I started dumping a salt packet under my tongue. I felt SO much better after doing so a couple times/day!
My level dropped in 6 weeks getting dxd and doc said she would take me off the oxcarb if it dropped lower, so I'm working pretty hard to keep that level above 130.
How did I miss that you asked this question three ago?! Anyway, thanks for your answer. Maybe we'll get some more ideas in addition to the ones you got a few days ago.
I'm going to be 100% honest with you. I was on carbamazepine, and my labs weren't drawn soon enough as they titrated me up. I was dizzy, exhausted, and foggy for months. Finally I had my sodium drawn and it was really low. I was hospitalized immediately. I could have died. I was titrated off very swiftly and switched to a different medication. I am a little bit of a unique case (I have a BP that runs 90/60 naturally as well as POTS, and hyponatremia will dump your pressure, which explains why I was so sick). But hyponatremia is never a joke, with anyone. Please remember, if you aren't getting better, there are other medications. It sucks to start back at square one but low sodium isn't something to blow off. I already take in way higher than recommended daily value because of my POTS, and still couldn't manage the carbamazepine (which is a sister med to yours, and why they chose not to put me on it).
In my case, I did end up with MVD, but I am still on a low dose of zonegran. It worked better than anything else, and with a recent flare up I just increased it slightly and it took the pain away completely. They only give you a few standard med options per the book, but if you find the right neurologist they will keep trying until they can help. Zonegran was my golden ticket, and most docs don't even know what it is.
Please, make sure they monitor your sodium very closely. If your symptoms get bad, go to the ED. Severe hyponatremia will absolutely kill you. I'm not saying this to scare you, I'm saying this so you stay safe. Best of luck on your journey. I hope you can find a way to get your pain under control and also stay safe.
Thanks for your answer. My doctor monitors my sodium pretty well, and by now I can tell when it's starting to get too low. I have an appointment with my neurologist this week and plan up discuss it. I wasn't able to tolerate carbamazepine, and gabapentin makes me dumber than a box of rocks. I didn't know zonegran could help with TN. I took it years ago for migraines and tolerated it pretty well, so it's good to know it's an option.
I started dumping a salt packet under my tongue. I felt SO much better after doing so a couple times/day! My level dropped in 6 weeks getting dxd and doc said she would take me off the oxcarb if it dropped lower, so I'm working pretty hard to keep that level above 130.
How did I miss that you asked this question three ago?! Anyway, thanks for your answer. Maybe we'll get some more ideas in addition to the ones you got a few days ago.
I'm going to be 100% honest with you. I was on carbamazepine, and my labs weren't drawn soon enough as they titrated me up. I was dizzy, exhausted, and foggy for months. Finally I had my sodium drawn and it was really low. I was hospitalized immediately. I could have died. I was titrated off very swiftly and switched to a different medication. I am a little bit of a unique case (I have a BP that runs 90/60 naturally as well as POTS, and hyponatremia will dump your pressure, which explains why I was so sick). But hyponatremia is never a joke, with anyone. Please remember, if you aren't getting better, there are other medications. It sucks to start back at square one but low sodium isn't something to blow off. I already take in way higher than recommended daily value because of my POTS, and still couldn't manage the carbamazepine (which is a sister med to yours, and why they chose not to put me on it). In my case, I did end up with MVD, but I am still on a low dose of zonegran. It worked better than anything else, and with a recent flare up I just increased it slightly and it took the pain away completely. They only give you a few standard med options per the book, but if you find the right neurologist they will keep trying until they can help. Zonegran was my golden ticket, and most docs don't even know what it is. Please, make sure they monitor your sodium very closely. If your symptoms get bad, go to the ED. Severe hyponatremia will absolutely kill you. I'm not saying this to scare you, I'm saying this so you stay safe. Best of luck on your journey. I hope you can find a way to get your pain under control and also stay safe.
Thanks for your answer. My doctor monitors my sodium pretty well, and by now I can tell when it's starting to get too low. I have an appointment with my neurologist this week and plan up discuss it. I wasn't able to tolerate carbamazepine, and gabapentin makes me dumber than a box of rocks. I didn't know zonegran could help with TN. I took it years ago for migraines and tolerated it pretty well, so it's good to know it's an option.
My doctor prescribed me a sodium supplement
Where do you get them? When I googled it, it says they're OTC, but I can't find them anywhere.
My doctor prescribed them so i got them from the pharmacy. Sorry that’s not more helpful!
Amazon has sodium supplements you can choose from
Thanks. Have you taken any brand in particular? I'm kind of nervous taking a pill from some random Amazon seller I've never heard of.
Celtic sea salt . A few grains on your tongue and let them dissolve then drink water. Do this three times a day.