Hi everyone, from Bev in Oregon

Welcome New Member Introductions
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Hi all,

Before I introduce myself, I want to say thanks - I’ve been lurking for a bit, and have found so much help and encouragement in the posts. So thank you!

This has gotten really long, so here’s the executive summary: I have TN1. I’m on Tegretol XR and am scheduled for internal neurolysis surgery at OHSU in April. I’m married, have two cats and a dog, and work in administration at a university.

My “development to diagnosis” story is typical. It showed up almost a year ago while I was eating a sandwich, a sudden sharp pain. I continued to have pain when eating, etc, so assumed I had broken a tooth or a filling. So off to the dentist, who did x-rays and assured me that my teeth were fine. He thought it might be caused by seasonal allergies (note that I live in Oregon - so much blooms here in the Spring that they should just put allergy meds in the water). I was thrilled that I didn’t have a broken tooth or filling… :roll_eyes:

The short version of the rest: dentist, doctor, antibiotics, two month remission, back with a vengeance, doctor, NSAIDs, doctor, way strong antibiotics, doctor, diagnosis.

My main trigger is temperature, especially cold food/drink. Chewing, talking, etc… the usual. My attacks last longer than the “few seconds to a few minutes” - can last up to two hours. I think it might be multiple attacks in a row / building on each other. Happens in all three branches of the nerve, the middle one is the worst. Like so many whose posts I’ve read, it made me despair - what if it didn’t go away? I can’t think or move, let alone live any kind of life, in that type of pain.

I’ve been on Tegretol since diagnosis. It mostly controls the pain, but has given me a laundry list of side effects. It stopped working as well over the last couple of months, but I haven’t increased the dose - while the pain has gone up, the brain fog has decreased, and I really hated feeling like a zombie.

The super-duper-high-res-3D-MRI-and-MRA done by OHSU does not show any compression. It shows a vessel that dips down and maybe grazes the nerve before swinging back up. So that’s why I’m having internal neurolysis.

As to why I’m having surgery this soon, before trying other meds, etc… I’m 39. I’m approaching this with the expectation that I’ll live another 50 years and that the TN isn’t going to go away. So I have to plan for 50 years of treatment. The common factor in TN treatments is that they usually don’t work for a long time, so I will probably have to use them all at some point. I’m thinking of this sorta like a game of tetris, with each treatment being a block and the screen being my lifespan. I know, I know, people make plans and God laughs. But not making a plan doesn’t seem any better…

Anyway, of the treatments, the brain surgery one is most likely to be off the table in my future - it has the most pieces that need to align for it to be a viable option, and those pieces are all aligned in my life right now (decent health insurance, a job with enough sick leave etc, supportive coworkers, good neurosurgeon, good health, and young enough that surgery isn’t risky). And my husband works for himself, from home, so is able to care for me afterwards.

So that’s the long and short of it. Thank you again, for this site and the posts on it. I felt very alone, having this at my age, but this site has helped immensely. :heart:

1 Like
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Welcome Bev! Glad you decided to join the conversation. I find I must give you two thumbs up for the comment:

“I’m approaching this with the expectation that I’ll live another 50 years and that the TN isn’t going to go away. So I have to plan for 50 years of treatment.”

If only more people took this long view with such a level head it would no doubt save a great deal of angst and heartache! Keep us posted on how you’re doing and what you’re doing – it sounds like we could learn much from you.

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Bev,

You mentioned you will have internal neurolysis surgery; if i understand that correctly, that is a procedure to remove scar tissue from the nerve? You mentioned high definition MRI did not show compression, was there a definitive diagnosis of scarring?

Also, my wife/I live in Beaverton as well. She has had TN for over 10 years. We moved here just over a year ago, and she met a wonderful neurologist here who specializes in TN. She is on a med protocol now, and has been pain free for almost a year. My wife was very resistant to medications for a long time, but after MVD and many other attempts at remedies, this change has been an enormous relief.

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Hi Bev.
You long term perspective is impressive. I had a very similar situation as yours. Sounds like the allergic reaction triggered this ladt attack? Same as me. I started getting allergy shots to head off spring tree pollen (my big problem) and that has helped me a lot. A women in our support group had done the same with good results. Might want to try that, even if the allergist says your allergies don’t warrant shots.
You will beat this beast! Good luck.

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Hello Bev
Just read your story you might be interested in mine. Check out mcgranny.blogspot.com “Trigeminal neuralgia lead to victory” it might be worth trying vitamine B simply that…read my story please before you do anything!! God bless!

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Hi Sean,

I don’t think they saw scarring on the MRI, but the internal neurolysis has been successfully used to treat TN without compression by my surgeon (Burchiel -https://thejns.org/view/journals/j-neurosurg/122/5/article-p1048.xml). I believe it is one of those things that works but they don’t know for sure why it works.

