carinara

I have been taking my Betablockers for 5 years now. My BP is always on the higher side and nothing not even dieretics (which i got prescribed prior to my POTS Diagnosis and wich dilate bloodvessels) caused my BP to come down. So the dropping in BP is nothing i can look for to find out if its an Histamin "surge". But since last sunday i can definately say that the "hot face" thing and the tightness in my chest and breathin difficulties are back. These symptoms were with me in 2004 and 2007 when i was at my worse, so these must be an indication of the Histamin overload. Julie i think you are right by suggesting to higher my zyrtek dosis. Surprisingly i felt ok this morning, it changed again about 5 minutes after i ate something for lunch. The hot face plus a headache were there straight away, i took an extra 5mg. 30 minutes later the hot face and headache were gone but i got the chills instead. My doctor doesnt know much about POTS or MCAD so she isnt really somebody i can talk to. Over the past years i always felt that the Betablockers are helping me. I guess since i always took them, even when i was at my worsed, that i should carry on taking them. I saw 2 POTS specialists in the past 2 years and they both told me to definately take my Betablocker when i mentioned MCAD to them (because i read about it on Dinet), they didnt want to get into that. I dont know how to go about this Histamin, Mcad or allergie thing at the moment. Nobody seem to know anything about it. I guess my doctor will tell me to keep taking the zyrtek if it helps. But i probably never get an explanation or another diagnosis because remember, i have to teach my doctor. Is it really necessary to look further into getting a new diagnosis? or should i just take the antihistamin if it helps without questioning why? Like i mentioned before, these added symptoms only seem to show up every 2 - 3 years. In between they are totally gone. carinara

I cant thank you all enough for sharing your experiences and wisdom with me. This forum is a god send for me. You are all the best doctors i have met so far. It feels as if the zyrtek is helping me. I felt a little better the last few days. Since i cant get in touch with my doctor next week, i decided to keep taking the 5mg zyrtek in the evenings and in case of an "emegency" another 5mg. I read somewhere that Histamin and Adrenalin are related. I wonder now, if all the intensive "surges" i experienced at my worsed in 2004, 2007 and last sunday were due to high Histamin levels. I always used to describe them as if there are 10 litres of pure adrenalin running through my system making my body go highwire. How do you know if the "surge" is due to too much histamine or due to too much adrenalin? If Histamine triggers the Adrenalin production, then i figured that an Antihistamine would also help with them so called "Adrenalin surges" . Last sunday when i ate the prawns i knew 100% that they were causing my "surge". 2 days later i ate some dried cranberries at work and 5 minutes later i experienced another big "surge" . I took 5mg of zyrtek and felt better soon after taking it. Before last sunday (when i found out about Histamine) i would have taken an extra Betablocker to calm my HR down in them sort of situation. But out of my experience i remember that the Betablocker didnt always work in them sort of situation in the past. So how do you know when to take an extra Betablocker and when an Antihistamin? Do you know how Adrenalin and Histamin are related? Carinara

Hi Julie, thank you for your respond. Can you please explain to me why i should ask my doctor for a an H-2, . And, an anti-leuketreine? How would it benefit me? since 5mg zyrtek is considered a tiny dose, would it be ok to take 5mg in the morning and 5mg in the evening? thanks again for your help. carinara

I just wonder what time i should take my 5mg zyrtek? Does it stay in our body for 24 hours? My doctor told me to take it sometime in the afternoon but i don't know if that makes sense because i go to work and really need to function between 8-5 on Mondays and 8-1 Tuesdays to Fridays. If i take the zyrtek in the afternoon will it be still be in my system the next day? Thank you for your help. Carinara

My BP numbers mentioned are the ones laying down. Iam not so much worried about my BP because it is always more on the higher side, but in the past week my overall BP did increase a little. I was hospitalized in 2007 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 too high. Well. In the hospital I spent many weeks on discussing my BP Problems with many different doctors. They did all the tests with me and 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. 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.They said, that there is no danger. 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. I wonder if somebody can tell me for how long i supposed to be taking the antihistamine? My doctor told me to try it out for a week and wait if its helping? Since she went on holiday i rang her partner the other day and asked her if it is ok for me to take 5mg of zyrtek in an "emergency" and another 5mg in the evenings (like my doctor told me). She said thats fine. I just dont really get the logic behind it. I explained my doctor what happened after i ate the prawns and told her about me suspecting a histamin intolerance behind it. She straight away prescribed me this antihistamine, so does that mean i suffer from histamine intolerance, or mcad? How long should i take it for? She just did a tryptase bloodtest a few weeks ago (after i told her about it ) and it came back ok. I dont want to take unecessary medications because i do react very sensitiv to many of them. At the moment i cant tell if zyrtec is helping me because i dont know how i would feel without it. But i think it does probably help. Is it right that Histamin and Adrenalin go hand in hand? I did experience some surges in the past few days. How do you know if its an adrenalin surge an when its a histamine reaction? Dont really know when to take an extra betablocker and when an extra zyrtek? Sorry for even more questions. Carinara

