corina

Hi Opus,

really hope Ivan doesn't hit you (or anyone else) too hard. Even in the netherlands we follow the news to see what all those hurricanes do in the US. I was in Florida with my family 9 years ago and we saw the routes that are planned when you people need to evacuate. It's something we really don't have (and certainly don't need) overhere. Wish you and your family all the best and will keep my fingers crossed.

Corina

Hi veryblue,

waking up isn't always easy. I've had times that I didn't know where I was, what day it was whether I should wake the children to go to school or let them slepp because it might be sunday. It's very scaring. There also was a time my alarmclock woke me and I didn't know how it worked anymore so I sat and looked at it becoming very desperate why I couldn't turn it off and all that noise!!! I finally accept these things happen to me although I will have a psychological/neurological test in october because my shorttime memory is getting worse as well. I try to live with me and my POTSy body. I know you can do that too. Try to accept things are very different from how it was (I know it's not easy). Oh and BTW my first two TTT's didn't show POTS, I was very close (as my neuro said) but no. When I got worse again last february POTS was very very obvious so maybe you should have another TTT in a while. Wish you best of luck,

Corina

Hi Danelle,

I don't think I can do anything to help you, just let you now I'm very sorry you're having such a hard time. Try to be strong I think you can manage because you're a fighter. I can imagine you don't want to think you might be using a wheelchair, I didn't want to either and I felt very ashamed and a complete failure. Nowadays my wheelchair is one of my best friends: it takes me everywhere I want and I'm proud of myself sitting in it. I know you can do that too when it comes to this. Wish you all the best

Corina

Congratulations, I'm very happy for you. When I got my disability I didn't know what to do: be happy or cry. What I do know is that it certainly makes life a little easier and you deserve it!!!

Corina

Hi,

I also have the sleeping problems you describe. And as apposed to a lot of other POTSpeople who can't stand the heat I get very bad in the cold. I'm feeling better when it's about 25 degrees Celsius. When the temperature is lower I become very cold (feels like a stone or maybe even as a dead body I'm very sorry to say it like this but this is how it feels to me) and symptomatic. It's like MomtoGiuliana says like your body can't control your temperature. I take a hot bath almost every day and make that comfortable by using all kinds of nice perfumes. After that I go in bed for about two hours to sleep. It's because I can't sleep when I'm that cold. Maybe this helps you as well. Good luck on your test and trip.

Corina

Katherine,

I'on metoprolol for 3 years now and I'm on a very high dose, 250 mg/d. I started 3 years ago with 50 and builded up to 350 that's where my hr went too slow during the nights (doesn't kill you but feels uncomfortable). I turned it down to 200 and took midodrine and other meds to raise bp. Tried to lower down the metoprolol as well but for some reason (no one understands in fact) I'm doing "better" on the higher dose metoprolol. Everyone is different as we all know!

I have to go try a new BB which didn't work out the first time but I took a little time off to become stronger (mentally as well as fysically). I'm seeing my neuro in two weeks now and will ask him about the BB in combination with the SSRI's (didn't try that one so far ).

Corina

Hi Ernie,

I'm glad to hear such great news from you. I think this is just what you needed. It must make you feel very strong to have found this new doctor. Congratulations!!!

Im'also glad you had such a nice day at Niagra Falls. Since having POTS I noticed that I enjoy the things I do much much more. In March I went to the Van Goh museum in Amsterdam (this was something I always wanted to do) and even it sometimes was hard to watch the paintings because I was in my wheelchair, I enjoyed it so much that I can even feel it half a year later! It's great to have people around you who will take you out to do these things!

Corina

Stacey,

happy birthday to you. I think birthdays make you sad. I turned 41 yesterday and had exactly the same thoughts as you: how is it possible all those years are gone just by hoping you'll turn better and it doesn't happen. I didn't celebrate my birthday because my husband has had a knee surgery and can't walk very well right now but we had a nice quiet day with the kids. I had breakfast on bed and in the evening we ordered food so nobody had to cook. My mother came by for a short visit just before she had to go to work. Well it turned out to be a nice day.

Wish you a nice day as well and hope you don't feel too sad although I definately understand you. Many birthday hugs,

Corina

Hi Veryblue

the way you described it I think your BP is perfectly normal (but notice I'm not a dcotor). For reaching the brains your BP HAS to go up when you're standing. In my case (and a lot of other POTSpeople I think) my bp is just the other way around: about 120/80 supine (and higher sometimes) and dropping when I'm standing up. But we're all different, I really don't know what's "normal" for POTS . I don't know how often you do BP readings. When necessary (in trying new meds and in case of possible danger) my familydoctor comes once a week to do a BP reading. I once bought a BPreader (I'm sorry really don't know the english word for it at this moment, hope you understand) myself that didn't give the right readings. I've thrown it away and don't want to use it anymore. You DO feel when you're BP is a problem so at that point you can warn a doctor otherwise this readings will drive me crazy. Hope you understood what I was trying to say (it's just that brain fog again)

Corina

Hi Katherine

I'm sorry to ask, but what is Hashimoto's? I voted to only ( ) have POTS.

