3 Meds down, what can I do?

Posted , 11 users are following.

I was diagnosed with TN this year I've been dealing with it since I was 19 I am now 25. I know have insurance and have been seen my help providers at the military base I am at. I went to the ER do to pain when I thought I was sinus related the doctor then aid it was TN which began my journey with Keppra ( If you have a short temper watch out Keppra made me almost snatch some kid over the counter at Burger King) after discussing with my doctor on base that this medicine was making me psycho we tried Tegratol ( HELL, need I say more ) . It's been about 3 months since I've been on Gabapentin and it works/worked.

Today I had one of the worst episodes of my life . At a dose of 600mg all at once in the AM the pain was explosive to say the least.

It affects my eye socket whole right side of my face. My nose runs and eye waters can't open my eye and feel like I can't breathe it hurts so bad. I've been to the MRI and ruled out MS.

I left work to go to the ER again because I thought I was going to die . The Tegratol made me want to kill myself . Now the gaba isn't working and I'm not sure what to do .

My doctor said that I need to see a therapist because of my depression but I'm depressed because my damn face makes me feel like a burden to society and cause me to lose focus and not be able to help my co workers because I'm literally down and debilitated after an episode. No one understands how bad this hurts me physically and mentally .

I'm tired . I have a 6 month old son and a wife that I need to be 110% good to go for them, I can't because I'm a hermit and I don't know why. I just wanna be able to not be anxious and nervous about my episodes ... I can handle pain. This is hell on earth . I'm losing jobs because I have to leave because of my pain.

Maybe I'm just complaining or venting I don't know I just need relief and don't know how to ask my doctors that I need this over this. I'm over being afraid because of my medicine and condition . Someone please point me in the right directions . Thanks you . Hope you all find the relief!

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9 Replies

  • Posted

    You sound like me but I had Botox treatment with medicine

    Oxcarbazepine and carbamazepine

    And antidepressant, etc

    All these make you tired and no life

    Unfortunately I have left hemisphere damage and that complicates everything

    I would see a Nuero surgeon

    But letting you know a good one is hard to get an appointment

    That is all I can say

    Thanks for the vent - it was ok for me

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  • Posted

    I too had TN for 1.5 years before opting to go for MVD surgery. I got a lot of side effects from Tegretol and the dosage kept going and I knew I couldn't handle anymore.

    Please ask your neurologist about MVD. It's not a perfect procedure and not without complications as in my case but it's still better than all the other procedures out there. I hope you find your solution to being pain free.

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    • Posted

      Hello Deb,

      As I replied to rsw, I will put this in a nut shell. I have had a MVD done and Stereotactic Radiosurgery w/ radiation. Both failed ME. They have worked for others though. The side effects that I am experiencing on both sides are as follows: weakness of muscles involved in chewing on side treated, pain on side treated, eye numbness on side treated, inflammatio/irritation of the eye on side treated, and I had  lateral damage to cranial nerves that produced hearing loss, double vision at times, hoarseness, balance problems, and difficulty swallowing. I had radiation done to both sides first, because  I have bi-lateral TN. Oh, "anethesia dolorosa" snuck in there also with the MVD procedure...pain over numbness. Interesting reading on line. All these procedures and more are on line if you choose to RESEARCH, which could be very helpful for you, or get the book "Striking Back". Outstanding reading.

      PLEASE do not let this freak you out. The Doctors say that I am wired differently than others. No, God does not mistakes.

      Ok, soap boxing done. I pray that you make the right choice with this "monster", if it is going to be meds or a procedure.

      God Bless,

      Greg

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  • Posted

    Have you tried lyrica?  I was on carbamapezine and gabapentin ...did not work....better control with lyrica

    less side effects too

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    • Posted

      I tried lyrica but it worked great problem for me was my left arm would get really weak an i could feel my heart throbbing in arm and it hurt at the same time that happen twos after starting on just 75 mg you may strart at a low dose
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  • Posted

    Hi. I would make an appt with a competent neurosurgeon if I were you. There are procedures and surgeries that can help. Pittsburgh is a good place to go for help with TN. Dr. Sikula is execellent. You can google him. Best of luck and God bless. 
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  • Posted

    I must agree with Luanne. Also, each person reacts differently to medications. FYI, I am on Tegretol slow release 400mg morning, 100mg at 6pm and 400mg at bedtime. Along with this I take 125mg Lyrica  morning,  100mg at 2pm and 125mg at bedtime.

    It took a while to build up to this higher dosage (about a year) and I was a zombie for a week or two each time I increased the dose.  I have had Gamma Knife radiation which seems to have worked for me and I now have zero pain but I have to decrease the meds not quicker than 25mg per week so it's gonna take a while. Keep reading on this forum. There is much to learn.

    also, get a very good Neurologist asap.

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