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Living With Facial Pain

Is my neurologist crazy?


#1

I went for a follow up with my neurologist who originally diagnosed me with trigeminal neuralgia, which was then confirmed by another neurologist at Beth Israel in Boston.
Long story short, today, my regular neurologist increase my medication although I am feeling much better. He believes that by increasing the medication it will completely cure my TN. He feels that TN is caused by a virus and with the use of Oxcarbazepine combined with Alphalipoic acid (which cures nerve damage) I should be completely cured. This sounds fantastic and if this happens I will be sure to share with you all. However, based on everything I have read it seems a little strange. What do you guys think?


#2

Hey llipetri,
What do I think? Well, in all honesty, what have you got to loose by giving that treatment a chance? During my ‘So what is the problem?’ stage, I had some dr’s give a whole range of diagnosis’ (one being TN) and want to try a bit of everything. As far as I was concerned I didn’t care what they wanted to call my pain “JUST FIX IT!!!” One diagnosis was migraine and I took a whole range of migraine meds. Another was an issue with blood flow and I was given all sorts of heart meds. Then there was the psych diagnosis and given uppers, downers and just yuck. Then there was the epilepsy meds. Botox was next, with 15-20 shots in my neck, back and forehead every 6-8weeks. I found this very painful, very painful indeed and was thinking “WTF and some women get this stuff in their face for cosmetics?? Madness IMO” LOL . Seems for cosmetics they tend to give a local anaesthetic, but for neuro treatment they don’t. ???
Unfortunately, none of these treatments worked for me, but that’s another story.

I think for some conditions the treatments may seem a little unconventional and for those of us who have to manage symptoms, if it works, who cares. If someone told me standing in the corner on one leg, facing north, singing the national anthem was the key, I’d do it. ANYTHING to take the incessant pain away.
By the sounds of it I’m similar to you in that initially I read up a bit of everything via ‘Dr Google’. So many ideas, so many treatments, but very little hard evidence. The end result being utter and complete confusion. IMO Dr Google can assist for set conditions with set symptoms, outside of that there can be just too much info. Seems every case is different so what works for patient ‘x’ has very little correlation to what works for patient ‘y’.
So what is your key? It may well be Oxcarbazepine combined with Alphalipoic acid. If it works, that will be magic. If not, what’s the next combination? If someone suggested an option, an idea or even a guess, I tried it.
One thing here that I will say is this:- Often it takes time for a therapeutic dose of a substance to build up in our system to have a therapeutic benefit. So it can be a long drawn out process to try the differing options, but if you can find your ‘key’ that works for you, it can be life changing.

IMO, JUST DO IT!!! (as the Nike ad says) and best of luck.

Merl from the Moderator Support Team


#3

I think it’s a little crazy but in a good way.

See, the thing is, even if TN is caused by a virus in your case (much like shingles or herpes attaching to nerve endings I would think) the pain of TN is caused by damage to the nerve and no one really knows how nerves heal.

Curing the virus to stop additional damage? Fantastic! But I don’t think curing the virus will “cure” the TN because TN is fundamentally nerve damage and no one understands how damaged nerves heal or how long such healing will take, if it happens at all.

I would err on the side of caution and tell you to absolutely go for it but don’t give up daily pain management.

azurelle


#4

So i have been down this rabbit hole of viral causes as well. In my case there is a strong indication that thats is whats happening. However, the only viruses that i know of that can cause damage to nerves are the herpes family (including shingles) and there are actually antiviral medication targeting these. For example i was taking famvir up to a few days ago until i had a bad side effect. Hard to say if it was helping or not.
Anyhoo, if he believes viruses caused your TN i would ask him what is his reason for thinking that? (did you have shingles?) and if he really believes it he should give you an antiviral (never heard of people being given ALA for a viral infection).

Having said that, if other neurologists heard what your doctor is saying, they might think he is crazy :smiley: I wonder if he has treated any other TN patients.


#5

This is something I have looked into as well and do believe there is some connection. I often get flare ups of herpes simplex at the same time and in the same location as TN pain. And the virus lives in the Trigeminal nerve so who is to say it cannot cause symptoms without a physical flare up? And then if you look at Shingles and the neurological pain it produces I think there is a correlation. Not enough research has been done but I have met others whose doctors have focused on viral treatment. I think there are probably numerous causes for TN. We are all very different.
Whether we like it or not we are the “guinea pigs” for research with facial pain. There is so much that is unknown. I also say what have you got to loose? At least your Dr is being proactive and looking for alternative treatments.


#6

I think your neurologist is full of it! Most are when it comes to TN. I’ve had TN every since I got a tooth pulled in 2013. There was no virus. It was caused by a lazy, greedy dentist. I must say that. He told me to “take what I take for a headache.”

TN for me today, this moment, is nowhere near as bad as it can be. I have been in and out of remission over the years. Currently, I get episodes of pain in the early morning which wakes me from sleep. I wish a doctor could/would tell me what triggers the episodes.

I took Gabapentin for about two years . I did not help , so I quit taking it. Today I rely almost exclusively on Medical marijuana with high dosages of CBD. I’ve also found that certain cannabis infused gummies held under my tongue help me to deal with the pain and get back to sleep. I also use a cream and oil by the name of Neuragen.
I quit seeing the neurologist when he said that he did not believe that the Neuragen was helping me. I hope one day he gets TN…(from a visit to a dentist or a virus)…
Neuragen products are prescribed for people with diabetic nerve pain in their extremities. It helps me, I know that. I rub it into my face along the left jawline.

