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Living With Facial Pain

TN and hep C a bad mix


#1

I have had TN for about 4 yrs and I was able to control the pain some with Tegretal and Gabapentin. I was recently diagnosed with Hep C and sent to a GI Dr. she prescribed Zeptair and I was told I had wean off Tegretal to get the full effects of the Hep C med. I am now on Baclophen 600 mg a day, Trazodone at night, Koldipine, and increase Gabapentin to 600mg 4x a day. I am in so much pain I can’t eat, sleep, brush teeth, and sometimes I can’t even talk. My Doctor doesn’t even know what to do with me anymore. Looks like I will have to live with Hep C and go back on Tegretal. I am beside myself!


#2

I have no thoughts how to help you, but I’m so sorry you are going through this.


#3

Oh my gosh. I’m so sorry you’re in so much pain. I pray doctors will find a way to address the Hep C and alleviate the pain of TN. I can’t begin to know what suffering you must be going through. Please keep faith and don’t give up hope.


#4

There are at least three other hep c specific meds out there, maybe Zeptair isn’t the best option. That’s actually just the newest one around I think. Harvoni is one med that’s been around about 10 years. Peg intron is another one. Entevior (spelled wrong) is available too.

Your insurance (usa) will need prior authorization. Look online get a list of possible meds, call your insurance for coverage options then talk to your doc again. You shouldn’t have to come off an anti-sezuire med to treat hep c, that makes little sense.


#5

I am so, so sorry for your pain…I know how bad it hurts. You may want to check out combining olive leaf, raw garlic, raw honey to fight the hep C as well as the TN.
In my years of facing this giant, I’ve become a firm believer that TN is related to/caused by a virus that gets into the nervous system and thus needs to be fought by seriously boosting the immune system. I’m 100% pain free today, and have never touched drugs or surgery. The TN pain was so bad in the past I’m couldn’t eat or speak. Some of my previous posts outline the journey and give more info in what worked for me. Keep heart…you’ll get through this.


#6

My GI doc looked at all the Hep C meds and zepitair is the only 1 my insurance will cover, probably because of the cost 17,000 compared to 100,000 for some of the others like harvonia. Thanks George for the good advice definitely worth trying.


#7

If that info abut your ins coverage is correct (I always tell everyone to dble check all coverage themselves) then you can do an appeal. Your ins doesn’t want to make one issue worse with the treatment of another!

Call the member services number on the back of your prescription card and ask for coverage info and appeal info. There has to be a treatment option that won’t makes you stop treating TN.


#8

**[quote=“walleye, post:1, topic:14560, full:true”]
I have had TN for about 4 yrs and I was able to control the pain some with Tegretal and Gabapentin. I was recently diagnosed with Hep C and sent to a GI Dr. she prescribed Zeptair and I was told I had wean off Tegretal to get the full effects of the Hep C med. I am now on Baclophen 600 mg a day, Trazodone at night, Koldipine, and increase Gabapentin to 600mg 4x a day. I am in so much pain I can’t eat, sleep, brush teeth, and sometimes I can’t even talk. My Doctor doesn’t even know what to do with me anymore. Looks like I will have to live with Hep C and go back on Tegretal. I am beside myself!
[/quote]

**


#9

I was in as much pain with TN and could not take anymore so I had the Glycerol Rhyzotomy although they offered me alternative operations. It is not the greatest operation but I am out of pain but the left side of my face feels numbed like it does after an injection at the dentist. I am sure if the numbness wares off the pain may return but I take every pain free day as a bonus. Best wishes and I just hope you get some good advise from the docs. I live in the UK so maybe the health care varies from country to country.


#10

I am so sorry! I hope that everything gets better soon! We will pray for you every night.


#11

600 mg of baclofen is way over the 80-100 mg upper limit they normally talk about. Have you tried CBD oil? I have TN and Anesthesia Dolorosa from a radio frequency rhysomotmy-the entire left side of my face is numb with constant crushing and burning pain. I have had a MVD surgery as well as a neurostimulator implanted on my motor cortex-I take 2400 mg of baclofen, 750 mg of Keppra and 40 mgs of Baclofen daily. I have tried other supplements and drugs as well but have found vaping pure CBD oil is an incredibly effective tool. The CBD oil is legal in all 50 states and will immediately help with the crushing pain. I used to use Charlottes Web oil under my tongue and it helped tremendously but by vaping I get the pain relief much faster-two puffs lasts me at lest 4-8 hours. Best of luck.