Attack of trigeminal neuralgia OMG

[essdipity]

For several days now I've had excruciating facial pain. It's all on the right side, and covers the lower cheek bone across to the ear, upper and lower teeth, and lower jaw and gums. Not all the time, and not all these places at once. There can be horrible pain in one tooth, as if a dentist hit the nerve, or it can move down the gum, etc. These are the acute parts, and can last for several  minutes. Sometimes the pain subsides to a very bad and long-lastimg ache, but that's much more manageable than the other.Then it goes away altogether, until....

I don't have a sinus or ear infection, I don't have TMJ disorder, and a few weeks ago I had a dentist appt when x-rays were done. My teeth are fine. I told all this to my neuro, and he agreed it's TN. He faxed a script for Tegretol, but the pharmacy had to order it and it won't be ready till noon today.

There have been many discussions about this over the years on the forum, though I don't remember any recently. Have I missed something? Any current posters have TN? It definitely can be caused by MS. I'm starting to wonder whether Tecfidera is effective for me. Been on it about 10 months. A month or so ago my long-term burning paresthesias spread and got worse, which may or may not be significant, but now this, the most agonizing pain imaginable.

My Tegretol prescription is for 200mg twice a day. Is this a low dose? I usually need megadoses of everything :-(

ess

[immisceo]

I've heard that TN could be used to extract state secrets, it's that bad. I'm so, so sorry you're experiencing this. I've not had it myself, but I've looked into it enough to know I never want it.

I'm afraid I'm a wash-out as far as Tegretol doses go.

As for Tecfedira, you know yourself the goal is fewer relapses than would have been experienced without the DMD. Did you have an MRI right before you started? It might be the only way to really judge efficacy. I just mention it in the sense that it's always difficult to gauge what we're experiencing compared to what we *might* have experienced otherwise. Put bluntly, this could be the version of this disease that IS better than what you might have otherwise experienced.

But don't think for a moment I'm recommending a grin and bare it approach if you truly feel you've done your time with this drug. We all have to stay flexible when it comes to so many things, meds included.

I don't know your time zone, so I can't do the maths, but I'm still watching that clock for you and willing noon to hurry up. Hugs to you, Ess.

[Corriel]

Oh you poor thing! I have heard the horror stories abou TN pain. I hope the Tegretol does the trick and does it FAST!!

No personal experience with TN but having been on Tec for 14 months I get why you are starting to question its effectiveness.

I had a potential MS flare earlier this year. Neuro is on the fence as to whether or not it was MS or something else. I have since developed paresthesia and after a month of being in a large area it has settled into a smaller area where it has remained pretty much constant after 3 months.

Interestingly my MRI in Feb showed no new lesions so who knows?

Between your paresthesia and now TN, do you think you are experiencing a flare?

Best wishes for speedy pain relief,

Corrie

[doublevision1]

Sounds just awful, Ess. I was also thinking a MRI might be a good idea. In the meantime, have you considered a round of IVSM?

[essdipity]

Thank you all for your kind words. I picked up the Carbamezapine  (generic Tegretol) and took the first dose over an hour ago, and so far, so bad. Don't know how long it takes to work or whether it has to build up to be effective. Here's a good one--these are to be chewed. Great idea for people with face pain, especially those for whom eating and drinking anything seems to be a trigger. What's wrong with this picture?

This morning after I ate some cereal I was in pain but thirsty, so I thought some ice water might help, cold being good for dulling pain and all. Wrong! Yikes. I think I'll need to buy some straws to keep from getting dehydrated.

I had MRIs in March of this year and last. Both said there was nothing new, but I really don't know how they can tell. On both sides of the ventricles, extending the whole way and beyond, there's nothing but non-enhancing lesions, totally overlapping and 'confluent,' as the saying goes. Last year I had a big relapse that lasted from January through about April or maybe May, so they didn't want to start me on Tec till it was really over, and that was in late July. I had bad gastro effects from the drug when I got to the full dosage, so I was stopped and restarted in September (at a much slower rate). That worked fine and without side effects.

Now I'm wondering about 'front effects,' as I like to call them, meaning

[essdipity]

Darn, this new computer is a bear.

Anyway, by front effects I mean what the drug, any drug, is supposed to do, that is, fight off whatever. I doubt my neuro would go the MRI route again so soon, and I can understand why, really. As to IV steroids, I've had 2 courses in the past, and they didn't help much, but if this med for TN isn't effective I'll start asking for another round

Corrie, yes I think this is a flare. It meets the definition precisely. I also think what you describe is a flare for you. You don't need new or enhancing lesions for a flare.