Hello again, i desperatly need all of your help and wisdom at the moment. It looks like something in my body "shifted" again. I now experience symptoms i remember having in my big POTS flare ups in 1998, 2004 and 2007 before my diagnosis (summer 2007). They always stayed with me for a while and made my POTS much worse and uncontrollable. When i got finally diagnosed in 2007 these added symptoms started to dissapear again and i was "just" left with the usual POTS drama still getting used to my diagnosis and learning about it on the Dinet site as much as i could. In the past 2 years since my diagnosis i always remembered that there were some extra symptoms that only came on when i felt my worsed and they left me bedridden because they worsened my POTS symptoms dramatically. Because of this i wasnt able to work for months each time. By now, i know my body very well and i notice how my body starts to respond differently again. I hope that you guys with all your wisdom and knowledge will help me to figure out what is happening to me at the moment. My doctor has no clue. I dont want to be off work again, i am a secretary and can sit 99% of the time (thank god), i have so many things going on right now and i was so much looking forward to the end of summer because now my favourite time of the year starts. I hope that i will find a way to controll whatever is happening at the moment. I have learned so much about POTS already but i know there is something strange on top of it right now, that makes my feel much worse then usual. I try now to describe what "changes" i have noticed in the past few weeks: 6 weeks ago i stopped eating carbs because i noticed that they make me more symptomatic then they usually do 2 weeks ago i got my period, it was stronger then usual and. I felt much worse then i normally do. Ever since then i have headaches every day. (Thats very unusual because i normally never have headaches) 1 week ago i ate shrimps that set my body off completely (i already posted about it) Ever since then, the following symptoms are present. - daily headaches - all of a sudden a hot face - BP always around 160/100 - have to pee a lot more - cant breath right and deep (all of a sudden, not all the time) - all of a sudden i start feeling strange, my hands get ice cold and i feel as if iam shaking inside, it feels as if my body shuts down. - feel as if i swallowed a rock, as if there is a lumb in my stomach and throat, feels as if i swallowed a brush - my ears popp and iam very light sensitive - very tired - some smells make me sneeze and i develope cold-like symptoms. -bowels movements set my ANS off - my HR reacts and spikes a lot worse then usual -no appetit, lost weight already (the past 2 years i was slowly gaining weight without any obvious reason, now iam loosing it again) - i need to eat (also because of bloodsugar problems at the moment), but if i eat something i feel sick after it. (but not all the time, ) - i sweat more (i havent sweated much in the past 2 years) - Get the shakes - My temperatureregulation seems not right at the moment, one second iam really hot and then i get the shivers. -muscle tightness - a sudden tingling all over my body and inside my head. I feel much weaker after all and sometimes it feels as if i would come down with a cold, but i never do in the end. I can feel ok one minute and then an "attack" off all them symptoms come over me and my thorat gets tight. I havent changed my medication in years, i take a tiny dose of beta blocker (4x a day) and another medication in the morning to keep my BP down. I started on 5mg Zyrtec on wednesday (after the shrimp caused this big flare up). I have no idea what to do now, my doctor is out of the office and she doesnt know anything about POTS anyway. What should i search for? Do you have any ideas what this could be? Should i just take Zyrtec for a week and see if it helps? Could this be the "left over" from the shrimp thing last weekend or is it possible that the shrimps caused a shift in my body? What does it mean if Zyrtec works? ( i think it does help but want to watch my reaction to it for a few more days), does it mean that i have to much histamine in me or MCAD or an allergie? The silly thing is, that i have to advice my doctor what to do next, like i said she doesnt have a clue and is out of the office anyway. Please help me figure this one out. I try to relax and sleep as much as i can over the weekend and hope that i will be able to make it through my 8 hour workday on monday. Another thing is, i would also love to hear your advice on how i can handle these "attacks" at work without leaving. At some point (when all the symptoms come together) i usually get panicky after a while and then all i want to do is go home. I have the opportunatey to lay down somewhere at work plus my sister works in the same company. My goal is to make it trough my workday and not run home like in 2004 and 2007 and stay home for months. I figure if i lay down, take an antihistamine or a Betablocker i might feel better. Sorry for this very long post. Iam so much looking forward to your advice. Thanks a lot, carinara

