I’m newly diagnosed with TN and had been prescribed with Tegretol by ER and told to follow up with a neologists.
My neurologist appointment is scheduled a month out, but I have several questions before hand.
I read that the medication can drop sodium levels. For those who are prescribed Tegretol (CBZ) and have taken it had your sodium levels been impacted? Are doctors required to test levels to make sure the levels don’t fall into toxic levels that causes hyponatremia?
I want to be as proactive as possible to make sure I don’t do harm to my body when I’m trying to surpress the excruciating shocks.
For those who are unmedicated—how do you deal with the pain? How do you maintain relationships with intimacy? Kissing can hurt and I’m trying to understand what methods I can try to push through or manage the pain?
I live in the Arizona desert & did have a problem with depleted sodium the first summer I was on Tegretol. I am a golfer & in the Az heat drank a lot of water then started adding electrolytes to my water. Nuum tablets added to water was very helpful & their are other electrolyte additives. I looked for those without sugar or very low sugar.
I was married a long time & my husband was understanding about kissing. I will say that I was perceived to be quiet by others as I was pragmatic in when I spoke as it was very painful at times.
I’ve since had MVD surgery almost 10 years ago & blessed I no longer have pain. Had a great dr!
Don’t fear about the salt depletion issue & look for alternatives to avert it. I hope this was helpful & don’t hesitate to reach out if I can be of assistance.
Sending good thoughts and vibes to you.
Sorry you are dealing with this excruciating pain. Since mine was caused by a tumor on my brainstem, I can’t tell you how to deal with the level of your pain. But as for tegretol , I have taken it like forever. When I feel more activity coming I take more. My neurologist says it’s least harmful to my kidney and liver. As far as it depleting my saline I’ve had no problem with that. Of course, I would advise you to continue your physical exams and lab check with your Medical Practitioner. Again, I pray your pain minimized. Gloria37
Welcome to the club! I highly recommend reading a book called Full Catastrophe Living to learn about living with our unique pain.
As for Tegretol, I did not enjoy the side effects, and I was instead prescribed Trileptal, which is Oxcarbazepine. I tolerated this medication better.
Ultimately, it’s difficult but necessary to search for the right medication for you. Everyone has different causes and needs, so you might have to experiment for a while with a doctor. By that I mean take a medication for at least several months before you give up on it. Only change one medication at a time, and don’t change medications when you are trying to change diet/ lifestyle if you can avoid it. In this manner, you can find what works best for you. Right now I take Lyrica, Cymbalta, and Xtampza. It helps, but nothing is a cure.
I have tumors on my trigeminal nerve, and since your cause is probably different, your solution will be too.
So your journey has begun. It sounds like you have a good doctor who has done his/her research. I have been on Tegretol for almost nine years with no serious side effects. It has been a godsend for me. Although I had MVD surgery about eight years ago I have continued taking the medication in a much lower daily dose. The original thunder bolts are gone but I was left some general facial nerve pain, hence continuing the medication. I have not had any sodium issues and have not had to be tested for it.
I can only speak of my TN experience but I could not have continued to live with the amount of pain I had. No eating, no talking, no facial movements, etc. it was unbearable until I started taking Tegretol. There are several different medications for TN. There is much hope and success ahead of you. Everyone’s journey will be different based on what works best for them but I am confident you are on the right path. Good luck and God bless.
I’ve been on tegretol or trileptal (sister drug) on and off the past 30 years. Most of us have low sodium. My average is 125 and it freaks out docs who aren’t familiar with us. I’m coping, eating as much salt as I want and hoping I don’t go below 120. So don’t worry about hyponatremia now. You have to deal with living with TN first. The whole process is a life’s adjustment. Be at peace as best you can and check your salts and monitor how you feel. New TN people have to try to not worry too much about what the odd person says you have to do. Do your research and make sensible decisions with, hopefully, sensible docs. Good luck.
Thank you, Gilbert. You’re right the stress alone has me freaking out. I appreciate your response!
