I'm in the third mo. and its getting worse.Its gotten now to where I never  even get sleepy.I go to bed every night about the same time w/ no sleepiness at all.Its all I can do to force my self to doze off.As soon as I do it hits.I'm getting maybe 60-90 min. of sleep per night and still never really seem to get sleepy.Anybody else with this problem and any suggestions?

Tried melatonin? It can be useful, especially when the hits are hardest at night and circadian cycles are messed up.

how much should I take and can it make it worse?

I haven't heard of melatonin making it worse for anyone. I'd start at about 6-9 mg, 30 minutes before you go to bed. It may take a couple of days. Helps a lot of people avoid the nite hits.

Are you on any preventative medications yet? Verapamil, Lithium, there are many to read about on the meds board. Lithium, at 1200 mg a day, blocks 70-80% of my attacks and eliminates most of the night hits for me.

Joe

I was on topomax 50mg at bedtime for about 3wks. Mon. my neuro upped it to 100mg. The 50mg didnt seem to help. We'll see about the 100mg. Im not sold on it being effective at all.

Im not a fan of topomax.

Melatonin made it worse for me for ht efirst 2 days I took it and then it got better and was helpful.  I dont think I;m alone in the regard that it DID get worse but then ended up being a big benefit.

Have you tried a prednizone taper....... they always seemed to work for a few days for me and let me get much needed sleep.

It does sound as if you need to get ma new "cocktail".

PFDA!!!!

I used to have trouble sleeping as well during a cycle.  I think it was a subconscious fear of getting hit while asleep.  Then after O2 entered my life, I found myself able to go to sleep more often than not.  I feel my mind was put at ease with a new line of defense against the beast...
       
I did not see you mention you having tried O2 in your posts.  If not, I would suggest some O2.  

Many PF wishes
Thomas
 

monty wrote on Feb 15^th, 2009 at 9:04pm:

Tried melatonin? It can be useful, especially when the hits are hardest at night and circadian cycles are messed up.

yep that works for me as well. give it a couple days to work. heres a few suggestions.

use a vaporizer or a humidifier in the roam your sleeping in. moisture is the key.

open a window in your bedroom. the colder the better. i've actually gone so far as sleeping on the porch in a lawn chair.  sounds crazy doesn't it

keep your o2 handy for when you wake up. DON'T WAIT!. as soon as you wake up crank it up and suck it in. don't kid yourself. once it wakes you up it's going to get worse.

use  those breathrite strips that go over your nose.

be sure to elevate your head. try sleeping in a recliner.

keep this in mind. theres going to be nights when your not going to get sleep no matter what you do. you have to except the fact that sleep is a trigger. what ever you do try to keep your sanity. you'll be alright ;)

I am very much affected by sleep.  Most of my attacks are sleep triggered.  It can ruin you... lack of sleep and fear of sleep.  Melatonin helps for a lot of people... it didn't do much for me.  I was resorting to an imitrex pill before bed until Verapamil kicked in.  Now I rely on O2 and verapamil.

Before I discovered Melatonin, my neurologist prescribed naratriptan (Amerge) at bedtime. No insurance company in their right mind will pay for a triptan used as a preventative, so my neurologist supplemented my script with samples. Worked great for a couple of months to get me through that particular cycle.

Prednisolone works well until verapamil kicks in. (Do check the side effects of prednisilone though).

I also found that if I had strong shadows before going to bed I would use sumatriptan (Imitrex) 15 to 20 minutes before going to bed. I did this at the peak of cycle and it helped with getting some sleep.

Are you using O2?

Hope this helps.

Best wishes,

Ellick.

I recommend you to try Promethazine before sleeping, while I recommend Prednisolone for preventive medication for attacks

I tried Promethazine (Phenergan) 20 mg before sleeping and slept deep and good enough.

the difficulty in sleeping is coming from problems in hypothalamus in brain that controls the auto system of the body and timings. i think maybe promethazine ahs some efffects on hypothalamus also.
I didnt tried the melatonine but i used crude Olive oil also that has some melathonine.

wish you good sleeping

Farzad

I have the same problem.  I beleive that I have talked myself into not being sleepy for fear of the hell that is to come.  It was 12:02 am and my wife asked why I didn't go to bed.  This was asked in a rather harsh manner.  I told her that it was 12:02 and if she knew that in a couple of hours she was going to walk the "Green Mile", would she go to sleep.  My point was made.  I am in a cycle now that began at the end of January and i rarely get more than 2 hours of sleep.  I am a school principal and it is a chore to function everyday.  I understand how you feel. I finally get to the point of exhaustion and I crash until the beast comes calling.  Happens every night!!!

On the other side of the coin with topamax. I've taken it since 99 and swear by it. It's been my magic bullet. I take 100mg at night along with melatonin (15-18mg) and sleep at night.

This has worked for me for years. I get thru the nights and am rested to fight during the days. It took a while for the melatonin to start working but when it did it worked, so give it a fair shot before you say it won't work.

As far as the topamax goes. I've been on some high doses - for years I was on 300mg at night, but am down to 100mg (maintenance dose) right now. It depends on the level of the CH (that's what my neuro says).

I use O2 for aborts and very occasionally cafergot.

The thing is you have to give things a fair shot to see if they work. A month or so at least. You can't tell after a day or two. Some of these meds take a while to get in your system. A lot of docs will give a pred taper while the other meds are getting in your system.

Hope you're pain free soon.

Hugs BD

I started using the melatonin, 10mg, three weeks ago and although I had a couple of night hits, I haven't had a hit in almost two weeks.  We also upped the verapamil to 480mgs but it did not impact me until after I tried the melatonin...  

I also use O2 when I am home; when I HAVE to sleep and I get a night hit, I use Imitrix, otherwise the O2.

My cycles start in January with night hits that last for 3 hours, then add a morning hit, and an afternoon hit!  I hate spring although these treatments have been life saving.  I am learning to like spring...