Trigeminal Neuralgia

[Guitar_grrrl]

I woke up with Trigeminal Neuralgia last Thursday morning.  I knew that was what it was, because I had it once seven years ago.  This time it's SO much worse!  I told myself I'd "tough it out" for the weekend, even though I did put in a call to my neurologist.  By Sunday, it was so bad, I was in tears!  I told my DH "just take me out back and shoot me like an old horse!"  I was kidding, but kinda serious, too!  Monday was excruciating, and I got to see my neuro in the am.  He prescribed Trileptal (it's a kin to Tegretol), which I took immediately.  Wow - the dizziness is really debilitating - almost as debilitating as th TN itself.

I went to work Tuesday, and I'm at work now (I'm on my break :)).  It's not easy coping.  I purposely didn't take my afternoon dose so I could be sharp.  I did take 800 mg of Ibuprofen, which does help, a little.

Trigeminal neuralgia only occurs in some 4% of PwMS, though PwMS are 400 times more likely to get TN than people without MS.  It involves the 5th cranial nerve, or "trigeminal" nerve which goes to the muscles of the eye, the maxilla, and the mandible.  Lots of folks with TN go to their dentists thinking they have an abcess, or something.  A sharp dentist will recognise the difference, and refer a patient with TN to a neurologist.  The drug of choice is Trileptal, though some will prescribe an opiate (Morphine or Oxycodone) with Gabapentin.

So that's what's happening with me, in a nutshell.  I'm hoping this goes away sooner than later!

[Sailorsong]

Sorry to hear about the TN. I just can't image going so long with that kind of pain. I get TN fairly often but it last no longer than 3-4 days with me and I just sleep through most of it. I often think that it is because I sleep through it that I get over it so quickly as my body gets the time to heal.

I do hope that you get full relief from this soon.

Dennis

[rendean]

I missed your orignial posting. I am sorry to hear of your TN. I, too, have bilateral TN. Trileptal is a wonder drug when it comes to TN. Once you acclimate to the Trileptal  it's a life saver.

Unfortynatley , I had to stop taking due to too much sodium loss (my kidneys were misbehaving).  

I am SO glad to hear that it is improving!! Wishing you continued sucess with treatng this extremely paiful disorder.

Hugs,
Ren

[dogmum]

So glad it's starting to ease!  Hope it disappears altogether and sooner rather than later.  (((hugs)))

[Guitar_grrrl]

OK, now I'm 4 weeks into it, I'm on 1200 mg/day of Trileptal, 900 mg/day of Gabapentin, and my usual 60 mg/day of Baclofen, and it's finally starting to ease!  Eating is still a little dicey, but it's getting better.  What a nasty trip!

Thanks, all for your good thoughts!

[MellieHegge]

Oh Honey, I'm so sorry you are dealing with this! I am wondering if I have been dealing with the same thing. I have thought it to be migraines... Pain in my eye, temple and in between once it lasted like 6 weeks. I was going in and getting injections if dilaudid and toradol to ease the pain. Hmmm I haven't been dx'd with TN and I don't know much about it. Any info would be helpful. You are in my prayers. Feel well again soon
Mellie~

[PastorDan]

I've been "fortunate" and only experienced a few quick zaps in the eyes recently.  They were powerful, though, and with my optical history of late, kinda scary.  They were sudden and startling enough to cause me to yell out loud.  I didn't know that it might be TN until reading of someone else's experience on another thread here.

One more thing to tell the neuro.

We will pray it never comes back, but also that it leaves all of you alone.

[Deb61]

I've been dealing with the pain of TN, too.  It's horrible.  There's a support group that I've found very helpful on the web:

http://www.livingwithtn.org/?xg_source=msg_mes_network

I had no idea that some topical creams have benefited some people . . .  There is a group on that forum that has both MS and TN.  

I've learned that TN is generally worse in the winter.

[dogmum]

So sorry your dealing with TN too.  I hope that since Im reading this late that it's improved with meds by now.  Keeping you in my prayers though anyway in the meantime.  

Hugs,
Laura

[Lulu54]

Grrrl, so sorry to read you are struck down with TN.  I am always thankful I have not had this symptom and hope it remains that way.  TN is often referred to in literature as the suicide headache or suicide pain, because it can be so bad you wish you were dead, just like you describe.

