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carinara

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About carinara

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    Advanced Member
  • Birthday 04/07/1971

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  • Gender
    Female
  • Location
    Germany

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  1. 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.
  2. 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.
  3. 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
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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:-)
  11. I always clean in slow motion whilest sitting in my office chair with rolls on. I do every chore in the house like this.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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