1st Post
 

Hello anyone.

I am 33yrs old and have been "tentatively" diagnosed with TN although I don't see a neurologist until December. I've been wearing a nightguard for about 2 years after a diagnosis of TMJ. A couple months ago I started to have symptoms of the random electric pain from ear to chin. I saw a dentist who suggested TN and recommended I go to the Wasser Pain Management Clinic here in Toronto. I looked into it on the web but they seemed to require a direct referral. I returned to the dentist and he took full facial x-rays to rule out anything dental. The x-rays didn't show anything but a cavity. That night I had a severe attack of pain which lasted longer than any other attack. I had been having single jabs or double jabs of pain, but that night it was a repeating lengthy attack. I took myself to emercency at Mt. Sinai and eventually saw the doctor on call. I explained my medical history and he said it did sound like TN. He prescribed carbamazepine. I started at 100mg twice daily and upped it to about 200mg twice daily. For about a week I felt like a complete moron which was very difficult to deal with in my line of work.

Eventually I felt normal and I felt like the carb was working. I played around with the dosage to try to minimize it, but I found that if I took it regularly, the the jabs were generally held at bay and if they started I would take another carb and they'd be gone within 45 minutes. These jabs were random but generally singular jolts.

Then I broke out in a crazy rash. I figured I was having an allergic reaction to the carb and my doc agreed so I stopped the carb and went on the baclophen with a side of tramacet for pain. Overnight things became hell. I got up in the morning and suddenly had an intense attack of the burning jabbing shocking piercing pain that lasted for about 30 minutes and actually brought me to tears.

I went back to the doc and asked for a scrip for gabapentin which he gave me. I'm now taking both baclophen and gabapentin and tramacet (an opioid pain killer) (my rash is going away indicating it was probably from the carb).

The new drugs are not yet working. Every morning I get up and eventually have little jolts until the major attack comes. This morning it lasted 26 minutes. Yesterday I had a follow up appt with the doc and as soon as I started talking to him I had an attack that lasted 20 minutes.

I am hoping desparately that this comination of gabapentin and baclophen will eventually work. I started with the gab at 300mg tid and the bac at 10mg tid. Today I've decided to start taking the bac 10mg every 4-5 hours to increase the daily dose to 50-60mg. I'm going to double my gab intake to 600mg tid also. Hopefully it won't make me too brain dead because I really need to get back to work next week as I've been off since last Wednesday.

This is a horrible ailment. I sit here drugged up stoned dreading the next attack. It's funny; the little jabs and jolts that used to be so painful before I ever had a lenghty attack are now minor little twinges that only forshadow the tortuous attacks to come. For me, when the attack comes, it is 60 seconds of pure pain where the brain goes blank and I flail around in a panic. Then my faculties will recover and I can sit and actually think. I note the time of the attack so that I can record the length. The pain alternates between shocking, jabbing, stabbing, burning, piercing, twitching, zapping, over and over again. I will think about how the first time it occurred it made me cry, but how now I can sit there and actually contemplate the pain and its severity and marvel at how excrutiating it is. I wonder how the left side of my face or my ear doesn't explode out of my head as it feels like it should. It's unbelieveable. I still fear those first 60 seconds.

Thanks for reading my story. If nothing else, I find it helpful to just record my thoughts.

Hi there Hejhog and it's nice to meet you!!!
I wish I could offer you a bit more comfort with your shooting pain than simply saying "welcome to the world of us with TN". I've had mine for 10 yrs. but for the most it has been that constant burning,aching pain that they seem to call "atypical TN". Several neurologists have said that this type is sometimes MORE difficult to treat than the classic TN such as you are having, since everyone can have different things that trigger the pain that's similar to a toothache on the whole left side of my face. When I first started noticing my pain years ago, it WAS like someone punching me in the eye. It would water and throb for a minute or so, then ease off and no pain at all. Within a short time, I was feeling the same sensation across my cheek and jaw areas. Baclofen and Tegretol did nothing for the pain and I finally began to see some comfort from the pain when I started taking the gabapentin. Winter in midwest of the US brought on more and more pain over the first couple yrs..having to increase the daily dosage as well as eventually added Vicodin for the pain. It was 4 yrs later when a different neurologist finally asked if I had ever tried antidepressants for the pain. I first thought he was trying to say that this pain was "all in my head" but figured I'd give it a shot. He supplimented my (at that time) 3600mg/day of neurontin with Elavil. It made me super drowsy, but within 48 hrs, I was noticing "HEY, I don't have ANY pain" !!! Three yrs later, I was still totally pain free, medicine controlled they were calling it. Now I'm noticing that the pain IS noticable, but tollerable as your words were Hejhog. There may not be an instant cure for this dreaded condition...but with the right neurologist and the wonderful power of prayer...we CAN get thru it! Best of luck to you Hejhog!!!