Immi, I'm in the eastern US time zone, so 5 hours behind you, I believe. Thanks for the good vibes.

ess

[Sailorsong]

From what you described it sounds like a mild bout of TN to me, at least from my experience. I've had it twice and each time the entire left side of my face from cheek bone to lower jaw and every tooth (upper and lower) including the missing teeth hurt at a 10 out of 10 level all at the same time with no let up for a week. So maybe your med is working?

  The only way I survived the TN was that I took some hydrocodone even though it really didn't touch the pain it did knock me out for 6 hours at a time. I slept 24/7 for the week except to eat and bathroom visits. I have heard someone say TN is also known as the suicide symptom and from my experience I would believe it.

[supermum_ms]

I'm so sorry your experiencing TN.......HUGS!

I've been told I have TN and or TMJ by different types of doctors and dentists over the years, lots of disagreements and changing of which but i've also been told that i actually have the typical pattern of both.

The TMJ goes way back to a childhood surgery and jaw misalignment, every surgery, throat check ups, dental visit etc. My TMJ symptoms are classic,   basically anything that opens the jaw wide is a trigger, my jaw opening is smaller than it should be, bite is off, jaw pops out of alignment, jaw continually aches from the hinge, jaw movement is stiffer etc

The TN was never pinned down to a known origin, just another of my idiopathic dx collection, TN from my experience is definitely different to TMJ! TN pain is incompatible, sharp lightning strikes, each hit doesn't last long but it does come in wave after wave of indescribable nerve pain, which stops when the hell it chooses too.

The left side of my face has the TN (mandibular V3) nerve pain, but weirdly it's the right side of my face that has the odd patches of paresthesia which I hadn't realised actually runs along the maxillary (V2) nerve    

Cold wind is one of my TN triggers but the first time it was triggered by air travel was an unexpected shocker, it's still vividly in my mind being stuck between two people on a 6+ hour flight and in so much pain i wanted to rip my face off. I've never had a good time with pain meds, can't even remember what i've had prescribed over the years. I do recall the first TN one i tried did help the pain 'a lot' but the side effects always makes things worse, the pain knocks me out which truthfully i'd rather when all is said and done...

TN Information:

This is a really good book on TN and it goes through differentials, meds, myths etc and well worth looking at...

https://books.google.com.au/books?id=vAbU8rfb-OoC&pg=PA82&lpg=PA82&dq=distinguish+TN+from+TMJ&source=bl&ots=lI0RXl2iGz&sig=QMd0DkmDIUHaCuBBpXML3b8YzCo&hl=en&sa=X&ei=NmCLVaG-Kua5mwWkiJaACg&ved=0CDEQ6AEwAzgK#v=onepage&q=distinguish%20TN%20from%20TMJ&f=false

This is a really good teaching site with other very good anatomy articles, sometimes technical but easy to follow..

http://teachmeanatomy.info/head/cranial-nerves/trigeminal-nerve/

This page lists the TN types, basic info, images but it has other links on the site that are worth looking at...

http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
[oops i have others but can't get them up to get the links for you, sorry]

Hope it helps you a little bit

HUGS.........JJ

[essdipity]

More thanks for comments and suggestions. I've done some reading myself, to learn about the different types of TN. It seems a lot of what I have is the second, mixed with either the first or a very extreme version of the second. Apparently variations like this are possible.

Right now, at 5 am, a lower right molar aches very badly, and I can see why people go the dental route, since it does seem like a tooth problem. But the pain is not the full throttle kind I also get, the kind that brings me to my knees. I would hardly call that mild.

JJ, it does sound as if you have both TMJ problems and TN. Since the TMJ stuff is usually caused by grinding teeth/clenching jaw at night, maybe your dentist could make you a mouth guard to use overnight. It's a thought, anyway.

Meanwhile my Tegretol seems to be doing zilch.

ess

[HVAC]

It is going to take some time for the Tegretol to work. I have never had TN but have been on Tegretol. I hope it works. If it does not do not hesitate to ask for something else. I am sorry.

Alex

[supermum_ms]

There's nothing that can fix it, it's not a grinding teeth/ jaw clenching thing for me, it's actually another genetic hiccup passed down through my dad. My younger brother, my youngest and I all have 'some' hypermobile joints, Joint hypermobility syndrome which is more commonly known as being double jointed.

We're all different mind you, It's very mild in our family, basically unless a joint pops out of it's socket it's never actually caused any of us any major problems. My brother has the overly pronounced flex in his elbows, son's is shoulder blades, elbows and fingers, and mine is jaw, wrists, fingers/thumbs. I've always been flexible without trying and i've assumed i'm still as flexible as i am in part because of the hypermobility and all the years of ballet and gymnastics training I did throughout my childhood.

