Horrible migraines always start when asleep - finally some hope
I have had migraines for 25 years. I used to get frontal ones, with pain starting between my eyes. Those I got under control. But in the past few years, the worst ones (incapacitating, lasting 3-4 days) always started when I was deeply asleep, at 2, 3, 4 in the morning. I'd wake up with pain on the side of my head, which would then spread to a full blown migraine that would last 3 to 4 days. Nothing ever helped it, or stopped it.
I tried Botox (no help) I have been on every medication that there is, all the triptans, all the preventatives, all the abortives, all the rescues. I have tried new neurologists. I have tried diet, exercise, stress control, meditation, everything. But every few weeks, and then (in the past year) every single week, I was getting this pain starting in my sleep. And it would always escalate rapidly and nothing ever helped stop it once underway.
Then a few months ago, I had a toothache. I couldn't get to the dentist right away, and it only hurt when I bit down, so I figured I would just avoid chewing on that side. Except that every night - yes, at 2, 3, or 4 in the morning when I was asleep, the pain in the tooth would wake me up, because I was biting down on it.
I finally figured that I clench my teeth in my sleep. Clenching (I have now learned) is different from grinding or bruxism. Grinding your teeth will wear away the tooth, so your dentist can tell you if you are doing it. But clenching doesn't hurt the teeth. So you can be doing it for years and not know.
But take your fingers, hold them to the spot on the side of your face between your ear and eye and clench your teeth - feel that pressure when your teeth press against each other? It occurred to me that that could be what was compressing the trigeminal nerve, which then triggered the migraine, and I wasn't waking up until it was well under way. I don't clench or grind during the day - but apparently I was doing it during deep sleep, and I never knew.
So, I tried some hypnosis tapes. No help. I tried mouthguards. Also no help, and I totally hated how my teeth felt after wearing them for hours. My dentist suggested an appliance, but I really hated how my mouth and teeth felt with anything in it. And I was concerned that the mouthguards were protecting my teeth, but not making me actually stop the clenching.
I checked for FDA ok'd devices for clenching or bruxism, and found a biofeedback headband for teeth grinding and clenching. The headband has sensors that go on your temple, and if it picks up movement, it makes a tone that you hear through the headband (so it shouldn't wake your partner) The tone is fairly quiet, and the idea is you need to use it like biofeedback so that when you hear it, you tell yourself to stop clenching or grinding, without waking up. Then if you don't stop, and the clenching continues, it gets a bit louder. It also records and will tell you next morning how many times it picked up teeth clenching.
When you first use it, you are supposed to turn the tone off and sleep with it overnight for a few times, just to get a baseline score. The first time I used the sleepguard, it indicated I was clenching my teeth 62 times the first night, 83 times the second night. I was shocked, as I had no clue I was doing this!
It took some getting used to. And I had to work with it. You can adjust the volume and the sensitivity on the headband. I started using the sleepguard at the least sensitive setting. It would still wake me up a few times a night, but I would rather be woken up and not get a migraine, than sleep through and get a migraine that lasts for days. After a few weeks, once I wasn't getting any tones, I adjusted the level to make it a bit more sensitive.
After 3 months, I am doing less clenching. But what is most important to me - I have not woken up in the middle of the night with a migraine during this time. Not once. And before using the headband, I had been getting these horrible migraines every week.
I still get woken up by the tone sometimes, which stops the clenching, but as I said, I would rather get woken up by a tone than get woken up with a migraine. I'm working on trying to stop the clenching all together.
I have also still had a few migraines in the past months that started in the afternoon or early evening. But with those, when I feel them coming, I can at least take medicine early and keep them from escalating into four days of hell.
This is not a magic pill, and you really need to practice with it and get used to it. It cost me $400, but over the years I have spent so much - including thousands for botox that did nothing - so I figured what the heck. It won't help all migraines. But if you get overnight migraines, on the side of the head, it may be from clenching. Like I said, I had no idea I was doing this. I wish I had known years ago.
Have you shared your migraine story with us yet?