When i wake up like that, i do some breathing excercises to calm my HR down. For example: breath in, hold your breath and try to press the air down towards your stomach (just as if you would give birth), or another one like: breath in whilest counting to 4, hold your breath whilest counting to 4, breath out counting to 4, hold your breath counting to 4. start all over again until you feel better. I also have cold water to drink next to my bed. Cold water also brings the HR down. If you feel a little better, maybe you want to sit down in bed until your body is more in balance. You might also want to place a chair with rolls on next to your bed, that way you dont have to stand up, you can sit straight on the chair and roll around. Hope you are feeling better soon. carinara

Iam so glad, that my post helped you a little. I also have a list of foods which doesnt do me any good. Up until 3 days ago, i thought its only because of carbs dilating my blood vessels but since prawns had a much worse effect on me, i was totally clueless. Thanks to firewatchers respond, i searched the internet about histamine and iam sure that i have a problem along these lines as well. So lets say THANKS TO FIREWATCHER for letting us know about the Histamin in foods. Carinara

I took 5mg of Cetrizin Yesterday evening around 5 o'clock . I noticed an improvement last evening and today at work i felt better then the previous 3 days. I have noticed that my HR didnt spike as much ( even in stressfull situations where it normally does), my face didnt get so hot and i felt better overall. The only thing that got worse was that i got dizzier than usual when i got up to use the bathroom). I kept eating a little chicken and some vegetables and was happy because it looked like i would make it through until 1 o'clock. The past few days at work reminded me alot of the days in 2004 and 2007 when i felt at my worsed. I managed to stay at work the past 3 days but dont ask me how! Well today it all went a little better. Then around 12 i noticed that i needed something "sweat" to eat to keep my Bloodsugar stable, so i decided to eat 20g of whole grain with a little milk and some dried cranberries i fixed the day before. Because i eat whole grain with milk every morning i thought that it wouldnt do me any harm. I just added the cranberries and ate it. About 3 to 5 minutes later my body reacted big time again. My HR shot up, i had difficulties breathing and i started to freeze, my hands got ice cold. I tried to put a jacket on and my HR went totally crazy. I just sat there remembering the times in 2004 and 2007 when i had them sort of episodes at work, not knowing what they are and before my POTS Diagnosis. Back then i went to work every morning and faced them sort of attacks always in connection with some kind of food and in the end i always ended up being off work for a few months because i felt so sick. I figure that since i now know that i have POTS, i will make it through this crisis without missing work. What concerns me is, that iam now left with this weired thing like in 2004 and 2007 that makes my body overreact so bad. Today i sat on my desk, trying to breath right, wondering if i should take another Anthistamin tablett. My thoughts went all over the place. It didnt get better so i took another 5 mg of Cetirizin and called my sister to ask her if she could drive me home. She carried my bag because i couldnt anymore, my HR was going nuts. About 15 Minutes after taking the tablett, i did feel better again, iam just so tired now and i feel weak. I wonder if the Cetrizin stopped working at around lunch time, because i took it the evening before? I dont know if i should take another one this evening (my doctor told me to try 5mg a day out and now i have already taken my 5mg). I cant get in touch with my doctor today. I am stuck and a little scared, i dont want to go into one of the real bad cycles again were something else in my body plays up and makes POTS and everything else uncontrollable. The last 2 years were bad but also good because i managed somehow, knowing how my body is reacting about 60% of the time. Now i feel as if iam helpless and my body hast its own life again. My appetit is gone, but i need to eat, so i eat and then my body reacts to it somehow. So my appetit goes away again and i feel my blood sugar dropping, then i eat again and my body reacts to it. I stopped carbs about 6 weeks ago, because i cant tolerate it in potatoes, rice and bread. The only carbs i eat is my whole grain breakfast. Its seems as if iam in this stupid cycle like in 2004 and 2007 again but this time i know so much more, about POTS. I just dont know about what else is happening to me at the moment. Do you guys know if i should take another 5mg of Cetrizin today? I also take a Betablocker 4 times a day, i hope these 2 medications go together. Sorry for this long post but i really need the input of all POTS experts here. Now i had to lay down because my HR spikes as soon as i move and i feel feverish but iam not. Thanks a lot for your help Carinara

