carinara

Endure, my system ia also very hypersensitive. I have written posts before where i described how any kind of stimulus sets my ANS off. Like you i always try to be as calm and relaxed in any sort of situation because any kind of tension no matter if its positive or negative make my symptoms flare up instantly. Its so hard because iam a very emotional person and cant meditate 24 hours a day.

i noticed that whenever i am very tense and on the verge of getting an episode i can often stop the exploding symptoms by simply making myself cry. Its enough to just feel the tears still behind my eyes to calm my body down. Its not necessary for me to cry rivers. I tried this technic at work before and whenever its needed, i start to listen to an emotional song or think of a touching moment in order to feel my eyes fill with tears and on many occasions this calmed my system down quickly. Has anybody else ever experienced this? Whats happening in the body when we are crying that would help settle my ANS down? Please keep in mind that its not necessary for me to cry loads, iam just talking about being on the verge of crying (nobody can notice it except me). I already started to use this as a new coping technic for me. Thanks a lot for your replies. Carinara

Just wanted to let you all know, that i stopped taking the H1 blocker 2 weeks ago and i must say, that the intensive tiredness that stayed with me for the past few months, is gone again thank god. I plan on taking them only if needed now. Its so strange because when i first took them last november they seemed to help and after a few months they seemed to make me worse. I noticed that kind of reaction to other medication as well in the past. First the medication seems to help then i start feeling worse again but dont make the connection to the medication and then after many months or years i stop them and i discover that i feel a lot better until the next flare up arrives. Then i have to take something again that might help at first... weired.

Thank you all so very much for your support, it really helped me a lot to get through this past week. My mum is still in hospital but out of intensive care now. She is doing ok under the circumstances. We are all so thankfull that she was so very lucky. Her guardian angel must have been right beside her when the accident happened. My father and sister visited my mom in the hospital every day. I always drove with them and waited in the car for their return. It was very hot the past week so we always parked in the shade and i took some cool pads, a water sprayer and a ventilator with me. I talked to my mum on the phone and my sister took a few pictures of her. I so much wanted to be a part of supporting my mum and my dad and i figured that waiting in the carpark of the hospital was being my little part in all of this and it made me feel a little better. I was shocked when i saw the pictures of my mums face and i couldnt see myself visiting her without getting really sick due to the emotional impact. After a few days i noticed that i got more nervous every time i thought of my mum and even though i did wait in the car i felt sader every day because i havent managed to go and see her personally. I analysed the situation over and over again and asked myself if i was selfish by not seeing her. I was so scared that i might get so sick seeing my mum in the warm and sticky hospital room that i get an episode in front of her and scare her. I didnt want that. On the other site i felt sader every day because i sat in the car for hours but didnt manage to actually go inside and give her a hug. I noticed that my father and sister felt more reliefed every day after seeing her and i felt more and more frustrated about my part in this situation. By Friday i was a nervous wrack so i said to myself that i have the weekend now to really try to go and see her without worrying about going to work on top of all this. I asked my partner if he would join me. My plan was to go to the hospital without anybody knowing and then take it from there. If it takes me 3 hours to go and see her then so be it. And if i wouldnt manage it on friday then i still got saturday to try. Yesterday (Friday) we drove to the hospital and we found a parking spot close to the entrance. I was very nervous and hectic and all of a sudden my plan on taking it slow didnt work anymore. I stopped thinking, i just got out of the car, walked very hectic towards the elevator and into my mums room, sat down, huged her and cried my eyes out. Everybody in this room probably thought that i was crazy or something. After a minute or so i felt better again. The room was quiet cool and my mum looked a lot better then on the photos. We stayed about 30 minutes before we left. Today i also visited her, but it didnt go so well because it was too hot and the hospital smell was too intense, we only stayed for about 10 minutes. But iam so relieved that i managed to see her and that i saw with my own eyes that she is still alive and that she is recovering. Thank you all again for your help and support, it means so much to me.

