carinara

Thank you so much for your helpful suggestions EarthMother. I will definately try to get some nuts today so i can try them out in the office tomorrow. Is there anything about the amount of nuts to eat, that i should watch for? For example: a hand full every other hour or a handfull spread over the entire morning? I know that nuts are very high in calories and i remember that once you start eating them its difficult to stop (especially the brazil ones for me). Thanks again sending you a big thank you hug, carinara

Hi EarthMother, the number i got was from my overall cholesterol. Iam planning to get a more detailed test done between christmas and new year. I have another question. What is there that i can eat when i have the urge to eat something sweet, because of low blood sugar whilest at work? I need something that works quick but doesnt do me any harm. I need quick help when these surges come. I try to drink some fruit juice but the effect doesnt hold on long enough. My boyfriend tried to buy some almond butter yesterday but didnt find any. Is there anything else thats sweet and doesnt harm me, you can recommend? Thanks a lot carinara

Hello again, Thanks for all your very helpfull suggestions. Potsgirl, I will try to eat more protein now. In fact, i will fix my food for work like Earthmother and Macks Mom described. My cholesterol levels were a little high the last time i got tested (i have no idea why), so therefore i shouldnt eat too much fat. I will try to find a good balance though. I also found Eriks post very interesting, because now that i thought about it i realize that this happens to me from time to time in other areas as well. I can also relate to what ramakentesh said, that POTS patients seem to be more sensitive to the normal adrenaline regulation of blood sugar. I thank you all so much for your time and effort. Starting tomorrow i will adjust my foods so please wish me luck. carinara

Thank you all very much for you suggestions. About 5 years ago i meassured my blood sugar regularly and developed a good feeling for it. Because of my low blood sugar at times, i totally changed my eating habbits back then. Up until 3 months ago i felt pretty much in control over this problem but now it changed somehow... My problem is that as soon as i eat carbs like rice, potatoes, pasta, i get tachy about 20 minutes after eating it. My doctor told me that carbs dilates the blood vessels and i can definately feel it everytime i eat them. I stopped eating them about 4 months ago because i really got tachy and lightheaded afterwards. In fact, everything that dilates blood vessels make me feel this way, so i try to avoid it. The other thing i have to watch are foods with histamine in it. Back then (about 3 months ago) i ate too much shrimps one sunday afternoon and got really really sick, i couldnt get up for the rest of the day and ever since then i started to feel worse. We figured that i might suffer from histamin intolerance. Thats why i take an H1 blocker since then. I don?t really know what i should eat at the moment. I have to watch the carbs because they make me feel sick and i have to watch the histamin as well. What else is there i can eat??? For breakfast around 7 o?clock i eat a sugar free granola with milk and a tiny bit of banana in it. Then when i sit on my desk at work (around 8.30) i start feeling the urge to eat something sweet and something salty every 20-30 minutes. And then it all starts all over again..... Thanks a lot for your help carinara

