Baclofen pain pump

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popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/15/2009 8:32 PM (GMT -7)   
Hi all,

I just came over from the MS board & when I was reading about all your awful pain I just wondered if any of you had thought about a baclofen pain pump. I have had a variety of different neuropathic pains ranging from intense pins & needles, hornet stings, deep aches in buttocks, thighs & arms and spasms, for 12 years Then it all started increasing until I had such severe pain & spasticity in 2007 that I wanted to die. It was as though I was on a rack and every couple of days the wheel turned and the pain/spasticity increased. I also had such painful & hypersensitive skin that the touch of my clothes, even a breeze could make me cry. I was totally housebound and could not sit, walk,or lie without intense spasms. The only thing the neuros could offer was oral baclofen which I am very allergic to

The drs implanted a baclofen pump in April 2008 and it has given me my life back. Within 12 hours of having the pump implanted I was 80% pain free. Even the hypersensitive skin was gone though some drs at the pain clinic had said that this would not respond. The spasticity was greatly improved too. I have regained so much: I can sit down to have a meal, and work at the computer. I can drive a car again, and socialize with friends, and go to the movies. I have travelled to Perth and had my first holiday in 6 years. I can garden, and best of all I can lie snug in bed without painful spasms – I am now 100% pain free - I am in heaven.

I belong to this group called pumpsters@yahoogroups.com. They have all sort of different meds in their pumps and most are very happy and have been able to dramatically reduce the quantities. I have been told I am getting 1/300 th of the amount of oral baclofen I would need to take to get the same effect.

I do apologise if this is all old news but I am afraid I do not know how to look and see what you have discssed before I will have to ask Gretchen to tell me. Anyway I just thought if I could help even 1 person I had to try.

Wish you all a painfree day
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 6/15/2009 9:15 PM (GMT -7)   
Thanks for the information, popsie! I am thrilled your pain is relieves that much because I'm sure that sounds like heaven to the rest of us. We'd all take 80% with joy!!

BTW, if you are trying to do a search for a topic on Healing Well... in the upper right hand corner underneath the word Healing Well that are in the blue bar...is a Google search box...see it? That will search Healing Well for anything you enter. I know Gretchen will help you also...she's such a sweetie!

Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 6/15/2009 9:23 PM (GMT -7)   
i am actually though my trial and waiting for the final pump, and my pump will have baclofen in it. thanks for the input, glad it works. my trial only had morphine.
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 6/15/2009 9:37 PM (GMT -7)   
ok im sorry if this sounds ignorant, but im very confused... i hav acid reflux and take baclofen for that to help with keeping the acid in my stomache... but does it actually help with pain? what class of med is it, and how does it help with pain? im very confused... and thanks for bearing with me!
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/15/2009 11:01 PM (GMT -7)   
Hi kttn,

Just to let you know that the people with baclofen only in their pump seem to be generally the most happy. Also it seems if you have only baclofen and the new 40ml pump you can go longer between refills. I only need a refill every six months.

The other thing I have learnt from the others in pumpsters that different countries seem to things differently. In the US, & I think Canada, the drs put the pump in empty (day surgery) and only fill it later with a minimum dose and sometimes it takes a while to titrate the dose to the best one for you especially if you have a cocktail of drugs in it. In Australia we go into hospital for 3+ days and the pump is full when they put in. I actually reduced the dose twice because although it took away the pain my MS makes me weak and the baclofen made me weaker. I am now on a complex continuous dose where I get the minimum in the day and more at night when the spasticity/pain is worst.

When you have the op the pump sticks out and it is a good idea to ask for and wear a binder which holds it firmly until it gets "sucked in". After a few months it is invisible - the outline can only be seen under the skin if you wear a bikini! If you are unlucky enough to get a spinal headache ask for a blood patch apparently it fixes it really well otherwise the headache can last for weeks. I never had a headache and managed without a binder but think I will have a binder next time. Ask where they are going to put the pump. Here they always put them to the left of the bell button & the top of the pump is in line with the belly button. I am very small but have had no problems but some people complain of it bumping against their hip bone or ribs.

I love my pump and am sure you will have happy pumping turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/15/2009 11:04 PM (GMT -7)   
Thanks for the advice Chutz I will try it out
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/15/2009 11:12 PM (GMT -7)   
Sorry Mystic, but I do not really know much except that baclofen is used a lot for MS. It definitely helps the spasticity and the pain that spasms can cause. But it has helped me with all the other pain too. The other thing it has done is that I no longer have irritable outbursts which I was getting occasionally. (MS can affect your mood). My interpretation is that the baclofen has smoothed & soothed my nervous system.

Do not know if this helps?
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 6/16/2009 6:50 AM (GMT -7)   
they did that with my trial. i had 5 days of meds bumped up until we found the right dose. i can't wait until its done, i felt so much better when i had the trial. my pump refill will be monthly, usa has fda all over this stuff. wish i could go 6 months, i don't look foward to that needle monthly.
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 6/16/2009 7:41 AM (GMT -7)   
Baclofen is a muscle relaxer/antispasmodic medication. It helps relax the skeletal muscles in the body. It is commonly used in the treatment of MS, spinal disorders effecting the muscles and other muscle type injuries. You should slowly taper the dosage of baclofen up, since it does effect the large and small muscles of the human body. Do not stop taking baclofen abruptly. It must be tapered up and down over a period of time.
I've been on it for about three years now, and it does work well for the spasticity that comes from the nerve injuries/damage I have.
If you are a diabetic, make sure that your doctors and pharmacists know that you are taking baclofen since it can cause blood sugars to increase and you might need to have your diabetes meds increased or decreased.
Hope this helps those who were asking about it.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
[url=http://dragcave.net/view/xdyP][img]http://dragcave.net/image/xdyP.gif[/img][/url]


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 6/16/2009 11:03 PM (GMT -7)   

I have had my pump for several years and getting refills are a snap.  One minor stick and that's it.  If fact, the area directly over my pump seems to be less sensitive = most of the time I barely feel a prick.  I have a 20ml pump with a baclofen/morphine combination.  

I love it ....love it.....love it. 


Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative disease called “Multiple System Atrophy”. a very rare neurodegenrative disease ..i.e. brain rot.  Mobility issues,, O2 , intrathecal pump, neurostimulator, neuropathic pain,  spasticity, central apnea, oesteoarthritis, colitis...etc..etc.

 


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 6/17/2009 4:36 AM (GMT -7)   
thanks for letting me know, i don't mind needles, just the thought of that site over and over, i bruise so easily. thanks!
RX's: Oxycontin 80mg 2x's daily; Oxycodone 30mg 5xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100mg 3x's daily (pain & fibro.); Phenergan 25mg (as needed); Amitriptyline 25mg 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Abilify 5mgs at bedtime (depression); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil

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