More on Spasticity

My PCP has decided to be a bit more aggressive managing my spasticity.  I have been getting up every two hours at night: 12:00, 2:00 and 4:00 (that kind of explains some of the night ime posts.)  Anyhow I was told that the Baclofen may be working during the day, but wasn't cutting it at night.  So she added Norflex and Valium on top of the Baclofen. I'll try the Norflex first.  If that is not enough, I can go to 5 to 10 mg of Valium.  

She thinks the Neuro is being a bit too conservative.

Bob

[jensequitur]

Interesting... I didn't realize that Valium controlled muscle spasms.  

My neurologist was quite conservative about the baclofen.  I had to argue him into prescribing it for me.  He didn't really understand the problems I was having with spasticity - I'm not sure if he understands the difference between motor spasticity and sensory spasticity!  (I didn't either until you explained it to me.)

How much baclofen are you taking?

[COBOB]

20 mg three times a day, but the bedtime dose is at 10:00 and I'm out of bed by midnight with pulling in my right calf, foot and hip.  The doctor also thinks it is causing bladder spasticity.  Hard to describe, but it is like a new kind of urgency.   Good thing I live out in the country since I really can't run back to the house.

Valium has a couple of actions.  It works directly on spasticity, it is a skeletal muscle relaxant (High Test Flexeril) and in my case, has some anti-seizure properties that may help with the myoclonic activity.  

Bob

Bob

[kelly97]

I was up last night with spasticity in my hamstrings. I'm on the same Baclofen dosage as you - 20 mg three times a day.  Some nights are worse than other nights.  For some reason, my feet seem to cramp up a lot at night too - much more at night, than during the day.  And I get the spastic bladder where all of a sudden if feels like I'm just going to go.

good luck with the new meds.
-Kelly

[jensequitur]

Yeah, I'm on the same dosage too.  My doc doesn't want me taking any more than 60 mg, so she gave me some Xanaflex.  Still not sure how to integrate that into my schedule.  Until I see her in January, I've been taking Flexaril when I have a spasm.

I take keppra for the myoclonus.  Looking at the information on sensory nerves, spasticity,  and the motor nerves, I have to wonder how the myoclonus and the spasticity work together.  I had myoclonus (before keppra) in the morning, and I'd set it off in bed just by trying to move.  If I stretched at all, it would cause my calf to spasm.  It also helps the back twists and the palatal myoclonus.

[Sumanadevii]

Bob, please keep us posted.  I am taking 10mg Baclofen, one 5mg Oxycodone, and 1mg Xanax...and it still isn't working.  I am going to ask for the Baclofen to go to 20mg.  If you find some relief, I will be asking for more!!

[drsdonthelp]

Bob, I cannot offer any other supportive suggestions other than, I hope you get some sleep once you start on a new med. I am on zanaflex, and it makes me sleepy, so I snooze... I have not experienced spasticity while sleeping, just hip pain, burning feeling and soreness.

I wish you well, please keep us updated on how you are, you are always on the other end of the posts, (the answering side) lol

Pam :)

[Sidesteps]

I don't understand all this spacticity stuff but I do hope you feel better.

[COBOB]

Well, last night was the first night of trying Baclofen, Tegretol and adding 5 mg of Valium.  Rather than getting up every two hours, I slept though 10:00 pm to 5:00 am.  My leg and hip are a bit tight, but they seem better than they have in a couple of week.  I think it has more to do with a good night's sleep.

I'll really put this to the test Sat.  I found out this AM that I have to be in London on Monday morning.  So, I get to leave here Sat night and get there Sunday morning.  Every try to book an international round trip on two days notice?

Bob

[Sidesteps]

YIKES! I want to go!!! I want to go to London in the Fall. :)

[COBOB]

I was there last Sept (vacation.)  This time it is work :-(

[kelly97]

Bring lots of money, I hear it's expensive.  :-)

I'm glad that you're finally getting a good night's sleep again.

-Kelly

[jensequitur]

That's great!  I mean for the spasticity and everything...  I don't know about a 10-hour flight when you're having trouble with spasticity!

[LisaJF]

My old MS Specialist (the fired one) prescribed me Baclofen 20mg twice a day.  I don't use it everyday (especially now that I have no spasticity issues or other obvious neurological symptoms).  

But when I do have them its always my left hip, tendons over my knee caps feeling like they are going to pop off and hamstrings.  It is very painful.  Sometimes my trapezius and latissimus dorsi muscles spasm near the spine giving the sensation that my spine hurts.  The ER doctor at one time prescribed me Valium 5 mg and said to take it if the baclofen did not work and sometimes I had done so when I was up to 80mg in one day without much relief.

