carinara

Hi casey, welcome on Dinet! Iam so sorry to hear what you are going through at the moment. I know myself how hard it is to feel so sick and having a baby at home. My thoughts are with you! All the best carinara

Hello EarthMother, i experience exactly the same thing you do. It's been happening to me 4 times in the past 8 years. Everytime i get a big POTS flare up (like in 2004 and 2007) i loose wait big time. then after a few years or month i gain wait aigain (like now). This is really strange because i changed my eating happits a few years ago and stick to them no matter what. In fact i almost eat the same things every day! always the same amount of friuts, carbs and so on. It's very important for me to stick to this routine because i also get problems with my blood sugar at times and need to keep my blood sugar stable. I also eat tiny little meals (only a few bites a time) in during the day. So i dont understand either why i loose so much weight and then gain weight again even though i never changed my eating happits. All the best carinara

Hi Ernie, all my compression stockings are from Mediven as well! I also find them very comfortable. I onced tried a different pair but returned them straight away because they werent as comforable as the ones from Mediven. All the best for you carinara

hello ana, i can totally relate. Sometimes little noises make me feel real dizzy and disorientated. Sometimes when a little tiny noise gets into my ears it makes me feel like being on a rollercoaster. When i can locate where the noise comes from (after a little while) then it gets better and finally goes away. take care carinara

I used to have real low blood sugar a few years ago. I changed all my eating happits back then and ever since then i'am quiet ok blood sugar wise. I have always sticked to my diet since then. I also have something to eat next to my bed just in case. The only time i need to eat something in during the night is in fact whilest having the flue then i feel this need (like last night) to get a little food in me to stabalize my blood sugar. But normally the low Blood sugar is not a problem for me anymore. I can keep it stable now. carinara

Lately i feel much worse in during the night. A few weeks ago i got the flue and the first night was a nightmare.I felt fiberish and awful. This strange flue virus stayed with me only 2 days and returned last weekend. Last saturday evening my coughing, fever and so on returned and i felt so awful again. My partner got it within the same hour and he felt really sick as well (he doesnt have POTS though). In the early morning hours i got worse and all of a sudden my tachy stopped and my heart was getting really slow, (this always and only happens when i have a flue). I started to feel weaker and weaker, my ears rang much louder then usual and i started to see stars big time! At that point i always panic, i feel that i have to get my HR up somehow but the funny thing is, that all that doesnt work in them sort of situation. My heart stays ultra slow! My partner wanted to help and get a cold towel (becaue i was hot and sweating then). He got up and you know what? He fainted. He hit his head on the bed and layed on the floor and there was nothing i could do about it. My daughter (she is 12 years old) stayed over at a friends house. I couldnt move and like i said if i get up in during the night without a long preparation beforehand i would lay on the floor like my partner did. It took a while before he could get up again and he said that something like that has never happened to him before. I feel totally helpless in during the nights! Knowing that i just cant get up. It seems like i depend on my partner in during the night, whenever i get too sick, he goes and brings me whatever is needed. If there are any issues with my daughter, our dog, the phone and so on, he is the one who jumps out of bed to solve them. I cant and that scares me. Its not like that in during the day, when my body is awake it responds differently. The other subject is the fluid intake. Like all of you, i drink a lot in during the day but i have to stop in the early evening otherwise i cant make it through the night without having to go to the toilet! And thats really something that i dont have a solution for. Last night this silly flue returned again (always on the weekends). And i had an awful night with the urge of drinking something but i cant, because if i do i have to get up to use the toilett and if i do that i feel even sicker. Even before that virus it wasn't possible to get up in during the night to go to the toilett because i would need about an hour to get my body in balance again! Its different in during the day! Like many here, i feel worse in the mornings. I get up 2 hours before i have to leave for work so i can slowly get ready! Before i actually get up i sit in bed, take my medicine put my compression stockings on and drink a lot! Than my body allows me to get up and reach for my office chair with rolls on wich I use almost all the time! I dont like this helpless feeling in during the night! I dont even want to think about how it would be when my partner needs to go away and iam alone with my daughter in during the night. In the day its a totally different story! When my partner returns home really late, i often try to stay awake because once i fall asleep my body changes in some other programm that is also the reason why i dont like taking naps in during the day. My body seems to take ages before getting somehow in balance again. Is anybody else experiencing this? How do you handle not being able to get up in during the night and the responsibilities that might occur in these hours? I dont want to depend on anybody but i have no idea how to handle night times on my own? and i dont like that! I hate to think that my daughter would have to help me in during the night and see how ill i can get whilest my partner is on a business trip! Like i said, the situation in during the day, when my body is more in balance its a total different story then. Thanks a lot carinara

alicia, i just had a look but couldnt find a brand name on the pedals! I ordered it out of a cataloque over a year ago! they weren't expensive! It was important to me that it is possible to adjust the strength of the pedals so you can change it from light to heavy. All the other functions like calorie counter and the distance counter (which my pedals have as well), are not that important to me! I personally dont think that there is a big difference between real expensive and cheap ones. carinara

