ater 18mths of appt after appt, test after test, i was finally diagnosed with NCS thanks to a positive TTT. my question is what kinds of treatments have you all been through. i was put n prozac, metropopal(bb),florinef. i feel worse than i did before the meds. are there any suggestions for what to try. i have also been taking 1/2tsp of sea salt daily. i was told that sea salt is better than table salt.

Krissie -

Welcome to the Board.

The prozac might be making you feel worse. I take Toprol XL (metropolol is the generic version) and increased my sea salt and water/gatorade intake throughout the day. At night I take a small dose of clonazepam (klonopin) for anxiety. I tried prozac and paxil before and I had every side effect under the sun after only taking a few doses! Those drugs made me feel awful. I am going much better on the Toprol XL, sea salt, hydration therapy and clonazepam. I have also heard that some people are having issues with the generic version of Toprol XL - you might want to ask your DR to write a Rx for you for the brand name version - my insurance will cover it because the DR wrote that it was medically necessary.

Good luck!

Jen

Krissie -

It's hard to start on all of those things at once - because you won't know what will be causing different side effects (or good effects!)

With all of those meds, esp. the Toprol and Prozac, there may be side effects in the beginning that will decrease with time. For all SSRIS like prozac the beginning is pretty crappy for a lot of people but the pay-off comes later if you can hack it for the first month or so. With Toprol there have been varying reports - it really helps some people and really makes others feel worse.

I've tried toprol and it pushed my BP too low, so it was clear that it was making me feel worse.

Good luck!

Krissie,
I think the most important thing to remember is that everyone needs a different drug combination. That's the thing about all this stuff - it take a lot of trial and error.

For me, Florinef was awful. I also did not do well on SSRI's although some people do great on both of them. If you don't feel well on the drugs, talk to your doctor about backing off and experimenting with other things as well.

As far as the salt intake goes, 1/2 tsp isn't all that much - so keep upping it (if your dr says it's ok). Sea salt is better than table salt because it has a bunch of minerals in it like magnesium.

Good luck!

I'm only on midodrine, but syncope wasn't my complaint - presyncope, falling, and tachycardia was.

If you have issues getting enough salt by just adding it to your food you can try salt tablets such as thermotabs. I take these with meals because I do not like my food salty. Other then that it's just fluids and more fluids.

thanks for the replies, i did take it upon myself to not take the prozac today, and i actually felt much better, dont know if it is the prozac, but i also had the same feelings with taking paxil, zoloft, lexapro. what is it with drs and antidepressants. i dont think my body tolerates those.

Hi Krissie,

I have ncs too. I am on midodrine, florinef, corgard and norpace. I also get iv fluids 4 times a week. My cardiologist's nurse practitioner had told me early on that going on lexapro was a possibility, but they haven't tried it. I am extremely sensitive to meds.

Good luck and welcome,
michelle

Hi Krissie,

I just wanted to welcome you to the boards!! I have been talking to you over on NeuroTalk (I go by Addyson there). I'm glad you made it over here. You will find a ton of awesome people here with a wealth of great knowledge.

Good luck!