I didnt get a H2-blocker. Just the cetrizine. Since the prawns on sunday i feel not right because i experience symptoms i havent had in over 2 years now. My face feels hot a lot of times, as soon as i eat something i get breathing difficulites and my ANS plays up. I try to avoid foods with histamine and carbs but still dont know enough about what i can and cant eat. I just know, that when i was at my worst in 2004 and 2007 my body reacted similar. It feels as if there is something on top of the usual POTS drama. For the last 2 years i kept gaining weight even though i have sticked to my diet but know i am loosing weight again, i have no appetit, but i need to eat because of blood sugar problems. As soon as i eat something, my ANS reacts and i cant breath right. Another thing i have noticed is, that since sunday i have to pee a lot more. If i dont go straight away my body goes mad. My HR spikes, i get jittery and cold all over the place. Iam a little nervous about the new medication, but i guess i will give it a try. Thank you for your help carinara

I saw my doctor yesterday. She told me to take a antihistamin medication called cetrizin ( Cetirizindihydrochlorid ). I should take it now for a week and see if i feel better with it. Does anybody of you know this medication? Iam always very sensitive to medication and iam a little worried but i think i need to try it out. Thanks a lot, carinara

After so many years living with POTS i do know my body very well by now. I do have symptoms on a daily bases and i also have flare ups quiet often. But what i have experienced yesterday was definately more then just a usual POTS episode. I remember having them back in 2007 before i got diagnosed. That was the time when they tried various medication out on me in order to bring my bloodpressure down. Diuretic caused me the worst attacks i have ever experienced. What happened to me yesterday was the same kind of thing. I know this definately. I have to be so very carefull food wise anyway, because as soon as i eat carbs or garlic or anything that dilate the vessels i experience a milder form of whatever happened to me yesterday. The symptoms didnt go away after laying down yesterday either. It felt as if my body got a motor in it that kept going faster and faster. This uncontrolable sensation was definately caused by something that dilated my vessels like Histamine . I will see my doctor tomorrow evening and talk to her about what happened. I will ask her about an emergency medication i can take if something like that ever happens again. Thank you all so much for your input

i honestly believe that it was the histamine that caused my symptoms today because i know exactly how it feels when i eat something (food or medication) that dilate my blood vessel. It was the same reaction like i experienced 2 years ago when i had to take diuretics or when i eat carbs that also dilate the blood vessels. I talked to my doctor a few months ago about getting tested for MCAD. She did a blood test that came back ok but she also said, that MCAD is not easy to diagnose. I asked her back then if she could describe me any kind of emergency medication in case of a "allergic" reaction. She gave me 2 different medication one is called ranitic ( Ranitidinhyddrochlorid) and the other one is called xusal (Levocetirizindihydrochlorid). I have never taken them, just looked a few minutes ago what they are called. I dont know if i should have taken them today, if they would have helped me because iam so sensitive to any sort of medicatio, iam so confused. I just hope i feel better in the morning. Thank you all so much for your help. carinara

I just searched the internet and found a german site about histamine intolerance, that sounds all so familar. I have noticed similar reactions like today in the past and always blamed it on the carbs and their dilatition of the blood vessels. One thing that always occurs with it as well is that i cant breath right in them sort of situations. Reading about a histamin intolerance makes so much sense as well and that was definately what happened today. I dont have any sort of medications at home like you guys recomended. Next time i see my doctor i will talk to her about it. For now i just took some vitamin c because i read that it can bring the histamin level down as well. I hope that the symptoms go away over night because tomorrow is monday and i have to got to work for 8 hours. I just wonder how many of us have a histamin intolerance, i think that is what i have got.

