"The true prevalence of trigeminal neuralgia is unknown because there have been very few studies

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The title of this Blog is pretty much what I come across in all my research, the wording changes a little here and there. Of course they always mention the possibility of compression, or MS, tumors as POSSIBLE causes, and yet there is still NO definitive cause for TN.

Trigeminal Neuralgia, tic douleroux, has been around for many moons…it is often classified as Suicide Disease, and
described as THE WORST pain possible
And yet…
Where are our TN studies? Where are the up to date research
papers? The telethons on TV? The big promotional “runs,
walks” to raise funds? Clinical trials?
Ok to be fair there are some studies, clinical trials, BUT you
are hard pressed to find anyone looking for a cause…

Not to mention the fact that most front line medical professionals AND specialists have no idea that TN is not just for the over 50 crowd, bilateral is NOT that rare, they still use info they learned 20 yrs ago in med school and have no idea how to treat.

Am I venting?? Hell ya!
How am I supposed to make an educated decision about my continuing TN pain that is becoming harder and harder to treat with meds? when there’s no definitive cause for TN???
How does this ALL make sense?

Oh I’m leaning towards MVD. It’s a personal decision, but I’m
still struggling with the concept that my TN “may be caused by
compression, may be not?” huh?

We all have enough to deal with just getting by day to day “living with TN”

Today, I’m just really really angry that we STILL don’t know what causes TN, we are all just grasping at straws, hoping that by doing -------(insert treatment here) we will get relief or be cured!

How can we be cured, if we don’t have a cause?
How can any one of us live peacefully not waiting for the other shoe to drop and worrying about the pain coming back after we’ve experienced some relief?

Today, I’m just angry.
No need to respond, I just needed a good 'ol VENT session!

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I have not done the extensive research you have, but it seems that there are multiple causes of TN. If compression is the cause, then it makes sense that MVP might be the obvious treatment. Mine seems to have come on the heels of periodontal surgery, so one would think compression is not the cause, most likely the nerve sheath was nicked or the nerve was stretched to the point of being damaged. That is why I can’t imagine MVP being the answer for me. Looking at my smile though, it looks like there has to be some compression there. I do agree with you, how can one make a decision about treatment when the cause, which no one can give you, might dictate the treatment. I stay confused …

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BTW get your anger

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Hi Mini, I always enjoy reading your posts. I also get very frustrated when you see people raising monies for health charities but never this one! Here in the UK we have game shows where there prize money goes to a charity and of course this is never mentioned or just one for chronic pain, it seems to be forgotten about. I have added a link for hope into research today elsewhere in case you have not read it previously. xxx

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Can I get an AMEN!?! Especially on the lack of knowledge in the medical community. I consider myself very lucky the doctor I saw when I first had symptoms had another patient with TN, so she knew what she was seeing. And I've seen other doctors who had heard of TN but didn't believe bilateral existed. That's kind of like not believing in gravity. You can't see it, but throw and apple in the air and watch what happens. Most people don't have that experience. They go to many specialists until one day, months, often years later, someone connects the dots. This is not ok.

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I am suddenly feeling queasy. And I jest not. Have just read how MVD is done. I was beginning to consider having MVD - IF - I can find a neuro in this country capable enough of doing one. Spicywolf is right. My experience has been similar in that many don't believe it exists. I was so so so fortunate that there was one Professor of Medicine who has nothing to to with neurology who believed me and understood and through him I was "boarded" from work. Pukka neurologists just did not give a damn. I have written so much about this I am getting sick of hearing about it. The pain is now going beyong unbearable and the meds have been taken are no longer as effective as they were in March to plus minus Sept Oct this year. I am now having to rely on injections from my husband to relieve the pain but that is becoming almost a daily occurrence and I worry what happens if that is no longer effective. Sometimes I pray that I will close my eyes at night and just simply not wake up in the morning. I can't face much more of this. Have written to Red to ask if he can refer me to a specialist in Pretoria or Johannesburg.

Love

me