Iam so sorry about your work situation! I know how hard and difficult it is at times to make it through the day even without all these politics going on with the people at work. I take great strength out of meditation! And i really believe strongly that everything happens for a reason and that there is something to learn about in every situation! As long as i try to be the best person i can be and put my heart into things i know that everything will fall into place finally, Thats how the universe works and it has never let me down. Maybe the little ritual i do at times will help you as well: Just try to relax, close your eyes, and put this difficult situation into gods hands! And then have trust that something will happen. I also ask myself in every crisis: whats the blessing is in this crisis. All the best for you carinara

I take propanolol, but only 15 mg spread over 4 times a day Mornings and nights: 5 mg lunch and evening: 2,5 mg Iam very sensitive to any kind of medicine. Many years ago when they started me on a normal dosis BB, it was a nightmare for me, i experienced a lot of side effects as well. I can only tolerate a tiny tiny dosis. My POTS Doctor told me that this is very common in people with POTS. He also told me never to take the normal dosis of any drug because of the way my body reacts to it. Normal doctors laugh at this tiny dosis of the propanolol i take, because they dont believe it would work. But it sure does for me. All the best carinara

My POTS Dr. recommended me the following product because he made some good experiences with it on other patients: http://www.bort.de/deutsch/main/index.html (there must also be an english version of this site). I had to order mine at a special shop, where they meassured me in order to get the right size. This afternoon iam going to pick it up. I'am really looking forward to it because the compression stockings do already a lot for me. But there is still too much blood flowing in my lower body and i hope that this belt will help m with it. all the best carinara

I bought one about 1 year ago! I really like it because its so small you can just put it anywhere. You can use it sitting on the couch or on any chair! Because i can only tolerate some excercise as long as i sit in a low chair whilest leaning back, them little pedals are perfect for me. All the best carinara

Have a look at one of my posts! http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara hope it helps! Take care carinara

I trust in God and believe that everything happens for a reason. I have great faith that this illnes wants to teach me certain things i would never experience if i would be healthy. In every crisis i ask myself the question: what is the blessing in this situation! All the best for all of you carinara

ramakentesh, i just googled about: Hypertrophic Cardiomyopathy because I never heard of it! All my heart tests and scans came back ok. I even spent a week in a cardiac hospital (before i was diagnosed). My heart seems to be in perfect health. I just got a little mitral v. prolaps. But they told me that was nothing to worry about. I didnt mention this on my signature because i didnt get around to write one yet. You probably looked at somebody elses signature :-). Thanks a lot for your support, this site is so great. I just got up (its 6.30 in the morning right now) and looked at my Post i wrote last night. Ist such a great feeling to see that people care and understand. thanks a lot! I have to go now! Love carinara

Hello everybody, i just wanted to let you know, that tomorrow is my appointment with the so called 'POTS' Expert in Germany! I got all my paperwork together, I also printed out the causes of POTS listed on the Dinet site plus an article written by Dr. Grubb. I have so many questions to ask this doctor and really hope, that he has got some time to talk things over with me. I felt really sick tonight because i overdid it. I still had the packing to do, find a hotel, take a shower and a few other things. I normally know when i have to take a break and need to rest, but today i just didnt have any time because of the important appointment tomorrow. Tomorrow morning (in about 8 hours) we will go on a 7 hour car trip to Hannover. Please keep your fingers crossed for me, that something good comes out of this appointment with somebody who hopefully (for the first time) knows more about POTS then i do. (all the other doctors have never heard of it before). carinara