Hello everybody, i havent felt good in the the past few months thats why i havent been writing a lot. Iam planning to write and let you all know what i am up to, in a little while when i feel a little better. I just wonder if anybody can help me with this one: Like i mentioned, iam in a so called POTS hole, and my body just does its own thing at the moment. It seems like every other week a new bad symptom shows up again... I still try to go to work everyday but dont ask me how that goes... its a big challenge and i try to wait the episodes out in some quiet room or the restroom , and when i get home i cant do much....the thing that has been constantly there for the past 3 months is that every single day around lunch time ( between 12 and 1) my body goes mad and i dont really know why. Since about 3 months i cant tolerate food very well again. It doesnt really matter what i eat, i get an reaction.So we tried an H1 Blocker. Since i startet the H1 Blocker about 9 weeks ago, i do feel a bit better. My bloodsugar is very unstable as well at the moment. It seems, as if i dont benefit from my eating routine (i stuck to for more then 5 years) anymore. Its a constant change between having the urge of eating something sweet to the urge of eating something salty. Whilest at work i keep eating tiny bites to keep my bloodsugar stable and i cant go more then 30 minutes without a bite of food. I keep loosing weight because i can only tolerate tiny amounts of food. But then a weired thing happens every single day at work. As soon as it comes to lunch time my body goes mad. I work from 8 to 1 and around 12 o?clock when everybody else is on their lunch break, i start feeling sick, i feel an adrenalin rush, i get shaky, jittery an so on. Then it feels as if my stomach is closing up and i cant eat anything anymore even though it feels as if my body screams for food. I get very lightheaded, my BP must be rocket high, i get shaky and cant think anymore, I try to stay calm and wait for it to pass hoping that my body gets somehow in balance again. As soon as i get home i eat a chicken soup and a tiny peace of chocholate and thats when i start to feel better again. Today for example, i had to work a full day. I didnt feel good this morning but improved up until 11.30. Then all of a sudden on 11.45 i started to feel sick, shacky, nervous, lightsensitiv .... again. I ate my chicken soup and a tiny peace of chocolate and i started to feel better within 30 minutes. It took me another 1 hour before i felt stable again. What is this??? I tried to eat the chicken soup earlier before in order to stop this episodes to come up, but it didnt work, i still got it. It feels as if a build in inner alarm clock goes on every day around the same time, and it feels totally different then the normal POTS episodes because i feel it must have something to do with food? It only happenes around that time never in the morning or afternoon. Like i mentioned before, all day long iam trying to keep my blood sugar stable but something strange happens with me every day around lunch time????, i dont get it, it feels as if my body produces some kind of hormones or something else ALWAYS around that time???? Any ideas and sorry for this weired post, i hope you can understand what i mean. carinara

Hello everybody. My Pots has been acting up for a while now. I was so much looking forward to the colder months because this summer was very difficult for me healthwise. I thought that i would feel better in fall like i usually do. But this year everything is different. My body is acting up big time. Its such a struggle at the moment to go through a workday. I find myself sitting and hiding in the restroom at work in order to bring my body in some kind of balance again. This time i really want to get through this POTS hole without missing work for weeks and months. One thing that i thought i ask your advice for is, that i dont know what to eat anymore. I have to avoid carbohydrates because they make me tachy. I have to avoid food with histamin in it, because it looks like i have an histamin intolerance. I have been eating tiny amounts of chicken, a little peace of try bread some cucomber and olives each day for over 6 weeks now. Since 5 days it looks like i have gastritis as well, i almost cant eat without reacting to it in some sort of way. When i say eat, i mean not more then 4 bites at ones, because bigger amounts make me sick as well. Whilest i am at work, i must be so carefull with my food because i never know how it effects me, therefore i just take 1 bite every hour and eat a few bites more and a chicken soup as soon as i get home, because then i can lay down if my body acts up. Another problem is that i have to watch my bloodsugar closely because it drops fast. I already lost weight and i dont want to loose anymore. I was constantly gaining weight over the past 2 years after my last big POTS hole in 2007. Now for some reason my body is loosing it again. What do you guys eat in times when your body acts up? I miss eating fruits but they seem to hurt my stomach at the moment and bananas got histamine in it. Please let me know your ideas about how i can keep eating healthy food in my current situation. Thanks a lot carinara

I had 2 CT's with contrast in 2002 and 2004 without any major problems. But im not sure if i was histamine intolerance back then. I think that taking a extra dose of my antihistamine (which i normally take in the evening) shortly before the CT might be enough. I really hope that this is possible because i dont really want to try out a new medication. Especially after my bad reaction to cetirizin (engl. zyrtec).

Hi alicia, i do have urinary frequency. But some days its worse then other days. I havent found a pattern yet behind why its better somedays and worse on other days.

