Going to Neurologist - What to ask ? Suggestions

I have pushed some buttons with the VA - and finally have an appointment with the Neurologist for the Veterans Admin.

I have only been diagnosed with this for 3 months and am still kind of new to the ins and outs of what is important to know and ask .

I am making a list to bring with me of the things I should be aware of and what questions I should ask since these appointments are hard to get . I don't want to miss this opportunity to get some clarification on anything that might be important .

I am asking for any and all suggestions from this group of more experienced sufferers .

Thank You !

Do you have zaps like lightning…

…or type 2 which is more like burning…constant,?

When is your appt?

How experienced, how many successfully treated if
any by neurosurgeon?

By definition I think I would fall into the TN2 category , Or even just TNP , (unintentional injury to the nerve caused by trauma) from 'striking back' "such as facial injury due to a car crash" Pain is not constant but like it is always 'hiding' there ,

Not electrical or sharp jabbing , the pain is always in the TN , but located in different areas it can be from the upper jaw to the eye socket - behind the eye - in the scalp as more of a tingly feeling - a hot rod behind my eye - a burning in the nasal or sinus - but it mostly is like a vise in my temple area crushing down on the part of the nerve where the branches come together . This happens 1.5- 2 hours after I lay down to sleep nearly every night (can occur spontaneously during waking hours) I will awaken - sit up for 20-30 mins - it fades away - I lay back down only to have it happen again in 2 hours or so.

As the night goes on like this the pain becomes worse and worse until I finally give up trying to rest. There are occasional jolts or jabs of pain - not very often . This cycle has happened every night this week . I have to be in bed 10 hour to get six hours of sleep , with 5 episodes of pain.

I track the barometric pressure and this has a lot to do with pain levels and episodes - Storms mean pain - sudden changes and large changes mean pain - High pressure means High pain - level pressure can lead to days pain free and even pain free nights . Ideally the air pressure needs to be about 29.80 mb but if it stays at a constant for more than 48 hours I get relief. ??? Go figure , but this is what I know from 3 years of suffering.

Maybe this was the wrong thing to ask , as I have a pretty good grasp of what is going on here . An MRI showed negative results of obvious problems , and medications are yet to be explored so far beyond Gabapentin which had little effect and Tegrital which I have been prescribed in such a low dose 100mg 2 times a day as to have very little effect . It did have some effect for awhile and I could tell it was helping ,but not enough .

Beyond this - I leave for the Neurologist in less than 24 hours and have to drive 100 miles to get to the VA center.

Any thing else?

Having a good grasp of book and diagnosis…and your own research are the best tools…besides neuro with expertise!

I have a list of mannnnnny of our favorite meds and
Things like lidocaine patches for face pain…topicals


And my favorite doctor in mchigan!




Arrgh - Well I am back and am a bit unhappy with what happened - The VA Dr seemed a bit inexperienced in these cases , hard to be sure. He wanted to label it 'Cluster Tic' but he did order me to get a MRA , Upped my Tegretal and a sleep aid - which seems a bit silly - sleeping is not the problem - pain while trying to sleep is. No amount of sleep aid will help me sleep thru these night pains. He basically was reading from a manual based on the symptoms I was giving him and trying to find what fit best , but he kept shutting me up as if he didn't want to hear more . That is the trouble with VA .

I was on a clock and this was a rushed consult. They are nice enough there but under the gun to see as many people as time allows. At least I feel like I am moving forward now and not stagnating with this. The higher dose of Teg. seems to be helping , but a weather front moved thru while visiting a museum after the visit yesterday and I got a severe daytime attack . Lasted the usual 20-30 mins - of bad pain with a lead up and fade time. so maybe an hour of discomfort total. Then sort of a hiding dragon feeling .

I think there is something else going on here , maybe a sinus cavity that is not breathing and balloons with pressure changes. Hopefully the MRA will show something more definitive.

Background Cluster-tic syndrome is a rare headache syndrome in which trigeminal neuralgia and cluster headache co-occur. The existence of cluster-tic syndrome as a separate entity is questioned, and figures on prevalence of simultaneous existence of cluster headache and trigeminal neuralgia are not available.

Conclusion Trigeminal neuralgia co-occurred in 11/244 (4.5%) of cluster headache patients. In only 3 (1.2%) patients, trigeminal neuralgia seemed to occur independently from cluster headache episodes. Trigeminal neuralgia (-like) attacks in cluster headache patients are most of the time part of the cluster headache spectrum and should then probably not be treated separately. A shared underlying pathophysiological mechanism of cluster headache and trigeminal neuralgia is not supported by this study.