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rhowe99

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Joined
Nov 17, 2008
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DX UMND/PLS
Diagnosis
08/2008
Country
US
State
ga
City
atlanta
I am curious.....

what are people using for the following side effects of PLS:

1) Drooling

2) Incontinence

3) Insomnia


Thanks again for any info. My 80 year old father was recently diagnosed and I am trying to gather some information.

Rebecca
 

Just J

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DX UMND/PLS
Diagnosis
01/2010
Country
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MD
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Hi Rebecca, sorry I am not going to be much help. My husband has preliminary diagnosed of PLS. No drooling, but does have insomnia which he just deals with it. As for incontinence, he doesn't have this full blown, just an urgency to go and so far makes it to the bathroom. My husband is against meds but finally I did talk him into giving Baclofin a try and he started it about 6 weeks ago. It has significantly reduced his cramps.
 

Al

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Joined
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Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
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On
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Hi Rebecca, welcome but sorry to hear about your dad. A lot of people use Elavil to help with drying up saliva and I think I've heard others use a Scopalamine patch(spelling?) I don't recall any members talking incontinence drugs but Flomax I think is being heavily advertised up here. Ativan helps some with sleeping. Hope this helps.

AL.
 

etchick

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Mar 5, 2009
Messages
11
Reason
PALS
Diagnosis
01/2002
Country
US
State
TN
City
Seymour
Hi! I don't have drooling. I sometimes wake up in the middle of the night and have trouble going back to sleep. As far as the incontinence goes, I had a baclofen pump implanted in December and that has eliminated that. That has also let me sleep more deeply and I don't have to get up in the middle of the night to go. I usually can fall back to sleep. So I guess in a sense it has helped with insomnia.

I tried oral baclofen and it makes me too sleepy (which exacerbatets the PLS). But the baclofen pump gave me a hellacious headache that lasted for 2 weeks. Also, I have 2 3 inch scars for the surgery (I guess my belly dancing days are over. lol). But I don't have any clonus.

I hope this helped,

Take care,
Alisa
Take care,
Alisa
 

sral

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Messages
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Alisa,

My mom has not been successful with balcofen or tizandine/Zanaflex. She feels exhausted all the time. They told us that the balcofen pump would take a year of monitoring doses before it can be done.

Do you feel you've benefited from it?
 

etchick

Member
Joined
Mar 5, 2009
Messages
11
Reason
PALS
Diagnosis
01/2002
Country
US
State
TN
City
Seymour
Baclofen

Dear sral,
I would say that I have benefitted although I won't be running any marathons anytime soon (lol). But seriously, I just had it implanted (installed, uploaded, whatever) in Dec. 2008. I get it refilled in April (with a big needle; in my stomach; ouch). Hopefully, things are still changing and maybe I'll see more improvement. I'll keep you posted. You might want to go to www.medtronic.com and click on baclofen pump.

Take care,
Alisa
 

sral

Distinguished member
Joined
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Messages
289
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Diagnosis
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Country
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State
ontario
City
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thanks and yes, please keep us posted on how you're doing with it
 

septmommy

New member
Joined
Nov 6, 2008
Messages
6
Reason
PALS
Diagnosis
10/2008
Country
US
State
AR
City
Ward
My husband is taking glycopyrrolate for the drooling and ativan for sleep and anxiety. He can really tell if he misses a dose of the drooling meds.
 
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