corina

Ernie,

I'm very sorry for you these things happened. It must be very difficult for you when your own sister behaves like this. I have a sister myself and I'm very lucky cause she's always very sweet to me. But spending your time with the kids is great. I have a 13 and a almost 10 years old and I love seeing them play football or play tennis. Right now I'm learning them to cook and they even like it .

It's great you can drive your car and maybe when you invite the kids again you can use a mobile phone so you could warn someone in case of emergency.

Good luck and don't be to angry with your sister, it's a waste of energy. Talk to her about this or just don't invite her anymore.

Best wishes, Corina

I think this is something very well done in the us. In Holland we have necklaces which are meant to use for things like a rare blood group, asthma etc. There is no phone number to call with all medic alert tags. And there are very few doctors who have ever heard of dysautonomia. My familydoctor had never heard of it, I was lucky to have a cardio who new of the existance. My neuro told me there are just a few people over here who have this but I couldn't find them (I've been trying for more than a year now). I also noticed that in the ER they make fun of people having a higher bp when they are in bed then when they are standing/sitting. They laughed at it saying it must be caused by having exciting dreams. I got so angry hearing this. I think I will talk the alert thing over with my doctors again for this situation makes me feel very insecure. (It's just because I'm doing worse right now that makes me so worried, it's not my "normal"me )

Corina

Hi Katherine

thanks for explaining the SSRI-thing.

Yes, the injury I had deconditoned me as well although I kept on walking for as long as I good and although I couldn't sit properly I COULD stand, if it were necessary for a day. That's why it was so strange it gave me so much trouble after I had surgery. I also started having chestpains when trying to exercise and just sitting up made my heart race. My most prominent symptoms at this moment are difficulty in standing and walking. Waking up not knowing where I am, not knowing what the lights next to me were (which turned out to be my radio alarm ) not knowing how to put it off and seeing things that don't exist (I saw a "film" on my television while I was sure it wasn't on I even went out of bed to check). And those memory things drive me crazy sometimes. But hey, I don't want to complain I still live and it was a very nice day today.

About the C-section: no it's not a common thing overhere. Most women deliver there babies at home without painkillers. Since I had this C-section on my first delivery I had to go over to hospital delivering our second son who came without the C-section or what problem ever. It felt like a present!

Corina

I think wearing a medic alert bracelet would be a good idea but what inscription should it have? Just POTS wouldn't alert anyone. I talked this over with my familydoctor because one night I felt I had very high bp, almost blowing my head off but didn't dare calling a doctor because I was afraid of what they might do (or what they NOT might do). So I kept on trying to stand to lower my bp. My familiydoctor then promised me to make a note, in case one of the other doctors in our area should have to treat me. I really like the bracelets of Laurenshope Nina, since it's almost my birthday I might order one, it's just that inscription...

Corina

Hi Katherine

I've been on a low and very high doses of betablockers. Just the betablockers and combinations with fludrocortisone/florinef, midodrine, methylsomething and now I'm getting off the betablockers I've been taken for 2 and a half years and switch to another. It's a period of trying what works for the best in trying getting me out of my wheelchair. I don't wetter that is possible but we will see. By the way, I had a c-section having my first son as well, what a coincidence don't you think? It didn't give me a lot of trouble at that time though. O, can you explain what SSRI is, since I'm not from the us it sometimes is hard to understand everything and all the words I look up in my dictionary are forgotten in about an hour Thanks for responding anyway

Corina

I'm almost sure (and so is my cardio and family doctor) that my POTS came directly after surgery. In july 2000 we went on family holiday to Hungary and when skating I fell and broke the os coccygis (sorry don't know the english word for it). After a year in which I got about 15 or 16 injections to stop the pain the bone still hurted very much, I couldn't sit and had surgery where they toke it off. DImmediately after srgery I felt very bad was very sick, throwing up, severe headache and problems with bp and heartrate. Lateron, my physicaltherapist send me to our familydoctor who send to the cardio and the whole POTS-thing started. It took them 2 and a half year to discover the POTS (my family doctor had never heard of it). Although I'm trying a lot of different meds right now but I'm still getting worse, since a year in a wheelchair, not able to drive etc. etc. Is anyone else having POTS because of surgery? (I'm sorry for the length of this post). I wonder if I'm ever getting (just a little?) better.

