corina

I was on midodrine a few months ago but stopped because it is way too expensive. It didn't work in getting me out of my wheelchair so my neuro wanted me to try a few others things first. Being on midodrine made me feel a little better. Didn't make me walk any longer but helped a lot with dizziness etc. and raising bp. When I have tried everything that's on my neuro's list and nothing makes me feel better I might go back to midodrine and try to buy it abroad (when that's allowed and cheaper ofcourse).

Good luck on your decision.

Corina

Mary,

I found your post very touching especially where you gave credit to all our families and friends because that's my daily struggle. In taking good care of me they (my husband and two very very sweet boys) sometimes have to do things they don't want to do at that moment or things they wouldn't want to do at all. Still they take very good care of me. I know sometimes that's very hard for them and that makes it so hard for me to ask, because I really would do all those things for them. I try to make it up in giving them extra attention in playing a game or just in talking or being there for them. So it made me glad you thought of this and knowing we are not alone helps (in fact I don't understand that, beause I really don't want others to have the problems we have!).

Hope you understand what I'm trying to say, brain fog doesn't make my life easier these days .

Corina

Hi Hayley,

I don't have the muscle spasms (just sometimes when I'm in bed) but not very often. But I do have very much problems with balance and memory loss. I did have the memory loss a few years ago but think that was from all the stress I had finding out what was wrong with me. When I was diagnosed I calmed down and the memory loss became better. Nowadays (since the last three or four months) I have again a lot off memory loss (mostly short term) but I also seem to loose things I should have known. At least that's what my husband says, I really don't know it myself. It worries me very very much. My familydoctor asked my neuro to do a neuropsychological test and that's what I'm waiting for right now. Since I'm doing worse with other symptoms as well it sometimes really scares me!. To try and make things better I do concentrationgames and memorygames at the computer. The things you try to make this crazy POTS become better ey!

Corina

Hi Nina,

hope you're feeling a little better. Can't figure of anything to cheer you up so just stick to wishing you the best!

Corina

Hi rqt9191,

I really can understand how you feel in trying all those meds. It's what I acually do since march this year. So far I tried (next to selokeen, my favourite beta blocker), fludrocortisone, midrodine, methylfenidaat, labetalol (beta blocker which should have replace the selokeen) and now I'm on clonidine. Some of these meds ( and I think I'm forgetting a few) really made me crash and that's the point where I thought to stop this process because I ended in bed and that's not the place I want to be . Anyway I decided to go on ( same as you I really want to be as close to normal as I can) and finish the list. There are not many meds left (according to my neuro) but SSRI's and Mestinon are on it. I think some of us have tried the Mestinon yet, I think I remember a post about it (somewhere in my mind not sure though). I think it's up to the moment and your feelings about continuing this trying new meds. What I do is take a break off it when I need (when I'm very much needed at home like when my husband had kneesurgery and couldn't walk for a while) but now I started it again because I just can't sit in my wheelchair thinking there would be anything left which I didn't try and which could give me my life back. Wish you well and maybe you could let us know if you try the Mestinon and what you think of it.

Corina

Wow Vickie, what a day you had. Hope you're feeling well right now and wish you a very good recovery.

Corina

Julie,

is there a specific reason why they should weigh you when finding a new doctor? I don't understand the connection between your weight and having a new doctor. Maybe I get this wrong (please tell me, if so) but I didn't think your weight has anything to do with this. You see your new doctor in helping and understanding you with your dysautonomia. In my opinion, your weight is your own business (unless it might be very unhealthy for you?). I can understand your doubts about being treated as having psychological problems, that's where we all have been I think. So, yeah I wanna place a bet and choose the psychological problems . Best of luck, and let us now!

Corina

This really is great. Now you brought this up I must say I'm very excited about the bracelets, how are you doing on this Nina? (I really don't mean to push anyone, just curious),

Corina

When people tell me wow, you look good, I answer them that's the least I can do for myself. It makes them think (and hopefully think before they talk). Nowadays I take it as a compliment (because it could be meant that way). I used to feel embarrased and thought that since I'm in a wheelchair I'm not allowed to look good, that's nonsense ofcourse (I know now).

Wish you luck with making yourselves look good!

Corina

Katherine and emily, thanks very much for your kind words, it made me smile and that's just what I needed today. Katherine I think you're right that there must be more POTSpatients over here but simply not diagnosed. I'm still trying to find them anyway and try to make people aware of dysautonomia. That's why I look forward to buying some of the new coming bracelets so I can give them to people and spread the word (feel like a priest now ).