Just when i sat in the bath tub last evening in the middle of having a shower somebody rang the doorbell like crazy. My partner opened the door and i heard my Dad saying something in a very hectic voice and then he left again straight away. The next thing that happened was that my partner came into the bathroom telling me, that apparently my mum fell off her bicycle straight on her face and head and that an ambulance just picked her up. As i was sitting there my HR shot up and all the other symptoms kicked in. I was so scared and shocked and totally helpless. There was a part of me, who watched the whole scenario and reminded me to try to stay calm in order to make the right decisions now, but pure panick just took over. I told my partner, that we shouldnt have let my Dad (he is 75) drive the 8 miles to the hospital on his own and so my partner wanted to get ready to drive and catch him somewhere on the road. I didnt feel up to getting out of the tub because of my flaring symptoms and so i rang my sister straight away and told her about what happened and also asked her, if she and her boyfriend can drive to the hospital straight away. They were on their way a few minutes later and my partner stayed at home with me and my daughter. I feel so bad about being selfish because i arranged that my sister (she lives half a mile away from me) drove to the hospital and my partner stayed home with me instead. It took me quiet a while before i made it into my bedroom and put my compression stockings on. I tried to stay calm but it was very difficult because the scariest thoughts about my mum came into my mind and adrenaline just kept shooting out of every corner of my body. I am the oldest child in our family. Before i had POTS i was allways the one who took over responsibilities in them sort of situations. Like when my Dad had major heart surgeries or my grandmother was dying. I was the one who talked to the doctors and went to the hospital straight away to be with them. Now iam not able to. I stayed in bed, praying and waiting for my sister to call me. My sister and my dad kept me in the picture about everything that happened. They told me that my mum was going to have a CT of the brain now, and that they have put her to sleep and so on. It was only after they told me that the brain scan came back ok, that she didnt break anything and that her memory is coming back, that i calmed down a bit and so my symptoms were getting better. I found out that they have to keep her in intensive care for the next 24 hours and that her face looks totally blue, bloody and swollen and that she hit her head bad. I felt so useless because i didnt think i could make it to the hospital to see her because even the thought about how she might look makes me feels sick and weak. After another 30 minutes i told my partner that i would like to drive to the hospital and just sit in the car and wait for my family to come out. Thats what we did... We sat in the parked car and my partner went to see my mum but i couldnt. I was so scared that the walking i had to do plus the emotional stress when i see her in intensive care would make my symptoms totally flare. I know my body well by now and i was so scared that i might end up staying in the hospital as well because of me having severe problems (i cant see blood lately either) and at the same time upsetting my family even more with me being sick there. So i waited in the car for almost 3 hours. When my dad and my sister turned up i jumped into their car and we drove home together. I didnt sleep at all last night... My sister decided to take monday off to support my Dad and spend time with my mother and i decided straight away that i wouldnt go to work either and go with my sister and Dad instead. She just picked me up at 8 in the morning and now here iam again sitting in the carpark whilest my sister and Dad spend time with my mother. They all understand why i dont want to come into the hospital room but iam not sure if i understand anymore. I sit here in the car at the moment and feel as if i take an easy way out. Iam so scared to walk into my mums hospital room seeing her hurt. I know how these sorts of situations can trigger an episode and i dont want to be the center of attention then. My sister just told me that my mum is ok, her face looks really bad but otherwise everything is under controll. I dont know what to do. I put so much pressure on myself by telling me iam a selfish cow if i dont go in and then i dont like the thought of making my mum even sader by getting an episode or crying my eyes out if i go in now. There is also another patient next to her who cant hardly breath. Any advice on how i should handle this situation? Should i go and see her no matter what? Or should i wait until she comes home again (which they said it could be in 2 days). Thanks a lot, carinara

