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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 less salt increases or decreases Aldosteron levels. I also noticed that the Aldosteron was tested just 1 day before and 1 day after my period which might also affect Aldosteron levels.
  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 was said that i might have hyper POTS but it was never confirmed. I was never allowed to have a high salt diet because of my high blood pressure. I have no idea if the elevated Aldosteron has something to do with POTS or not. Reading through some shared material it seems that Aldosteron is low in POTS patients. I hope and pray that i dont also have "Conn Syndrom" because the only cure there is, is the diuretic which my body cant handle. I have not monitored my blood pressure since April because it just stresses me out and there is nothing i can do about it right now anyway (My nephrologist and family doctor adviced me not to meassure my BP). Thank you all for your help.
  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 possible. But through the Grace of God it happened. All my life my blood pressure was on the higher side (when i stand up it often drops 50 points) anyway, due to Pots i didnt agree with any blood pressure medication and so we stopped them years ago (exept 1 Betablocker which i have been taking for many years now). As soon as i was off the blood pressure medication, my health slowly improved over the years. Then at the beginning of this year after my health has been so good. My doctor and i decited to try out some blood pressure treatment again to lower my blood pressure. I felt so good and up to it, that i agreed. I was sent to a nephrologist who did some more blood work and he found out, that my Aldosteron was too high and my pottasium too low (even though i had been taking in extra pottasium daily). Anyway, he suspected that it could be Conn Syndrom (Hyperaldosteronism) and so (in order to lower the Aldosteron) he subscribed me a medication called Spironolacton. I usually never try out medication because i often have paradox reactions and a lot of severe side effects but since i felt so good and i knew that my blood pressure was too high i honestly thought that i could handle it and so i started with a little tiny dosis of Spironolacton. To cut the long story short after a few days all my "long forgotten" worsed Pots symptoms appeared. I thought i would die, i had extreme "fits" blood pressure Spikes up to 250/150, shakes, couldnt breath, extreme dizziness and so on... I could not stand up at all anymore. I stopped taking Spirolacton after a few weeks (back in April) and even today iam not back to my old "good" normal. I still cant stand up, i still have severe symptoms every day. The Pots specialist i saw years ago (i live in Germany) is not available anymore. My nephrologist keeps testing my Aldesteron which is still elevated and the only medication which can lower the Aldosteron is the medication i cant tolerate. Does anyone here know about a connection between Pots and elevated Aldosteron levels ? I dont think that the elevated Aldosteron comes from a kidney Problem. Even my nephrologist doesnt think that (kidney MRI was perfect). My blood work could point towards Conn Syndrom but as i said both my nephrologist and myself dont think that's the case. Has anybody ever heard about a connection between Pots and Aldosteron? Are Renin and Aldosteron activated by standing up? Maybe my high number is the result of that? With a high Aldosteron patients are also adviced to reduce salt intake drastically (opposite to Pots). I have already reduced my salt intake which makes Pots worse... I have no doctor now who can bring these 2 cases together (Pots and elevated Aldosteron). My nephrologist can only look at the kidney stuff without taking Pots into Account. He could order some more Tests (in which i would have to take medication which i dont tolerate). I hope and pray that there is some kind of explanation why Aldosteron could be high in Pots patients. In all these past years even decades no doctor ever told me that my Aldosteron was elevated.... Iam so afraid that if we just treat the elevated Aldosteron now (with those medications my body doesnt agree with) i will be back to how i was when i tried out the medication a few months ago. This is not possible. I can not have my family to go through this again.... (every day we were so close to call the ambulance, something was really off). Thank you all for your input. PS: iam now 49 years old, maybe menopause (hormons) can also activate Pots and/or Aldosteron?
  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 relate? Any ideas why this happens? Thanks a lot Carina
  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. I took a calcium channel blocker for the past 7 years and allways felt similar to how i feel when i eat carbs. I stopped taking it last year and i can surely say that i feel better without it. When i got diagnosed a few years ago my POTS doctor also confirmed to not eat carbs as they dilate blood vessels.