Corina

Hi Ling

this is a very heavy subject you started. I can't give you any advise just something to think over. POTS hit me when my youngest child was 5. I felt it very hard not to be able to do the things with him I did with our oldest son. I couldn't play outside with him, I couldn't take him to a movie, I couldn't watch him play football or tennis anymore (untill I got my wheelchair and someone to ride me), I coul'dn't teach him to ride his bike and so on and so on. I felt very very guilty about that and cried many many many tears. At the same time there are always things left like listening to his schoolstories, play chess, help him to do homework, watch a movie on tv together etc. I think we're blessed to have two healthy and very helpful children but I know there was a time I really was glad he was old enough to take a shower on his own, to go to school on his own and things like that. At that time I thought I could never handle a little one (meaning a baby) anymore. BUT: I know that when you have some people around you to help with the bay or take the baby for a walk or something like that it COULD be possible. I think it's something you have to talk and think about very seriously. Don't mean to scare you off, don't mean to tell you it's a piece of cake. Whatever decision you take, when it's wellconsidered it's the right decision. Whish you lots of wisdom.

Corina

Hi Ernie,

good luck on getting the results of your tests. Hope it works out fine for you (if possible!)

Corina

Gayla,

I think I'm too late, but wishing you al the best

Corina

Hi Sue,

I wish this didn't happen to you. Since I don't pray I'll send you a lot of hugs and wish you all the best.

Corina

Nina,

I'm very excited about this bracelet and just this morning I was wondering about something like the infocard you mentioned. I think this is very important because there are days I can't remember my own name . So to you and the others who work on this project: a very big compliment for doing this!!!

This bracelet for me will not only be an explanation to others to let them know dysautonomia exists but it also gives me a feeling of being part of our POTSgroup.

Corina

Hi Lorrell,

you're talking my thing!!! I'm on physical therapy for over three years now. My physical therapist didn't know of POTS at first (like almost everyone overhere) but when I found this site I made copies of all the DINET-information which she read. After that we made a program of exercises which I tried . I made a scheme inwhich I described the exercise, time I needed to do this exercise, time I needed to rest and a mark which said how I felt before that exercise and afterwards. In this scheme I had a wide amount of exercises but after half a year I had three exercises left I was able to do in an hour, using all the muscles that are important to me without feeling too exhausted. It sometimes made me feel very sad when I could do less and had to leave out another exercise but in the end I felt satisfied with what I was doing. Every week I talked my scheme over with my physical therapist and she encouraged me very much. I love her for doing that because it really made me feel better and determined to go on.

For a few weeks now I'm not able to practice any more but my physical therapist came over to my house and learned me a few exercises to do in bed or to do when I'm up for a while. I'm strongly convinced that exercising is one the main things in (even a little) getting better so I hold on to this as much as I can. If I can help you in describing exercises for you or to give you an example of the scheme I made you're very welcome to email me.

Corina

I bought a wrist cuff as well. It was an AFK BDM-1. Didn't match with my doctors cuff at all. Waste of money though. My doctor told me upper arm cuffs are the best (and the most expensive). If you buy one, you better check it with your doctor's.

Corina

Hi wareagle,

I know it's very difficult to try new meds, because you don't know what they might do to you. Since march this year I''ve tried several meds in finding out what helps me best. I found that very scary too BUT I think you have to give it a try. After things got out of hand in taking too much fludrocortisone in just a short time (which my neuro advised me) I started off with just very low doses. That's what I do with every new med I'm trying. Two weeks ago it went wrong again in starting new betablockers and it made me feel very depressed but I had to try it because when I don't try all I can do is just be in bed with my kids making me breakfast, not able to take a shower and definately not go outside (not even by wheelchair) and there are so many nice things in life. There is a chance for you as well. And although I really understand your fear, I do advise you to give it a try and start your meds and start as low as YOU feel you can handle. Hope to have helped you a little (as others helped me out), wish you all the best and let us know how you're doing.

Corina

Thanks for your suggestions. I think I'm doing a bit better today. I could take a shower this morning and get dressed without falling apart so that's very good. You're right about the patience-thing you mentioned Nina. I'm patient whith anyone around and even with myself most of the times. Although I'm very slow I'm proud of the things I do in my own slow tempo (at least nowadays).