And :wave: welcome to Oregon! So glad to hear that your wife has finally found treatment that is working.

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Hi Gilbert,

Thanks for your words of support. Might have been allergies that initially triggered it, I’ve wondered about that. The dentist mentioned the allergies because he saw a “bit of cloudiness” at the bottom of my sinus on the x-ray. Fortunately, Flonase tamps down my allergies pretty well - but I will definitely consider getting allergy shots.

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Sounds like this is quite a bit less evasive than MVD? I’d love to hear from you regarding the outcome, do you mind if I reach out again in a month or so?

Wishing you the best of luck!

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Hi Muffet,

Read your story, I’m so glad to hear that you are no longer in pain. I already do take those vitamins in fairly large doses, and have my levels checked regularly: Years ago I was having numbness/tingling in my fingers that turned out to be caused by a vitamin B deficiency (the doctor thought I probably had carpal tunnel syndrome, but thank goodness she checked this as well). When I started taking them, the relief from the numbness was very similar to your experience - it happened so quickly that it felt like a miracle! It is amazing how quickly our bodies can respond sometimes.

But yes, definitely vitamin B levels should be on the list of things to check for most neurological symptoms, as it is necessary for nerve function. Folks who are vegan or vegetarian are more at risk, since the typical source is meat.

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Unfortunately it is just as invasive as MVD, but it doesn’t rely on the presence of a compressing vessel to work and typically lasts longer than the less invasive options.

Yes, definitely feel free to reach out again in the future. My surgery is scheduled for April 3. I’m thinking of journalling it, since other people’s surgery journals have been so helpful to me. Just can’t decide yet what platform I want to use - Wordpress, twitter, etc…

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Hi Bev - you are not alone. I am bilateral TN type 1 and have had one MVD on each side (2012 and 2014.) I still have flares but nothing at all like I had before my surgeries.
No one but those of us with TN will ever be able to understand the kind of pain you are living with. Please lean on us and reach out, it will make things much easier as you go through it all. I have learned that other people who have had brain surgery for non TN reasons are also great resources and offer a solid understanding for post surgery.
Brain surgery affects your whole brain, not just the area that is operated on.
Wishing you only the best - my two MVDs saved my life!

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Hi Azurelle,

Thanks for the welcome and the kudos. I don’t usually feel like I have a level head about this… I have lots of times where I’m just angry or sad or both about the whole thing, followed by feeling guilty because “other people have worse things and so I should stop complaining.” Less so now than when I was first diagnosed, fortunately.

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Hi Lee,

Thanks for the support. Having this become bilateral has been a fear, and your story helps - it is a reminder that if that happens, I will deal with it and find solutions, just like I’ve done with the single-side version.

Definitely agree about non-TN-brain-surgery folks being great resources. My coworker had brain surgery several years ago for a tumor (benign, fortunately). They were not able to remove everything, so she has to take Parkinsons drugs to keep it from growing, and has an MRI every year. So she has already been a great person to talk to when I’m frustrated by the med side effects, and thanks to her I knew exactly what to expect when I went in for MRIs. They did her surgery through her nose - which to me sounds worse than having a hole drilled in my skull!

I’m also really enjoying the opportunity to make lots of dumb jokes about how I need brain surgery like I need a hole in my head :grin:

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LOL that is a good one (like a hole in my head!) I say my scars are now matching and symmetrical. Yes it was a heck of a shock to go under again a second time. But the flares are manageable now. Physical therapy made a huge difference both times - especially with being able to turn my head again, and overall recovery. You are strong and you have humor - and you have me :wink:

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Just reaching back out to see if you had the surgery, and how did it go?

Tx

~Sean

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Hi Bev,
Your symptoms sound similar to mine in a couple of ways. In my years of treatment, MVD, gangliofacial nerve block, glycerol rhyziotomy, occipital nerve blocks, tegretol, tryleptol, gabapentin, baclofen, dilantin, depokote, cymbalta…among only some.

Of the most promising is a chiropractic treatment that focuses only on C1 otherwise known as nucca treatment www.nucca.com for directory of providors. However for me became costly. I’ve also begun working with a very high quality dentist again for a mouthpiece as I’m believing much of what I experience is alignment related.

Hopefully this helps me and you too.

Andy

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Hi - sorry to take so long to respond. I have had lots of vertigo and nausea since the surgery. It has diminished enough that I was able to start working some, but have mostly limited my computer use to what I needed to do my work.

I started a blog prior to going into surgery. Once I’m able to use the computer more, I’ll update that and then post the link here.

The main thing - did it work or not - unknown at this point. I just started tapering off the tegretol last week, so I should know fairly soon. I’m anxiously hopeful.

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Would you mind sharing your blog URL so that I can follow?

Tx

~Sean

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Sure: http://cranialv.com/