It took me about a week to get used to it and then I found that I had about a week of good symptom relief. I was put on 200 mg.
I am feeling like I have pain again and will ask my doctor to up my medication by 1/4 to see how that goes.
One of the side effects that I experience is that it is painful to look toward the left side of my face, like when I am talking to someone who is sitting on the left side of me.
It is stressful because I am finding that my vision starts to hurt quite a bit when I am in that position.
I have been checked out by eye doctors and nothing appears to be wrong.
I had an MRI scan and it says that I have the superior cerebellar artery in contact with the trigeminal nerve near the brain stem.
My neurologist wanted me to go see a neuro surgeon who said he didn't see any problem, not negating that I was having pain, but just showed me that there was nothing that indicated any problem, unlike the neurologist.
It is getting very confusing because I know the pain that I am feeling.
I will be getting a 2nd opinion from another neuro surgeon soon.
I did watch half of this video and will continue to watch more.
It was helpful.
Has anyone out there used biofreeze spray on their face or lidocaine like he suggests?
Thanks for being out there as a support system because this disease can be very isolating, to say the least.
I feel your pain literally! I am still waiting for official dx, seeing an oral surgeon soon, hope fully he belives me and refers me to a neuro. What is helping thru the pain right now is gabapentin and ibuprofen which really doesn’t help at all! I have some lidocaine ointment that i rub into my jaw area where the nerve runs, doesn’t stop it but seems to dull it a little. I was out with my daughter today shopping and the zaps started, it’s so hard to hide and people look at me weird when I’m holding my face and wincing. But I did find when i held a cold can of soda on it it actually stopped it for awhile. Hang in there you are not alone, anytime you want to talk I’m here.
Kelly
I was on Neurontin and then went to see a neuro surgeon who recommended that I try tegratrol.
I had been on Neurontin for a few years because I also have fibromyalgia, so it was a big change for my body to switch over.
I do understand when you say that the meds don't help at all, although at times, feels like they do, but then largey lately they don't. I am so sorry to hear that you are living with these zaps, that must be very frightening.
I occasionally get a zap in my left eye area.
It can make you feel very depressed and anxious as I have been feeling. I think the idea of something cold is a great one.
Had you had root canal surgery?
I do appreciate your kindness. It means a lot because no one really understands this weird disorder other than someone who has it, whether it is typical or atypical.
I am very grateful in knowing that this forum exists and can be useful to folks like us.
This is what I take. I started at 200 too but now I am up to 1600. It works a while, then it will just stop and I have to increase. I am about at the end of meds though because I can't go much higher on this. Then we'll have to do something. I worked up to 800, then that worked for a while, then I had to go up to 1000, 1200, 1400, then 1600. That may be what is happening with you.
My eye is the worst part of it, if I move it left or right I get a stabbing behind it. Apparently the trigeminal nerve goes around the lower half. Nortriptyline was the most helpful for me.
At first I was diagnosed with tolosa-hunt syndrome when there was a lesion behind my eye on MRI, but it went away while the pain never did, ended up being TN pain.
I had 2 good pretty good days and perhaps I can attribute part of that to having had acupuncture.
However today was really bad with most of the day in pain.
I upped the dose of tegratol to 1/2 more of the 200 mg.
The doctor had suggested that I take a whole but I am leery because just starting on the medication made me feel loopy, so am going into it more slowly.
I ended up taking some cannabis but that didn't totally dull the pain, which it usually does.
Took a chip of Vicodin and I think that might have done the trick.
Sometimes I put a small amount of peppermint oil above my lip and smell it.
Sometimes I put capzasin on my left cheek and that shifts the pain.
I did some long deep breathing too which might have helped.
This is such a weird disorder. There are times when I just want to say, oh, go ahead and have the damn surgery thinking that it may work, although knowing that it does 50% of the time.
I think also that anxiety has such a huge part of this too because I am in fear that the pain will start at any time and that never helps.
I do appreciate hearing what everyone is saying and that we are a collective family in a way. It's too bad that more isn't discussed about this at large.
I had the most awful experience when taking Gabapentin and Tegretrol, I could not function at all (could not even move). My eyes could not even look forward/straight, could not face any daylight (I had to keep my eyes closed).
Regarding having increased anxiety with pain, just went to the grocery store, for example, and I was ok for a awhile but then felt that pain in my left eye and I could feel my anxiety creeping up and I talked myself though it.
I use prayer too sometimes. Sometimes distraction works.
You have to be careful with using the capsaisin, should only use a small amount and be sure to wash your hands after or you will have a burning eye if you put your fingers into that area.
Has anyone out there had a good experience after having chosen to do the surgery?
Still experimenting with different types of cannabis,which strain works best for pain directly.
20-50mg Amitriptyline I can just about handle, it only works when TN pain is below pain level 5-6 for me (anything higher and the Amitriptyline doesn't even touch the pain). We tried upping the dosage but the side-effects were far to much to handle, I seem to have a slight phobia of taking powerful medication.
As for anxiety, it certainly does make my TN worst.
Does anyone here suffer from OCD along with their TN ?
I take Gabapentin and it sort of works some of the time. The Doc had me up to 400 mg's three times a day and that had me all sorts of wacky. I backed it down on my own to 2 in the morning, 1 in the afternoon and 1 at night. That keeps out the wacky realm for the most part, though my memory sucks real bad.
My pain is also centered along my left eye and left ear most of the time. I also have a large left optic nerve. I just found this out on my last eye appointment and I have been to a specialist for it. They say the two have nothing to do with each other but I'm not so sure.
I am having the surgery in June if everything goes as planned for me. If not I will have to put it off another month. I'm scared but looking forward to it too. Look into it and see if its for you.
Dallas said:
I had the most awful experience when taking Gabapentin and Tegretrol, I could not function at all (could not even move). My eyes could not even look forward/straight, could not face any daylight (I had to keep my eyes closed).