Corky

Thanks for the well wishes Corkybird, and same to you. I'm hoping that the gab will take hold soon and give me some pain-free periods. I haven't had a major attack for a couple days-just singular jabs and jolts here and there, so that has to be a good sign. However, I went in to the office today and found that by the afternoon I was having steady jabs and jolts and zaps and zings, etc. I took a couple tramacet and headed home right at 5. I think that the exertion and the talking to people made things worse than just sitting on my butt resting as I had been since last Wed. But, a guy can't sit around forever I suppose. Hopefully the neurologist I'm scheduled to see next month will be a superstar TN specialist spectacular! I'll keep in mind your advice about the antidepressants. They might be medically necessary in their own right soon anyway! It's good to hear you had a long period of relief so I'll stay optimistic. Thanks again and take care.

aaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhh!!!!!! Bad bad day. ouch ouch ouch. How do you take meds when you can't bear to open your mouth or touch your lips?

hello Hejhog, Corky gave good advice and like her I also welcome you here. BUT VERY VERY sorry it has to be over such nasty pain tho. I really think the correct meds and doses will be the thing that helps for you...once you find the right med. are you seeing a pain doc ? they help also.
as for taking meds when ya cant touch lips and mouth can barely open.... MAYBE I can help with that ... as having to take huge horse size pills when my jaw was wired up I had to break them up and do 1 of two things either shove them in between my wires or break and mush them up in some type of mushy food (applesauce,icecream, soupy mashed potatos) that I could suck threw a straw of corse your tongue can actuly be used in place of your lower lip . that is what I have learned anyhow. I use my tongue like that alll the time to eat and drink and the like.
I hope you find a great med and get controll over this. many many low pain wishes Hjehog. and of corse I do hope your neuro that you will be seeing is the best ever superstar TN specialist and things improve instantly for the best!
Peace
BMW

Thanks BM! I find I just have to bite the bullet, so to speak, and toss em back and wait for the subsequent attack to stop. Today has been a particulary rotten day, barely made it through a short court appearance and then suffered about 3-4 hours of near constant pain, left the office, but as I type this, I'm pain free, so the 2 gabs, 1 baclophen, and 2 tramacets I took 3 hours ago hopefully have something to do with it. It would suck to discover the meds don't do anything and I'm just at the whim of random inexplicable pain attacks.

I saw the doc today who's going to get me hooked up for an MRI at my request. I suggested it to rule out any atypical causes of this nightmare and he went for it. Takes about a week to get in up here in Canuckistan. He also prescribed me some Dilantin to add to the cocktail mix. I picked it up at the pharmacy, but I'm not sure yet about adding it in. I want to do some more research. Anyone ever combined Baclophen, Gabapentin and Dilantin before??? I'm going to check out some acupuncture. Anyone ever had any luck with the needles????

I'll try to spend some time reading your other posts BM to get to know you better. Take care and thanks for your support.

Hi there, HejHog - I like the name :) I rarely post in here due feeling that I really don't belong here - and feel a little ashamed since my pain is not yet anything like you and others have described. My pain is totally concentrated in my right ear and the immediate surrounding area. There is another name for my disorder - Geniculate Neuralgia. Three doctors have all diagnosed atypical TN, but thanks to Jean's post I am almost certain the Geniculate is the correct diagnosis - just a different nerve group, and supposedly even more rare than the TN - and perhaps harder to treat. I have suffered from "earaches" for about 7 -8 years now and finally got all the ear infections, and other possiblilities out of the way after two MRI scans on my head. My pain is very sporadic - will go 3 months at a time without it. Then all of a sudden I may have 2 -3 in one week. I realize this is nothing compared to yours. My pain starts out light, and then gradually intensifies to ice pick jabs and constant burning, boring pain at the same time. Matter of fact, I am having an episode right now. Since my attacks are so sporadic, I only take the carb pills when I have an attack. I just chewed my 100 mg tablet here at work, hoping it won't make me sleepy - but mostley hope that it helps the pain. Hurts to open my mouth or smile, or turn my head to the left - makes my 50 mile interstate commute a real pain! But you know all that and more - whenever I have an episode like this I am just thankful that for now the pain is at least tolerable. Anyway, I just wanted to say hello and how sorry I am that you had a reason to find this website. I hope you and everyone here get some relief today.

