Re: Itching delemma, more

[Guest guest]

Dorthy,

I don't know if anyone asked you about her meds, but she may be having a

reaction to some that she could tolorate before. Just a thought.

Good luck.

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Itching delemma, more

The itching my mil experiences is continuing and getting much worse, now

throughout most of the day and night, interfering with sleep, waking her

every 10-15 minutes in torturing itching pain. She says it itches and

doesn't hurt. But I have been sitting with her at night watching and the

reaction she's having to the itching is the same she has to pain: it wakes

her, she is visibly experiencing pain, she calls for help, etc. It is

hard for her to tell if she is in pain or where she is feeling pain also.

She will say out loud ouch my leg hurts oh it hurts and on and on and if

someone asks if her leg hurts most of the time she will say no or not too

much now. I think there's a disconnect with her ability to identify pain as

pain. I googled " pain itching parkinson's " and there is quite a lot

about this burning tingling type of pain being perceived as " itching " . Also

I found reference to a study that identified cells that sense itching as

being the same that sense burning pain. So now I feel this is what's going

on with my mil.

I called her neurologist clinic and am trying to get help there with what

might be tried as far as medication relatively safely to relieve this form

of pain so she can rest. It is so bad that she is going nights and days

without rest - the longest being 10 days without sleeping more than a half

hour at a time. I feel I am watching her suffer greatly and it is taking a

big toll on her entire health when she cannot sleep.

We are going to see her primary care doctor also this afternoon. We're

having trouble with his new office staff/management as they will not have

him speak to patients via phone only come in for appointments. At this

point, as we are about to go into hospice, I hate to have to change doctors,

but I canont get my mil in the ar and over to the city to very easily. She

is so weak and frail and gets out of breath and anxiety and panic attacks

easily - and that's on a good day when she's had sleep. Not sure what to do

about this.

The rn mentioned three medicines that could be used for this kind of

neurologic pain: gabapentin (neurontin), lyrica, methadone (not morphine).

All sound ominous to me. I'd really appreciate feedback on these if

anyone has had experience good or bad.

My mil's mental status has taken a plunge to new lows. I'm also wondering

if it's time to easy up on the carb levo- which she has tolerated very well

for the last 3 years? Hoping to hear from her neurologist about that as

well. Wish they would call before we have to leave in a few minutes.

I'll post when I have something further on the itching dilemma!

Dorothy

[Guest guest]

Thank you, Dorothy, for sharing your MIL's experience with us.

I'd not read of this peculiar symptom before and so appreciate that you're

aiding and sharing your info with us.  Certainly somewhere down the Lewy Road

we'll feel fortunate to have your experience to help guide us.

Always

All Ways

MJ

Subject: Itching delemma, more

To: LBDcaregivers

Date: Wednesday, June 15, 2011, 3:26 PM

 

The itching my mil experiences is continuing and getting much worse, now

throughout most of the day and night, interfering with sleep, waking her

every 10-15 minutes in torturing itching pain. She says it itches and

doesn't hurt. But I have been sitting with her at night watching and the

reaction she's having to the itching is the same she has to pain: it wakes

her, she is visibly experiencing pain, she calls for help, etc. It is

hard for her to tell if she is in pain or where she is feeling pain also.

She will say out loud ouch my leg hurts oh it hurts and on and on and if

someone asks if her leg hurts most of the time she will say no or not too

much now. I think there's a disconnect with her ability to identify pain as

pain. I googled " pain itching parkinson's " and there is quite a lot

about this burning tingling type of pain being perceived as " itching " . Also

I found reference to a study that identified cells that sense itching as

being the same that sense burning pain. So now I feel this is what's going

on with my mil.

I called her neurologist clinic and am trying to get help there with what

might be tried as far as medication relatively safely to relieve this form

of pain so she can rest. It is so bad that she is going nights and days

without rest - the longest being 10 days without sleeping more than a half

hour at a time. I feel I am watching her suffer greatly and it is taking a

big toll on her entire health when she cannot sleep.

We are going to see her primary care doctor also this afternoon. We're

having trouble with his new office staff/management as they will not have

him speak to patients via phone only come in for appointments. At this

point, as we are about to go into hospice, I hate to have to change doctors,

but I canont get my mil in the ar and over to the city to very easily. She

is so weak and frail and gets out of breath and anxiety and panic attacks

easily - and that's on a good day when she's had sleep. Not sure what to do

about this.

The rn mentioned three medicines that could be used for this kind of

neurologic pain: gabapentin (neurontin), lyrica, methadone (not morphine).

All sound ominous to me. I'd really appreciate feedback on these if

anyone has had experience good or bad.

My mil's mental status has taken a plunge to new lows. I'm also wondering

if it's time to easy up on the carb levo- which she has tolerated very well

for the last 3 years? Hoping to hear from her neurologist about that as

well. Wish they would call before we have to leave in a few minutes.

I'll post when I have something further on the itching dilemma!

Dorothy