Now my newer MS Specialist states that since Im 106 lbs, that the dose that was prescribed to me is a  bit high and to cut back.  I also told him that I dont take it everyday, only when my plethora of neurological symptoms pop up every other month or so.  He still insisted on lowering the dose.

10pm to 5 am is a good dose of uninterrupted sleep for you! Congrats!

London? Lucky you!

Lisa

[RedFlame]

I'm so glad to hear you are getting more relief at night and hope it continues.  I take 60mg of the Baclofen and Klonipin (klonopin) added PRN.  I know they are both Benzodiazipines, but not sure if the Klonipin (klonopin) works as well as the Valium.

Is Valium that different than Klonipin (klonopin)?

Getting ready for  that kind of trip is tough.  I hope you keep all your meds with you on the plane so you can rest:)

Red

[kelly97]

Hey Lisa,  Isn't that funny how different neuro's think so differently?  I weigh about the same as you.  My old neuro had me on 30mg/day of Baclofen.  When I switched to my new neuro, she said that 30mg is way too low for me, so she bumped it up to 60mg/day.   hahaha  ???

-Kelly

[COBOB]

The max dose of Baclofen is considered to be 80  mg /day.  The problem is that it was not holding at night and I was up every 2 hours.  

The Valium (diazepam) is  considered shorter acting than Klonipin (klonopin) (clonzepam).  Conzepam has become preferred as an anti-convulsant, since there seems to be less tolerance developed than diazepam.

I guess diazepam would be a good "test dose" and iff effective, clonzepam could be a longer term option.  The nice thing about diazepam, it that it is a dirt cheap generic.

Bob

[Sumanadevii]

Bob, I know this...that ticket is gonna cost a bundle.

I am glad the meds are working.  I want to add the longer I sleep the worse the spasms are when I wake.  It is why the first thing I reach for is a pain pill and muscle relaxer.  It is so painful upon waking that at times I wish I didn't have to ever wake.  Of course an hour later am glad I did!

Dang these MS patients that ask for too much!

[kerrtelli]

Does anyone know bout the Baclofen pump?
I har that it is betteer because it goes right into y system and doesn't cause the side effects.

[jensequitur]

Now who was it that got the pump?  I know somebody did, and they were quite happy with it.

The thing is about the pump - it delivers baclofen into your system, just like the pills, but it's a constant amount.  The pills are much less effective, because not all the baclofen is going into your system, and you might get more or less, depending on when you remember to take them.

[COBOB]

It doesn't really go "into your system."  I pumps Baclofen or a Baclofen Narcotic mixture into the intrathecal space and drugs the spinal cord directly.  
I have a friend here in Colorado that has one for Hereditary Spastic Paraplegia.

Bob

[jensequitur]

That's right - baclofen is a spinal muscle relaxer, and it works much better if you put it into the spine!

Bob, how does your friend like the pump?

[RedFlame]

We have a member here that got the pump about 6 months ago.  It has been a godsend for her and she is so happy she has it.  She was subsequently diagnosed with hereditary spastic paraplegia as well.  I'm not sure if it's OK to mention her name or not although she talked about it here

Red

[twopack]

Baclofen is actually used for its anti-spasmodic action rather than as a muscle relaxer.  It does act to inhibit reflexes on a spinal level but that doesn't mean it "works better" when given intrathecally.  

The benefit of the ITB pump is that a much smaller dose is required to get the desired result.  Delivering baclofen directly into the intrathecal space means you don't need to deliver a high dose to the blood to get a small dose to pass through the blood brain barrier.  Lower dose intrathecally = same or better relief with fewer side effects (such as drowsiness).

All other options are usually exhausted before insertion of a baclofen pump.  Insertion is a specialized surgical procedure.  By its nature it increases a persons risk for CNS infection.  Pump malfunctions and failures occur risking overdose or sudden withdrawl (withdrawal) symptoms and/or sudden death.  

It takes a vigilent person to stay on top of the care and maintenance of a ITB pump.  They can transform a life from mysery to freedom but they are not for everyone and certainly aren't the easy solution they can appear to be.

Mary

[Sumanadevii]

Red it was addicted2harleys that took us through her journey of getting the Baclofen pump.  Although she doesn't have MS, her story is good for anyone considering one.  She had her share of problems getting settled with it but in all (At least her last posts) she seemed to be doing well with it.

I know she was getting settled in her new home in Arz then ended up in the hospital.  Hope she vists us and sees this thread giving us an update.