Hang in there and know a lot of us are sending get better wishes your way.
Hugs, L

[Antalya]

Hi again, my dear.  I should have looked to see that you lived in Santa Cruz.  Sorry 'bout that.  You're pretty!  And thin!  And look like a fun person.  So sorry  this trigeminal  *&@^()# is in you picture at the moment.
I have had it - but for very short bouts.  And long periods in between.  Hope you get some relief soon. And don't get it again- EVER!!
Has anyone had "chopsticks being jabbed into their eardrums" type of pain from this?
Here's sending you a big hug and wishes for some peace w/ relief soon.  

[PastorDan]

Those 200mg caplets always throw off my mental math.  Not supposed to take more than 6 in 24 hours, IIRC (which is what I take regularly, in addition to my gabapentin).  I was thinking 600mg, so my mistake.

[Guitar_grrrl]

Sidesteps - May be atypical, but localized around just the temple/eye area is the real deal.  6months?!? 8-O  Owww!  I don't want to do steroids unless I absolutely have to.

Jen - Lidocaine is my next step, possibly.

Tammy and Michelle - Thanks ;-)  (((hugs)))

Shell - I noticed you bumped Quix's most excellent post.  How timely!  Big hugs to you, too!

Rena - Yeah, I'd really rather not do any opiates.  Tegretol is closely related to Trileptal, and the dizziness is starting to wear off a little. (whew!)  

Erik - I've heard about Toradol to ease the pain, too.  Something to consider...thanks!

Pastor Dan - Thanks for the prayers...:-)  The Ibuprofen dose is pretty normal for a first dose in the morning.  It's what ERs give to patients as well.  To keep levels up, 400 - 600 mg every 4-6 hours will do the trick.  The biggest risk with Ibuprofen, though is GI bleeding.  I'll quit it If I have any signs of that...

Big hugs to all of you, thanks!

[PastorDan]

Oh, I meant to say I am sorry you're in pain, and will pray it goes away quickly.

[PastorDan]

That's a really big dose of ibuprofen.  Sure hope it works for you.  Doc approve?

[ESwanson]

  Very sorry to hear you are dealing with the TN monster.  I have been dealing with it for years.  It is controlled for the most part with the usual meds(trileptal, lyric, ect.)  I have never fully known if my TN attacks were a exacerbation of MS?  However when they got hospital bad steroids did work for me just a little slow to help.  On the last trip to the hospital a nurse that knew MS very well talked me into asking the Dr. for Toradol.  They gave me a infusion(sorry didn't take down the dose was busy hurting) but the pain went away fast.  It started to subside with in a few minutes and was gone completely by the next morning.  Since I have a script for the pill form and it holds off a full blown attack when I feel one coming on.  Bad news is you can only take it for a few days before you get a ulcer.
Erik

[Rena705]

Oh Honey...you know you get all my sympathy for what you are experiencing!  I wish I could do something to help but I don't know what to do about mine either!

They say that TN pain is worse than any other that one can suffer and I tend to agree!  I have asked DH to take me out and shoot me many times now!  

I am on Tegretol and Gabapentin for the pain and I don't really find that the Oxy or Morphine work to heal any pain...it just makes you feel better about the pain...I know that's confusing but it's the only way I can describe it.  

It has taken a lot of hit's and miss's to find something to help me with the pain and I am still dealing with it again lately.  I hope that you find what works for you soon girl and you get some relief!  Let me know how you are making out ok?

Lots of pain free hugs!
Rena

[sllowe]

Hi Gguuuurl,

Oh how wretched. I hope you can get some down time so your remain upright through that dizziness.

I too hope this goes away sooner than later. Coincidentally, I bumped an old discussion on Doc Q's cranial nerves. Wish you didn't have to be the living example of V.

I had no idea that we were 400 x's more likely to get it. Still educating us through your pain :) Thank you.

Wishing this away - Heal well fair lady ;)
-Shell

[michelleric]

So very sorry GG!  That is my nastiest symtom of MS.  I hope it goes away as fast as it came, and soon!  Lots of hugs to you my friend...
Michelle

[maxthecat43]

A friend of mine just had her fourth surgery for this.  It's awful.  

[Sidesteps]

I had atypical TN. I had pain in surrounding my right eye/temple. It kinda felt like a bad headache.  It lasted about 6 months steadily then slowly subsided. I still have some residual issues once in awhile.

I am sorry you are feeling awful.  Have you thought of treating the flare with steroids? It may help maybe? I wish they had known I had MS then. I would have treated with IVSM since Ibuprofen helped a bit.

[jensequitur]

I've heard it's awful - sorry you're having to put up with it!  I've had tingling, numbness, and occasional pinpricks, but never the full-on blast of pain.  I heard that lidocaine also helps - worth a try.