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timorol


gelann
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My daughter was recently diagnosed with NCS. She as tried zoloft but with terrrible results. Constantly passing out. NOw she is on timolol and no improvment. It has been two weeks. Will it get better or should she be switched to a new medicine. She also has gastroparesis? Thanks. Gelann

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Sorry I don't have any answers for you, Gelann. I hated to see your post looking so lonely though! :)

I'm not very familiar with either of those medications and not really qualified at all to give a competent answer. Have you spoken with her doctor about it yet? Does the timolol tend to take a little while to kick in? If so, maybe it just hasn't had enough time to work. However, I'd hate for her to be taking it for an extended period without any positive effects.

I'd certainly speak to a physician about it so you have more information to make a wise judgement call.

Angela

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HI

I am not familiar with the one drug but am with Zoloft. While we are ALL different, sometimes it's the dosage being too high. Like how much Zoloft was your daughter on?

I started with half of a 25 mg pill a year ago on and off, when there were family problems with elder parent and then a relative died.... but my problem is orthostatic tachycardia not fainting. zoloft can help with moods and with orthostatic tolerance sometimes.

Sometimes tweaking the med dosage helps. Then sometimes no med helps...depends on if B/P is dropping first or the heart rate drops to cause the fainting.

Has she had a tilt table test? If so, Did it specify which dropped first?

It can be very frustrating, especially as a parent, I would imagine. I hope you find some answers soon. Keep us posted. But it can take awhile so not getting the answer in 2 weeks, don't let it get you down. Hang in there.

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Hopefully you are seeing some improvement with the timolol now but if not have you considered doing a little research yourself and taking the articles to your daughters consultant. The first consultant I saw for my NCS hadn't treated many patients with it before and was running on trial and error. I did some research into trials that had been conducted and then we slowely went through the list until we found something that worked. This can be really frustrating as often you feel worse before you start to feel any better but it is definately worth it.

You will find lists of medications on the dinet web site and I also have quite alot of information that I used to take to my consultant. It is all copied off the web so I don't think I can post it on here (its a bit dodgy!) but if you would like to take a look through I would be happy to email it to you.

Has your daughter had a 24 hour urinary test to check out her sodium levels?

Did she try any non-pharmacutical (sp) methods (foods, fluids, manouvers etc) prior to starting on the meds?

The reason I ask is I know of several people who tried lots of different meds and then when they had there sodium levels tested it was clear that all they needed was salt tablets. People with NCS require a much higher level of sodium in there body than those without. It is always worth trying the 'nicer' drugs/supliments before going on to the big boys! Especially when young!

Good luck, I will be thinking of you both

Katie

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Unfortunately, the issue is that it's usually a process of trial and error to find the correct medication and non-medication regimen for each person. As mentioned above, we all are a bit different in how we respond to treatments and often the only way to find out is to try.

Sorry it's not easier than that. :D Nina

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