Iam planning on going off my H1 Blocker starting tomorrow because i suspect that they are the cause of my big time tiredness that effect me very much and make my symptoms flare up. Starting tomorrow iam off work for 5 days and i thought this might be a good time for the trial. My doctor is on holiday at the moment but she has already told me a few months ago that i can try to come off them so we can see if it makes me feel better. I have a few questions regarding the stopping of the H1 blocker but i cant ring my doctor at the moment. I would really appreciate your help. BTW i have been taking 60 mg Fexofenadin since last october. 1.) How do i go about going off them? Should i just stop taking them or do i have to minimize the dosis daily? 2.) is it ok to take the H1 Blocker if necessary? (in case i have some kind of reaction like last october due to shrimps) 3.) how long does it take until the medication is out of my system? I started the H1 blocker because of a suspected histamin intolerance. I dont have any allergies. Thank you all so much for your help. Carinara

Hello everybody, just wondering if anybody can give me an advice. For the past 4 - 6 months i have been feeling so very tired. When i have to get up for work in the mornings i feel as if i was hit by a bus and the sleepiness stays with me for the entire morning and sometimes the whole day. Due to all my other symptoms i allready have to stick to a very tight routine in order to get through my workday more or less ok but this tiredness on top of all the other stuff is really bad. It feels as if i hadnt slept at all. Now i always go to bed at 9.30 at nights and my alarmclock wakes me up at 5.30 in the morning (thats 8 hours sleep), I cant stop yawning and my eyes and face feels swollen up even though it isnt. If i dont keep moving my legs under my desk, it feels as if my body wants to go into a sleep modus and at the same time my POTS symptoms increase big time because of the tiredness. The only medication i have changed within the last 7 months is that iam taking an H1 blocker (60 mg Fexofenadin) every evening. I had to take it because we thought that i might have histamine intolerance because of a major attack due to eating shrimps. My doctor adviced me a few weeks ago to try to come off the H1 Blocker and see if it makes me feel better. I dont really know what to do now because at first i thought that the H1 Blocker made me feel better but now iam not sure anymore. What do you all think? Has anybody else experienced something like that with such a tiny dosis before? Does it make sense to take the H1 blocker only if needed (like after an reaction of some kind of food ect.? ) or does it have to stay in your blood stream all the time to work properly? By the way, i dont have any allergies i know off. Thanks a lot for your help. carinara

I have been taking a small dosis calcium channel blocker (2mg of a combination of Candesartan und Hydrochlorothiazid) for over 6 years now. I wasnt diagnosed back in 2004 when i first got them prescriped. Back then i was in hospital because of a major POTS flare up but all they could meassure was my high BP. In order to lower my BP they made me take a small dosis of BB plus a calcium channel blocker. After i got diagnosed with POTS in 2007 i noticed that everything that dilates Bloodvessels (like carbohydrates, garlic, diuretics and so on) makes me feel very sick. Then i recently found out that my calcium channel blocker also dilates blood vessels. Iam planning to ask my doctor if i can try to get off them to see if it makes me feel better overall. My BP is still on the high side and my BB on its own might not lower it enough.

i experience the same thing you do. My BP is almost always on elevated. I dont have big dropps in BP either (never caught one). My normal BP range in during the day is around 140/100. In the mornings before i get up its a little lower. If i get an episode it can get as high as 180/130. Even if i feel iam going to black out, my BP is elevated. I have been to 2 different POTS specialists and they both said, that there are POTS patients who deal with that but that most POTS patients deal with low BP.

i always take a box with some chicken, whole bread and nuts with me wherever i go and something to drink of course. Even if i have to go out for a meal with my family or if iam invited to a birthday party because if i feel my blood sugar dropping i need to eat something straight away and in those sort of situationsi cant wait for the"official" food to be served. I normally have to eat a tiny amount (a few bites) every 30 to 45 minutes. But it must be something that keeps my bloodsugar more or less stable, like chicken and nuts.

such wonderful news .Thanks for sharing.

Have you thought about the possibility that low blood sugar could be a part of your problem?