Rhonda

boy you sure are having a rough time lately Hejhog :grouphug: we all hope that ends soon . as far as Dilantin I am alergic to anti seizure meds and sorry that I cant help you on that. I bet some others here that are on meds would be able to chat on the subject. I think the meds that helped me for a short bit of time way back when... were neurotin , teg. pamalore.
I have never tryed acupuncture, but I do meditate and also have experienced healing touch and find those extreamly helpful and benefit from both .
Bassetcase :hug: you too chewing a med and wishin for the best. dont feel like you need to compare your "pain" with others or feel like you cant post . really darling that is silly and well Geniculate Neuralgia, is still nerve head pain and it is all just one ugly monster with lots of fingers. anything you share will be very helpful. even to me who may have to have a glossa something nerve cut which would affect my tongue and ear and area on that side... I do know none of any of this hejhogs yours or mine ..sounds fun !
a zillion tons of warm low pain wishes to both of you Basset ( Rhonda) and Hejhog and to all the others lurking low pain to no pain ;)
Peace
BMW

Hi Bassetcase! I agree with BMW--It's nice to hear from people no matter what their condition is. Regardless, your's sounds pretty rough and I wish you all the best. I have no doubt that your neurogenic pain is as horrible for you as anyone else's is for them. It is such a random, uncontrollable thing that it really beats away at one's mental defences.
BMW, I decided to hold off on adding the Dilantin. I saw a non-practicing neurolgoist as a favour to a colleague and he confirmed clinically the TN diagnosis and said to adjust the neurontin doseage a little by taking an extra pill here and there throughout my waking hours. He expects it to kick in and says I should achieve pain free status (here's hoping...).
Fortunately, I haven't had any "attacks" since Wednesday which I can safely say was the absolute WORST day I've had since the condition reared its ugly head. I'm just having the stabbing pain occasionally when talking, brushing, eating, etc.; just enough to remind me it is still there.
I picked up the Striking Back (2004) book from my local library and I really like the fact that it cites real clinical studies on the effectiveness of alternative treatments such as acupuncture and the like. My conclusion was that it might work and might not.
The neurologist I saw said "nobody knows the cause" of the TN contrary to the leading theory espoused in Striking Back about nerve root compression. I didn't say, "well I've read that it's caused by..." but hopefully the other neurologist I see next month will be more up to date on the condition.
I tried the acupuncture on Thursday and since then I've had this weird sensation in my left cheek, somewhere between mild numbness and mild tension; it's difficult to describe. I think I'll try it twice a week for a month even though they charge an arm and a leg and even though it will complicate the picture--Are the drugs working or is it the acupuncture??
But desperate times call for desperate measures, or something like that.
I sent an e-mail to that Dr. Kaufmann in Winnipeg asking about that microcompression surgery. I'd like to consult with someone about having it earlier than later if it is indicated in my case. I have no idea if he'll actually respond. I live in Toronto, but my tiny little home town is only 3.5 hours drive from Winnipeg and I actually went to University there so it would actually be quite convenient for me to see him if he'll let me. Otherwise, hopefully he'll recommend someone down here in Toronto that knows what they're doing in that respect.
Well that's my story so far--long and boring:Yawn:, but I find it helpful for some reason just to write out what is happening. Maybe someone else can find some use in things I am trying as I have from reading about others.
Anyway, here's to another day of hopefully attack-freeness and peace and well wishes to you BMW and Basset and you too Corky!!!

okay Canada Nice to met ya:)
I know Ella might be round ...but I sent ya some info anyhow that may help a bit .
Yeah maybe some one can get help or just a bit of comfort or knowlege from reading posts you or I or anyone leaves. but I so agree sometimes it is just so helpful to just write it out what ever it may be at the time.
Glad to hear of low pain may it only grow lower and disappear for good!!!!!!! Neurotin has been helpful to many just follow doctors order dont take more then rx. Things will work I know it! :)
Have a wonderful holiday and many blessings to you and your family!
Peace
BMW p.s.keep posting;) let us know how things are going.

