Trigeminal Neuralgia ?

[slightlybroken]

Can you get worsening TN symptoms off and on for several days, even if your on medication to help TN?

Why I ask is because, for several days, I was suffering from horrible facial pain. I still have the pain now, it's just more tolerable.  It was throbbing just a little bit down from my temple and the pain would shoot to my lower jaw, lower cheek, and upper jaw. This was all on the right side of my face. My teeth would not hurt but they felt almost numb compared to the other side. My ear, deep inside felt funny on the same side as well.

The pain would let up at night and it wasn't constant, but it did knock me down for several days and made me very grumpy to deal with. I'm not a pleasant person when I'm in more pain than the usual. (I'm in pain everyday...but this brought it to a whole new level.)

I'm on Topamax and Baclofen which is used to treat TN. I was having more spasm than usual in my neck and I've been having eye issues (I have to wear my glasses again), so I did start to get a little relief after taking an extra dose of Baclofen (doctor said before..if I need an extra dose I can take one).

I have complained about this to other doctors...and they seem confused because most of my worse symptoms are on the left, this symptom occurs on the right, and has only occurred on the right. It has happened several times...but no doctor takes notice. They almost act like it should occur on the left side and the medication should take care of the problem that I'm already on.

But if I end up having MS, wouldn't I still get TN regardless, especially since I'm not on DMDs? How do they DX TN?

[Fluffysmom]

Great site, with links to even more informative sites.  Thanks.

[Quixotic1]

Hi, Yes, to all of your questions, I think.  The pain of TN can very day-to-day or week-to-week.  

Topomax is not a first line (nor a second line, I don't think) med to treat TN.  The drug of choice is carbamazepine (brand Tegretol).  This is an seizure med, just like Topomax.  The Baclofen is only useful in TN when the TN is causing severe and painful facial spasms.  Otherwise Baclofen will not have an effect on the pain of TN.

Within the context of MS, which side the TN is on is irrelevant.  It is where it is.  A distinct lesion would be causing it.  If your doctors are confused, they may be thinking about which side of the face is involved in a stroke - this means they are not thinking about the random nature of MS.  Hmmm, theat may be a clue as to why you are not diagnosed.

TN is a diagnosis of exclusion. Classic TN is characterized by jolts of pain into the face, often with a trigger point of some kind, like touching the face, the lips, chewing, etc.  there is an atypical form of TN that is characterized by a constant, deep pain in some part of the face on one side.  These are treated the same.  To diagnose they rule out a dental or TMJ cause or a history of deep oral surgery on that side.

The best place to learn about TN is a site called fpa-support.org.  I highly recommend that anyone wondering about Trigeminal Neuralgia go ther and read what they have to say.  They also have a diagnostic questionaire that you can fill out and see immediately if it appears that you have TN.

TN appears in people with MS about 300 times more frequently than in the healthy population.  When it occurs bilaterally it is almost always (some neurosurgeons say "always") due to MS.  About 3% of all people with MS will suffer from TN at some point.

TN may be preceded or followed by abnormalities of the trigeminal nerve like numbness or abnormal sensation in the same area as the pain.

Kathy, with all due respect to your PCP, I have never heard of TN as the result of a viral infection.

That site again is:

fpa-support.org

Quix

[Fluffysmom]

Oh, do I understand about just wanting some evidence to show what you have!

I was a bit excited about the TN and the lesion on my pons, thinking it might be evidence, until my PCP pointed out that the virus I have could have caused it, and my ms neuro didn't care what caused it.  Sigh.  Getting excited about intense pain is a little sick, I guess, but limboland can do strange things to a person.

I don't know if you should see a doc about your possible TN or not.  Can you call and ask someone, like and advise nurse, or your neuro's medical assistant, or someone?  Who is going to order your brain MRI, your blood panel?  I guess you better make some calls.

I wish your husband was with you.  All I can do is send you a great big cyber hug and wishes that your health improves soon.

Kathy

[slightlybroken]

Thanks for the comments

Insurance companies don't make since. I'm currently fighting with mine  over a shot of birth control I got to control an ovarian cyst. My doctors and I decided we would use the Deprovera shot...It was either that or lose the only ovary I had left. My insurance company doesn't want to pay for the shot...They said they would have if it was the birth control pill but this wasn't an option for me because of the blood clots I got in my leg last year. Deprovera was my safest option. So I have to send them medical records and a letter from my doctor, that I'm still waiting on proving my case before they will consider it.

As far as the TN...if this is TN
I've had this problem before, and I'm not sure what it is. It is never from my teeth but it always hits me on the same side of the face. My teeth always feel numb when it hits. I spent the good part of the weekend holding my face in my hands but then that seemed to set it off more.

I would think if it was a tooth problem it wouldn't just go away like it normally does. I'm feeling better but I'm not sure if I should go to the doctor or wait it out. I need to make appointments for other things and frankly I just wish some evidence would show to what I have.

