Re: Re: NCC/Sleeping problems

[Guest guest]

Beth,

Two advices that could help:

1. Just wondering, has Ariana seen a neuropshycharist, this means a

neurologyst who studied psychiatry also, this means both carriers at the

time??? They have a broader perspective from Neurologyst alone or a

psychiatrist alone, they use medicines quite different. I am tellilng you

this, because normally ADHD is treated by a psychiatrist as it is consider

in the DSM IV the manual for psychiatrists, but Chiari is a neurological

disease, perhaps you need someone that has studied both. In Mexico I have a

great experience to share with you. I know a doctor who treated my brother,

he has ADHD and anxiety disorder too, but he did not know it until recently.

He does not have Chiari, but his life changed completely since he was

treated by this doctor, it is really amazing what he did to him. He started

by giving him many drugs, but now, after 5 months, he is just taking one, he

is sleeping like a baby and he is the most normal successful guy you can

imagine, he is a loving parent, husband and working guy, he was not before.

He could n't sleep either, he had permanent insonmia, so he started to drink

and take pills at the same time as he could not sleep at all until he met

this doctor, who diagnosed him with anxiety disorder besides the AHDD and

treat him accordingly, and believe me his life changed completely. Perhaps

you need to open other doors.

2. Has she proven other antiepileptic drugs, suchs as oxcarbamazepine? Ask

your doctor, I just take half of it every night and I sleep like a baby. By

experience I can tell you that all antiepilepetic drugs affects memory,

incluyding this one I am recomending to you, but the issue with

oxcarbamazepine is that with a little amount you can sleep very easily.

However, the ADHD can affect the way medicines are working one her, ADHD

makes the brain work very differently so while some drugs can help her, in

" normal people " they do the contrary, can put them crazy. This is why it is

very difficult to treat ADHD because it is a different brain who responds to

drugs differently.

I hope this serves.

De: Beth Culp

Responder a: < >

Fecha: sábado 26 de mayo de 2012 21:15

Para: " "

< >

CC: kathleengriggjavanet ,

" "

< >

Asunto: Re: NCC/Sleeping problems

Ariana (13) has had insomnia/sleep problems since she was around 4. She just

stopped sleeping. We used Melatonin for years, and then that stopped

working. A few years ago she was started on Neurontin to help with dizziness

and insomnia. It helped a lot for a while. She still takes it, but it

doesn't do much. She had her decompression and fusion almost exactly 6

months ago. It did not help the sleep problems, and now she has memory

deficits that she never experienced before. She is an exceptionally bright

young lady. She's been acting since she was four, but about four months

after decompression, she auditioned for a performing arts magnet high school

and was devastated because she couldn't memorize a 1-2 minute monologue.

(She told the director the situation and read the parts she couldn't

remember and still got accepted). The memory issues are very troubling to

her now. (She's had ADHD her whole life so is always distractable, but this

is different). I wish there were answers, but there don't seem to be.

Beth, Ari's mom

Sent from my iPhone

>

>

> Who else has insomnia? I used to talk with a friend in Alaska that had

> insomnia, but like others on the list, he isn't around anymore. We'd talk in

> the middle of the night when we couldn't sleep.

>

> I wish all a calm peaceful night.

> Kathleen

> Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

> with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

> surgery for everything but EDS since 1998.

[Guest guest]

Hi Everyone,

I have tethered cord syndrome, and was diagnosed with narcolepsy last year.After

my surgery Nov 2010 I started dozing off while driving and sitting at work, I

could not control it, thought it was weird but continued to drive. At one point

I had to get a driver, my commute was 50 miles ONE way, and I was falling asleep

in traffic!Then I started having terrible insomnia, no sleep for days.. I

started sleep walking, and one night woke up banging my head on the

counter!Needless to say I finally went in to see a sleep specialist and was

diagnosed with narcolepsy late last year. The sleep study showed I was going

into REM sleep in 60 secs! (multiple times! The " normal " is 120 MINUTES!)

My insomnia did not get better- my physician told me that narcolepsy and other

sleep disorders often cause insomnia.I was on ambien but have not taken it in 6

months+... still have 4 refills! I am on Adderol and it has made a HUGE

difference in my life. You don't have to start on stimulants- there are other

medications you try first.

My point? If there is something out of order see someone besides your

neurosurgeon.It really was worth getting that disgnosis and being happy, not

exhausted.

I am not sure how, and if the surgery cause narcolepsy, made it worse... or had

no contribution.

Take care!!!

Subject: Re: NCC/Sleeping problems

To:

Date: Monday, May 28, 2012, 9:53 AM

 

I had very bad insomnia. It still is not unusual for it to take me an hour

to go to sleep but that is a whole lot better than before! There was nothing I

could treat it with prior to my decompression. The only thing that helped

sometimes was coffee right before bed. I think it must have relieved my pain

just enough that I could fall asleep....

After surgery I would take a large dose of a good quality calcium (New Chapter's

CalMag was the only one that would work for me)and drink a cup of chamomile tea.

Brew two chamomile tea bags in one mug of water for up at least 15 minutes and

up to an hour. This makes a pretty strong tea and works very well for me.

Also, drinking a glass of wine relaxes the muscles and helps with sleep. I

generally have a glass once a week and it's generally the best night of sleep I

get!

Hope that helps you some. Blessings, Cortney

>

> Hi Everybody,

>

> Sleeping, and memory problems have been an issue with me. I stopped sleeping

> my first night after my first decompression in 1990. I wish someone would do

> research for us. I know many of us suffer from insomnia. I've taken Ambien

> since it first came out. I think it is causing my really bad memory

> problems.

>

> Since my EEG my primary has started to wean me off muscle relaxants. I'm

> half way there. I'll suggest cutting me off Ambien next. I know if I don't

> take it, I don't sleep. I'd rather do that than be the person I am now. I

> have more bad days than good when it comes to my memory. I'd say I have bad

> days 3/4 of the time. I've started to keep a journal, and I was shocked at

> how many bad days I have.

>

> Who else has insomnia? I used to talk with a friend in Alaska that had

> insomnia, but like others on the list, he isn't around anymore. We'd talk in

> the middle of the night when we couldn't sleep.

>

> I look forward to tomorrow, Jeff and I will try to kayak, I hope I remember

> it!

>

> I wish all a calm peaceful night.

> Kathleen

> Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

> with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

> surgery for everything but EDS since 1998.

>

> http://chiariconnectioninternational.com/

>

>

>

>

>