Hi Corina, i?m glad that you still have the chance of being in rehab and that you are willing to take the opportunatey to get all the benefits out of being there.(Thats a big goal within itself :-)) I am not familiar with how "rehab" works in the Netherlands. Are you staying at home and travel to the rehab hospital or do you have to stay in the clinic all the time? When i was in rehab the first time in 2004 i had to go away from home for 4 weeks, there was no possibility to go home in between because the clinic was 300km away. Last year when i had to go to rehab again i had to spend 8 weeks away from home but this time i made sure, that the rehab clinic was closer to my home and therefore i was allowed to spend the weekend at home and with my daughter wich i missed very very much. When i was in rehab, i didnt set myself big goals, because that way i didnt put extra pressure and stress on me!One of my problems has always been that i pressure myself to reach certain goals and that is sometimes not very healthy, i often made myself sicker trying to reach them. I chose little goals that i was happy about, like: putting my compression stockings on without any help, making it 10 minutes trough eating lunch with the other patients (just eating a few spoons full of soup before i had to lay down again), making it somehow trough the appointments you have, whilest being in rehab. I felt really proud of all the little things i achieved. I took (and take) every day as it comes and have a big trust that all happens for a reason. Whilest in "rehab" one day i could do much more than on other days so setting goals in things were my health was involved (like walking for set up distance and so on) didnt make much sense to me anyway. Because You know yourself how POTS can effect people. What our bodies allow us to do can change from day to day or hour to hour. What i found very very important whilest being on rehab was the fact, that i could push myself to my limits and beyond at times, knowing that the nurses were always around to watch me. That way much of my insecurity about how to react in them sort of situations, disapeared. I took the rehab as an opportunatey to get to know my limits better and to find out much more medical knowledge about my situation (what i can and can?t do)l A wonderfull experience in rehab was to see, that whilest i felt really awful at times, the nurses and doctors were around, telling me that nothing bad is going to happen, that iam not going to die and that gave me a lot of confidence back. Tere are also other points and benefits this "rehab" can give you: - it gives you to opportunatey to leave the house and see other things - you can tell you family about your experiences in during the day - you are doing what you can to get better - you meet new people, maybe new friends???? - Iam sure you experience a lot of nice situation with friendly people there You are doing all you can and thats the main thing, I wish you all the best and i am sure you will find your own personal answer to your questions. A big hug from carinara

I stick to many rules in order to get through the day ok. I take my Beta Blocker half an hour before i get up in the mornings and eat half of a banana whilest still in bed. when i finally get up i sit in my chair (with rolls on) and roll myself to the couch were i lay down 20 more minutes before i wake up my daughter and get ready for work. 90 % of the time i use this chair so i dont have to stand. Its amazing how much relief this has given to me. I do almost everything sitting down. I eat tiny little meals and never too much carbohydrates at ones because they make me ill. I drink a lot in during the day but stop drinking in the evenings, because i cant get up in during the night to go to the toilet because this makes me sick. I were my compression stockings all the time in during the day- I cant handle the heat so i try to stay cool and avoid being in the sun. When we go somewhere i make sure that i get out of the car just in front of wherever we are going, so i dont have to walk long distances. I have a small fan with me that cools me down whenever i get overheated. I never take baths anymore i sit in the shower and have a shower. I try to get enough sleep. I sleep with my head elevated up When i feel ok in the evenings i try to go for a little walk and sometimes go on my "home"bike.

i have to choose between My job or a social life. i really dont have the energy for both. That means that 90 % of my social life is over the phone. But even this ist sometimes too much for me because speaking makes me really dizzy at times. So i always try to listen more to what my friends have to say. Since i also have my daughter to look after spending time on the phone is not always possible, and when my friends ring me, it often happens that iam already in bed to get enough sleep and rest to go through the next working day. But i did find out who my real friends are ! iam still upset and sad because one of my so called best friend just dumped me because i dont function right anymore. She ist working in the medical field and treated me before i got diagnosed with POTS in the end i think she just didnt take me serious anymore. This really upset me big time.

Hello everybody, i have a question and would really appreciate your answers. I rarely get the flu, but somehow i got it yesterday. I got feverish, was freezing and my whole body hurted. Before my last bad POTS Episode one and a half year ago (when i was bedridden and my body was way out of any kind of balance for a long time) I tried to figure out what caused this bad flare up and i noticed that i was sick with the flu a few weeks before it. Then i noticed that the same thing happened 4 years earlier as well. Maybe there isnt a connection with me getting a flu and my Body getting way out of balance again, but you all know how we try to figure out why, when and how questions. Anyway everytime i have a flu (last time about 20 month ago). My HR stays higher then normal during the day (i know thats normal whilest having the flu). And then when the nighttime comes this happenes to me: I go to bed, freezing and tired, i take my POTS medicine (wich i take since years and i tolerate them well). I fall asleep and wake up a few hours later sweating, disorientated, with loud ear ringing, and bad visual disturbances and with a VERY LOW HEARTRATE.( This low HR is so very unusual for me, because normally my HR is high) I am on the edge of passing out whilest laying in my bed! This only happens to me whenever i have the flu. Does anybody have an explanation for this? Why does my HR slow down so much in during my sleep whilest having the flu? I normally deal with tachy and not with a low HR. I try to get my HR up in these situations by moving my arms around but thats not working well, and thats very unusal for me. Like i said, i normally deal with tachy and this slow HR and the symptoms with it scare me. After about 20 minutes my HR gets higher again and stays high all night again ! Any ideas? Thanks a lot. carinara

I too have hypoglycemia problems. Before i got diagnosed with POTS i went through so many years of searching what is going on with me. Hypoglycemia was a major problem i had back then. When i get bad POTS Episodes now i do get the hypoglycemia problems again, then they are very hard to controll. I changed my food 4 years ago. I changed my whole eating habbits and it does help me a lot. If i stick to my food plan i can manage ok at the moment.

