTS i suffer from. When i asked them about the different types (wich are often mentioned on dinet) they told me, that these categories of POTS are only results of individual little studies which are not accepted and verified. thanks again carinara

a big wishing well hug all the way from germany to you. carinara

whenever i get sad or angry about my health problems, i tell myself that i experience all of this for some reason. I believe that the universe doesnt make any mistakes. Even though this condition puts so many limitations in my life, i still learn a lot with it. Life is about collecting experiences and trying to be the best person one can be. I try to count the blessings in every situation and if you look and search long enough, you always find one. When i was out last, sitting on a bench watching all the people running and walking by. Watching my partner running around with my daughter and playing with her i wished i could join them and i felt all kinds of emotions, but then i looked around me, there was a little flower growing next to were i was sitting, i saw a bird searching for something to eat and i noticed that the temperature was just perfect for me, not to cold and not to hot, so i knew i could sit there for a little while without my Symptoms acting up due to heat or cold. I enjoyed it so very much, i felt so happy, content, thankfull and very proud of myself, because i knew that most of the other healthy people that walked by me, didnt notice any of these things. Many of them take their life for granted and often get mad and frustrated about little things. This POTS thing really showed me, whats really important in life and therefore POTS was and is a great teacher for me. I am so much more aware of things now and appreciate them more. And that makes me a lucky and thankfull person after all carinara

Thank you all so much for your help and supporting words. Loosing Tami relly got to me. I do miss her so much..., When i wrote this post last sunday it was already late (european time), i couldnt sleep and i had a hard day in front of me workwise. I kept waking up and my POTS acted up big time. When i finally had to get up at 5.45 in the morning to get ready for work, the first thing i did (after taking my medication) was checking Dinet to see if i got some replies to my post (because of the different time zones we are in, you all are awake, whilest i sleep). All your replies really helped and touched me. Thank you Julie for the lovely video, i wasnt ready to watch it until just a few minutes ago, just like you said, i had some kleenex ready.... Thank you Nan for sharing your video of your sweet bella with me. Thank you all for letting me feel not alone. Carinara

I talked to my boss about my health problems. Since i was off work for a few months in 2007(because i had a very bad episode), he was really concerned and told me, that he didnt want to lose me as his secretary. Many things have changed since then. Now he gets up and gets himself some coffee, instead of me bringing it to him. Whenever standing or walking is necessary i can ask some of our students to do it for me. It also helps me very much, that my sister works at the same company as i do. She is always there for me in case i have a bad day and can't get up without having symptoms. I avoid asking her for help because i am stubborn and want to do it on my own, but it's really a big help to know, that somebody is there to help if necessary. To get through my workday, i try to sit all the time. When i do have to get up, i make sure that i take all the necessary things with me, so i dont have to get up again for a while. I make sure that i do get up and walk around for a few seconds every hour to help my bloodcirculation. I eat at my desk and i have got fans positioned around me in case it gets to hot or somebody is smoking around me. I also made sure that my office light is not as bright anymore! They turned one big light off, so now it's darker in my office. I have my telephone, printer and copy machine all around me, i also have my drinks and snacks next to me. I have a fan and a water sprayer under my desk. When it gets to hot i just spray my compression stockings with water and let the fan cool my legs down at the same time. I have also a little fan right in front of me. These are some of my little tricks on how to get through a workday.

Iam so sad because our dog died today. It was totally unexpected. Tamis was her name and she was 15 years old. She wasnt feeling well since yesterday afternoon and i had a strange feeling that it might be something bad. This morning my partner took her to the vet and they gave her a few shots and told us to bring her back in the morning to take some blood. A few hours ago she couldnt walk anymore, lost blood and died in my arms. Oh god, i felt so sick, my HR shot up and i felt all the adrenalin coming out of every corner in my body. My partner called the vet and we were supposed to take Tami to him straight away, he thought that he might be able to safe her. When my partner asked me if i can drive there, i wasnt able to. My POTS Symptoms hit me so hard, i wasnt even able to get up. So he took our sweet little dog to the vet and i was left at home alone with my body going crazy. I wished i could have come with him, but how? As i was sitting at home hoping and praying that Tami will be ok whilest my body was going nuts, i felt so helpless. Here i am, loosing my dog, and i cant do anything, i cant carry her, i cant walk to the vet. Because of these massive symptoms. I feel so helpless. These symptoms increase so much in during stressfull situations, and this was a very emotional stressfull situation today. I started feeling so sick, sitting there in my chair, waiting for my partner to return home, hoping that everything went well. After a while i was at a point were my symptoms really scared me and i was scared that they would get out of controll (as i experienced before). But i also knew that i wouldnt ring my boyfriend to help me, because Tami was more important at the moment. I wanted so bad, to just be able to stand up and walk or drive there to be with them, but i couldnt. THen my 12 year old daughter came home and i had to tell her what happened. Whilest telling her, i had to watch my body and my symptoms because they were getting out of control. I wish i could just concentrate on the emotional side and take care of my family and my daughter. But my POTS Symptoms seem to want all the attention. Right now my boyfriend is on his way to the vet. He is picking up Tami and with the help of a friend, he will bury her in my parents garden. I wish i could come, but i cant. I have a bad headache and as soon as i stand up my symptoms hit me hard. And tomorrow is monday and i have a 10 hour work day in front of me (because of a meeting after regular work). Iam so sad and wonder how my body would react if something bad with (for example) a family member would happen. How would i manage my symptoms. then? I feel as if iam a strong person mentally, but my body seem to have its own mind and moreso in them sort of situations. Iam so glad that my boyfriend was with me when it happened. I could have never ever handled driving Tami to the vet and so on, on my own. i wish that i would just be my normal self without these silly symptoms in these sort of situations. I want to be there, help Tami, comfort my family but instead i have to deal with these extra strong symptoms. This frustrates me so much. How do you all handle situations like this. Thanks a lot for your advice carinara

Hi jump, i just wanted to let you know, that i have the hyperdr. type of POTS and not an autoimune illness. Carinara