Iam supposed to have a gallbladder and kidney computer tomography with contrast next week. Because of a suspected histamin intolerance i have been taking an H1 blocker for the past 2 months. Iam very very sensitive to any sort of medication and i wonder now what the contrast will do to me since contrast sets free histamin? Does anybody of you guys with histamine intolerance know how to handle this situation? Thanks a lot carinara

Hello again, i just wanted to let you know how i am doing. I went to see my doctor twice this week and there was still blood in my urine and the pain is still there. She send me to another urulogist yesterday, he checked the urin again and this time the blood was gone. Then he scanned my kidneys and bladder all over again and didnt find anything wrong with it. He also told me that the pain i feel (lower abdomen and lower back) are very untypically for bladder or kidney problems ( the pain isnt there all the time and shifts from one side to another, the whole area feels very sensitive but the pain is bareable). Iam reliefed now, after 4 scannes didnt show anything bad. But the normal procedure is to have a computer tomography with contrast now. He said that many women have blood in their urine from time to time and that in most cases no cause will be found. Well since 2 days my stomach acts up big time as well, i cant eat even one bite without it hurting, feeling how acid comes up and the reflex to vomit. There are many viruses going around here at the moment and this sounds like one i guess. I dont know...., so iam going to have a computertomographie next week and a cystoscopy in 2 weeks. Thanks a lot carinara

Iam in a similar situation at the moment, (many stressors and bad health), what helps me is trying not to see the stressors and upcoming appointments and tragedies all together as one big montain in front of me. Instead i concentrate to live in the now, i take one hour at a time trying to do the things that are in front of me in this moment without thinking and panicking about how i will handle all the stressfull upcoming events i have in front of me in the next few weeks. What also helps me is "the work" of Byron Katie. Have you heard of it? There are already many of her videos on youtube. Maybe you want to have a look or read one of her books. Another thing that helps me is that i trust in god and life and know that there is a blessing in every situation. These hard situations in life are also a challenge were we can learn something out of. Thats what i think. All the best, carinara

Hello everybody. I felt much worse the past 6 weeks. All my POTS Symptoms increased a lot. I cant tolerate foods very well at the moment, i lost my appetit and iam loosing weight. I started an H1 Blocker about 5 weeks ago. Last friday i got my urine checked because i had some pain in my kidney and abdomen area. They found blood in it and we discussed the possibility of taking an antibiotic. Because i felt worse on Saturday and sunday (pain, no appetit, exhausted, not able to stand, nauseas) i rang my doctor and she send me to the hospital yesterday. I got checked through by an urologist, gynecologist and an internel specialist. Each of them made an ultrasound and an examination with no result. They again found much blood in my urine but no bacterias, my bloodwork showed no signs of an infection. I now have to get my urine checked regulary in the next few weeks to see if the blood dissapears. I feel bad, my abdomen and lower back are very sensitive at times and hurt. Last week (before all these started), i noticed that i smelled strange, i havent sweated in a long time, but last week i almost couldnt smell myself anymore, it was really strange and didnt really dissapear after showering. My POTS Symptoms were much worse the past 2 months. Do any of have any ideas of whats going on? What does blood in urine without bacterias and without an infection mean? Could it be POTS related? Thanks a lot carinara

Hi Lisette, a very warm welcome to this forum. I live in Germany. I know that there is another member on this forum from the netherlands. carinara

I went to see my doctor yesterday. I told her about the side effects i experienced in the past 2 days. Thats when she told me to stop taking zyrtec. Today when i got up i felt quiet ok. At work around 12 o'clock i started to feel not well. My HR was high, my hands were sweating and i was cold one minute and the next i was hot, my face got hot again and i was shaking. When my mother picked me up from work i asked her to stay with me for a little while. My BP was 200/125. I couldnt see right and i was shaking. I tried to call my doctor and after i explained to her what happened she now told me to take an Antihistamin with Fexofenadine. (over here its called telfast, i believe in the US its called allegra). I am going to take it around 6 o'clock and pray to god that it works and that i dont get them sort of side effects. I cant tolerate it if i cant think straight and if i feel depressed due to medication. I need my positivness. Please wish me luck. By the way iam planning to take 60mg. carinara