Hi, hejhog, and welcome,

As BMW mentioned, Ella, who wrote the MVD Daily Diary thread - MVD-post surgery daily diary - hasn't checked in lately, but she's from Toronto and may be able to help direct you. Also, there are a couple of Canadian Trigeminal Neuralgia Associations and Support Groups up there where you should be able to get some help and support and maybe some doctor recommendations -

Trigeminal Neuralgia Association of Canada

Canada TNA

Your case certainly sounds "classic" so the meds should kick in at some point. But do find yourself a neurologist who has treated TN and is familiar with it in all its variations - somebody who says they don't know what causes it is not for you. And if you do decide on surgery, interview a number of neurosurgeons and find one who has had a lot of experience and an excellent success rate.

Take care and good luck with the meds. It can take a while to get up to a therapeutic dose, but once you do your body will acclimate to the side effects in time and hopefully you can find a balance where you're painfree with minimal side effects. Take care and do keep us posted.

Jean

Hi Hejhog
Jean sent me an email telling me you were here. I have not checked into this site in ages, I actually forgot it was here. i usually check the Braintalk site for newbies. I guess I'll be checking here more often. Thanks Jean.
First let me tell you that I am in Toronto too. I have lived with TN for 13 years up until I had my MVD in July /05. Of course it was not my first choice, as a matter of fact it was my very last choice. After increasing my meds all the way up to 1200 mg of tegretol and still having breakthrough pain I knew I had to bite the bullet and at least look into an alternative procedure. I am very big on doing my due diligence in any situation. So I researched, went to lectures, did a lot of investigating and interviewed 6 neurosugeons in Toronto's best hospitals. I finally came up with Dr. Michael Tymianski and Toronto Western. He was the most experienced in MVD and he seemed to make me feel like I was making a big thing out of this when it could be over in no time. I walked out of there feeling nervous, but sure that I was going to go through with it. I don't know if you've seen my online diary that I kept while I was recuperating, but it is on here somewhere. I have actually elaborated on it in the Braintalk site, but I will update the one here as well.
It is unfortunate that you have an allergy to tegretol and I think that family of drugs works best for TN and it is a sure way to diagnose it as well. The fact that you took it for a few days and it worked speak volumes. I know it is rough living here in Toronto with out health care system, as it takes so long to get in to see someone and in the meantime you have no choice but to suffer. There is also an excellent doctor in Winnipeg named Anthony kaufmann. Many Canadians opt to go all the way there for treatment. Do you have the book Striking Back? If not, please invest. it will spell out your options for a more tolerable life. You should be able to get this thing under control one way or another. It does sound like you have classic TN and in the "TN world" that is the best scenario. Please feel free to PM me anythime and I will give you my email address so you can stay in touch with me directly. If there is any information I could provide or help in anyway I would be more than happy too.
There is also a growing community of young people suffering with TN on facebook. Interesting how we all manage to find eachother. As a matter of fact there is another girl from Toronto on there who just came back from Winnipeg. She had a second MVD as her first one did not hold for very long. Unfortunately she did not have classic TN and her case is much more complicated to cure.
Just to let you know I am 2 years and 4 months post surgery and still pain and medication free (but whose counting!) ;)

Hello everyone!

I've been busy trying to get caught up at the office b/c I've missed so much time. Feeling good at the moment.
I went for a second acupuncture treatment and 10 minutes later I was starting to have a lot of pain. we had an invitation to dinner at the Air Canada Centre here in Toronto and to watch the Leafs game and I was in pretty bad shape until the red wine kicked in in the 2nd period (which I had to sip very very slowly). I'd say the pain lasted about 2 1/2 hours. Not sure if the acupuncture set it off or not. It didn't bust out into a full fledged attack, thankfully, but it was very difficult to keep a brave face on, I found, and to be sociable. Today's been great though with only a few zings here and there.
I faxed over $600 in claims to my health plan for drugs and acupuncture and it's only been a month and a half!!! I hope they pay up.

