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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.

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Comments

  • Chen
    2 years ago

    In the last 3-4 years I wake up almost every night with a migraine at different hours. No doctor paid any attention to this information. I have no idea if I gring or clench my teeth at night. I do have a tendency to clench my jaws during the day. I just purchased it and soon will be checking. Thanks a lot for the information. It is so nice to have some hope.

  • Sunny author
    2 years ago

    Hope it helps. I found it helped to play with it at first while awake, just to see what kind of movement sets off the tone, how loud I wanted it, etc. Just get a baseline with the tone turned off, then follow the directions for using it and practicing with it. It took awhile, but for me at least it paid off. Good luck.

  • NanHart
    2 years ago

    Can someone post a link to the name and possible places to purchase? I have been told I clench and the mouth guards cause more trouble with my RA in my jaw and pain in teeth so they are a no go for me. thanks.

  • Sunny author
    2 years ago

    It’s called SleepGuard. I’m not sure if I can put a link, but if so it is at http://mysleepguard.com/solution/how-it-helps/migranes/
    Otherwise, you can just google mysleepguard to find it.
    I had to adjust the elastic so it wouldn’t be too tight. I wear it really low on my forehead. As I said, you have to work with it – but you can adjust the settings so it will be quieter or louder, and more or less sensitive, and basically see what you’re most comfortable with. It was $400, which is not cheap, but it really seems to have helped. It’s cut back on my clenching – I still get woken up by the tone some nights, but I’d rather have that, than sleep through and get a migraine. Good luck.

  • bflessa1
    2 years ago

    I have the same problem with waking up with migraines around 3:00 a.m – 4:00 a.m. I am currently on Botox and so much other medication. Can you tell me where you purchased the biofeedback headband? Thanks,

  • Sunny author
    2 years ago

    Wow – that sounds just like me. I posted a link to the site where I found it in the July 14 reply. If it’s not there, you can just google “sleepguard headband”. When I first used the headband without the tone to get a basline reading, I could not believe how many times I was clenching in my sleep. Good luck – hope this helps you.

  • Tamara
    2 years ago

    Hmmm I may have to look into it and try it. I clench and grind my teeth constantly (spent over $20 000 plus whatever the insurance paid to try and help – 3 rounds braces and jaw surgery – which was done very poorly and probably the rest why everything is messed up now and I have been in constant pain for over 2 years.

    I don’t even know how many bite guards I have had and chewed to pieces. We even tried one 24/7 including meals to see if the muscles would release – nope all it did was allow juice and food to get underneath – ruined my front bottoms so bad they were cut in half and had to be rebuilt and 2 cavities in the back. My dentist is a TMJ specialist – he goes around the world to teach other dentists, I have been used in many of his presentations lol. I am his only patient that has not been able to get a significant improvement in symptoms.

    I also get trigger point injections (lidocaine) into both inside and outside jaw muscles and in my temple region at least twice a week for the last 2 years – the muscles have NEVER released and still are tense and seized up. I can barely eat most veggies unless they are over cooked and soft. Apples, hard fruit etc are no goes and I don’t remember the last time I ate a steak – probably over 6 years ago. I am so sick of protein shakes/smoothies and soup lol

    And I had severe whiplash from a car accident and we all know jaw and neck and head are very connected so I’m positive the TMJ issues are the root cause. I have always had pain in my jaw (it is malformed, flat, arthritic and rubs) since I was a child (maybe even from birth?). I had a severely narrow and malformed jaws and started braces at age 6 when the average was 11.

    Where did you find the headband? Hopefully it’s not too pricy. 🙂

  • Sunny author
    2 years ago

    I’m so sorry for all you have gone through. The price is $400 – not cheap, but less than a custom mouthguard. What the headband does is make a tone when you clench – so if you’re clenching because you’re not aware of doing it, it might help. Obviously, when asleep we’re not aware. But if you’re doing this during the day, you could try wearing it when you’re home just watching tv or reading. There’s a link to the site where I found it in the July 14 post, or you can google “sleepguard headband” Good luck

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