I have had TN2 since a 1998 surgery to remove a Trigeminal nerve brain tumor. There is constant hypersensitivity, burning and electric shock pain in my left face, eye, teeth, cheek…everything triggers it. I’ve been prescribed so many different meds with their varying side effects that I’ve lost track. My medical insurance has changed forcing me to see a new neurologist who has never had a patient with TN2…she says it doesn’t mater that TN1 is the same. I doubt that. For several years, working with my old neurologist, I’ve chosen to take neurontin or gralise, they are only partially effective for pain but leave me less foggy headed than most of the other meds I’ve been prescribed. It’s a balance, I hate the mind numbing side effects of all these anti-seizure or psychiatric drugs! Unfortunately my pain has reached a new intolerable level and has spread to include other areas of my skull. New pain includes extreme pressure in my temple, new triggers are behind my ear, back of my neck/head and an odd one on my front collarbone.
The new neurologist want to prescribe ether lamotrigine or carbamazepine.
Please tell me your experiences with these drugs.
Thank you!
Hi ML1
You might try an appeal to your insurance company to see an out of network neurologist at in network copay that has a TN2 sub specialty.
I find your statement about new triggers interesting. I developed pain in the areas you mention. I am being treated for GPN.
Meds don’t seem to be a 1 size fits all.
Whatever works without making you a zombie!
Disclaimer: I’m not a doctor!
However, TN and ATN (or TN2) are not the same and there are major differences, one of the biggest ones being that ATN tends to respond to pain meds when TN does not. Have you tried pain medication?
I have ATN and did great on lamotrigine for seven years. It would even say it helped put me in remission for the majority of that time. I had very mild flare ups or uncomfortable days only, none of the blinding pain. The only side effect I had was ringing in my ears, which I was able to ignore. I started having problems with my jaw joint feeling like it was dislocating during flare ups and so upped the dose of lamotrigine which then put me into more serious side effects of muscles cramps so I had to come off it. I should have never messed with that med, it was working great for me!
I also use a lidocaine patch along the nerve branch in my face for pain control and because I have ATN it’s been working great. In fact, I can’t say enough good things about it. I would say it’s worth trying. You can get it at 4% strength OTC or at 5% strength with a prescription although it’s an off label use for the prescription strength and might need a prior auth.
Try trileptal or oxcarbazepine.
I am so sorry for you.I have just been given a neuro with 2 years of experience-in anything.Keeping up my hope.
My family doctor actually wrote a note to a neurosurgeon saying I had TN and when I tried to get him to change it to say TN2 he said they were both the same.The neurosurgen corrected him and now my family doctor does not mention that again.maybe your old doctor or someone like a neurosurgeon can correct the new neuro.But scary that is.
I am with the person who suggested an appeal.If your case is not worthy-I do not know what would be.
It’s like they want to all disappear.
I had no luck with carbamazepine.Severe constipation and no help with the pain at all.
Wishing you wellness.
Yeah, I actually started on trileptal. It got the onset under control and then gradually stopped working over the course of a year or so. That’s actually my back up drug should I start having major issues again. I’m doing really well with a mix of gabapentin, depakote (which I take for migraines but it seems to adding to the ATN control) and lidocaine.
---- Brainwave ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ wrote:
Carbamazepine works fairly well for me 200 mg 4 times a day. It does not mess up my thinking or make me zombie like! I cannot take a higher dose as it may be effecting my sodium causing it to drop to unsafe levels. I also take neurotic 1 time a day - any more than that messes with my head. I still get pain but am able to function sometimes better than others[quote=“ML1, post:1, topic:14150, full:true”]
I have had TN2 since a 1998 surgery to remove a Trigeminal nerve brain tumor. There is constant hypersensitivity, burning and electric shock pain in my left face, eye, teeth, cheek…everything triggers it. I’ve been prescribed so many different meds with their varying side effects that I’ve lost track. My medical insurance has changed forcing me to see a new neurologist who has never had a patient with TN2…she says it doesn’t mater that TN1 is the same. I doubt that. For several years, working with my old neurologist, I’ve chosen to take neurontin or gralise, they are only partially effective for pain but leave me less foggy headed than most of the other meds I’ve been prescribed. It’s a balance, I hate the mind numbing side effects of all these anti-seizure or psychiatric drugs! Unfortunately my pain has reached a new intolerable level and has spread to include other areas of my skull. New pain includes extreme pressure in my temple, new triggers are behind my ear, back of my neck/head and an odd one on my front collarbone.