Thanks JeanC. I'm sticking with the Gabapentin, around 1800mg per day [BMW, I told my doctor today how much I was taking and he just changed the prescription to match it;)]and the occasional Baclofen 10mg thrown in for good measure. I quit taking the Tramacet, so I have a veritable pharmacy of unused T3s, Percs and Trams built up. Good time to break a leg or something.

Ella, great to hear you have continuing success. I am going to investigate the possibility of going that route earlier than later if it is medically indicated. Dr. Kaufmann replied to my e-mail so I might set something up for a meeting, maybe even next month. My fiance's from Winnipeg so we get up there once in a while anyway. I will definitely take your advice and I'm a fan of due diligence too.

I'm getting an MRI this weekend at North York General so hopefully they'll pick up on something.

I'm in line to get a CT for good measure at some point too. Hopefully I'll get some definitive answers. I'll definitely be in touch Ella for your well earned knowledge, as I see how things play out for me.

Take care everyone.

you will be in my thoughts and I hope things start moving in a good direction
starting with this mri your getting. Glad you can chat with one from home ground in Canada as I can only guess things are diffrent there with hosp. ..
the only thing I know about Canada is that my FAV rock band is Canadian RUSH :) :) seen them 5 times .
all the best with the docs. Hejhog we are all thinking good things for you. .
Peace
BMW

Thanks BMW. If you like Rush, You should really check out the Tragically Hip. Way better than Rush. They have to be the greatest Canadian band to never make it globally. They're unbelievably talented.

I'm happy to say that I've had nearly two weeks of normalcy. I figure the drugs have finally kicked in and except for the few jabs of pain in the morning and the odd one here and there, I'm pain free:)

I had my MRI last Saturday, 2 am, but it is just to rule out a tumour. I doubt it will have any diagnostic value as far as nerve compression goes, but its a start.

I still hope to get things figured out though, I'm not satisfied to just be pain free and not figure out the actual cause of the original pain in my case;

Thanks to all you who have come before, we know better; we don't need to be satisfied with controlling the symptoms as we can strive for a cause and a cure, yes? Yes.

Hello again all, long time no talk. The Gab's been working.
New development: I had an MRI on Nov. 24. I called my family doc today to see if they had a report b/c I have that neurologist appointment tomorrow.. DR. Yufe--- Well, lo and behold, the doc phones for the report and calls me back at work to tell me I have:

1. Left CP angle epidermoid 3.5 cm AP x 3.4 cm craniocaudad
2. large cisterna magna centrally and extending laterally to the right in the posterior fossa.

I just expected it to come back saying, largest human brain we've ever encountered, but no such luck.

Well, so much for Typical Neuralgia.

The good news is it is a benign slow growing cyst.

What would you rather have, venous compression of the trig nerve or cystic compression? I don't know either. We'll see what Yufe has to say tomorrow.

Probably the same type of surgeon for both procedures no?

You can do it!
 

hi heghog, you are in he position that I was in 5 yrs. ago. I refer to it as the darkest days of my life.
You will get through it, but it will be a rough road for awhile. I know it is very
difficult to think of a day when the pain will cease to be, or be on a much less level.
I was terrified to move, talk, or eat. The lightning strikes were about more than I could bear. Just getting through the next minute, the next hour, the next day
was the hardest thing I have done in my entire life.
My first MVD failed, then came 2 balloon decompression surgerys. They failed also. I was directed to Mayo clinic in Rochester, Minn. I had to lay down all the way.
One of the top neurologists in the world did another surgery where he partially
cut the trigeminal nerve. I was put in the pain unit as the pain was absolutely the worst ever. He took me back to surgery where he severed the trigeminal
nerve completely. I was in Mayo for three weeks. One side of my face is numb
but I now live with a different pain that there is no surgery or meds that will take it away. Anesthesia delorosa, thats the name of it. I would rather have the pain that I have than the pain and lightningstrikes in my face that scared me beyond words. You see I have been to hell and back, but I can eat, talk and smile. I will put you in my prayers and I know you will go down the other side of the mountain.
Truely a believer,
Doodle bug 7:D