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.