Tic Convulsif

I saw the neurosurgeon today. As I already suspected, he told me that because I do not have typical trigeminal neuralgia my odds for surgery working are quite low. He said on top of it I have tic convulsif (both the 5th and 7th cranial nerves are involved) which is even more rare. He said it makes an interesting case for him but worse for me. He is going to talk to my neurologist and we'll probably try some more medication options before resorting to surgery that has low chance of working. I just wish they could find something that will work already.

How frustrating! I too do not have typical TN and one of my doctors calls me her "special patient" and my pain management Dr is doing extra homework trying to find something to help me as well. I hope yours doctors find something soon that works for you!

Hi Dianna, it sure is frustrating. After some research it turns out that Tic Convulsif is TN with Hemifacial Spasm. Much more rare than TN. It makes sense though because it is 2 affected nerves (5 & 7). After my accident in 2005 I had Bell's Palsy which is the 7th cranial nerve. The Bell's Palsy went away but my eye has twitched ever since. I never thought anything of any of this other than it was from the car accident. One split second really can change your life forever. The neurosurgeon said that the concern with doing surgery is that both were caused by trauma to the nerves which doesn't respond as well to surgery. He hasn't ruled surgery out yet but it is less likely to be successful.

So sorry that you do not have an "easy remedy" at hand! But it does sound like your doctors do care about you as a patient and are trying to help. Just getting doctors to that point in our TN saga is half the battle! Are you maintaining with meds for now?

Yes, at least my doctors have been on top of it. I am grateful for that. I am only on Baclofen right now. I'm waiting for the neurosurgeon to speak with the neurologist and decide where we head with the meds. The neurosurgeon that I saw is the only neurosurgeon in the Washington DC area that has done surgery under Dr. Jannetta in Pittsburgh. He was very knowledgeable and everything he said was what I have learned from here. He gave me a full hour of undivided attention and he was very empathetic. I felt very comfortable with him.

Kathy - I just sent you a friend request. Please keep me updated on your prognosis. I have suspected this is what I have as well, for some time now (though this is the first time I heard this name). I am seeing a neurosurgeon late Sept. I will let you know what he tells me for options.

Hi Elaine. I will post updates as I get them. The one positive is that all the weird things I’ve been experiencing for quite sometime are finally making sense. It’s nice to know I’m not crazy.

Everything I've read on Hemifacial spasm (on its own) over the last year indicates that MVD is the go-to treatment. After you gave this double whammy a name, I looked it up and what I read also indicates MVD as the rolls-royce treatment option. With your doc saying surgery is low chance of working I am very interested to hear what mine has to say - will he support the on-line material or will he support your doc?

There are also Doctors out there who think surgery is not an option for TN2 but the research out there indicates that while the success rate is lower than TN1, it still has sucess. I wonder if your Doc is old school?

He said surgery is not ruled out. Yes, MVD is the go to for hemifacial spasm and typical TN. His concern is that with trauma induced TN the success rate is much lower (about 50% vs 98%). He said worst case scenario would be that I have a scar behind my ear and I’m still in pain. He prefers that I try more meds first.

Has he decided what meds? I am on my husband's insurance and it is open enrollment this week, we are looking into going to different plan with more specialist options. Will be looking at drs. I want more than one opinion. I just hate having to start over and educating.... :P

I am still waiting to find out what med will be tried next. I think it will be Lyrica but as of Friday he had not contacted my neurologist so I'm stuck in the waiting game while my face feels like it is on fire. In the mean time the electric shocks are increasing on the right side as well. :(

Neurologist is putting me back on Tegretol despite the severe vertigo. Here we go again. :(

Sorry to hear that. Does the vertigo go away slightly after you have taken it for a while? Do you get any relief while on it? I take Trileptal and for the first 9mths I also had to take antivert to make it from my bed to the restroom without injuring myself. :b

The vetigo was actually getting worse the longer I was on it and I couldn't get the dose up to where it would help the pain. Well, I took 2 doses of Tegretol and the vertigo wasn't as bad as when at the higher dose but I couldn't eat, my head hurt, and my vision was crazy. The pain was so intense on both sides yesterday. It felt like a vice grip on my temples with electric shocks. It felt like someone was trying to force my teeth out of my head via squeezing my temples while pouring boiling water on the left side and electricuting the right side. It is much worse with the pain on both sides. Its actually starting to do it again. The Tegretol knocked me out completely for 2 hours yesterday afternoon. Anyway, the doctor is changing my Tegretol to Lyrica for a trial. We'll see how that goes.

Well, Lyrica is a no go. Horrible muscle twitches, headache, blurred/double vision, lights flashing, tunnel vision, swollen face. 2 nights ago I awoke with my arm feeling like it was on fire with electric shocks going through it. I have felt awful for the past 2 days. Only option left is MVD regardless of the chances of it working. Will call the surgeon.

I'm on Nortryptiline / Gabapentin. The Nortyp worked way better than Tegretol for Type II. I noticed when I added the Gaba as a booster the twitches lessened. I had to increase my Gaba dose in the summer and the twitches actually went away for a shrot while. They are back now, but it was a nice break. Been doing a lot of reading since you posted about this and it seems like MVD isn't a bad option. GL

Hi Elaine. I had really bad muscle twitches, headaches, visual disturbances on gabapentin. Yeah, I'm thinking MVD is the way to go.

Hello There Kathy O (and others who posted on this blog)

Did you ever get anywhere with treatment or surgery? I only recently came across the term Tic Convulsif. I have TN2 and now the HFS. Have just ditched Trileptal. Staying with gabapentin and nortriptyline for now. Seeing neuro again on May 9. Also booked for another neuro who takes unusual cases. I don’t think any of my docs know this term. I shall enlighten them.
Any new from you would be great.
Really hope you are doing better or have found some solutions.

Bellalarke: Hi, no, I've gotten nowhere. They gave me methadone but I only took one dose and had the worst headache ever. I've remained untreated and frustrated. Basically, I've been told there is nothing they can do for me. I'm totally unreliable for anything because of the pain. Not working and miserable. I've given up on my neuro, and have no hope of seeing a different one with the HMO I'm on. All meds have been ruled out for me since I can't tolerate them. :( Good luck, I hope you fare better with your appointments.

Kathy thanks for getting back to me so quickly. OMG I am so sad to hear you have gotten nowhere with all of this. I am in Canada and while our system is very slow, I can more or less rely on eventually getting to the best my country can offer. If I get any new information I will be sure to pass it one to you. I can’t tolerate carbamazepine or trileptal and so carry on with the gabapentin which very slowly over a long period of time I have somewhat adjusted to.
I really hope something in your situation changes.
My best for now.