So my dad is currently taking tegretol and gabepentin during the day.Neither medication helps. His neurologist prescribed him amitryptiline which he can only take at night. It has helped him so he doesn’t wake up with pain or a headache. Mind you he’s had MVD with a shunt place couple months after and recently a balloon surgery done. He has a neuro appointment coming up next Monday. Is there any other medication that would help him during the day?
Has anyone tried essential oils?
this is my first post so excuse me if i can’t get it to post correctly. i have PHN TN from shingles and have tried anything i can get my hands on-nothing has turned out to be very effective (for me) except Tegratol and Methadone (very small dose) that has knocked down the ‘tasers’ i used to get-those unexpected jolts of searing pain through my forehead and eye. i’ve tried peppermint and capsaicin but they both burned-the capsacian cream put me to my knees. tried coffee cruda, sesame oil, lavandin oil, roman chamomile oi, german chamomile oil-nothing. i even tried putting tea tree oil on after 4% lidocaine cream as i know tea tree oil penetrates the skin quickly and deeply-didn’t increase the effects of the lidocaine cream. but i use the 4% lidocaine cream throughout the day when things get bad. it does calm my pain down somewhat once the intensity of touching my skin goes away. oh-can he stand to have anything touching his skin? if so he might try the 5% lidocaine patch. i tried it but couldn’t stand having anything touching my skin. unfortunately nothing helps the permanent 2nd degree burned feeling i have on my scalp, forehead and face. and i’ve yet to find anything to help with the sudden onsets of ‘itchy-pain’ i get any given place i’m affected at any given time. but i’ll keep looking! best of luck to your father!
I’m going to add the dosages as well because it could be your dad isn’t on a high enough dose.
Carbamazepine 300 mg 3x a day
Gabapentin 900 mg 3x
Baclofen
Methadone 10mg 3x a day
And then I have to take sodium pills because of the carbamazepine. I’m really sensitive to it and had to be hospitalized Bc of low sodium.
I was also told Forces of Nature Nerve Oil treatment was really helpful. I just got it from Amazon so I haven’t tried it yet but a friend suffering from trigeminal neuralgia swears by it.
If you have hesitations or questions about methadone. I know I did! The only thing I had heard about it was that it was to help heroin addicts stop taking heroin.
But although it is an opioid it acts differently than other opiates and works really well on nerve pain. I had been given Norco, dilaudid and even fentanyl in the hospital before we knew I had trigeminal neuralgia and none of those touched the pain because it is nerve pain. But methadone acts differently and may help.
I’m sorry your dad is suffering and I really hope he finds something to help. He’s lucky to have a son so invested in his care.
When I switched to Oxcarbazepine I found I could function with a much clearer mind and had more energy. This was my 24/7 med and nothing else.
Cairenn, does that medication help during the day with pain?
Careinn did you change from carbamazepine to that and it worked because I’m looking to try other things and doctors seem intent on me doing these new $400 opiate Nucynta and I don’t understand why we can’t try other anti epileptics first. Would be nice to know of someone that worked on.
Fundamentally nucynta is extended release tramadol, which is a generic. It’s also considered to be stronger than tramadol, but, at hundreds of dollars in cost difference it might be worth trying tramadol first.
Nycynta has proven work well on diabetic neuropathy. I’m not sure that means it will work on other neuropathy, though. It also seems to have less constipation issues than more standard opiates but, then again, for a few dollars you can add OTC stool softens to the opiates and typically resolve that issue if you happen to have it.
You said in an earlier post opiates didn’t work for you, considering the pain relief provided by nucynta is similar to oxycodone and morphine I wonder if it’s the way to go for you.
I like your idea of trying other anti-epileptics. Have you tried lamictal?
My pain had a mind of it’s own. Oxcarbazapine gave me a clearer mind and better energy. Carbamazepine made me sluggish and not as coherent at work.
I can’t say that any meds I tried helped the pain. I would up doses but pain always broke through. I eventually had MVD surgery for GPN. I have had NO SEIZURES since this!!
Thanks, trying to decide what to do right now. MVD Or my pain doctor suggested Radiofrequency thermal lesioning. I’m concerned because I have both TN1 and TN2 bc of MS maybe or just bad luck and I’ve read it can cause more permanent facial numbness when you have TN2. Since I have MS I know numbness isn’t always just the lack of sensation, sometimes it feels like your foot is asleep and you can never wake it up. If I had to trade I would take the latter I just don’t want to do it and have it not work and more problems.
I suffered GPN for 15yrs and had MVD surgery in January. I am SO HAPPY I DID THIS!!! I’ve had no throat seizures or trauma of any kind since the procedure. I know all of our traumas are uniquely different though. I wish for you to find *Healing of your pain 
Where did you have your MVD done if you don’t mind me asking? I’m so scared of it but I think it might be time.
University Hospital – London ON Canada
Dr Parrent is the BEST!!! He understands the pain and didn’t keep me waiting once I was ready for the MVD. There is NOTHING to fear!!! You have everything positive to look forward to. The first few weeks after are a bit challenging as you need to take things slow but I’m sooooooooo *Happy I did it!!! Was back to work after 3months with energy I have not felt in 15yrs!!! All the best to you!!!
Dr Andrew Parrent - info
http://www.schulich.uwo.ca/cns/people/bios_neurosurgeons/bio-parrent.html
Dr Andrew Parrent - Healthine.ca
https://www.southwesthealthline.ca/displayservice.aspx?id=167971
Dr Andrew Parrent - ratings (5stars tho there will always be those who are displeased)
I had consultation with Dr Parrent in February 2017 but declined the surgery as I was going into remission as I always did in the spring. I learned that cold temps (and beverages) are triggers to nerve problems. I had the surgery January 2018 after waiting barely 2wks from my phone call saying ‘I’m ready!!’ If it hadn’t been for the Xmas holidays I would have been scheduled sooner. Thank*You *Universe & Dr Parrent for recognizing this debilitating pain!!!