Corina

I like Paiges idea of making bracelets which will make people ask questions. I would love to wear one and inform people in the netherlands about dysautonomia.

By wearing a bracelet you can inform people all over the world. I would give one to my physiotherapist, my doctor and neurologist (wonder if they would wear it ).

Corina

So tere are some lucky moments, just when we need them. Best wishes

Corina

Hi Julie, good luck on this. It's very important to talk about dysautonomia and let EVERYBODY know. I'm trying to get some contacts in the netherlands to let people know dysautonomia exists. At this moment I almost think I'm the only one althoug I'm quite certain there are more people having this. So Julie: best of luck

Corina

Steph, I'm sorry, I think I confused you, I live in the netherlands. But I would really love to meet some of you (as I call: my POTSfriends) because ican't find anyone in the netherlands and Isometimes desperately need someone who understands the way I feel. So although I'm not able to meet anyone in the nearby future I still am VERY glad I found you (my POTSfriends) on this forum.

Hope the ones of you who do meet in Toledo have a very nice time

Corina

Vent as much as you like, but most of all: be proud of yourself (and if you ever do such a thing again: tell everyone about your situation so they can understand)

Corina

Paige,

what I meant to say to you (oh this brain fog) is try to keep up . And as everybody will agree it IS very hard, but I know things will become a little better for you maybe not as in your symptoms but in the little things that surround you.

Corina

Paige,

POTS seems to destroy your life, I do agree, and your defintely not the person anymore you were before. But than again you can become another you, who can't do the things she did before but there still remain things that you can. I started on painting which works very good for me although there are many days that I'm to tired or dizzy to take the stuff I need. I can be a good mother although I don't play tennis, football, go scating etc. I CAN play a game of chess or listen to my childrens stories when they come home from school. Life has become totally different since I cannot drive anymore and I'm in a wheelchair, but still there's another ME and I think this new me seems to be a very strong ladie (in fact I didn't knew here before) and I'm very happy with her. Though it's still a pity she has POTS

Corina

Noise is something that makes me feel very jumpy. And the bad thing is: no one understands!!! Most people think (or say) I'm overreacting and maybe it seems so but I really can't help it. Also the light (brightness I think) is difficult to deal with. It seems like I'm falling or what, I just can't walk right and have to grab everything to go on. So it's that strange POTS again. At times it's very difficult to handle don't you think?

Corina

Just today I was thinking about that too. Maybe because I'm a bit scared of the dentist . I'll go and have a look at the links, thanks Nina. And wareagle, thanks for bringing this up.

Corina

I would really like to meet you, guess Toledo 's just a little ( )too far away for me,

Corina

Thanks for all your information Nina, it was real fun talking about this. I once was educated in tourism so it's nice hearing what people think of their holiday destination. It's my dream (and my husbands) to buy (or rent) ourselves a big camper and travel all over the world (coming to write this down I can imagine places where I would rather NOT be at this moment). For now I'm going to bed, I don't know what time it is where you live, but here in Holland it's 10.10 pm and since it was a very nice warm day my husband and I went for a long walk which I enjoyed very much but (although in my wheelcahir) I got very tired as well So good night,

Corina

Hi Nina,

I've taken another look at your photos and again they're very nice. Especially the Reinfall ones and I also liked the Omisalj (spelling???)beach photos. Seems like the weather was very nice (and hot aswell?). Although most potspatients are very bad with the heat, I'm very bad with the cold (wonder how that's possible) and very much like the heat. In holland it's 26 degrees celsius right now and I'm still wearing two t-shirts and a jeansjacket inside the house.

Anyway I would just love to visit Croatia and since my husband works at KLM we possibly could fly over and rent a car. What's for dinner in Croatia, do they eat lambsmeat ?(we absolutely don't like that). Well, who knows, we maybe go over there some time.