Thanks again firewatcher, do you know of anything i can do right now to get this histamine out of my system? Like drinking loads or something else? Thank you so much.

firewatcher thank you so much for this information. This really makes sense. From now on i will always keep this in my mind and you bet, i never eat prawns again. I just wanted to get some protein in me because i cant tolerate carbs, i just wanted to try something new besides chicken but i guess i ruined my day with it. Does this happen with all seafood, even tuna? I still feel sick but i guess all i can do now is wait it out or is there something else i can do in order to get my body more settled again? Thanks again you made my day, carinara

I just had (and still have) a very bad flare up in symptoms due to eating 100gramms of already cooked and peeled prawns about 2 hours ago. I felt quiet well and ready to go a little bit out of the house to a coming together i was very much looking forward to. My HR is out the roof, i cant breath right, i am shaky all over and freezing and it feels as if i have swollowed a stone and i have a lot pressure in my chest. It feels much worse then usually and i try to stop the panick that is creeping up. I cant get up at the moment and craweld back into my bed because i have to wait it out i guess.Its not that i never experienced this severe symptoms before but right now they are as bad as they were when i felt my worsed, and they just came out of the blue after eating them prawns. After so many years of POTS i know by now how i can avoid big unexpected flare ups like that, i know that carbs widen my bloodvessels (dilate) thats why i cant eat them. It feels the same right now after eating them stupid prawns, i definately know its from the prawns because i have changed my eating habbits a long time ago and the prawns are just something new i ate today. I feel really sick and a little panicky right now because my body is going mad at the moment. Any ideas why prawns could do something like that? I ate them cold just out of the packet. I never ever eat them again. Thanks for your help. carinara

I noticed lately, that when i sit on the floor and have to get up, i feel much more dizzy, lightheaded, shaky and unwell than if i get up from a chair or the couch. Everytime i have to sit on (for example) the gras because there are no chairs around or on the floor (just a few minutes) ago whilest i was folding some laundry and then get up, i get much much more symptomatic and even if i sit down quickly on a chair straight afterwards, the intensive symptoms stay with me for a long time. When i get up from a position were my legs were dangling down, it never gets that extreme. Does anybody else experience this, Do you have an explanation for it? This just happened again about 20 minutes and i still feel real bad right now, it feels like my blood is somewhere were it shouldnt be. My legs tingle my head is spinning, i have the shakes and my ears are ringing, just because i sat on the floor. Thanks a lot for your help carinara

It was a very hard and stressfull time before my diagnosis. Due to me feeling so bad healthwise I couldnt be the mother i always wanted to be wich hurt me the most and left me with a constant bad conscience . My ex husband was self employed and i was doing all the office work but couldnt function anymore wich made him so mad and aggressive plus add the stress that nobody took me serious and i felt totally misunderstood, helpless, alone and so scared that something major would be wrong with me and i would die and leave my little one behind. I always knew i had to keep searching, i wanted to be the mother i always dreamed of, i had so many dreams for my life. Back then my Dad had a major heart surgery and watching him dealing with it was a big time inspiration for me, he truly is my big hero. I never wanted to give up trying my best to find out whats wrong with me. I always trusted in life and god. I started to read spiritual books again and reminded myself that i should always try to find the blessing in every situation and crisis. And even if it might seem at first if there is none, it always turns out that there is one. . In my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. So i kept searching and searching, just doing nothing didnt feel right to me. I tried to learn as much as i could out of suffering with all these weired symptoms, just as if i was researching them (me being a researcher) in every subject to learn and help me and other people with my experience. Even in my deepest hours, days, weeks when i couldnt stopp crying, felt my life was falling appart and felt as if i didnt know myself anymore i tried to remind me that this illness was given to me to teach me many things and that something good will come out of it in the end of the day. . Learning Is always a process. And i wanted to be an example for my daughter not to give up. carinara

coffee has always been a big no go for me. I cant tolerate it at all, it makes me shaky and tachy.