I wrote here before that any kind of emotions (positive and negative ones) are a big trigger for my POTS symptoms to flare up. I pointed out how "big emotional events" make me very sick but today i would like to ask you for some advice on how "little everyday emotional stuff" effects me and if anybody can relate. 1.) POSITIVE EMOTIONS: : Whenever something touches me and causes me to get goosbumps like for example a nice song, a deep conversation with a friend or a emotional movie, wishing someone a happy birthday and so on....the feeling of getting goosbumbs gets so intense that it hurts me, it feels as if an electric shock goes through my body and reloads itself in my head, its really painfull. 2.) NEGATIVE EMOTIONS: : Whenever i get a little tense because of for example: today i witnessed a conversation at work, where a coworker screamed at another one or whenever i see that somebody is not being treated right, i immediately get this feeling of not being able to breathe right. It feels as if my lungs get tide and i have to breath against resistance. After them sort of situations it takes a while for my body to settle down again.( Sometimes a few minutes sometimes a few hours).... I noticed lately that my stimulation barrier seems to get lower and lower. Today for example i wanted to give some free music cds away to some coworkers and the little excitment about giving them a present stopped me doing it because i could feel my body react. So what i did was tell them that i plan on giving them some cd's sometime next week... Now they know and now i dont have to worry about their any my excitemend anymore because its not a surprise to them now. I used to love surprises and i used to love discussions. What happened???? Can anybody relate to the goosbumps and the breathing difficulties? What ist the cause of these symptoms especially the breathing thing? Thanks a lot for all your help. Carinara

My thoughts and prayers are with you and your family.

I take an antihistamine since last october after a bad reacting due to eating shrimps. When i eat garlic, onions and carbohydrates i get almost the same reaction thats because them 3 dilate the blood vessels and that sets my system off big time. A few days ago i accidently ate a tiny amount of salat sauce and didnt taste the onions and garlic in it. After a little while i had a bad reaction to it and then found out that there was garlic and onion powder in the salat sauce. I react very sensitive to everything that dilates the blood vessels and garlic and onions to that. Iam still on my H1 Blocker for the other stuff. all the best, carinara

Hello everybody, iam really interested to find out if there is anybody here with always high BP. Mine is usually around 140/90 when i wake up, it stays around 150/100 almost all day with occasional spikes up to 190/130 and comes down again when i go to sleep. In during my sleep it gets down much lower. I always read about POTS patients with low BP. Anybody here with high BP? I had these numbers for years now. Thanks, carinara

what i learned about a pheo is that the clinical characteristics are the classical 3 points accuring at the same time: tachycardia + sweating + headache. These symptoms are not triggered by upright posture or heat or stress and so on. They come without a noticed reason and out of the blue. Sometimes they can be triggered if you put pressure onto your abdomen because thats because 90% of the pheos are located around the kidneys.

I can totally relate to the "spells" you are describing. I have been getting them at work almost on a daily bases lately. There were months in the past were i didnt get them at work but since something shifted again in my body last november and my symptoms got worse again, i keep getting them regularly. I also feel much better and calmer when iam finally at home and can lay down whenever i need to. I adopted the policy that i try as hard as i can to make myself "comfortable" at work. I practise on seeing my office as an second livingroom and my coworkers as a second family. I want to integrate POTS in my workday as much as i can. If i feel really bad at work i can hide for a little while in an empty room and help my system to calm down again. But you are right when you say, that everytime these spells come they feel so frightening and bad. They still do with me . Everytime they appear i have the urge of running away from work but i force myself to stay and wait them out 90% of the time. Sometimes i figure at least iam not all alone at work, there are always people around in case i would need help. I also started to tell some people at work about my condition and the "spells", which makes me feel a little securer. A good thing is, that i dont have to stand a lot. I can sit down 99% of the time thank good. I know a few people who faint every day at work (not at my work) or others with severe problems. If they can make it i figure i can make it, iam still trying every day thats all i can do. I wish you all the best, carinara

Hello everybody, Just wondering how many of us have amalgam fillings in their teeth. The symptoms of amalgam toxication are matching many of the ANS / POTS symptoms. I wonder because it was always very common in Germany to use amalgam as a filling and i still have a few. I also remember a man in my village being very sick about 15 years ago. He had so many neurological symptoms and had to use a wheelchar. After he took the fillings out he recovered very quick and is a healthy man today. I just searched the internet and found out that there is a test where you have to chew chewing gum for about 5 minutes to find out how high the toxins are that are released by the amalgam fillings. Do any of you have amalgam fillings as well??? What do you think? Thanks a lot carinara

