Re: Experience with Elavil

[Guest guest]

Elavil worked very well for me at a very low dose - 25 mg. one time a day.

Gretchen

[Guest guest]

Hello,

I take Elavil at night. It really helps me sleep. In fact, my doctor says Elavil

is the only drug out there that helps with all four stages of sleep.

I haven't had any side effects, but I'm taking so much stuff I'm not sure I'd

know a side effect if I saw one!

Jim

[Guest guest]

Hello Jim and All,

I sometimes wonder how especially important it is for us to get a good

night's portion of regular sleep. We suffer much more the day after than

an average person. Small amounts of medication to prevent sleep

inhibiting muscle tics, spasms, tensions, etc. is really vital to being

more effective as well as comfortable during the day. It directly relates to our

endurance in performing daily tasks.

This is an aspect that doctors seldom cover unless they are asked directly. It

should be a major treatment scenario of CMT/HNPP. How much to take, what

particular medication works the best for the individual, etc. should be at the

forefront of a doctor's advice for patients of any age. The effects are a

lifelong accumulation of an unavoidable situation and we should work and scheme

to conserve as much as we can over that lifetime no matter what the individual

aspect is for each one of us.

75 EdM from NH

[Guest guest]

One of the side effects of Elavil, or its generic form amitriptyline, can be

sleep disturbances like sleep apnea.

This was listed as one of the side effects in the the book where they look

things up whatever it's called, I think it's the DSM, but it could be called

something else.

I had such sleep disturbances which went away when I distributed my use of the

drug to three times per day instead of everything at night.

Doing so also helps with the, “hangover,” that you get when using this drug if

you wake up too early, and the drug has worked itself out of your system yet.

Also the cousin nortriptyline is easier to take and has less side effects, so

you may want to take these observations to your doctor and let him look it up.

Currently I take nortriptyline in the morning, and not at bedtime.

Hope that helps.

On Mar 15, 2011, at 11:18 AM, Jim Steele wrote:

> Hello,

>

> I take Elavil at night. It really helps me sleep. In fact, my doctor says

Elavil is the only drug out there that helps with all four stages of sleep.

>

> I haven't had any side effects, but I'm taking so much stuff I'm not sure I'd

know a side effect if I saw one!

>

> Jim

>

>

[Guest guest]

Ed and all,

Actually sleep issues are another thing that my daughter's neurologist thinks

Elavil will help with. If all goes well with her EKG tomorrow I think I will

start her on it. Thanks for all of the input!

Barb

[Guest guest]

I checked (http://www.drugs.com/elavil.html) which says that Elavil is an

anti-depressant, not a sleeping pill. Not that I don't need both...

Jerry Walfish

________________________________

From: Jim Steele <jimsteele@...>

Sent: Tue, March 15, 2011 2:18:09 PM

Subject: Re: Experience with Elavil

Hello,

I take Elavil at night. It really helps me sleep. In fact, my doctor says Elavil

is the only drug out there that helps with all four stages of sleep.

I haven't had any side effects, but I'm taking so much stuff I'm not sure I'd

know a side effect if I saw one!

Jim

[Guest guest]

I had taken Amitriptyline (the generic version of Elavil) last year on a

very low dose for addressing a cough problem. I had severe fatigue problems

(i.e. I had challenges getting up in the morning and feeling tired all day

long). The other problem I developed was a bladder retention problem. For

women, this can act very similar to a Urinary Tract Infection or Bladder

Infection. It was extremely painful!! My primary care doctors did not know

what to do. I kept saying I was in pain and I think I have a Urinary Tract

Infection but the test results kept coming back negative. I had 3 of these

painful experiences in one month. No fun! As soon as I stopped the

medication, the symptoms went away.

Unfortunately, I feel it is common that doctors do not read or understand

the side effects of the medications they prescribe. I feel it is important

for doctors to educate patients as to what the side effects are. I also

feel it is important that we, as patients, need to become patient advocates

around our own health. I appreciate the fact that you are asking others what

they have experienced while on Elavil. I think all of us need to ask more

questions and question the doctors more. A website I have been using to

check what the side effects are on medications is

http://www.ncbi.nlm.nih.gov/pubmedhealth/. It is a website by the National

Institute of Health.

Good luck with finding an option that will relieve the electric shock pain

for your daughter.

Sincerely,

Cheryl Sherman

CMT 1B, 34, Sacramento, CA

[Guest guest]

Yes, Elavil is 'technically' known as an anti-depressant, but it also has the

chemical capacity to lessen neuropathic pain. At first, it made me incredibly

sleepy, due to the chemical changes being made in the brain. But after a few

weeks, the sleepiness went away, and what pain I had at the time vanished.

Gretchen

[Guest guest]

Yes it is but is used off label for nerve pain and my daughter's neurologist

said it would help with her insomnia too. Hopefully it will help!

Barb

[Guest guest]

Hello ,

You know, this is strange! I took elavil years ago after a serious neck injury

and it did wonders for my sleep. I stopped when the muscle spasms improved a

bit.

When I was diagnosed with CMT, I went on nortryptilene. It didn't help me at

all. I recently tried elavil again (low dose at bedtime) and it helps a lot. I

still take a sleep med, but it is much more effective with elavil.

And I haven't really experienced a hangover effect. There are mornings I have to

sleep in, but I can usually trace it to extra activity the day before.

I was sent to a sleep specialist. He had me get a dental appliance to control

mild sleep apnea. And he wants me to see him twice a year in case the sleep

apnea gets worse.

There are lots of ways to address our sleep problems, but the key thing, as you

said, is to address them rather than ignoring them.

Jim

>

>

[Guest guest]

Cheryl,

I actually question doctors more often than not I am really not 100%

comfortable starting my daugther on this medicine especially because she is so

young but I know that she is in pain and not sleeping well. We have tried more

natural remedies for her sleep but none have helped. I am planning on having

her try acupuncture and biofeedback but right now we cannot afford the

treatments.

I am going to be watching her carefully for side effects since with teens,

increased depressive thoughts can occur more often with this type of medicine.

I am glad that I do have a resource like this group to be able to get more

information and feedback from those with CMT. It really is helpful.

Thanks!

Barb

[Guest guest]

Correct. Specifically it is an old, poor anti-depressant with hugely

debilitating side effects at dosages effective against depression.

One of these side effects is that it knocks you out, and this happens at lower

dosages which are effective in pain control.

> I checked (http://www.drugs.com/elavil.html) which says that Elavil is an

anti-depressant, not a sleeping pill. Not that I don't need both...

>

> Jerry Walfish