  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 where i was laying down in the back and then carried me into the hospital. I felt so sick, i couldnt even use the toilet on my own. Well, i saw very good doctors and trusted them 100%. The only problem was that they didnt know POTS and therefore treated me in a similar way with another calcium channel blocker which caused me to have the worsed POTS attack ever where i thought i was going to die. Well after that they decited to give me just a tiny dose of another calcium channel blocker amongst some other medicines like Beta Blocker. I have been taking these tablets since 2004. Over the years and especially when i got diagnosed in 2007 ( I had bad POTS symptoms ever since 1998 and ran from doctor to doctor without getting help), i learned that i CANT tolerate anything that dilates blood vessels because i react immideately. I searched and found out that the calcium channel blocker also dilates the blood vessels. But due to my high blood pressure and the very tiny amount of calcium channel blocker i have been taking since 2004, all of my doctors told me to keep taking them. Well, i went to a real rough period again which started in september 2009 and lasted for 1 year where all my symptoms flared again big time. It was a great challenge to somehow keep them kind of at bay because all my coping methods seemed to not help anymore. Once again i wondered about maybe stopping the calcium channel blocker and after contacting my POTs doctor (which i have found in 2008) i just stoped the calcium channel blocker and guess what, i felt better straight away. I mean i still have symptoms but the extreme severity is gone. I now know for sure that even this very tiny dose dilates my blood vessels that much, that i get bad symptoms. Another positive effect after stopping them is, that i dont have to urinate as much. With the channel blockers i had to use the toilet about every 45 minutes. Without them i can go 3 or 4 hours without. So Calcium channel blockers are a big NO GO for me. Because like i said, they do dilate the blood vessels.
  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 secret hiding place at work in case i need to lay down for a little while. A while ago, i decited to condition myself to the point where i try to see my office like my living room at home which means that if i get sick, i dont want to run away anymore i just want to stay there and lay down and wait until its better again.
  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 my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. Having this illness tought me to be thankfull for the little things in life. I get excited about silly little things now, now i appreciate situations that before i wasnt even aware of. I try to learn as much as i can out of suffering with POTS, just as if i was researching this illness in every subject to learn and help other people with my experience. I believe this illness was given to me to teach me many things. Iam looking forward to the future and wonder if my destiny is to be healed. When and if i become healed, i will use this experience to help others who are struggling through illness. My way of dealing with POTS didnt just happen over night either. It took many years of not knowing what was wrong with me, fighting it, and all the rest of it. Learning Is always a process. Its important to let all your feelings out, its ok to cry to even scream thats all part of dealing with this. I wish you all the best and please try to find the blessings in your current situation. A big hug from carinara BTW: the teachings of Eckhart Tolle, Byron Katie, Louise Hay and more...helped me a lot:-)
  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. My higher BP was allways one of my concerns and i talked to many many different doctors and specialists about it. And they all reasured me, that my BP numbers are not dangerous because symphatetic overactivitiy is the cause of it. Its important that the numbers come down in during the night because thats a sign that the reason for high BP is not severe. For the BP to be dangerous, the numbers must stay high all the time including during the night. I also went to 2 rehabs were they told me the same thing, the nurses and doctors even meassured their own BP in during activity and stress and showed me (because i was so scared about my numbers) and they had similar numbers. Then they also told me that i should never ever meassure my BP in during stress because Stress can cause an enourmos increase in BP. People with panic attacks for example can reach also numbers like 200/120. Weightlifters can get even numbers from 320/200 or higher. I just wanted to post this because i know how scared one can get if the numbers are high. But as long as the numbers dont stay up there ALL THE TIME and you got checked through without finding an "organic" reason. You are ok.
  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 say, i get less tachy and i can feel my heartbeat less. Like i said, i never lay flat on my back anymore.
  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 tiredness made my pots symptoms much much worse. I never experienced something like that before so i decited to try to come off the H1 blocker about 3 weeks ago. At first i felt an improvement. Even at work i noticed that this extreme tiredness is gone and was very happy about the extra energy i got back. Now 3 weeks later i start to feel so tired again + i feel as if i am getting a cold since a few days. My face gets hot so that i think i get a temperature and my throat hurts a little, sometimes i also need to cough but the cold (if it really is one) doesnt seem to break out... (i also have to ad, that i have had much emotional stress in the past 2 weeks due to a accident my mum had). I ask myself now, if the tiredness + the cold like symptoms are due to stopping the H1 blocker or not? I know that H1 blockers help if you have something like MCAD going on as well and who knows what is happening in my body... Is it possible to take a H1 blocker only twice a week instead of every day? Because if its true that an H1 blocker helps my overall symptoms at first but then makes them all very worse because of the extreme tiredness what can i do then? When i stop them i feel better first but then after 1 week i feel worse again? Any ideas? Should i wait and see if its really a cold that i have got that doesnt seem to come out since 6 days or should i try to take another H1 blocker maybe 2 a week (not every day anymore because they totally wipe me out).thanks for your help. carinara
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