I'm past due for an MRI of the brain. I need a blood panel done.I need my eyes looked at because last year I was 20/25 in one eye and 20/30 in the other...I'm definitely not that now, and it happened all of a sudden. What can cause that..I wonder? I also need to see a lung specialist..I'm wheezing a lot. And all this is happening when my husband is away :(

[Fluffysmom]

Just a little more veering;  I did increase the dosage to 30 - 100 mg. and 60 - 50 mg. so I could take the amount suggested by my neuro and PCP.  I called the insurance company to see if there was any way around it, so I could have a few extras in case of TN, and was told that I can get a refill when 75% of my RX has been used; I will always get a refill as early as possible and build up a few extras.

My insurance will only cover 14 Ambien a month; how weird is that?  I find that I can get by with 5 mg., so I do fine.  I also get that filled early, so I can have an extra incase I need 10 mg. some night.

I get Vicodin with no problem whatsoever, but Lyrica was a "controlled substance" problem for a while; probably why they have the 90 capsule limit.  My doctor's office's fax machine won't fax a Lyrica prescription, but will do Vicodin, diazepam, Ambien, etc.  It is strange.

Now back to our Trigeminal Neuralgia discussion...

I think that TN can worsen over several days, even while taking medication.  I was on an increased dose of Lyrica when mine struck, and continued to get worse for quite a while.  A lot of the time it would be a constant ache, but other times it would flare into a screaming kind of pain.  That was when I took another Lyrica, and brought it back down to the previous level.

Mine could be triggered by breathing in air through my open mouth, biting down on something, being tense and kind of clenching my teeth, eating ice cream; I'm talking about the really bad electric shock pain.  Sometimes I would just be sitting there, and all of a sudden I would grimace, or reach for my face as the pain jolted me.

It's calmed down after several weeks, but I'm careful not to chew on that side too much, and keep cold stuff away.  I can very carefully eat a small amount of frozen yogurt now on the right side of my mouth again.  I know it sounds like it could be dental, but I went to my dentist and had X-rays and a thorough exam, and was told that there was no obvious sign of a dental cause, and that with the results of my exam she would think more "globally", and consider Trigeminal Neuralgia the most likely cause.

My PCP is sure that it is Trigeminal Neuralgia.

Kathy

[essdipity]

Just a comment about Lyrica--

It's odd the way your insurance works. A way around this might be to have your doctor prescribe Lyrica in one of the higher strengths, so you'd wind up taking fewer to get the same effect.

My insurance is strange too. I have the best possible coverage for Avonex and practically everything else. Three months' worth costs me only $20. I know how lucky I am, believe me. Yet the same outfit will allow me only 15 Ambien for a 30-day script, at a charge of $25, citing the fact that it's a controlled drug (only technically). If they were really worried about my use of controlled substances, though, why would they allow 15 Lunesta simultaneously, also at $25? Just another way of collecting $50 for 30 days.

My sleep has improved somewhat, so I don't take Lunesta at all, and take Ambien only about twice a week. I don't have anything else 'controlled,' and it's a good thing. That could get expensive.

Don't mean to veer this thread off in a different direction. So if we want to discuss inconsistencies in drug costs, which maybe we don't, a new thread would be better.

ess

[Fluffysmom]

I think TN is a rule-out diagnosis; they rule out the pain being dental in origin, rule out TMF issue, and take a thorough history.  I think it's possible to do a nerve conduction study on it or something like that, but it sounds to me like that would be awful.

I've finally been told I have TN, after years of episodes of pain, mostly on my upper jaw on the left side.  I even had a crown put on a healthy tooth because I thought the pain had to be coming from there.  This year, when I was on Maui, it got reallllllllly bad.

TN is caused by compression of the nerve, either by a blood vessel which can constrict it and rub it until it has a lesion, or from a lesion of another sort, like MS.  It can also be caused by trauma to the 5th cranial nerve, like from a dental procedure gone wrong.

I have a lesion on my pons, which is where the 5th cranial nerve attaches to the brain, according to what I've read; I may have it a little confused, as my dizzy/fuzzy head stuff isn't resolved.  I also have a virus that attacks the left side of my face by my ear, which could have caused a lesion on my nerve which caused the TN.

So, in my case, TN and my lesion on the pons don't necessarily mean that I have MS, so I stay in limbo, doggone it.  I talked to my ms neuro about it, and she said that it didn't matter what caused it, you treat it the same.

If Topamax and Baclofen aren't taking the pain down to a manageable level, maybe its time to discuss a different medication.

My neuro just told me to increase my dose of Lyrica,  which did help a fair amount. My insurance only pays for a limited number of Lyrica monthly, so I'm hoping I don't get too many TN attacks!

Good luck; I know how awful the pain can be.

Kathy