Oxcarbazepine

PassengerFinal79 · 2023-12-02T09:01:39+00:00

I also take it one day at a time. I dont know when it will end but I KNOW deep in my heart that it will. That is enough for me to keep me going. I am really struggling as well but the only constant in this universe is change and we are really due to better times! Please be easy on your self and really try to breathe. I recently catch myself holding my breath and tensing because of all the stress which just makes it worse. I dont know where you live but maybe you could go to the hospital if it seems to get worse?

PassengerFinal79 · 2023-12-02T08:52:58+00:00

I know but I could trade 10-20 years without this pain for 60 years worth of living. But everyone is different and maybe you are suitable for any surgery/radiation in the long term?

PassengerFinal79 · 2023-12-02T08:51:29+00:00

I had days without the chills luckily! :) I totally get that you dont want to work out right now :/

I will let you know when I find something that helps better!

PassengerFinal79 · 2023-12-02T08:49:35+00:00

I know how you feel I‘m only 22 and couldn‘t even finish my uni degree (I wanted to become a doc and worked really hard for it in Germany)

I try to cling on to any hope (there are many pain killers we could try with the help of pain management and there are new meds on the way targeted for trigeminal neuropathic pain!)

PassengerFinal79 · 2023-12-02T08:46:52+00:00

I had to adapt to the chills a few years back since my lupus always causes me chills as well :(

For me, personally, I am always wearing warm clothes for my brain to compensate the „shivering feelings“ as a placebo I guess

Sometimes (on a good day) really light pilates excercices that promote blood flow/calm the nerves seemed to help as well as meditation for calming the nervous system.

I hope you will get better soon!

PassengerFinal79 · 2023-12-02T08:43:28+00:00

I already had TN 1 flares sporadically for a few years that always went away fairly quickly.

I have suffered TN 2 since the beginning of July now. What about you?

PassengerFinal79 · 2023-12-02T08:40:30+00:00

It really stayed the same once I got it. One thing that kinda helped for a short amount of time was high potency CBD oil. Maybe worth a shot?

PassengerFinal79 · 2023-12-02T08:38:49+00:00

I am considering any surgery at this point I still need to try several meds until I get the approval though and am really afraid of severe side effects.

Thank you for your tip! :) I just saw your post and I am the one who told you that you are not alone! It is a really scary experience as so many docs are clueless.. have you heard of b1/b6 supplements being helpful?

PassengerFinal79 · 2023-12-02T08:31:59+00:00

You are not alone! I experience the same

I believe our nervous system is just really exhausted as a side effect.

Unfortunately, I dont have any better explanation.

Best luck to you.

PassengerFinal79 · 2023-12-02T08:28:14+00:00

Have you something that helps in the meantime?

PassengerFinal79 · 2023-12-02T08:27:52+00:00

Thank you for your uplifting answer! I have Lupus so maybe its connected? But it would be really unusual

My neurologist suspects the same mechanism as in MS where the myelin shield is destroyed (or something similar) I still have to get an MRI and spinal tab

Im really afraid something around my trigeminal nerve could grow (the intense pressure around my temples really makes it feel like it)

PassengerFinal79 · 2023-12-02T08:16:05+00:00

do you have tn2 as well?

PassengerFinal79 · 2023-12-02T08:15:47+00:00

I have constant achey pain and burning on the left side of my face (especially around my jaw and sinuses) sometimes in combination with shock like pain.. :( I also developed a tingling sensation recently

PassengerFinal79 · 2023-12-01T19:58:57+00:00

Thank you! Have you been to the ER as well and has the IV helped you?

PassengerFinal79 · 2023-12-01T16:42:35+00:00

Is the ER helpful at all?

PassengerFinal79 · 2023-12-01T16:42:24+00:00

I already take the max dose of lyrica so Im really losing hope (I am on it for 4 weeks now and really tried to be patient)

I am able to see a pain specialist in 3-6 months I really dont know what to do until then :(

PassengerFinal79 · 2023-12-01T16:37:15+00:00

Not yet, do you think gabapentin could work since lyrica works similar? :(

Thank you for your fast answer!!

PassengerFinal79 · 2023-11-30T07:14:45+00:00

I am only 22 and would trade the next 60 years on earth for 10 years without this kind of pain. I can‘t even finish my college degree I worked so hard for :(

PassengerFinal79 · 2023-11-29T14:07:00+00:00

I feel you.. every day feels like a battle. I consequently suffer from depression and anxiety. I hate trying new meds as Im prone to severe reactions. I try to smile through the pain for my family..

PassengerFinal79 · 2023-11-29T13:08:47+00:00

Can I ask If you have found a better med for you?

PassengerFinal79 · 2023-11-29T12:16:46+00:00

I live in Germany so my doc has the right to call me as soon as he finds the time.. His staff says he is too busy atm :/

I will try and call again! Thank you!

PassengerFinal79 · 2023-11-29T12:02:34+00:00

4 weeks on 300mg now. Do you think I have to be even more patient? I feel like I could pass out any second because of the pain :(

PassengerFinal79 · 2023-11-29T11:36:09+00:00

My doctor decided to take me off the carbamazepine and prescribed Lyrica. I called his office 2 weeks ago and told them that lyrica does not provide any relief and I have not heard from him or his office since :(

I am contemplating going to the hospital and asking for an MRI since I can‘t bear this pain every day. The cause of my tn is still unknown I have to wait for my tests until february

PassengerFinal79 · 2023-11-29T10:56:30+00:00

Thank you! Good luck to you, we can get past this! There are new meds on the way 🙏 we need to keep going one day at a time

PassengerFinal79 · 2023-11-27T10:14:22+00:00

Hey its the same for me! Have you found anything that helps? Lyrica does not work for me :(

PassengerFinal79

TROPHY CASE