Hi, welcome to the board :-). when i went to the dentist a few month ago, he wanted to take a wisdom tooth out straight away. I was concerned becaue of the same reasons you are. So i asked im about the different shots he can offer me to numb my mouth. He explained to me that there is one with adrenalin in it and one without. The dentist said that the one without adrenalin won't last as long as the other one but still long enough. Because i know, that iam very sensitive to adrenalin i chose the other one. I was a little nervous about it because i didnt know how my body would react to it. But i was very suprised that i had no problems at all. When he told me that he still has to do some work on my root canal a few weeks later i new i would take the same shot again. But on that day i didnt feel very well in the first place, i still went to the dentist and convinced myself that i should just try and get it over with. I got the same shot again and i handled it very well, like the time before. It was just me who decided that i didnt want the root canal done due to other POTS Symtoms i had all day. So i went home without the root canal being done. Just with a numb mouth :-). I know i have to go back there soon and i know for sure wich shot i will have. Wish you all the best. 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 like: 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

I can really relate. I went through the same nightmare! for years. But i must say, that when i stopped the birth controll pill a few years ago. I felt better. I have never took the pill again since that time. Going through the phase were you get to know your symptoms and try to adjust and try to figure out what works and what doesnt is a very hard and long lasting thing. There are so many things that can make symptoms worse or make new symptoms show up. I wish you all the best. Hang in there, carinara

I contacted this doctor by email 2 days ago, just to ask what kind of tests he is thinking about doing. I couldnt believe it, but he emailed back within 1 hour, asking me more questions and letting me know that he would like to do a Mikroneurographie. So i went searching on the internet. I didnt find many Posts about it on Dinet?!? and also not too many on the internet! I did find one article about were they give you some medication that highens and then lowers the BP doing the test just to see how your ANS reacts. I looked up what kind of medications these are and just knew straight away that i would never ever take them. I experienced extreme side effects with similar but lower dosed medication in the past and i am not prepared to risk a full crash down! My TTT last year was dramatic enough without any medication.So i contacted this doctor again and there again, he wrote back straight away telling me that he received the reports of the hospital i got diagnosed last year (incl. TTT report) and that they confirm his assumption! In order for him to get a more complete picture he wants to do a Mikroneurographie without any extra medication. He wrote that he will get in contact with me as soon as i can have an appointment. Yesterday i got an email again saying, that he is planning on seeing me in the next 3 to 4 weeks! I'am very surprised on how interested this doctor is. I really really wish that i have now finally found somebody i can work with. He wrote me we should stay in contact and that i can contact him at any point. He asked me more questions by email then all the other doctors in the past 10 years! But why is it that only a few people on dinet seem to have had a Mikroneurographie? Has anybody of you had one before? How did it go? Did it make any difference afterwards like getting new meds? I would really appreciate some input. Thanks a lot carinara

Hello everybody. Due to a very intensive research, I finally got in touch with (what they have told me) the main german POTS expert. I got an email today from his colleque doctor who also knows much about POTS. They want to invite me to their clinic for some tests. He wrote me, that they plan to do some routine tests to see how the sympathic nerv activity is. They also want to messure the catecholamines whilest laying down and in the upright position. Then he mentioned something about simple tests which will risen and lower the BP to see how my reflexes work. All together iam quiet happy about this situation. I got diagnosed last year in a autonomic section of a famous hospital. But the stuff there, only diagnoses patients they don?t treat them. That was the reason, that I didn?t have any doctor I can go and see about POTS and ANS Problems on a normal bases. Now one year later I have finally found one. The only problem is that the hospital is about a 6 hours drive away. Well here come my question. 1.) can somebody explain to me how the above mentioned tests work? My TTT last year was such a horror experience, I never ever want to have one again. I do hope that they don?t perform one on me. 2.) My body got a little bit in balance again since my diagnosis last year. I still have daily symptoms and cant stand for more then a few minutes, I have to be very carefull in order to not get symptomatic, but the tachy and over all symptoms are not as severe as last year when I was bedridden for quiet some while. I now wonder, what if they do some tests with me, and then tell me in the end, that My numbers are ok? And that I don?t have POTS ? I know its probably a silly question. But I was so reliefed and glad when I finally got my diagnosis last year after so many years of suffering. I don?t want to loose it again. (sounds like me and POTS got friends :-)I mean, I wish I could get rid of POTS, that?s not a question. But after so many misdiagnosisis in the past 10 years I don?t want to experience something like that again. I truly know I have POTS and my Diagnosis from last year says the same. But you all know, that for some strange reason, we do have moments in the day, were we feel better for a little while, what if they catch one of these moments and tell me afterwards that iam perfectly healthy? Did anything like this happen to any of you before???? Iam sorry to ask such a silly question, but at the moment iam happy and scared at the same time. Thanks a lot carinara