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carinara

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Everything posted by carinara

  1. When my Aldosteron was tested for the first time back in March (blood test) it was a bit over baseline around 400. When it was tested in June it was also a bit over baseline (24 hour urine). When it was tested 2 weeks ago (blood test) it was over 1000 which is very high. The doctor even wondered if it might have been an error and so we repeated the test with a 24 hour urin again. I will have to wait until next week for the results. I started cut my salt intake back in March and since then, i eat less then 2g Salt a day. I thought it would help to reduce my blood pressure. I dont know if
  2. Thank you all for your input. I dont know what to do now. My nephrologist is a nice guy but never heard about POTS. My family doctor is also nice but she doesnt know much about POTS either. The POTS specialist who diagnosed me 13 years ago is not available anymore. If i go on with the nephrologist he will only treat the elevated Aldosteron with a diuretic which i cant tolerate. Should i look for another POTS specialist here in Germany and start all over again so that he can take into account every aspect? Back in 2007 when i was diagnosed with a tilt-table test, they never explored deeper. It
  3. Hello everybody, i hope you are all doing well. You have not heard from me in a few years now but i regularly came back to read the posts. Today i want to share my current situation hoping that someone can help. In the past 7 years my Pots got better and better to a point in which i was able to lead an "almost normal life". Of course i had good and bad days but even the bad days were managable (nothing compared to the extreme symptoms years before.). I even was able to travel to India twice (in 2017 and 2019)and was able to visit the Himalayas, something which i never thought would be pos
  4. This symptom has been with me for many years now. Sometimes its worse and sometimes its better. I dont have any sinus problems. Iam still not sure if it is the neck position or the eye position which causes the symptoms. Maybe its a combination of both. Today it was very bad, (probably the worst in 1 year) and another thing i have noticed was that in during the dizzy spell i had to pee frequently as well.
  5. No, i dont really have any pain in my face with it exept that my neck starts to hurt after a while. I think this must be the so called "coat-hanger-pain" where the brain is trying to get more blood whilest using the neck muscles. I have no ear problems at all. Iam not even 100% sure if it is the eye movement which causes the problems or if it is the position of my neck whilest looking up or looking down. Sometimes it seems as if it is the eyes and then it seems as if it is the neck. Sometimes the symptoms are better and sometimes worse.
  6. Hello everybody, hope you are doing well. I just wonder if anybody can relate to this. Often when i look down or look up like for example, if i put a newspaper on the table in front of me and lookn down in order to read it like this, i get very dizzy. The same thing happens when i look up like for example if a tall person stands in front of me and i look up in order to talk to this person, Iam usually fine for a few seconds but then it feels as if the blood flow to my brain gets interrupted and i become "light headed" , dizzy, very sensitive to light and i cant focus right anymore. Can anybody
  7. Hello everybody, lately i keep hearing loads and loads of positive news about a product called stemtech. http://www.stemtechbiz.com/Home.aspx I was just wondering if anybody on this forum tried it out before?
  8. As soon as i eat something which dilates my blood vessels i start feeling sick. I started to notice that about 4 years ago after having undiagnosed POTS for about 10 years. It took me years to figure out why i cant tolerate some foods. Foods that dilate bloodvessels are: Carbs, sugars, onions, garlic and also some nitrits. If i eat 1 potato for example i start getting a real bad episode every time about 20 minutes after i ate it. This NEVER happens if i eat proteins. Carbs are the worst for me and thats why i changed my food and eat more proteins now. Some medicines also dilate bloodvessels.
  9. I have been on a calcium channel blocker for the past 6 years. Back then i wasnt diagnosed yet and all my doctor was able to see and meassure was my high BP and that was the reason why he wanted me to take a calcium channel blocker. After taking it my health situation got really bad, i was bedridden and couldnt stand up at all. The problem was that back then i wasnt educated about POTS and my Dr. didnt take me serious. It got so bad that i admited myself to a very good hospital about 200 miles away from where i live. I was unable to walk even a few meters, my partner had to carry me to the car
  10. It took me years before i found out why i got panick attacks right after i ate something. Its because of the carbs. Carbs dilate blood vessels and everytime i eat something that dilate my blood vessels i react very very badly. Even if i eat a tiny potato i feel really sick. Thats why i mainly eat proteins now and with them it never happens. BTW garlick and onions are a big no go for me as well.
