corina

merril,

you are so right about using beta blockers and a medecine like midodrine. I'm trying to lower the beta blocker (from 300 I'm down to 200 a day). I know that's very high but for some reason I just can't function without the beta blocker. That's where we all react differently I think. But let's keep smiling and fight

Hayley, do you watch Wimbledon as well or isn't tennis YOUR sport? It was mine but I now like watching as well. (I wasn't that good either )

Corina

Hi pamyla,

my cardio advised me to drink three cups of beef tea a day. That is what you make of beef cubes (I use beef powder) so you can make it as salt as you want (or as you can take). I don't know whether this is someting you drink or make in the US but overhere it's common.

I really like your idea of high sodium recipes, this could give some new ideas in cooking . Maybe I can send you a salty dutch recipe, I'll check my cookbook later!! Oh wanted to ask you what gatorade is. I tried to look up in my dictionary but couldn't find it.

Corina

Hayley,

isn't it possible for you to get seated or ly down before you faint? That does work for me. The possibility of fainting is one of the things of POTS that stopped me from working and keeps me in the house or go out by wheelchair. It must be awful for you to deal with this. Since you have been diagnosed two months ago didn't your doctor prescribe you any medicines? I'm on midodrine (to keep the bp up) and betablockers (to keep the heartrate low) and further on I rest a lot during the day (thats not too bad, now I can watch Wimbledon every day ) and when someone has some time left they take me out (using my wheelchair).

Did I understand you live in England? You're the first european POTSy I meet (I live in Holland and my neurologist told me there are just a few potspatients in Holland so I was very glad to find this forum. The people are very nice and supportive here and there is very much understanding since we all share the same crazy POTS). Love from Holland,

Corina

Thanks for telling me Nina, by the way, what's that mouse-thing I see reading your posts??? It tells me which provider I'm on and several other things.

Corina

Hurray, after trying for half a year I finally get paid for my tabouret on wheels!!! When I was at my physio's I saw her tabouret on wheels which could be lifted. I asked her if I could borrow it for a few days because I thought that could help me a lot. I used it for preparing the meals, cooking, doing the dishes and even tried to vacuum and it turned out to be just the thing for me. So my doctor and physio wrote my health-insurance explaining why I really need such an expensive tabouret (EURO 300,=) and after a struggle for half a year I finally get paid for it. So in a few days someone's coming over to take measures and I will be able to get one. For me this really makes a difference and maybe it could help some of you as well. Since my husband's not always at home tin the evening to cook for us I now can do it myself. I really am very very very glad.

Corina

Danelle,

I'm on midrodine as well. I started slow having 3 tablets a day of 2,5 milligramme. The first time I felt tingling all over my head and body where I touched myself. It was a bit scary but it doesn't hurt or doesn't make me feel sick or something. Since I'm building the medicine up (is this good english?) I still feel this tingles but it becomes mild. I also feel what I call "cold sensations" but it's not too bad. I'm on 3 tablets of 5 milligramme right now and my body still handles this. It's just a pity that it doesn't work yet but who knows, I keep on trying. My neuro said this midodrine can be build up till 30 milligramme a day. I hope it will work for you and that you don't feel too bad!

Best wishes,

Corina

Goldicedance,

I don't know anything of an article on exercises bydutch researchers. I do have a terrific physical therapist which whom I've made a long list of exercises which we tried to do. Of all that exercises there are 3 left which I'm able to do in their gym. It takes me one hour to do them but I use all the muscles that are important to me. So three times a week I go over there by (motorized) bike and exercise. It's nice for me to go there because I 'm out of the house (i'm not able to work anymore) and see some people. My therapist also told me about crossing your legs and it defintely works on me. (I used it today when I was at my therapists and couldn't walk all the way to her room which was about 15 meters!!!).

As well as the exercises I'm on betablockers (selokeen in a very high dose but it works on me) and midodrine (i'm still trying to get the right dose it doesn't work on me right now).

It really is nice to have friends all over the world!!!

Thank you very much for giving me such a warm welcome. I really would like to talk to all of you but I've got this mixed up feeling: I'm glad to have found so many (for dutch measures) people having the same medical trouble I have but I'm sad we all have to deal with this. Anyway, Ernie I don't know anyone from Canada so it's very nice meeting you too. And mightymouse it's true we do learn english at the age of 8. My children (9 and 13) can talk and read english a bit and it helps them in playing computergames.

Susan I feel dizzy and fogheaded as well. It scared me terribly when I woke up one morning and didn't know where I was, what day it was or what I was doing. After 30 minutes I came back to earth and thought I couldn't be normal being like this. I read in your posts that some of you have this as well and it reassured me I'm not the only one (although I'm very sorry for everyone who has this).

Corina

Since I'm new on this forum I just wanted to say hi to all of you. I'm from Holland and diagnosed with POTS for about 4 months, although my cardio thought of POTS 2 years ago. My neurologist told me there are just a few POTSpatients in Holland so I was very glad to have found all of you and I've been reading your posts for a couple of weeks and already learned much more about this crazy thing called POTS. I hope you're all doing well and that my english is good enough to talk to you. Love from Holland, Corina