Hello, its me again with a little update. I only took 2,5mg of cyrtec this morning (because of my bad reaction to 10mg yesterday morning). I noticed that i felt quiet reasonable prior to taking it. After 30 minutes of taking the 2,5mg i started to feel spaced out again, ear noises, very tired and some weired symptoms as if i couldnt think straight just as i would be half asleep dreaming or daydreaming or something. Now about 3 hours later i still dont feel right because it feels a little bit as i would be on drugs or something and this is something that really scares me. Even though i can feel an improvement whilest being upright the other side effects scare me and i cant concentrate, another weired thing i noticed is the inner surge to cry without any reason. Thats very weired. Iam totally insecure now about the futher plan. It seems like i dont tolerate the cyrtec in the morning but in the evening it seems ok, so i guess i take 5mg tonight and nothing tomorrow morning. Has anybody else ever experienced something like this?

Hi Jana, thanks for your reply. taking 2,5mg in the morning is a great idea. In the past 1,5 weeks i have been taking 5mg in the evening without major problems. 3 days ago i added another 5mg around 10 in the morning (whilest at work). Every time after the new morning dose, i felt a little jittery and nervous after 30 minutes of taking it. After another hour i felt better again so i didnt think much about it because i didnt blame the zyrtec for this reaction at first. But since today iam more aware that for some reason i dont do so well with the morning dose. Lowering the morning 5mg dose into an 2,5 dose sounds a great idea. I will try it out tomorrow at work. I will still take the 5 mg at night. Please wish me luck and thanks again for your help. carinara

Hello everybody, here is another little update on me. I tried 10 mg of zytrec this morning around 10 o'clock (i have only been taking 5mg the past 1,5 weeks). I was feeling ok prior to taking it and looking forward visiting my parents. About 35 minutes later i started to feel really strange, as if my body is totally allert. I got so hektik, very nervous and it felt as if wild dogs are inside of me trying to get out. I even screamed at my daughter which i normally never ever do. My head felt under pressure and as if i was on some drugs or something. I got scared because i dont like these kind of feelings. Then this feeling of inner shaking startet and i felt sick from my stomach. I try to stay calm now and not panik because of the strange things my body does at the moment but i guess 10mg at ones is too much for me. If this would happen like this at work, i couldnt handle it. Hope tomorrow is a better day. Has anybody else every experienced something like that?

reading through this forum it seems as if many people with POTS here benefit from taking an antihistamine (like zyrtec for example). I am very interested in finding out if all of you who benefit from an H1 or H2 Blocker have an "official" Diagnosis besides POTS , for example: MCAD, Allergies, Histamine Intolerance or anything else that would make your doctor prescribe you an Antihistamine. Iam asking because i do benefit from taking zyrtec but i dont know exactly why? Do i need to find out why? My doctor doesnt seem to worry and has no idea were else to send me to find out why i respond to the zyrtec. We both think its probably due to an Histamine Intolerance that showed itself 2 weeks ago when i ate "bad" prawns, but who knows? Do you all know why you benefit from Antihistamines? Thanks a lot (and sorry that i have so many questions lately, iam still learning :-)). carinara

Thank you all so much for your help. Since it is sunday tomorrow and i dont have to work, i will try out how it affects me if i take the 10mg cyrtec in the morning.

Before my Diagnosis i travelled 4 hours every 2 months to see a very good craniosacral therapist. I could see an improvement short term. I wish the therapist wouldnt live so far away, i havent seen her since my Diagnosis in 2007. I really enjoyed the times i had craniosacral therapy. Whilest she "worked" on my body she always made me go on a "mind journey", that way we worked with the "inner child". I really miss going there.

Hi Julie, thanks for your reply. Please let me know why you recommend to take 10 mg in the morning instead of 5mg in the morning and 5 mg in the evening (as i do at the moment). Would it make any difference? Iam just asking because at times i do feel that zyrtec is making me a little tired and i figured that if i take 10mg in the morning i might be getting too tired at work and that would be a problem. Sorry for even more questions. carinara

