I’m new to this forum, so this is my first post. I see that a number of you are also having sleep issues. I have an AVM in my brain stem that bled 20+ years ago when I was 29. I recovered well (it’s still active) and only had one remaining issue to deal with and that was insomnia. It was manageable until this year when I had a re-bleed (age 51) and now the insomnia is really bad. I go for days without sleep and I’m hoping this group might have some solutions. My neurologist and neurosurgeon tell me the insomnia has nothing to do with the AVM, but that’s hard for me to swallow, because 20+ years ago I never had any problems sleeping. The re-bleed was small, so I’m thankful for not having to go through what I did the first time BUT, I’m a mess with this chronic insomnia. I also have swallowing and other sporadic additional issues, but I’ll start another discussion for those.
Do any of you watch Dr. Oz? :-) He recommended Wild Lettuce (30 mg). Has anyone tried this?
Hi JC, We have too much in common for me not to reach out to you.
I had my first bleed in 1994 at age 30. Also located in my brain stem.
My doc didn't want to touch it at first, but as my health deteriorated,
we had no choice. Oh, yeah, brain surgery sucks, but it did work out.
Can't say I've had a chronic sleeplessness issue but
certainly have had my moments. Exercise helps me a lot. But, so does
a glasss of wine. :) Anyway, welcome to the neighborhood.
I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Insomnia
I can tell you that I know someone who was hit and dragged by a car a few years ago. She suffered brain injuries and cannot sleep either.
Thanks for reaching out to me. Wow, we do have a lot in common. I'm glad the surgery has worked out for you!! I live in Columbus Ohio and have seen 2 neurosurgeons and 2 neurologists this year since the re-bleed….only 1 of them was willing to touch it. I honestly don’t have a comfort level that the doctors in Columbus have AVM (located in the brain stem) experience. Would you be willing to share who your doctor is? The 1 neurosurgeon didn’t give me a warm and fuzzy about what the outcome would be if I have surgery.
When I had the original bleed 20+ years ago they had me on heavy doses of steroids and my sleeping has never been the same. I’ve always been very active in exercising and agree with you on that helping! I’ve never been much of a wine person ;-), but maybe it’s worth a try.
Thank you...I'll read through these!
I take melatonin to help me sleep. And, I'm not groggy the next day. My pills are 3mg and I take two of them. You need to play with it a little bit to determin how much you should take. Sometimes I can get away with only one. A friend of mine takes three. I take it about 1/2 to 1 hour before I want to got to bed.
I get it in the natural section at our local pharmacy. Walmart also has it.
Hi JC - I, personally, don't have the very common issue with sleep - unless fatigue rocks my world at a weird time, and I go zombie-style (it looks like I'm awake, but Ily zoned out and not litening to anything), without a nap and then my whole sleep schedule is screwed up for a few days.
However, in general, from what I've read, sleep is a pretty huge issue.
Ben mentioned melatonin; although I haven't tried it, I heard that it works well - as long as you're not an "over-achiever" with it and take too much. Then, I heard that it actually backfires.
I heard something on Dr. Oz that drinking an 8-oz. glass of tart cherry juice .5 hour before you sleep is supposed to help.
Another thing that might work for more sleep is meditation - centering and quieting the mind - about .5 hour before sleep.
Also, I know Ninibeth talked about chamomile tea, Tradition Medicinals makes a sleep-tea with chamomile and passion-flower and other things - but both of these mentioned are supposed to be good for sleep.
I also heard that lavender is supposedly helpful - in a manly sachet or sheet spray.
With all of these liquids, you probably want to go to the bathroom before sleep :)
Hmmmm... will I share my surgeon's name? I'd scream it from the roof top if I had the chance. Even after 18 years, I remember it vividly. He invited a couple of family members & I into his private office to discuss our options, which were few. He reluctantly said it was time to operate. We asked him, if it were his son who was the right surgeon for the job? He said he would not operate on his own son but that he was one of only 2 men in the country he would trust to operate on me. A bit of a God complex, but I think that's want you want in your neurosurgeon.
My surgeon was Dr. Eugene Flamm, who wqas the head of neurosurgery at The Hospital at University of Pennsylvania,(HUP) in Philadelphia. He has retired from surgery but is still on staff at:
Montefiore Medical Center NSG
3316 Rochambeau Ave
Bronx, NY 10467
It's worth a phone call or sending him your brain scans to look at. He may not be operating anymore but I'm sure hew can refer to thwe right person.
Hi again JC - I forgot that I had this, too.
I'm kind of a sleep-nazi.