Emily I'm with you in this connected feeling that the internet and this forum gives us. Hope you're all doing fine today,

Corina

Hi Susan,

I'm sorry you are going through all this. I really can't understand why doctors react this way. Everybody can understand your fainting isn't a mental problem, you wouldn't hurt yourself this way it's just something that happens. I think you shouldn't doubt dr Grubbs diagnosis but hold on to that and find yourself a new cardio (if you think you need one). I'm seeing my neuro every 4 weeks at the moment and my cardio only twice a year since my hr is under control by using betablockers. Maybe you can ask dr Grubbs office if they now a cardio who is known with dysautonomia in your neighbourhood. Don't let your present cardio treat you like this, just try and find some doctor who cares. Wish you all the best.

Corina

Katherine,

thank you very much for giving me that link, I think it's very sweet of you. I thought of ziekenhuis.nl but didn't know they had a dictionary. This helped me a lot. It's very funny to see you write some dutch here. I went to see my neuro yesterday and he told me there are about three or at the most five doctors in the netherlands who are familiar with dysautonomia (most of them do research). I'm his only dysautonomia patient and possibly the only one in my country. In a way it made me very sad, cause noone really knows what it's like and it's difficult to explain but it made me feel very glad to have found all of you. I think that's very special, you all mean a lot to me. Sorry this is all off topic. Just wanted to let you know.

Corina

Hi Shanna,

although I know a lot of people don't understand POTS (I often don't understand it myself ) you should expect your doctor to help you. This is why he's a doctor. I agree with Steph to go talk this out or find yourself someone who cares and at least someone who gives it a try. You deserve it. Sorry if I sound a little angry but that's just what your story makes me feel and I am very sorry you had to go through this. Hope you'll get things settled with your doctor or find yourself a better one. All the best,

Corina

Opus,

I'm very sorry to hear all this, but I'm glad you and your family didn't get hurt or anything although it must be terrible to see what this hurricane did to your house and neighbourhood. Hope you and your family are feeling alright and wish you the best with "redecorating"your house.

Corina

Hi all,

I'm sorry to ask, but what are electrolytes and potassium? I tried to find in my dictionary but it doesn't include a lot of medical terms. Maybe I should buy a more expensive one to keep up with this . I thought my english was reasonably but I sometimes think: what on earth are they talking about! My brain fog doesn't help with this either. I checked my dictionary for nausea a dozen times but still can't remember what it means. Hope you don't mind explaining the electrolytes and potassium stuff, thanks in advance,

Corina

Hi Ling

When I had surgery, in july 2001 (that's when POTS attacked me) I lost very very much hair. I was in bed for a really long time and my bed was full of all the hair I lost (long and dark so you couldn't miss it ). I tried some tablets (alternative method of treatment) that didn't work but gave me the feeling I tried to stop it. After about 6 months my hairdresser told me I had a lot of new hair coming up so the worst was over. I still am not sure what caused this hairloss. Sounds like it could have something to do with the POTS???

Corina

Hi April,

congratulations. You must be very excited. This is really wonderful news. How are you feeling?

Corina

Hi Ernie,

I think it's not a matter of wasting money on whoever. And DON't let anyone make you feel that way. You deserve to know what's going on with you and must be glad there is a possibility (and it's paid as well ). In my opinion it's more a question whether your up to it, since all those tests can make you feel exhausted (as well physically as mentally). So if you think you can handle it GO FOR IT, who knows what it'll bring you! And don't think they're wasting money on you because you definately deserve it. Wish you all the best

Corina

Try to laugh Hayley, although it's very ironic how people turn out to be nice when they find out there is really something going on. How are you doing with the collarbone? Best wishes,

Corina

Coming to think of it, the working with the children is very nice. I think you've got a perfect combination in your work. But how can you manage all of this with having POTS (and the other stuff you have)? I've stopped working for more then a year now but I REALLY want to go back and maybe some day. . . you never now, don't you think. Oh and Nina, were you the one who once was in Holland at Papendal? Sorry to ask but I keep on forgetting so many things

Corina

Wow Nina. that sounds interesting, although I personally would like the researching more than the teaching.

Wish you the best on this; BTW is your migraine any better?

Corina

Nina

I'm sorry to ask but what is Ph.D. internship?

Hope my question doesn't make your migraine worse

Corina

Hi Nina,

I don't have any advice for you but really hope some kind words will help. Hope you'll be feeling better tomorrow (or sooner). Wish you the best,

Corina

Oh and Jessica, I really like that Gandhi-thing (can't figure out the right word for it I'm sorry).

Jessica,

I'm very happy for you things are working out this way. I think you have to enjoy this time as much as you can and you should go for it (although you shouldn't overdo) but I think it's very important to feel succesful in your work as much as it is to enjoy being a mother and maybe even get a social life again . Try not to worry too much and yes when things would get worse (which doesn't necessarily has to happen) you will feel awful but hey your life is NOW and you just have to enjoy it and do the things YOU want to. Hope you understand what I'm trying to say it's just that brain fog that keeps me from putting every word in the right place. Wish you all the best Jessica,

Corina