What saith My Neurologist....

Sorry for not posting for a week, but I got distracted by life (you know, the one none of us is living).

Here's a brief update on what my neurologist and I discussed last week. This is my 3rd visit in 8 months in our effort to curb my chronic tension-type headaches.

* Elavil is beginning to work. I'm now at 50mg per night and keeping a better sleep schedule, trying ever-so-hard to get 8-9h per night. Since May, my headaches have subsided a bit and I now have zero's on my daily diary for the first time in years. I usually don't get a full day of zero's...just zero for an afternoon, for example, or an evening. But I'll take zero's where I can get them. Since I'm still having flare-up days, days when I have brutal head pain, we've decided to raise my dosage to 60mg per night, but the sedating effects are becoming difficult to manage. I don't know how I will tolerate any more sedation. I'm already taking my nightly dose early in the evening and find it hard to wake in the morning.

* My sleep schedule needs to be rigidly maintained. It seems to help the headaches a little, although there are nights when I get lots of sleep but still wake with and have bad headache during the day. Even after weeks of a rigid sleep schedule, the headaches have remitted a bit but are still present and there are days I still feel wretched. So sleep isn't the only tool I have, but it does seem to help a little. Getting regular sleep is easier said than done. I can go to bed early, but I still have trouble falling asleep, and often wake in the night. Then, it's impossible to wake up in the morning. So sleep is complex for me, and often not refreshing, and not something that's perfectly achievable just by going to bed at 10 o'clock.

* He believes I have a migraine component atop the chronic tension headache. We weren't sure as I don't meet the clinical migraine diagnosis...no photophobia, no nausea, typically no one-sidedness, etc. My pain is regular and debilitating and often severe but doesn't seem to be full-blown Please-God-kill-me migraine. However, the Maxalt trial resulted in some relief. And also, I've experienced visual auras, the last on March 18th. After the auras, I have a stabbing pain over my right eye. So he said "well, it looks like you have a little migraine in you" and is trying me on another triptan, but only after we see if the Elavil works at higher dosages.

* The facial numbness didn't concern him. I, naturally, was terrified that I had a massive carnivorous tumor growing in my neck, pressing on my trigeminal nerve. He said no, not with that pattern. I have facial numbness, starting a couple of weeks ago, that goes around my hairline, about an inch from my hairline all along the top of my forehead and down the sides of my face to the earlobes. He did the pin-prick test to isolate the numbness. He said that part of the face is ennervated by the opthalmic branch of the trigeminal nerve, but if there were any problem with that it would not produce this area of numbness and neglect others. So he said he didn't think of anything it could be. He reviewed my MRI from last September, which was normal, and then said "can you live with it?" Since it is mild numbness (and I am not dying) I said "yes" and was almost happy to have it (since it means I am not dying or getting MS). He said that he often hears headache patients complain of vague facial numbness that they can't find a reason for. So he wasn't concerned. It is still there, and irritates me when I touch my face and it feels like I have dental freezing. But I am getting used to it. It irks me, but he's the expert and he didn't seem phased by it.

* The mild ataxia (unsteadiness, staggery feelings) is probably from the Elavil. I discussed with him my father's health. Dad has a degenerative cerebellar condition that also causes ataxia and it isn't clear if his is hereditary or sporadic. Anyway, he said that my last MRI was reviewed with Dad's condition in mind and there were no problems observed with my cerebellum or brain stem, etc. Also, my ataxia occurs in the morning, when I wake, and feel unsteady and drugged out of my tree. He thinks it's the Elavil making me dopey, physically and mentally sedated. Usually it passes as the day progresses. He also said that any cerebellar degeneration would be progressive, not intermittent like mine has been. So he told me not to worry.

* Sleep: I explained that I don't seem to get refreshing sleep. I could sleep 14h like a teenager. It's impossible to wake up. I don't have apnea nor restless leg syndrome nor insomnia so he doesn't think I have a true sleep problem but didn't have much to say on the subject. But he did say that Elavil, even if it makes you sleepy, does affect your sleep cycle, so it isn't the "same quality of sleep" as normal sleep. Plus, the need to keep sleeping is probably just the sedation. He didn't offer much more on this front, and I would still like to go to a sleep clinic. I may need to discuss this with my GP. I often wake with a bad headache, and the quality of the head pain seems to depend on where I wake in my sleep cycle. On the mornings when I am most exhausted and find it most difficult to wake, I seem to be in a very deep sleep and have a bad headache. On the mornings I wake up more easily, I don't have a headache, so the head pain seems to be tied more to where I wake up in my sleep cycle rather than to hours of sleep. So sleep+headache is infinitely complex and not something that I can control simply by MORE sleep.

* Neck and shoulder pain: I have chronic painful neck and shoulder tension. My traps feel like there are solid steel tennis balls inside them. My neck feels like it is made out of aching steel rods. I am stiff and sore all the time. Neck/shoulder tension are accompanying features of tension-type headache. Neck and back pain can be as troublesome as the headache itself. But the miraculous thing is that since May (when the headaches began remitting a bit), the neck/shoulder tension disappeared completely for about 4-6 weeks. This is the first time in 9 years my neck didn't ache constantly. The headaches left, or remitted, and so did the neck pain. So I told him that all the physio and neck exercises and all that crap I've done for years is probably useless, in my humble opinion, because there is NOTHING WRONG WITH MY NECK. I agree with the neurologists who think that neck/shoulder pain is simply an extra-cranial manifestation of the headache. And then the last week I haven't sleep well and been busy and all sorts of other triggers and the head pain is back with a vengeance, and guess what...so is the neck and shoulder pain. So he thought that was amusing since headache neurologists are always arguing and undecided about whether tension-type headache arises from the head or the neck muscles. So if I didn't do the insidious exercises and physio and dry needling he prescribed, would he be offended? He said no, he liked my theory, but he still thinks good core neck stability is important blah blah blah....

That's about it. It was a short and sweet visit. I seem to be getting some relief. Or not. I have had remissions before, but I hope something sticks this time, something magical sticks and I am de-sensitized to my triggers and my body learns, thanks to 60plus hours of sleep a week and plenty of Elavil, that it is okay not to hurt all the time.