Trigeminal neuralgia

[positiveness]

Ouch! Night time seems to be worse at times. The nerve keeps firing causing pain when you try sleeping. I know it could be worse though.

[greaterexp]

I’m sorry you’re hurting so much. Does anything help at all?

[carolek572 CommunityAmbassador]

Sorry for the pain, positiveness Is there anything that can be done to alleviate the pain? That would drive me crazy if I couldn't stop that pain.

[positiveness in reply to carolek572]

There are things that help at times. I know this will eventually pass. I am thinking of having the Gamma knive procedure done, but the Neurosurgeon is suppose to contact me next week. Hopefully Monday or Tuesday. Then I am hoping we can talk more about the procedure.

[carolek572 CommunityAmbassador in reply to positiveness]

Let us know of this gamma knife surgery and your experience, positiveness I hope that you find some relief soon.

[positiveness in reply to carolek572]

Thank you so much.

[Ali_B62]

I am most definitely no expert, but just wondered if cbd oil would help? I really hope you find something to alleviate the pain.🥰

[positiveness in reply to Ali_B62]

It seemed to take the edge off at first, but then didn’t help.

[erash]

So sorry for your pain 😢

After many yrs of suffering, gamma knife surgery rescued me from my TN

[positiveness in reply to erash]

So nice to know that. Thank you so much.

[positiveness in reply to erash]

I am so glad gamma knife worked for you. 😊

[InvestorwithMS in reply to erash]

Erash how many surgeries did you do?

[erash in reply to InvestorwithMS]

Just the one

[pamgarner]

nothing worse than hurting that shows up like clockwork,hope you feel well soon

[positiveness in reply to pamgarner]

Thank you so much.

[goatgal]

All these night time nerve antics come about, in my opinion, because when we lie down and try to sleep, they have no big, complex jobs to do (like walking, holding me upright, and so forth), and so they get bored, send messages to one another, trying to liven things up.

[RoyceNewton]

hard to be much worse, how many years are you into it and what are you doing?

[positiveness in reply to RoyceNewton]

It has been coming and going for a few years now. I am taking Gabapentin and Baclofen. Also looking in to Gamma knive.

[RoyceNewton in reply to positiveness]

I aam in Phoeniz Arizona. I had cyber knife 3 times. I recommend waiting as on g as you can before surgery. They will not cut the nerve completely, and they do do the nerve WILL grow back, eventually. Trigeminal is not fun, the list I was on the strengths make the mind boogle, but I held out as long as I could. Good luck and stay strong.

[sapphire65]

See if you can get a prescription for oxcarbazepine 300mg tablets. I've taking these since 2015 and they work! I can eat and talk without anymore "shocks". Give it a try!

[positiveness in reply to sapphire65]

That is amazing! And does it make you feel more tired?

[sapphire65]

I didn't have any bad side effects. I am VERY happy with this med. I had thought the TN would never go away but, it is now with this oxcarb!

[positiveness in reply to sapphire65]

I am sure you are very happy! TN pain can be so painful and annoying.

[positiveness in reply to sapphire65]

And how often do you have to take it?

[positiveness in reply to positiveness]

I am calling neuro tomorrow about it.

[sapphire65 in reply to positiveness]

I take it twice a day, morning and dinner. This med really does work! See what you can do to get a prescription. It's definitely worth a try!

[positiveness in reply to sapphire65]

Well thanks to your reply, I now have confirmation of the medication and it’s being sent to my pharmacy. 😊 And I have had nerve attacks while posting to you. Do you take Baclofen and Gabapentin with this?

I have used you as someone I know and have seen improvements with this medication. I can’t thank you enough.

[sapphire65 in reply to positiveness]

Great news about the oxcarb! I do take Baclofen, 20mg tablet 3 times aday. This was added for 4 months ago. I had a relapse of TN, so I take that also. The Oxcarbazepine might be OK be itself. I would try it like that at first. So sorry to hear about the nerve attacks. Please do keep me updated. Best wishes!

[positiveness in reply to sapphire65]

Special thanks to you informing me of this medication. I took my first pill tonight.

[sapphire65 in reply to positiveness]

This is great news! Just remember it it's not an overnight fix, it takes a couple of weeks. How often do you take the meds? I am just so happy for you!

[positiveness in reply to sapphire65]

Thank you so much! For the first time in while, I was able to eat lunch and drink my water through a straw without pain.

[positiveness in reply to sapphire65]

I see what you mean about not being an overnight thing, but the pain isn’t as intense today, which is fantastic.

[sapphire65 in reply to positiveness]

I'm so glad it's working for you! Pretty soon it might be, I don't even remember when I had TN! It does get alot better but, you could still get a "shock" now and then, but just keep taking the oxcarbs. Take Care!

[positiveness in reply to sapphire65]

Greetings!

Thank God I am still not feeling any nerve pain. Tonight is my first night not taking the 300 mg capsule of Gabapentin. If I continue pain-free, then I am discontinuing Gabapentin during the day, as well. I hope to get my strength back in the meantime. It’s crazy how weak it made me feel.

I hope you feel well.

[sapphire65 in reply to positiveness]

I hope the med works for you. I've only had Oxcarbazepine for TN( Trigleminal Neurosis) Oxcarb worked wonders for me. I do hope you are feeling better!

[positiveness in reply to sapphire65]

Thank you so much sapphire 65. I am feeling great after starting that med and I didn’t think anything would possibly work. Everyone is so happy it does, including me.

I am slowly getting my energy back after stopping all the Gabapentin.

[Momjules]

What is the gamma knive?

Thanks!

[positiveness in reply to Momjules]

Many hospitals don’t do the procedure. I thought for sure the bigger ones would, but I guess not.

[positiveness]

Gamma knife is a non evasive procedure and a radiosurgery that kills the trigeminal nerve.

[positiveness]

Well I just took my first Oxcarbazepine pill to help with the trigeminal neuralgia pain and discomfort.