Thanks for your replies and thoughts. Iam always very concerned when i have to start a new medication. Thats because i had so many bad experiences in the past and i dont want any kind of wrong medication leaving me bedridden again. Since i am a single mother and also have a job i am really concerned about not being able to go to work again for weeks or months because of serious reactions to medication that cause big flare ups POTS wise. Well all your replies helped me to have a good feeling towards cyrtec. The past 3 days i took 5mg around 10 o'clock in the morning and another 5mg around 7 o'clock in the evening. I do really believe that it is helping me, i honestly feel that i would be worse of if i wouldnt take it. My question now is. Do you guys know for how long i should take it now? My doctor said that i should try it out for 2 weeks and then (if it helps), she wants me to try out and H2 Blocker as well. So what is the plan behind it? What does the H2 Blocker do and isnt it better to stop the zyrtec and just see if i feel worse again? Maybe it was just a phase? and i dont need any antihistamin anymore after a few weeks? Like i mentioned before, i know that with my big flare ups in the past (roughly about every 3 years) i knew something was on top of my usual POTS. Maybe thats when i should use and Antihistamin in the future, but whats with the time in between? How long do you guys take it before you try out how you feel without it again?

Since my POTS is worse again since 2 weeks, i have the exact l problems with going to the toilet again. The last time i experienced this weired thing was in during my big flare up in 2007. It seemed totally gone until the past almost 2 weeks now. Like Earthmother its very unconfortable for me to leave my legs tangling down, i also got a little stool so i can put my feet up. If i have to hold my urine for a few minutes because i cant go to the toilet something shifts in my body and i get an episode, the same with BM. Very weired because like i said the past 2 years these symptoms totally dissapeared.

Hello everybody, i just want to give you a little update on whats going on with me. I do feel that the 5mg cyrtec help me. I honestly think that i would feel even worse if i didnt take it. I only had one big surge right after i ate dried cranberries 3 days ago. After i took another 5mg cyrtek i felt better soon. Overall my POTS Symptoms are worse since i ate the shrimps 1,5 weeks ago. My BP is higher and i cant hardly stand up at times. Iam totally exhausted and tired and have many headaches, i also notice that on the days (like yesterday) when i feel more sick, i have to pee a lot more but i still believe that i would feel even worse without the antihistamin. Well i went to see my doctor yesterday. My BP in her office was 180/110. We talked and after i told her that i feel the cyrtec is helping me a bit, she told me to take 10mg. What she didnt know was when i should take it, she said that she doesnt know how long it will stay in my blood. She recommended to take 2 times 5mg daily. 5mg in the morning and 5mg in the evening for at least 2 weeks. If it makes me feel better she was thinking about adding and H2 Blocker and something else (i dont remember the name right now). What iam insecure about now is, When should i take the zyrtec? I read somewhere that its recommended to take it in the evenings because it would work in during the night so you have the effect of the antihistamin the next day, is this true? If it is , should i then take 10mg in the evenings instead of 2mg in the morning and 5mg in the evening? Iam also insecure about what time in the morning i should take it? I always take the evening dose around 7 o'clock. I had to take 5mg around 10 in the morning today because of a little flare. I take my BB at 5.45 in the morning and work starts at 8 o'clock. Any ideas on how i should take zyrtec? Once a day (10mg) or twice a day (2x5mg)? And at what times? Thank you all 1000 times. Carinara

Hi Julie, yes you mentioned Dr. Molderings to me before. I contacted him via Email and he was very friendly, but he told me that he is not seing any patients. He mailed me a few informations which i already took to my doctor about 3 months ago. BAck then i didnt have any symptoms yet but i just wanted to look into every opportunatey to find out as much as i can about what makes me feel worse every other year. My doctor has got no time to read it all through and its all so very complicated. She took my tryptase but they came back ok. I dont know what to do now. Maybe i try to talk to my doctor again. But i know whe wont have time to get deep into it. Well since i have experienced these bad "surges" so many times in the past 10 years and nothing happened. I figure iam quiet safe now with the zyrtek. I take only a tiny dosis of Betablocker anyway. I dont want to get worried and panicky about anaphylaxis. I really hope that iam better prepared and safe then i have ever been with zyrtek now. Thank you Julie, you and all the other ones are really a great help for me. a big hug from carinara