I have Bilateral TN type 1 or classic pain. I have taken Carbamazepine for 20 years, as well as a host of other pain relief methods. I have developed a very low sodium issue due to the Carbamazepine as well as Osteoporosis. (I do yoga, weight-lifting, HIIT classes, since I was younger.) Unfortunately, I have to take supplemental sodium. I’ve tried to drop the Carbamazepine but have been unsuccessful on any other med. Has this happened to anyone else on the site, and what are they doing to combat this?
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Welcome to the low sodium blues. I’ve had @ sodium level of +/-127 for 10 or more years with no supplemental sodium tabs. My body tolerates this so far. The only caution is not to over hydrate as that can cause severe hyponatremia which can cause siezures. Most doctors will freak out with people like me, but my neuro doc is ok with it as long as we keep checking the sodium count. I over hydrated a few months ago and had a pseudo-stroke. I don’t see any alternative to this situation. Good luck. Watch out for doctors who keep loading you up with a lot of sodium tabs. It might affect your blood pressure
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I ended going to oxcarbazepine and I suffer salt issue too. I supplement my salt but of course there is no home test to see your level. If I get to the point of being dizzy because I was working hard and not taking in salt I will drink a warmed up can of beef or chicken broth. The nurse said it was the best way to raise the sodium level quickly.
Have you tried Gabapentin?
yes, but it doesn’t work with my striking facial pain.
My last sodium was 124! I don’t feel any different, and yes, my GP is loading me up on sodium tabs, which actually worked for about 4 years. However, my blood pressure recently increased so I have an appointment with her this week to discuss what to do.
thanks for all the feedback.
My nephrologist had me lower my total fluid (all beverages) to between 32-40 oz max per day + 2 sodium tabs. In 2 weeks my count went from 120 to 141. First normal reading in 10 years. However, by lowering the fluid to that level I became severely constipated and it took over 2 months to re-regulate my gut after abandoning that method. I don’t recommend your trying that. If you feel ok with 124 that’s good, but mind your symptoms. Read up on hyponatremia just to know what to look for. It’s curious the salt tabs don’t get it higher. I think hyponatremia seems to be caused more directly by excess fluid than simply low salt but that’s only speculation on my part. Good luck and take care.
You cannot reason someone out of something he or she was not reasoned into. (Attributed to Jonathan Swift)
My nephrologist had me lower my total fluid (all beverages) to between 32-40 oz max per day + 2 sodium tabs. In 2 weeks my count went from 120 to 141. First normal reading in 10 years. However, by lowering the fluid to that level I became severely constipated and it took over 2 months to re-regulate my gut after abandoning that method. I don’t recommend your trying that. If you feel ok with 124 that’s good, but mind your symptoms. Read up on hyponatremia just to know what to look for. It’s curious the salt tabs don’t get it higher. I think hyponatremia seems to be caused more directly by excess fluid than simply low salt but that’s only speculation on my part. Good luck and take care.
I empathize with your pain and frustration. Have you tried glycerol rhizotomy?
Dianne
I have not. I am not yet interested in a surgery that damages the nerve, yet. I am only 58, and more than one surgeon indicated to me that I have so many years ahead of me, that if possible, a repeat MVD needs to be done. FUN! Anyway, I am contemplating that.
Same exact problem here. I tried the oxycarbazepine with horrible results.Did not work for me at all. Baclofen helps a little bit to help lower the carbazepine usage. It helps with the zaps.