Re: Pain killers

[Guest guest]

Dear nd2rst,

Didn't get a name... Be careful with all pain meds! Oxycontin is the

worst even for those without LBD (I'd explain but isn't relevant to

LBD): Can't imagine what it would do to a person with LBD...?

My Dad who has tremendous pain in his shoulders (keeps saying they

are out of their sockets) is on Lortab 10 mg every 4 to 6 hrs. Seems

to be helping somewhat... Takes the edge off. We give him a whole

tab in the morning (breakfast) and a half tab (5mg) at lunch, dinner

and bedtime... (FYI).

Debbie

>

> ,

>

> The disease is not that new. What is new is that they are no

longer calling it Alzheimers all the time.

>

> I couldn't put Mom on any drugs. And part of the problem is that

even among our LO's, everyone reacts differently.

>

> My goal was to keep Mom comfortable the 4 years she was with me.

(Died in '02 at 88.)

>

> And she just couldn't take the drugs at all. But I didn't want

her all doped up. The MDs usually think that is the best way

to " handle " them. It is a bit more work to not have them on drugs,

and some people really do need to be on them. My point is uaually

to ask the MD what is their goal? Most of their goal was different

than mine.

>

> Hope this helps. You will get lots of different opinions on

this. As I just said there is a new Book for MDs by MDs if they

will read it. Go to the LBDA site address after my name and it is

either there or will be shortly. Let me know if you don't find it.

>

> Donna R

>

> Do you want to read more about Lewy Body? You can also read the

Thistle, the LBD Newsletter. Just click on:

>

> http://www.lewybodydementia.org

>

>

> Re: Pain killers

>

> I was faced with a similar situation with my daughter, ,

because of her DX of dystonia, caused by her Rett syndrome, which

seem to make her whole body spasm in extreme pain. She screamed and

bit her fingers and it was a long time before we could find help.

We began using Clonazapam (Klonopin) and it made a tremendous

difference. Although she sleeps more now, I would rather see her

sleep than hear her scream.

>

> Although I'm not suggesting this drug for someone with LBD, I can

identify with your husband's back pain. I've had the cortisone

epidurals, too. They only help for a while for me. I also have an

RX for Oxycodone, but it makes me nauseous, so I only take 1/2 a

tablet, just to take the edge off. Also, it seems to make me feel

wired, so I can't take it late in the day when I really need it.

Can you start out with a half dose at first to watch for any

undesirable side effects?

>

> I am wondering if there have been any double-blind studies of the

affects various drugs have on LBD patients. Without these studies,

how can we tell if the drug reactions are really from the drugs, or

the natural progression of the LBD? It sounds like many of you have

seen serious loss of skills with medications--it almost sounds like

the LBD brain is ultra sensitive to medications. Is this condition

so newly diagnosed that no LBD specialists can make recommendations?

>

> Does your husband walk or not? Sometimes positioning can make a

huge difference in back pain if one is in bed most of the time.

>

>

> Pain killers

>

>

> My LBD (or, as his neurologist calls it - DLB (diffuse Lewy

body) has

> frequent extreme low back pain - he has tried lumbar injections

> (given by Pain Management docs), anti-inflammatories, and

physical

> therapy. Nothing has any effect. According to his MRI, his

spine is

> deteriorating primarily from arthritis as well as " old age. " He

is

> almost 71.

>

> The Pain Mgmt docs want to try morphine 15 mg 1 or 2 x day.

This

> greatly concerns me as my LO had a huge setback last March when

he

> had surgery (not related) and general anesthesia was used. At

that

> time, I was unaware of the consequences, but it took him 3

months to

> get back to where he had been mentally.

>

> The other options are Vicodin and Oxycontin - my LO does not

smoke or

> drink, has no other medical issues. His meds are 10 mg Aricept

1 x

> day, 25/100 Sinemet 5 per day, Zoloft 25 mg a day (which I am

weaning

> him from - he doesn't seem to need it), 375 mg aspirin daily,

and a

> multi-vitamin.

>

> Any help with this question will be greatly

appreciated....Thanks for

> being there!

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

>