One bad fall not that long ago, my body ached in places i didn't know i had but I didn't realise my jaw was out of alignment again until going on two weeks later, lol only worked it out after i face planted whilst wakeboarding, I hit the water so hard I lost all vision for a few minutes but it was an instant cure for my jaw ache though and so worth it :D

TN is a different devil, it stops you in your tracks it's so painful i think you only start breathing again when it just as suddenly stops, it always happen's for a few minutes at a time and you can't know how long until the next lightning strike is going to hit you for six. I have actually unhinged my jaw when it's hit, that has  triggered the TMJ more than once but i definitely know which type of pain i'd rather be dealing with out of the two.

Again hugs, it's a beast and a half and i truly hope you get some relief soon!

Thinking of you.........JJ

[bbassel]

Omg you poor thing! I can't imagine the paiin you muuust be in! I am thinking of uyou and wishing it will be over soon! Big hugs
Barb

[shel67]

ESS.. I have nothing to offer you other then I'm sorry you are in pain. I pray it'll let up soon.

[karryon55]

That s_cks Ess and I'm sorry you are one of the unlucky ones to have what I've heard is torturous. As far as the Tegretol goes I believe it does take time to work which is probably not what you wanted to hear. :(

Cyber hugs coming your way.

Karry.

[kwarendorf]

Any better ?

[essdipity]

Contacted my neuro, who said I had to wait for the Tegretol to kick in. Now it's the weekend and my pain is close to a 10 24/7. I will call the neuro on duty, who will be some resident not familiar with TN, but I have no other choice. At least I won't be asking for a narcotic, since they don't work for TN anyway.

[Corriel]

Oh ess, I hope whoever is on call can help.

Good luck,
Corrie

[supermum_ms]

Oh Cr@p that is so not what you need, only thing i can think of is trying to knock your self out, a sleeping pill might give you a couple of hours, sleeping is the only true relief i get when it's happening, sorry that's all i've got, though some people say alternating hot and ice packs helps 'a bit' if you can stand the touch.

HUGS HUGS HUGS HUGS.........JJ

[essdipity]

Today makes 2 weeks of TN. I wouldn't wish it on anyone.

For me, Tegretol is a mixed blessing. My doctor increased my dosage, as 200mg twice a day wasn't doing diddly, even with various amounts of gabapentin added. But at 300, the side effects were crazy. I totally lost my balance and was staggering wildly. Had to go outside with my dog, and can just imagine what anyone looking would have concluded. In the shower I had to hold on to the walls for dear life.

So back to 200mg and on to IV steroids, which didn't start until this past Wednesday. Got in Wednesday and Thursday, but since Friday was the 4th of July holiday, that was it for the week. Now have Mon-Weds to do.

I'm glad to say that things are better. Still have some pain but it's considerably less. I don't know whether these next 3 infusions will knock it our completely (I hope I hope), or whether on the other hand, it will all come roaring back afterwards. I've had 2 previous rounds of IV steroids, 2014 and 2013, neither of which was particularly effective, but I'm hoping that this one will be different because it was started early in the flare.

Wish me luck, folks..I've been through the wringer with this.

ess

[Corriel]

Oh ess that sounds like a tremendous ordeal. I truly hope the worst is over and that the IV steroids do the trick this time.

Many gentle hugs,
Corrie

[immisceo]

So sorry to hear it's still going at you with a vengeance. I'm glad they seem to have grasped the seriousness of what you're dealing with by making higher doses and steroids available to you. I know we don't bring in the big guns lightly, but what you've been going through more than qualifies for the biggest of guns.

Thank you for updating us. I was wondering how you were doing. Secretly hoping your absence had to do with an exotic vacation, I was pretty sure it actually meant things were still tough. Hang in there!

[HVAC]

TN is the Worst. I have never had it but have had many friends with it. I would not wish it on my first oncologist. I am so sorry you have to go through it at all. I am thinking about you.

Alex

[jensequitur]

Whuf! So sorry that you're having TN.

I've had very mild problems with it, and my solution was to rub lidocaine lotion all over the area.

[essdipity]

Thanks once more to my friends here for your caring comments. Had my infusion for today--now two more and it's wait and see.

ess

[Poppy7402]

I'm really sorry to hear that you have been struck down by TN.   I've had bouts of TN for the past three years now, left side worse than right and different parts of the face so believe me, I can relate.

Tegretol works for a lot of people from the pain perspective but unfortunately not from the side effect one.  Although I didn't have the balance issues with it, I just wanted to sleep 24/7 and my QOL was zilch by the time I got to 1000 mg/day.

If the IVSM doesn't knock it on the head you may need to look at some of the anti-convulsants or tricyclics, even combining one of each.  

When I went off Tegretol I went on to Gabapentin and while it does work taking it 4x per day, it isn't near as effective as the Tegretol.   The side effect profile is much more bearable.   I have to temporarily add in a tricyclic if I'm having a really bad bout though.

Fingers crossed the steroids work.

Best wishes

Poppy