My only hope is to find what happens when I sleep

I cant see any future. I am out of ideas. I almost never get migraines when I am awake.
I long to sleep when in pain, but sleep is not my friend. It brings pain.
I think I have googled myself out trying to find an answer.
I seem to have tried everything. It isnt every single night.
But it is 99% of migraines. How can I sometimes sleep and wake in just my morning pain.
And others all Hell lets loose???

I dont know where to turn now, it seem hopeless.
Surely I must have missed something.....

Pen

You are not alone. My migraines seemed sleep related. I awake always in exteme pain. Headaches also change when asleep. Wake up with a different kind. Bottom line....my dr. ordered a sleep study. I did it. It showed nothing. Other then some beathing irregularities. it was a dead end. I have given up on the whole idea. It simply is... (I am beginning to think staying away from google is a good idea)

gail, i'm so sorry your sleep study didn't show anything much. i've had five of those, and now i think they were also pretty much worthless, since i can't tolerate any of the apnea treatments or machines.

i had an appt. with the NICEST sleep doc yesterday (i've consulted 4 others over the last 8 years) and he basically said my apnea is mild, and to go ahead and take my ativan/aka lorazepam as often as i need to. he doesn't know, nor does anyone else, why my sleep is so fragmented. but he does blame most of my problems on the trashcan diagnosis of fibromyalgia.

since ativan is a drug that quickly builds tolerance in me, i must be very very careful. i'd love to take it every night, so at least i'd be unconscious. i really do wake up with much less pain on the nights i take this, because i wake up only once or twice, versus hundreds of times, as shown on the studies.

pen, i feel for you, also. it's a hopeless feeling, but we do have this forum and personally, i'd be lost without it. dianne

Thanks Diane. I havent had a sleep study. They dont seem very common over here. But given the experiences of others on here.....Hmm

As far as the fibro goes. I think it might be responsible for the "whatever" occurs in the night.
If I sleep in the day time (almost never), I dont get a migraine. So could be circadian rhythm or something? I really dont know.

I mentioned on another thread. I go to the GP. None of the 6 of them really subscribe to Fibro.
But if I go with "symptoms". I get them hung on the fibro....I love the consistency of these people.
And my life is in their hands.....

My new neurgo who happens to be a sleep expert (not a migraine expert), is sure my migraines are due to a sleep problem. He wanted me to do a sleep test but I never showed up. I have never had a problem sleeping my whole life and doubt if anything is sleep related for me even though at night is when I get them. Maybe I should have it done just to rule it out and will help Pen out also to see if it is worth pursuing. My gut feeling is that it will just be a waste of my time (again).

estre, i can speak to sleep studies as i've had so many. they are definitely un-fun, but not as bad as you would imagine. you just get about 25 leads glued to your head and anatomy, and believe it or not, you WILL fall asleep.

if your insurance will pay for this, why not? it's only one night of your life, and important info might be gleaned, right? dianne

Diane- thanks for the headsup. You made up my mind NOT to do it I honestly do not think it has to do with my sleep or I would do it. Or, if my migraines weren't manageable I would of course do it to rule it out. At this point though I think it would be wasting my time.

It isnt an option for me, and given I figure if I could stay awake all the time I wouldnt have migraines.
I would do it. But we just dont seem to get offered them.

glad i could help, estre! you are thus saving your government and/or insurance companies lots of $.

wishing we all could find THE KEY. dianne

One possibility--increased intracranial pressure which can contribute to increased head pain when laying down.

Decreased intracranial pressure can contribute to more head pain when upright.

For some people that I know.

I'm sorry, Pen.

Cheryl

I'm wondering. I always wake with mine. They don't come on during the day (except on very rare occasions). And funny thing is, I always wake up feeling like something the cat hacked up but as I'm up I often feel better, if not then time to hit the drugs. Does make me wonder if my sleeping doesn't have something to do with it but I doubt that's enough cause to get any sort of sleep test....

if you wake with them, try talking to your dentist about whether or not you grind your teeth when you sleep. Clenching and grinding can be a cause for migraines...might be worth a shot!

Me, if I sleep on my back, almost always, I will get a headache. Some times, I can recover from it. I have the Chiari pillow, no help in preventing this back of head headache.

For sleeping on my right side, I use a foam side sleep pillow. Even then, I get up at night and pillow an ice pack on my left side. That helps a lot.

I checked with a TMJ dentist, who makes the NTI device. He said, I did not need one.

I told my neuro about my pillow headaches, he gave me Baclofen (a muscle relaxant). Some times, it helps with the headache and gets me some sleep.

Martin

I often start with the pain in back of my head. It is like someone trying to axe their way out.
I call it "axe man". It usually develops into migraine if I cant get it in time.

I have removed the memory foam pillow, it has been exacerbating my jaw pain.

As for the dental thing. They told me it wasnt a problem, but we tried a splint anyway.
Wore it for 6 months....not a jot of difference sadly.

Becky if you feel like a wrung out dish rage when you wake....check out fibro.
Sure that is what makes me feel like that. Can sleep all night but wake feeling as if I never slept at all..

P

Martin: What changed when you swtiched to your chiari pillow from your previous pillow...in what way did you feel better. I have just googled it. Looks interesting....

I am now back to the foam side sleep pillow. When I first tried the side sleep pillow and I woke up with very low level neck/headaches. Then after a couple of weeks or so, the headaches/neck pain came back. I then placed two folded (folded in quarters) bath towels under the pillow and again the neck/headache pain were low level.

I bought the Chiari pillow, the one that you can remove/replace the bits of foam so I could adjust the height. Again the same thing happened as with the foam side sleep pillow: first few weeks, very low level neck/headache pain. After a few weeks, the headaches/neck pain came back. With the Chiari pillow, I have trouble with the bits of foam shifting when I am sleeping.

I am still experimenting with replacing/removing bits of foam to change the height. However, when I take a nap, sleeping on my back, no matter the height, most of the time I get a headache/neck pain. Most of the time, I can recover after an hour or so.

To me, it must be that the height of the pillow has to adjusted to keep the neck and shoulder muscles limber, even if I do my neck/shoulder stretching exercises before bed time.

Your question made me think, I believe that the neck pain has lessen quite a bit, while the headaches are still a hit and miss thing. But, as I said, placing the ice packs on my left side when I wake up (at night) with a headache really helps me.

Sorry for a very long winded explanation, that makes little sense.

Martin

Thanks for the info. It sounds as though your body gets used to the position and the headaches come back. Just as with some medication It works at first then stops. i guess all you can do is switch back and forth. (pillowsthat is) Have you ever tried a Buckwheat pillow... I have not but have been looking into it. It is never ending it seems....

I have a buckwheat pillow Gail. It is so noisy, it keeps me awake...
It hasnt helped my head or neck one bit Im afraid....

P

I also have a buck wheat pillow, I tried it for one night and the right side of my neck was sore. And as Pen says, it is noisy.

Martin

noisy.....who ever heard of a noisy pillow....

It really is noisy Gail. It has al these little husks inside and they rustle around when you move your head.
They shift like sand....noisy sand.

Given I started this thread to try to determine what might help at night.
I can tell you from my point of view, they dont...

Well, tried all of my above theories with the pillows and ice packs, nothing helped with the headaches and neck pain. Should have taken a Tylenol or a Midrin.

Martin