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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Persistent, unrelenting insomnia
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Message started by Barbara_G on Feb 22nd, 2006 at 3:48pm

Title: Persistent, unrelenting insomnia
Post by Barbara_G on Feb 22nd, 2006 at 3:48pm
Hi everyone,

My son, 16, is challenged with moyamoya, dxed since age 10, but certainly had strokes prior to that with the wrong diagnosis.

Anyway, he has a horrid time falling asleep at night.  we have done everything. Really.  I know that he has PTSD from so many surgeries, tests, hospitalizations, etc.  

So, my question is--do other people have insomnia as a result of moyamoya?  I did read the "mind racing" thread, and I know that his mind is racing, because he chats up a storm when it is time to go to sleep.

We (his parents ) are sooooooooooooooo sleep deprived right now, in addition to him being sleep deprived.

We have tried Ambien, which did seem to help, but every MD is skittish about prescribing a sleep med on a long term basis to a person under 18, because it is addictive.  

Has anyone out there used sleep meds for long term use?  

Another thought I have is that he is possibly having spasms/twitching, general body discomfort and he can't get in a comfortable position.  He has some limitations to his ability to communicate so I can't be sure that he does or doesn't.

Any help/ideas/resources are greatly appreciated!!!!!!

Thanks,

Barbara

Title: Re: Persistent, unrelenting insomnia
Post by kotipup on Feb 22nd, 2006 at 11:05pm
Our daughter, Daphne, has had a history of being a bad sleeper at night.  She's only two, so for her age, I don't think it's all that unusual to want to nap during the day, and to be inconsistent about sleeping at night.  When she does seem tired, but unable to get to sleep, we have given her Melatonin.  It almost always has worked for her.  Most neurologists now recognize the benefits melatonin can have... so, if you haven't already tried it (I know it doesn't work for everyone!) you might consider asking your son's neurologist about it.  Melatonin is OTC... you can get it at most health food stores, and online.  1mg does the trick for Daphne, but I think adults can safely take 10mg.

Also, there are some homeopathic sleep aids out there worth a try (hey, ya never know!).  I've known several parents who swear by Hylands Calms Forte.

Good luck.   Believe me, I can sympathise with the sleep deprivation.  I hope you find something that helps your son sleep soon!

Jenny

Title: Re: Persistent, unrelenting insomnia
Post by Barbara_G on Feb 22nd, 2006 at 11:32pm
Thanks Jenny--

We have used both those products and they did not help.  I am now thinking about finding out about Lunesta as it has been approved for long term use.  

Title: Re: Persistent, unrelenting insomnia
Post by hell_bytch_1 on Feb 25th, 2006 at 7:07am
Barbara and Jenny,

My Dr. perscribed me Trazodone for sleep. He started me out on 50mg right now. And that was the only one he was able too find that didn't interfere or cause constriction of the arteries in the brain. Lunesta hasn't been out on the market for very long. And when I came home from Boston and saw my Dr. here in Maine I asked him about Lunesta,and he found that Lunesta is good for "normal people" without MM but lets face no one with MM is normal. [smiley=laugh.gif] And all the other sleep aids out there constrict the arteries in the brain. Caffine is also constricting. The first night that I took Trazodone, it took and hour for it too finally kick in. For one my body wasn't used too sleep, 2 the med slowed my mind racing down,3 it's such a low dose. But when it kicked in I slept all night.  And it's mostly used for heart patients. Most of the all natural sleep aides on the market are brain constricting as well. I have been doing alot of research as well as my doctor and i found out that Melatonine is constricting as well. I thought too myself "I just had the Left side of my brain fixed, why would I want too mess that up by taking something that will constrict my arteries that I just had fixed?" And I was assured by my Dr. and Pharmacist that Trazodone is non-addictive.  

Title: Re: Persistent, unrelenting insomnia
Post by ExtremeLife1986 on Mar 2nd, 2006 at 1:52pm
Hello Barbara,

I am a 19 year old with moyamoya and I to have a case of insomnia. I though was prescribed sleep medication but was just told to be carefull and only take it once and a while so I will not become addicted and dependent on it. Yes I to do sometimes find myself being unable to become comfortable when trying to sleep and always toss and turn trying to get comfy. Then I find myself just getting comfy but then my mind races starting to think about everything and anything serious or stupid. I would try though convincing your doctor to prescribe something and you can limit him on taking it as my mother does. I have had a bottle of Temazepam 30 pills for almost a year now and am now just finishing up the bottle. I found myself once I caught up on mysleep it becomes a little easier to sleep until the insomnia kicks in again. I hope this helps in some way !!!

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