Wow, 9 years. Y Tegretol worked like a charm for me. I still have issues washing my face (apply the pressure when scrubs mostly) but overall the zaps are gone. Thanks for your response!
I have had TN for about 8 years. Did not have a low sodium until last year when taking larger dose. Your provider will know how often yoy need tests. Trust them, unless you get the feeling you shouldn’t. Write down questions you have and give them to the provider near the beginning of your appt. Ask for it back at the end. I had one provider who answered some after i left with erroneous info. Take notes.
Two things that help are yoga, do it religously. There is one movement where, hands at waist level, pretend to roll a (maybe8") ball moving side to side. Turn your body side to side with the movement. It just decreases the pain for me.
Second, accupuncture takes away the pain. For me it is just while the needles are in and for a short period after. But, it’s heavenly.
I tend to have less pain when i get all the sleep i need.
When it’s really bad, i use viscous lidocaine to eat. You can’t use i too much, ask provider.
Ask your dentist and dental hygenist for tips, especially when it’s too painful to brush. When you use mouthwash, the kind that doesn’t burn, leave it in your mouth a long time. Go do your next Steps in your daily procedure. Get the mouthwash to the back of your mouth as far as you can. You will learn many tricks on your own everybody is different. Sorry for anybody to have to go with you this But sometimes it is time passes it gets less than less sometimes people have Remission that may last for up to year. Good luck.
I had my first neurology appointment following my TN diagnosis on February 15. The doctor was knowledgeable about the disorder, which was comforting, and he answered all my questions, and I had a handful.
I’ve been in Tegretol 400mg, which stopped the shocks, but I’ve been experiencing pain in my tooth and whenever I talk for an extended period. I assumed that was unrelated, so I didn’t mention it to my doctor because I had a dentist appointment later. I must say, I was highly disappointed when the dentist told me my root canal wasn’t fractured. Before being diagnosed with TN, I had an RT done, and the tooth broke, so the pain currently feels so similar, like the tooth is split in half and it’s pressed against my gum line. While I appreciate My tooth not being fractured, I can’t take the pain. I’m glad I have no shocks, but does anyone feel pain in their tooth sharp, not shock like but similar to a pin is sticking in your gum when you Eat or speak?
Just FYI:I have been dealing with Facial Pain for decades …It can have multiple origins .
Trying to parse out whether pain in a tooth is dental or Neuritic can be frustrating for everyone — the patient and the Dentist .
One of my diagnoses is Glossopharyngeal Neuralgia. .
But Facial Pain patients can also have mundane pain issues.
For two years now we have been trying to sort out pain in a new location —even which tooth is involved .
I have by now gone in for a Root Canal three times only to abort it each time .
We have discussed pulling a tooth .
I have seen three Endodontists.
Plus a Facial Pain Dentist at Duke.
Dental testing did not support the root canal —plus oral lesions usually show up as the pain progresses .
It’s not clear if the pain is solely due to my crappy immunity with Shingles and HSV1or not …
BUT —-it has helped to wear a mouth guard at night designed for people who clench their teeth.
I am a World Class Clencher .
And that is adding insult to injury
While some of this new pain really does seem to be neuritic and related to a virus —-what has also helped is treating my clenching by wearing a mouth guard faithfully at night .
That has helped lessen some of the chronic pain.( not the nerve pain that shows up with oral lesions ) .
The Dental School Endodontists tell me that chronic clenching can cause severe inflammation in dental tendons .
And hence pain .
It can insult an already diseased state
So I would suggest that when we Facial pain people are in a quandary of whether a tooth needs to have a root canal or be pulled then perhaps it’s time to look into clenching .
In the cases where it’s not clear —-if there is NO good evidence for a procedure to be done then perhaps try treating the tooth for clenching.
It might save you from an un-necc. .root canal or extraction…
Lots of other sweet, intimate things you can enjoy. when kissing isn’t possible. Openly coumicate with your partner, and it will hopefully soon not bemuchof a problem.