The new neurologist want to prescribe ether lamotrigine or carbamazepine.
Please tell me your experiences with these drugs.
Thank you!
[/quote]
strong text. I wish you well - Vicki 9
sorry - first time doing this ! should be neurotin ( gabapentin ) not neurotic! sorry also as I somehow copied your post . Wish you well Vicki 9
Carb… is Tegretol and the only drug ever given an indication for treating TN.
I use it and find I often go up and then down to get my pain lower than 5. I am post MVD and at 5 years with it. No constipation, a little memory fog on the name of something and hardly at all at 100 mg twice daily.
I have been told I cannot tackle the pain completely but my neurologist is aiming for 3 or less. Not there yet. Started to add hemp oil in a coffee twice daily which has less than medical marijuana. the latter not legal here. I’d have to say it helps take away bad surprise stinging. Good luck! We all respond differently so it may be hard to compare.
Your insurance company could be reported to your State Insurance Board for making you switch physicians, etc. That is overstepping their role.
I live in Canada so no insurance people involved.However ,my last doctor,who was supposedly the go to guy for my problem has a couple charges against him and can not practice until they are cleared up.And because he has been doing pain control for decades I doubt he will go back.Move to the States like all the good ones.
Dr David King Lam is another one who flew to the States at the beginning of the year.
He prescribed my topical-do not know who else will give me ketamine.
I take 1200 mg of generic trileptal , if I stop taking it I am in deep trouble the pain gets insane the nerve starts firing like crazy.
prolly no one. Prescribing Special K which is a highly addictive hallucinogenic outside of a clinical/hospital setting is pretty much a big no no. Just about all the ketamine clinc operators in the US are serving hard time… Dunno about Canada.
I don’t know.I use my topical very sparingly.
I actually find the peppermint essential oil to be better for my pain.Just it seems to eat my skin.And watered down it does not work at all.
Since I am going to my new neuro next week can you suggest a topical that seems to work for people with the non stop burning-rip your face apart kind of pain?
I did have a dental specialist who I went for a consult write me a prescription for it-so I could get it done-but maybe a new topical would be good and maybe this new doctor would appreciate suggestions,as she is new to the field
The doctor who prescribed it is now in the States because of all the politics in Canada.Boy,is he in for a surprise.
I did run into a couple guys who I worked with the day I picked it up and showed them my Special K party drug.Along with my toothless grin.
I’m a huge fan of lidocaine patch. In USA you can get 4% OTC or 5% by prescription.
I cut an inch wide strip and run it along the nerve branch giving me trouble. Since it’s such a small piece and the directions to wear it 12 hours on 12 hours off are based on wearing the max of 3 full patches I wear strips around the clock (with MD and pharmacy approval) with huge success.
Im surprised you’ve been able to get ketamine, that usually in patient hospital and surgerical. And its super dangerous. It really suppresses breathing and blood oxygen levels. Be really careful with it!
Hi there ML1. Sorry to read of your long-term suffering and the terrible, terrible time you’ve been having. I am becoming like a broken record saying this (I repeat it over and over), but the only thing that has ever really helped with my facial pain is Paxam. It’s has amazing neuropathic pain properties. Some docs freak about it because it’s a benzo. It’s truly amazing for the constant burning. I cannot tolerate all the usual anti-seizure drugs, other than Epilim, as they turn me into the Shaun of the Dead routine - ie, a zombie. I did do about 8 years on opiates and ended up with chronic rebound migraine, in hospital on ketamine for two weeks. Got off the opiates and on to Paxam. Praise be! Like you, my pain spread outwards as the years have worn on. Grrrrr. I have GPN. One failed MVD. I know that very short acting ketamine in a non-hospital setting is used occasionally in Australia. I hope you find something non-Zombie that works. The last thing you need is the joy of insurance companies. Paxam was my only non-Zombie resort. Why not a really good pain management specialist rather than a neurologist?? Good luck. Good luck and big hopes and wishes coming your way. x
ML1, I read that you had a brain tumor that caused your TN. Did your brain tumor reappear ? Is the tumor sitting on your brain stem or further up in the pon? I had a tumor removed in '97 and it returned,hence radiation and a rizotimy done in 2014. I can hear your frustration. And I am well acquainted with pain. I can feel the pain coming back so I am again on two tegretol a day. At my age another operation would be too risky. The itching and numbness is still present but the idea of the pain returning is more stressful. My neurologist will change on up my meds next step. Praying for your relief of pain. Gloria37