Sleep Disorders Community

Dear Pinky,

I haven't had brain surgery (I personally think I need it.... long story) but I have issues with my skull/neck/cerebellar tonsill anatomy that puts pressure on the sleep center area of my brain and causes insomnia for me so I feel for you. I don't know if I can answer your particular questions, but I at least wanted you to know there was someone else out here in insomniac cyber-land not sleeping tonight and feeling your pain. I do have a question for you. I find that I am able to get into that twilight sleep where you are starting to drift off but you still have some awareness that you are not fully asleep yet and then I get stuck there and that's where I stay. Do you experience that? If I do get into a full sleep I wake up in 10 -15 minutes and then I am up an hour or 2 before I go back to sleep. Just wondering if our experiences are similar at all. Good luck to you. Remember to keep Hope. Cheryl

Hi Pinky
I would love to know how you are getting on. My daughter, 31, just had an AVM successfully removed from her right frontal lobe. Apparently It had been pushing on her hypothalamus. She did have insomnia before they found the AVM but it has worsened in the 6 weeks since. She gets to sleep OK but never goes longer than 3 or 4 hours. She is on a low dose Dilantin, which could be part of the problem. Anyway, the neurologist and neurosurgeon don't seem very interested. She is doing really well, back exercising, preparing to return to work. But if she does not get more sleep, she will not do well when she returns to the office where she works, ironically, as a mental health counselor. Medications of any kind, and we have tried everything from gravol to zopiclone, do not help her. She is also unable to nap during the day.

Does anyone have any experience that will help us? Will this insomnia dissipate on its own?

Many thanks.

Dear Vickio2,

I'm glad you've found us. Unfortunately, the thread you replied to is a year old, and it's unlikely you'll get a response from the original posters.

I would like to suggest that your daughter get evaluated by a sleep expert. I found an article that says Brain Injuries May Lead to Sleep Problems . "People with traumatic brain injuries may produce reduced amounts of melatonin causing sleep problems, a new study suggests." You can click on the link to read more.

Best wishes to you and your daughter,

Byroney

I I had brain surgery in Feb. 2010 for a ruptured aneurysm. I too, am unable to sleep. I have taken ambien but had to keep increasing the dosage so stopped that. I read that after brain ssurgery your brain sometimes doen't make enough melatonin(which is what starts the sleep cycle. I am currently taking 6mg og melatonin at night but it still takes me hours to fall asleep. I hope this goes away soon.

IN SEPT. 2011 I HAD A CANCEROUS ELST BRAIN TUMOR REMOVED. I WAS BLESSED ( DESPITE HAVING A CFS LEAK, 2ND SURGERY TO INSTALL AN LP SHUNT & MENINGITIS, & BEING IN LOS ANGELOS, CA FOR A WHOLE MONTH & 5 DAYS!). I LOST THE HEARING IN MY LEFT EAR, MY BALANCE NERVE ON THAT SIDE & MY JUGULAR VEIN. BUT ALL IN ALL I AM GREAT! EXCEPT FOR DIZZINESS STILL & BLASTED INSOMNIA! I TOO HAVE FIBROMYALGIA & A VERY "UPSIDE DOWN" LIFE. IT IS 7 :30 A.M. NOW--I GOT UP YESTER DAY AT 5 P.M. & HAVEN'T BEEN TO BED. I AM TIRED, I HURT...I AM SICK AT MY STOMACH, HAVE A HEADACHE-------AND CAN'T SLEEP. I AM GOING BACK TO THE DR. SOON. I WANT TO KNOW HOW TO FIX THIS. SLEEPING PILLS DO NOT WORK WISHING YOU LUCK! THIS IS AWFUL.

P.S. NEW PRODUCT--A BEVERAGE--CALL NEURO SLEEP, HELPS. IT WAS SOLD IN THE HOSPITAL IN L.A. & I ORDERED A CASE FROM AMAZON.COM. IT IS ORANGE FLAVORED & PLEASANT TO DRINK. JUST TOO EXPENSIVE TO DRINK EVERY NIGHT ( FOR ME). LIKE $36.00 FOR A CASE OF 12?

Hi Heidi
I think our stores are very similar. My daughter isn't taking sleeping pills because they simply don't work for her. She went to a sleep disorder clinic and they suggested other anti-depressant meds (which didn't help) and a very tough sleep routine designed to re-set her sleep response system. It simply wasn't realistic for someone who was trying to return to work after something as traumatic as bran surgery. We decided to learn everything we could and began adding one natural supplement, then experimenting on a trial and error basis. We are currently experimenting with 5Htp, which is supposed to improve your REM sleep, the component of sleep that's vital to sustain memory, My daughter feels that her memory is taking a big hit as a result of her insomnia. We are now taking 100 mg of 5Htp and 3 mg of sublingual melatonin at night. Plus...we add about 30 drops of California poppy tincture (you can buy it at any decent health food store) into some camomile tea. So far, this combination is encouraging, she is getting about 5-6 hours of light sleep. (We bought a piece of equipment that tells you how long you sleep and whether it s light, REM or deep sleep.) But we need to give it some time. I checked out the Neurosleep product mentioned by Donna below, and it looks great: it contains all the ingredients we have researched on our own and does not appear to interact negatively with any medication. I would suggest it's worth a try if you can buy it near your home or get it from Amazon. One thing to note: 5Htp does interfere with a long list of meds, especially anti-depressants, so it's worth checking it out if you are taking any kind of prescription drugs. And take it two hours after taking a prescription drug, just to be sure. Hope this helps a little....

Hi Donna
Thanks for the info about Neurosleep. We went across the border today and brought some back to try it out. It looks like a perfect combination of natural sleep-inducing ingredents and appears to be very safe. Do check out 5Htp. It is used for a lot of things including insomnia, depression and fibromyalgia. But make sure it does not interfere with any prescription meds you might currently be taking.

hi
it is 4am and i have not gotten to sleep. usually i take a nap in the am when my husband leaves for work at 5;15. even then i sleep only a few hours. yours sounds much worse if you are awake over 24 hrs!!!!

i had a brain tumor removed 11/20......since then i have had insomnia. i was on steroids, and they told me as soon as i stopped them, i would sleep. wrong. now i am going thru my list of meds to determine if any of them are causing the sleeplessness.

my neurologist will not give me a sleeping pill....he just says tylenol for nights!! my daughter who is a pharmacist said they gave me zanex in the icu, so i should try that. i am not sure what to do. i have tried all the herbal solutions, as well as teas....just like you probably have. i ordered a sleeping aid that was on dr.oz's but it has not come yet....joyce/pgh

Hi everyone,
I had brain surgery in 2006 and immediately afterwards the next few days I slept great. 7 days later, I developed a very bad CSF leak and had to be reoperated and after that I sleep but I never dream and wake up so tired and feel tired the whole day. I have been to the neurologist, neurosurgeon and sleep clinics and had a sleep study but no solution and most of the times nobody believes me. I have tried ambien, valium, melatonin, antidepressants and nothing has worked. Sometimes taking B complex tablets helps and I wonder if it can do anything at all.
Just wanted to see what everyone else is doing.