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Hi everyone


Sue
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Hi everyone!!

I am trying to do some research on the different drug therapys there are for NeuroCardiogenic Syncope before my appointment with Dr. Grubb on Thursday.

He currently has me on 40mg of celexa, .01 florinef twice a day and my premarin.

This still isn't working for me, I keep praying when I wake up this is going to subside but not happening yet. Today I spent the entire day sleeping on the couch as my poor friend sat there (my husband will not leave me alone right now, someone has to be here all the time, while he is working), so he has my friends and family on a rotation roster :) thank god they are willing, I am still kind of afraid to be alone right now.

So basically what I want to know is if you have NCS please let me know what you are on and how you felt before hand and how it is helping your symptoms. When I was first diagnosed I was on Lopressor, for approximately 6 1/2 years. then I bottomed out like now. Then I went to Celexa and again it is apx. 7 years and I am bottomed out again. So I am sure there are alot of meds I have not tried and I want to have my own plan of attack when I visit Dr. Grubb.

I also am doing the gatorade and high sodium. Is anyone doing anything else beneficial.

I did rec'd thigh high compression stockings in the hospital, but have not put them on yet. They are horrifying to look at and remind me of something my grandmother would wear :)

Thanks again for all your help, you guys are like my invisable family of support!!!

Sue

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Hi Sue!

Those compression hose sure are ugly, aren't they? I wear them under slacks. I still wear normal panty hose if I wear a dress.

I researched drug treatments for NCS and included them on this page. Hopefully some others on board will pipe in their experiences with some meds.

I hope this helps!

Michelle

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Hi, Sue. I'm glad to hear that you and your family have worked out a way for you to rest at home with company by your side... It must feel very reassuring just knowing that people who love and care for you are helping you heal following that awful hospital stay! I know you'd be there for them if your situations were reversed.

I don't have NCS so I can't comment on the drug piece; I don't know what you're going through, but it sounds incredibly challenging!

May I throw my 2 cents in about the compression hose since you brought it up? (I've written about this in response to other posts; people are probably sick of hearing me say this...) I wear the thigh highs every single day, about 16 hours a day, and I can't stand NOT having them on! I wish I could sleep in them, but the doc said not to. My grandma never wore em, so I don't have that association... and my husband seems to find them a bit sexy! :lol: Honestly, though, I hope you'll get up the gumption to try em--you may be surprised at how fantastic they make your legs feel... more lively, more energetic, more powerful. I don't even mind wearing them when it's hot out! (I was shocked to discover this myself, but they really do help.)

Give em a whirl when you've got a girlfriend over and you can just laugh at how absurd life can be sometimes. Then put a cute pair of jeans on over the top and no one else will ever know your little secret. Let me know how it goes!

I hope you feel better soon,

Merrill

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Hi Sue,

I don't have NCS either so I can't comment on the medications. However, I can comment on the compression hose. I have gone without them and my legs are so tired and achy that it's worth any ridicule I might encounter. I wear them everyday to work with dresses, skirts, and slacks. Actually, I've never had anything negative, only my friends have asked if they were hot. There are so many choices and colors to choose from it you look on line at the Ames Walker website that Nina posted a couple of days ago. Soome look almost silky, and some look more like tights. If you don't like them, I think you can return them if you haven't worn them. I recommend the panty hose. They are so much more comfortable. I was given the thigh highs in the hospital, but I usually only wear them at home. They are open toe, and I find that annoying, and the band at the top makes me break out in heat rash, and it's soooo tight I am red at the end of the day.

Good luck with your appointment. I'm glad you are being proactive about your treatment.

Deb

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PS since Deb mentioned it: I wear Mediven brand -- I'm 5'7" -- I found another brand I tried to be too short ... so if you talk to someone in customer service at the site/company Nina recommended, make sure you buy a brand appropriate for your height and weight.

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I may as well add that I wear the Mediven brand, too. I'm 5'6 1/2" and weigh 140. I tried another brand that was a great deal less, but they were too short, and I put my finger through them trying to get them up. They were plenty tight, but just too short. You can get the Mediven Elegance with MediSilk 30-40 pantyhose for $73.56 with the discount that Nina wrote about. The discount code is spring04. The company is Ames Walker and they have a web-site that you can look at all the products. If you spend over $60, the shipping is free. When I was released from the hospital in January, my husband went to a supply store here in Charlottesville and bought me a couple more pairs. They cost $99 apiece at the store. :lol:

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