  11. I work as a secretary. Having POTS for such a long time now i have found soooo many little helpers and tricks that get me through my workday. I stick to a strict routine concerning sleep, food and many other things. The good thing is, that i dont have to get up often and if i have to, it will only be for a few minutes. My sister and my partner also work at the same company that way i dont have to drive myself. I work 28 hours a week and in the afternoons i never make any plans to go somewhere because i need to rest and do little things around the house and be with my daughter. I also have a se
  12. I can totally relate and thats why i never ever bend over or pick something up of the floor "unplanned". At home i allways use an office chair with rolls on and do everything whilest sitting down. At work i also make sure that i sit down + if something needs to be picked up, i wait until work is finished and iam ready to go home, that way in case it makes me feel really sick i can lay down straight away (i allways drive home with my sister). Or i ask somebody to do it for me.
  13. I 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. Before i was sick, i took things for granted. I just got up, walked wherever i wanted. I did my sports, went on marathons and besides my full time job, i also was an aerobic instructor in the evenings. Now since iam not able to do these things anymore i look back and am thankfull that at least i once experienced these things. The memories are inside of me, i can remember them clearly, i can feel them i can even "smell" them sometimes. In m
  14. I always clean in slow motion whilest sitting in my office chair with rolls on. I do every chore in the house like this.
  15. Hi everybody, just thought to chip in because of the high blood pressure subject. My BP is almost allways on the higher side. My daily average is around 150/100. My BP comes down in during the night though. I do sometimes have spikes to 190\130. I have been trying all sorts of medication over the past 7 years. Diuretics left me bedridden, they are a big NO GO for me. In fact all medication that dilate blood vessels are a big NO GO for me. I currently just take a Beta Blocker. I have been to many doctors including POTS specialists and over the past 7 years i was in different hospitals 4 times.
  16. the same happens to me as soon as i eat carbs. Carbs dilate blood vessels and everything that dilates blood vessels makes me very sick.
  17. As soon as i lay down flat on my back i can feel my heart beating all over the place, and i can see it also because my stomach is jumping up and down. My cardiologist told me a few years ago, that i should try to sleep in a more upper position. I know that he tells that all his other patients with all kinds of heart and BP probems too. Ever since that day i sleep more in a sitting than in a laying position. I bought myself a special pillow which i put in my bed. I dont remember the last time when i slept flat on my back. I must say, that it does make a difference to me. That way i can honestly
  18. i just made a test and let my right arm hang down for a minute, when i compared both arms afterwards, my right arm was much darker and swollen. I then asked my daughter to do the same thing and her right arm looked also darker and swollen. Then i asked my boyfriend to do the same thing and even though his right arm just hung down for about 30 seconds, when he compared both of them, the right arm was also darker and swollen. I wonder now, if this is just a normal response everybody has because my daughter plus my boyfriend both dont have POTS.
  19. i just looked for one for myself today and found quiet a few on ebay. Have you had a look there yet?
  20. You can buy hand ventilators with an already build in water sprayer. They are not expensive at all, thats why i just bought 10 of them at ones (hopefully they last a while). I have been using them since about 3 years. They a very helpfull.
  21. yes, heat dilates your blood vessels and thats the reason why the BP dropps. Its been very hot here the past couple of days and for the first time in over a year my BP is almost normal (normally my BP is high). I have 3 ventilators around me at work plus a water sprayer, i also have ice pads which i can put in a freezer at work and take them out if needed. I also have a small hand ventilator with a watersprayer build in. I stay indoors all them time and in case i need to go out in the heat, for example after work, i have these ice pads with me. All the best to you, carinara
  22. iam so glad, that i dont have to drive to work by myself anymore due to all the reasons you just mentioned. Iam very lucky because my sister and now even my boyfriend work at the same company and that makes my life so much easier. But i know exactly what your talking about. All the best for you
  23. as soon as i get nervous i experience the same thing. If i know that i have to drive on my own and i dont feel really well, my throut tightenes up, but as soon as lets say, somebody drives me..., it dissapears within a minute. This also happenes when if i get terrified because of whatever reason. I noticed that my breathing isnt right in those moments as well so i try to do the 4 breaths in, for breaths out tactic.
  24. Ok here comes another H1 Blocker question. I started on a H1 Blocker the end of last year because of worsening symptoms due to a expected histamine intollerance. I first started on cyrtec but got bad side effects then i switched over to telfast which i tolerated well. I noticed a relief in symptoms and was qiet happy about it at first.( I have read here before that H1 Blockers seem to help many Pots patients to feel better over all). After a while i noticed that i was getting so very tired all the time. I woke up after a good nights sleep being tired. At work it was a nightmare because the tir
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