Like last night, I was awaken about 1:30 AM with pain in my jaw…Burning, stabbing, kind of pain. I smoked a joint of “White Harmony” (high CBD) . Half way done the pain began to subside. I put another small gummie under my tongue and the next thing I know , I was waking up this morning pain free.

And I thank God for waking me up at all.

Best wishes to all who read this. I hope you appreciated the comments. I appreciate yours.


#7

That boy is CRAZY.It’s due to the trigeminal nerve being rubbed by the artery in the skull. An MRI will usually show it. And it is NOT a virus! Good grief, get to a new Nuro asap this one is not going to do you any good at all.


#8

Now, now everyone…

There is no single cause for TN. It can be from any trauma to the head, artery pressing against the nerve somewhere, it can be something you’re born with (although this is thankfully rare), it can be a secondary condition caused by a primary issue (in my case, they think 30+ years of migraines has damaged the nerve somehow). Or, it could be from a virus, there’s very good evidence of shingles causing nerve damage elsewhere in the body, there’s no reason to think the TN system would be excluded from this.

At the end of the day They Do NOT Know what the root cause is. It could be from over exposure to the full moon on Tuesdays (just kidding, but you get my point).

Please be sure to be nice when discussing all the options and opinions out there. We’re all in a great deal of pain and we all get testy.

azurelle


#9

@azurelle is the voice of reason as always! i couldnt have said it better. There are multiple causes for TN, some are well understood and some are not.
But i looked in the book “Striking back”, there is a lot of information about Shingles causing TN and Post Herpetic Neuralgia. If you look in the index there is also a lot of information about the popular antivirals like famvir and valtrex.

There are people who got TN from cosmetic surgery, dental work, MS, brain tumors, accidents, one guy here was beaten up and developed TN, there are those who have atypical pain and classic pain and neuropathic tn etc. This is a very multifaceted disease. Let’s not be dismissive of people trying stuff :slight_smile: I tried antivirals and they helped some but i had to stop due to the side effects. I am going to get on a new month when i see the doctor in a month.

Good luck to everyone and hope we are all free of pain :slight_smile:
H


#10

That’s absolutely fascinating, llipetri - I’ve never heard of that; one to add to my research list. As others have pointed out, there’s LOTS of reasons for TN, not forgetting that you may have a combination of reasons. Illness is often far from clear-cut. In my case I think my TN was caused by B12 deficiency, and I am not the only person who has had this. The deficiency causes nerve damage and, of course, although it more commonly happens in arms and legs, this is a human body and bodies don’t read medical books, so any nerve is fair game!

But I’m going to look up Alpha lipoic acid now. I’m having me some of that, if it’s legal and obtainable here in the UK, so thanks for the tip. Best of luck with your new regime - hope it works for you.


#11

I haven’t been on in a while so I hope it’s ok To jump in. The thing about TN I have learned is that what is classified as TN is evolving. Like other headache type disorders it’s a term that can mean a lot of different things depending on research and current knowledge. I’ve been dealing with mine for close to 10 years and just when I think I’ve landed on something that works the pain changes and new things happen. My neurologist joked that he’s decided I have TN type 3 because I’m not fitting any one thing. My point here is this: try whatever it is your doctor is suggesting. We now know many cancers are caused by viruses so why not TN. As long as you’re monitoring carefully the worst that will happen is you find it doesn’t work for you. Maybe it will work and you’re better off. Who knows, it could happen. If not you’re no worse off than you are right now you just have more information.


#12

Hmmm, this virus thing is making me think. I got my TN from dental work. I got a cavity filled by a dentist that was in a hurry to get home, he was heading to Hawaii (I’m not kidding) In trying to talk to him I jammed some kind of metal thing into the tooth. 6 months later I was having a root canal in the same tooth. There was an infection that maybe seems a virus? Could I take anti-viruls ? Or is it just wild hoping?


#13

There’s been a study in the UK about root canals causing nerve damage, I can’t find the exact study I’m recalling right now, but, if you do a search for root canal and nerve damage tons of info pops up, a sample of which is below:

Damage to the inferior alveolar nerve may also be caused by wisdom teeth extraction, or could be the result of poorly placed dental implants or the overfilling or overworking of a tooth during a root canal surgery. … If the mental nerve is damaged , it could cause sensory paralysis in the lower lip, or extreme pain.

Might be worth doing some research along those lines, if only for your own peace of mind.

azurelle


#14

I’m with you on this one. TN has many causes. Mine along with yours might have been caused by the many years of migraines. I only had a week to a week and a half with no migraines per month for too many years. The migraines finally left and the ATN appeared. Unfortunately there is no nasal Imetrix for ATN to get relief🙁 As for me, I would be tempted to try anything that was financially feasible to get a bit of relief.


#15

Lots of people have TN and there is not a vascular body on the nerve. Also lots of autopsy records show people have trigeminal nerves that have vascular body grown into the nerve, yet the person never experienced trigeminal pain.
doctors are guessing and thats why MVD works for some and not for others. I believe neurotoxins such as herpes is stored dormant in the trigeminal nerve and very well could be the contributing factor in SOME cases. Personally, my blood brain barrier was greatly effected by brain surgery, and if I eat processed food or take medication with neurotoxins (all), my brain and trigeminal nerve are effected for the worse. If trigeminal neuralgia was as simple as you say, it would be an easy fix.


#16

Click Me!

DIDn’t say simple. Said USUALLY. ANd it is not a virus got it? K have a good day!