Cathy, thanks for your kind words. I know your right about taking one day at a time, I think that's the only way to survive the really bad days. I will see my neuro in a few weeks and I will definately talk the SSRI's over. Thanks again for the suggestions.

Maybe I can ask someone to take me out today. I would like to go to the library (like to read Jane Smiley's One thousand acres) or if no one can make it I could go painting. I like to paint in water colours (maybe I should give it some tears for the special effects, it might work both ways )

Thank you all for helping me out

Corina

Thanks for all your replies. You know it's not just the yawning but it's the awful feeling I get when the yawning starts. I know then to stop my "activities" because it's getting out of hand, but it sometimes starts even when I go walk to my kitchen (which is for about 5 to 7 meters). I think the thing that scared me was when I saw this as one of the symptoms of MSA. Since I'm getting worse all the time (and that's going on for 4 years now) I don't know what to do anymore. The changing of meds my neuro wants me to (and I know he only wants to help me) is too much at this moment as well because everything I tried so far didn't work or didn't work enough. I didn't try the SSRI's yet as I read in a few posts (i think my neuro doesn't know this could be a help) so maybe this is the right moment to talk this over. What also bothers me very much is to not be able to help people. Like my sister (who I love very, very much and who's always there to help me). She's moving to her new house and I can't help her pack or even write her removalcarts. My mother in law was in hospital and now needs lots of help but all I can do is call her and ask how she's doing. My husband is going in hospital this week to have knee-surgery and we don't know howlong his recovery will take. All these things are frustrating me very much. Again I didn't mean to bother you with my problems but I think you're the only ones who really understand the things we're all going through. And knowing that and your replies are helping me VERY VERY VERY much.

Corina

Well, here I am. Always thinking I'm strong and very positive I found out that you can't be positive all the time. My neuro prescribed me new meds (in getting me out of my wheelchair) and that's where it went wrong. I've been in bed for a week (which is very good for your muscles ) struggled out of it again and just feeling terrible. Got back to my old meds because I have to get up since my husband is having a knee surgery this week. There has to be someone for the kids as well! Don't like to go out (my physical therapist asked me to take me out but I didn't think she had enough time), I think I'm feeling very depressed. There are so many questions and I don't think my neuro can answer them. In fact I'm afraid he isn't the best in dysautonomia but whereelse should I go? Last time I saw him he said he really liked my wheelchair because it's very light. So I answered: yeah I'm very lucky! I know he didn't mean to upset me but since I'm getting worse every month there are times I can't take it anymore and I feel there is no one to talk to except for my physical therapist (who I really love for everything she does for me) and the people on this forum. Oh there is one question I would really like to ask: one of my most striking symptoms is the terrible yawning. I haven't seen anyone mentioning this. The only time I came across this was when reading about MSA. Is this a common POTS-thing as well? My neuro couldn't answer this one. I'm really sorry to have bothered you

Corina

Hi Paige,

my neuro described an anti-narcolepsy med as well, called methylfenidaat HCI. This worked very well in not falling asleep during the day (which I do for about two to three times a day for about 15 to 20 minutes) but didn't work for raising bp (what was his reason to describe this med). Because it didn't work for raising bp I got off it and immediately went back to falling asleep during the day. Since I don't work or drive anymore I just let it happen, it makes me feel better for a while when I wake up. I understand that this is not something to do when you have a little one around so maybe you should ask your doctor about it.

Best wishes,

Corina

Hi Ernie

I'm very gld they've taken good care of you. So there are caring doctors and nurses. Hope you're feeling better right now after your trip.

Corina

Hi Katherine

here in holland giving birth and being pregnant is definately not a medical condition. We are all very healthy (at least most of us ) and are not treated like we're ill. As we call it in Holland, pregnancy is a healthy disease meaning: don't bother you're just pregnant. Most women give birth at home which is very intimate because most of the time your own familydoctor is with you and a nurse. They and your husband help you through it. I think it's a very nice way to give birth to a child.

Regarding the POTS, the injury I had was a broken coccyx (I finally found the right word for it) which didn't heal enough and had to be taken off.

About this attitude, yes I think most of the times I'm very possitive I won't let it get me but sometimes it's very hard and now since I'm switching the meds I get much worse but I hope tomorrows better when I'm starting on the new ones .

And what helps me most is talking about it with people who understand, that's why I'm so glad to have found this forum because I can't find anyone in holland who knows of dysautonomia to talk to (except for my doctors). So Katherine, thanks for talking

Corina

Ernie,

I don't think I can help you with this. Here in Holland they don't inject you when you don't faint. The only thing I would advise for the driving home trip is to lie down in the back of the car if that's possible or otherwise to stay over a night but you might have thought of that yourself. However I wish you the best on your TTT,

Corina