I remember having weired symptoms on and off when i was a child. Then in my early teens i started getting very high Heart Rates and i felt dizzy and shaky a lot. Our family doctor prescriped me a Beta Blocker because my Blood Pressure was also higher then it should have been. Even though i was only a child then, i do remember the bad reaction i had to this Beta Blocker. The Problem was that after my doctor explained to my parents that there was nothing wrong with me and that it might just be a nervous reaction i suffer from, my parents started to think that iam "too sensitive". But like i mentioned, the symptoms werent present all the time back then, i had a more or less normal childhood healthwise. Then after my daughter was born i started to get very sick. I felt i had no control or influence on my body anymore. My HR and Blood Pressure were very high and i couldnt stand up without crazy symptoms. My daughter was only a baby then and i remember calling my mother quite often because i was laying on the floor crying and unable to get up and change my daughters diapers because my body didnt allow me to stand on my feet. Back then i saw our family doctor again, he didnt know what to say, exept that he thinks that i propaply have too much stress at the moment and that i just need to relax. I knew something major was wrong with me and i told him i need to see some kind of specialists. Well, i did get to see a few, but nobody could help me. They didnt find anything wrong with me. They made me try out different medication and when i had serious side effects they said that they would go away if i keep taking the tablets. After it didnt get better, i stopped them myself and slowly i felt a little better again but never quiet right. 2 years later i had a bad crash again. By then i have already watched and studied my body reactions very well. I went to see different doctors including our family doctor again. Now i told him that my HR doubles up as soon as i stand up, i even demonstrated it to him, but he had no clue. I was home and bedridden and my body was doing crazy things. I found something on the internet about orthostatic problems and confronted my doctor with it but he said that i would be too young for that. Because my health situation didnt improve, i had to stay in 2 different hospitals but they couldnt help me either by then i got told that i might suffer from an anxiety disorder and panic attacks because i refused to take my daughter somewhere on my own in the car. I kept explaining that i dont like doing those things anymore because i cant trust my body and i feel so sick and dizzy on a daily bases, but nobody took me serious. It took 4 months before i could return to work. I must admit that after many months of searching and trying to find out whats wrong with me i started to think that it might really be an anxiety problem. I read many books about anxiety and Panick and saw a therapist i tried to stick to the tipps he gave me, like putting myself into as many anxiety situations that i can. I honestly stood in extra long lines, almost fainted, went to the sauna with a HR of 200+ drove on the autobahn without being able to see right, all these times i knew that there must be something else wrong with me. Then in 2007 came my last big time crash that left me totally bedridden. I couldnt get up at all, my partner carried me to the hospital. By then i was an expert on my symptoms. I took my pulse watch and showed them, but nobody had a clue, they gave me diuretics to get my BP down and didnt know how to handle me when these diuretics caused the worsed tachyc.episodes i ever had. When my boyfriend carried me home 1 week later i searched the internet again but this time i decided to look into english sites. An angel must have sat next to me when i found this wonderful Dinet Site. When i read through the symptoms and what to avoid section on this web site i started to cry so much. I knew straight away that thats what i suffer from. All these points mentioned there were exactly my experiences. It was like the light on the end of a 10 year long dark tunnel. I found the adress of Prof. Hilz here in Germany on the Dinet doctors list , and made up an appointment at his hospital. When i went there 2 Weeks later i had all the autonomic tests including a TTT wich they had to stop after a few seconds because my pulse went from 80 to 160 and i couldnt tolerate being upright anymore. I bet i was the first and only POTS Patient that cried in his office because i was so relieved and happy to finally have a diagnosis. After that i changed our family doctor. Now i have to teach my new doctor about POTS and she keeps appologizing to me because she feels sorry for me because she cant help me because she doesnt know anything about POTS. From all these many years of suffering i truly learned that i have to look after myself and not wait for doctors to find solutions. If i would have got a diagnosis 10 years ago, everything would have been much easier for me and my family. God bless Dinet and all of you as well. Lots of love from carinara

Hello everybody, i know that raising the arms above the head causes problems for many of us. I have noticed lately, that its easier for me to lift my right arm because the symptoms dont kick in as quick as they do if i lift my left arm. I have also noticed that its easier for me to carry something with my right arm instead of my left one. I was wondering if anybody else is experiencing this? Can anybody explain that to me? I figured that since the heart is on the left side it must be easier to pump the blood back into the left arm, but somehow the opposite happens. Thanks alot for your input. carinara

Before i got diagnosed with POTS, i got prescribed several kinds of diuretics to get my BP down. I couldnt tolerate any of them, in fact they left me with the worsed side effects i experienced so far. They left me bedridden every time i have tried them. I would never ever try them again. I cant even tolerate herbal diuretics, they make my HR spike as well. carinara

I totally agree. Thats what people tell me as well whenever its obvious to them that i feel sick. Most of the time nobody knows though how i feel. I feel sick on a daily bases at work. I use all my planning skills to get through my working day and every step at work is calculated by me. This sentence doesnt work for me either. Like you said, the only time i cant go to work is when i feel much worse then usual and cant stand up at all. carinara

When i told my dentist about my concernes because of my medication sensivity, POTS and my bad experiences with anesthetics i experienced in the past, he explained to me that there are anesthetics with adrenaline (epinephrine) or anesthetics without adrenaline he could use. I know that adrenaline is a big no go for me so i chose the one without adrenaline and had no problem with it.