sleeping problems

[Guest guest]

Hi Kathleen,

I share your memory and sleeping problems.  I have had chronic insomnia as far

back as I can remember (age 2 or 3). My parents said that I would lie awake in

my crib for hours.  I started taking sleeping pills off and on when I was in

college in the '60's...seconal, thorazine (gave me a seizure), valium, then

Dalmane, Sonata, Lunesta, Ambien and now Ambien CR.  I was watching the NBC news

one night about 7 years ago when they interivewed a local psychiatrist who runs

the sleep clinic at one of the local hospitals.  He said on tv that he did the

clinical trials on Lunesta and he was convinced that some people could not sleep

w/o medication.  That was me! So I got an appt. with him and during my 16 months

under his care, I found out that I had Chiari. I had been having balance

problems and finally convinced him that they it was not just anxiety and

depression as he had thought.  The Chiari was discovered on an MRI by a smart

ENT doctor who

worked with at the same sleep lab.  Having been labeled " just too anxious " all

my life, who would have thought that at 59 I would finally find out why I have

never been able to sleep and why my nervous system gets overstimulated

easily....it takes forever to calm down.  I am now 65.

 

I have been taking Ambien CR every night for 4 years and even though I know it

affects my memory, I cannot sleep w/o it and I desperately need my sleep to deal

with the pain of all of this.  The first Chiari specialist/nsg that I saw said

that sleep is controlled by the vagus nerve which is affected by the Chiari.  I

also take a small amount of anti-anxiety medicine for my balance problem

(disequilibrium) and the frequent adrenaline rushes that I get.  I am on

compounded hormones for the severe hot flashes that come with the adrenaline

rushes and I take meds for high bp which may or may not be Chiari related. My

nsg felt that the adrenaline rushes are caused by the Chiari. Some days I feel

like a walking pharmacy.  There are days when I am in a fog and my memory seems

shot. Like you, I also have good days.  My mother had dementia for 4 years

before she died and my father died of Parkinson's disease, so I fear ending up

like them. When your head

doesn't feel right, nothing else feels right.

 

Here's something of interest:  my sister who does NOT have Chiari had a terrible

car accident in '72.  In order to save her life the doctors had to remove part

of her stomach and in the process cut the vagus nerve.  She has not been able to

sleep on her own since then.  Each night she  takes either Lunesta, Ambien and

white wine to sleep, but never two at the same time!  Her doctor thinks she is

crazy, but continues to prescribe the medications.  Sleeping meds have not

affected her memory and she has had a very successful teaching/writing career

over the last 40 years. 

 

Sorry this post is so long, but I clearly needed to vent too.  I wish I had a

magic wand to wave it all a way for all of us.  Meanwhile I try to practice

meditation, gentle yoga, deep breathing and healing touch to help calm the

nervous system.

 

Connie