Hello everybody, a few days ago i read on the forum that adrenaline surges cause frequent urination? I would really like to know if this is true and if its true why this happens? What is the connection between an adrenaline surge and frequent urination? I always wondered why i have to pee so often in them sort of situations. When iam at work and these surges come (mostly out of the blue) all i want to do is sit down, close my eyes and wait them out because standing up in them sort of situations usually makes me feel worse but everytime a surge comes i get the strong urge to empty my bladder and if i dont do that i feel even worse. I would really love some advice why that happens and if there is anything that helps. Thanks a lot and blessed easter to all of you, carinara

Hi Tammy, i would really be interested to know why adrenaline surges cause frequent urination? I always wondered why i have to pee so often in them sort of situations and searched dinet for it but never found an answer. Do you also know why ginger tea would help? Thanks a lot, carinara

Thank you all for your replies. Germany does follow the Daylight saving time. The clocks were changed last sunday. That day i went to bed 1 hour earlier and slept in as well. The tiredness started a few weeks ago but it was also very bad this week so i cant really say if the time change contributed to it this past week. I don't suffer from pollen allergies thank god. When i first started with an H1 blocker back in october last year i talked to my doctor about trying zyrtec , i have read a lot about zyrtec on dinet and thought that it might be the best choice for me ( i am very sensitive when it comes to taking medication). I took it for a few days but had to stop it because it gave me bad side effects. I tried Telfast (60mg Fexofenadinhydrochlorid) straight after it and felt much better on it. I started it back in october 2009. I noticed a little tiredness back then but nothing major like right now.The only thing i have changed in the last 4-6 weeks is that i started to drink gatorade every day. carinara

Hello everybody, for the last 4-6 weeks i felt sooooo very tired on top of all the other symptoms. When i started a tiny dosis of H1 blocker last november i noticed that i got tired much quicker then usual. Now suddendly this tiredness got much worse and i have no clue if its because of the weather, the H1 blocker or a combination of both. The other thing i changed is, that i started to drink gatorade about 4 weeks ago....can gatorade make one tired?????? I have about 7 hours sleep every night (i go to bed at 9.30 and my alarm clock wakes me up at 5.30 in the morning) It seems as if i never really wake up 100%. My symptoms are worse at the moment anyway and this tiredness on top of it makes me feel very weak. Its very hard for me to get through my 5 hours work day at the moment. Sometimes it just feels as if my body shuts down on me. When i get home i normally dont have a nap because if i do, i feel much worse afterwards. As soon as i get too relaxed or sleep for even a minute it seems as if my body needs at least an hour or more to adjust again after wakening up. Thats why i rather stay awake until i go to bed in the evening. Yesterday after work i was so weak and tired that i couldnt help myself falling asleep for about 10 minutes at my parents house. When i woke up a noticed that i felt much better and i felt better for the rest oft the afternoon and evening. I had a good night sleep and when i woke up this morning i felt so bad again and so tired. At work all i wanted to do is just close my eyes, but i cant of course. I have also noticed that sometimes when i wake up i do feel better and not tired but if i go back to sleep (like on the weekends) for another 30 minutes and i wake up, i feel like i was hit by a bus... I feel so tired and my symptoms are worse then for the rest of the day... I dont get what is going on there at the moment. I was planning on going off the H1 Blocker as soon as i have some days off work, just to see if it helps, or should i stop the gatorade Thank you all for listening. Carinara

sending love, prayers and healing hugs from across the ocean.

i feel much better when its cold, rainy and clowdy. Last Thursday and today the weather has changed into much warmer temperatures and both days, especially today, i feel really symptomatic. I even had to leave work earlier today because i felt so sick. All the people around me love the nice and warm spring weather and i wish it would get cold and rainy again.