BTW, where in germany is Meersburg (never heard of it). I liked the photos and I really like the old towncenters in Germany except for the pavement that's often unsuitable for wheelchairs. Well, hope you're doing fine,

Corina

Hi Jessica

best wishes for you and your family in Florida. Me and my family visited Florida once (orlando, kissimee where we rented a house with swimmingpool, kennedy space center, daytona beach and a few places more). We liked it very very very very very much (especially the swimmingpool which is not a common thing to have in Holland). Although many POTSpatients have very much trouble with the heat I myself have very much trouble with the cold so maybe we should change places (just a joke, don't think you would like the weather in holland would you?).

Well best wishes and hope you won't feel too bad after your move,

corina

Hi nina

really liked your photos. Croatia is on our list of'countries we would like to visit for some years but we never finally went there. Who knows there are many more years (as we hope). We visited germany many times (mostly because it's so close to Holland) and we always liked being there.

When you were in Europe me and my family we went to England (to visit my father who lives in Cornwall) and as it was our first familyholiday with me in my wheelchair it really was a challenge. Sometimes very difficult and sometimes more easy than I thought it would be but it were 14 familydays which we needed very much. I think we can get used to our situation.

The smart-car you were talking about is a very common car overhere. I actually drove in one (which my husband took home from work) and it is very much fun there is room for only two persons but very nice to drive (and park!!!)in the city.

Hope you are already feeling well after this trip,

corina

hi opus

I have the hand pains as well. Also not diagnosed for anything because it comes and goes. Mostly for a few days in one hand (feels like its swollen and stiff) but after a few days it disappears. Since it disappears all the time I can manage and think it's just one of those weird things. . .

Hope it doesn't give you to much trouble with you being a pianist.

Corina

Jessica

I was on metoprolol 300 once a day (which worked for 24 hours). Since I'm on midodrine I've lowered till 200 mg a day. I don't know why but it works for me. When I stopped the metoprolol for having a TTT I really felt bad and wasn't able to do anything accept be in bed and wait till my test was done. Afterwards I started on metoprolol again and began to feel better.

Since we all react different I wanted to let you know so I think you don't have to worry about it. It's all about how YOU react and feel about it.

Corina

Ernie

I'm really sorry you feel this way, but hey what I great idea. I did some writing myself and though I cried my writingbook all wet (which made it very difficult to write ), it helped me in the end.

What also helped me very much is saying goodby to my-old-self. I made myself a box inwhich I put all the stuff that reminded me to the things I'm sure I can never do again. I put my tennisracket and a ball in it, as well as my rollerskates (with which I'm sure this all started) some pictures of me and my kids running on the beach and all that kind of stuff. When I'm sad or when I just want to, I open the box and take a look at it. Now I can work on my new self, who is totally different from my oldself but just as good and I think I will become even stronger.

Hope this writing of your biography helps you (maybe not just right now but in the end). Wishing you the best,

Corina

1. Corina

2. 40

3. Dx: POTS

4. DX at 40 though my cardio thought of POTS 2 years ago

5. We live in a little village near Amsterdam (Holland)

6. symptoms at worst: tachycardia, bad fatigue, terribly cold, yawning all the time (are there anymore of you who have the yawning, didn't read it so far), difficulty talking (often can't remember the right words) and thinking, nearly fainting, chest pain, diarrrhea/constipation, exercise intolerance. Stopping now getting depressed of all these things!

7. symptoms at best: lightheaded, cold, long enough stand to do the dishes without having to sit several times, well everything mentioned above but a little milder.

8.meds that didn't work: florinef, fludrocortisone, midodrine (so far, maybe it will work if I take a higher dose)

9. things that do work: some exercises to get the pressure up, selokeen (beta blocker) using a high dose makes me feel a little better, drinking and using lots of salt would help but it doesn't make me feel better (jet )

Hi Ann,

welcome around. When I had my tilt table test my heartrate went up from 80 till 180. I felt very bad (as often) but tried very hard not to faint (by using a breathing technigue) which I menaged to do. After the test I directly took my beta blockers and felt a bit better in 10 to 20 minutes. Nowadays I also use midodrine. It doesn't work for now, I think I have to take more but I'm going to see my neuro in 3 weeks. Also important: you have to be very patient in trying new meds because it might take some time before it works. I tried florinef and fludrocortisone as well but they didn't work for me. This could be different for everybody so don't let this discourage you but keep on trying till you get the right medication. Wish you well,

Corina