Spasticity

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8 years 1 month ago #14956 by Eliza
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Hi Everyone,

I'm just wondering if anyone has tried or taking Baclofen? I started half a tab 3 times a day for my muscle leg cramps about 2 weeks ago or so and i'm supposed to go up to 3 a day though because of the Vertigo I haven't been able to increase the dose and I'm currently taking half a tablet moring and night. I was also told to double my Lyrica to 300mgs though that doesn't seem to help with the never ending serious chronic pain I am in however I seem to get a little more sleep. I also seem to be putting on weight and this is something that has never happened to me before. :evil: I saw my pain psychologist on thursday and then I couldn't walk the calf muscles were so tight and painful I just dropped back on the chair crying. :(

Oh dear I am so over myself but this not being able to walk is really making me feel more depressed day after day. I'm also sick of being my own dr by looking for the reasons this is happening. I can only figure this is a nerve injury I have and it's not getting better, only worse. I'm not too sure who to go to next...lol. who can help me for that matter...Physio? Any thoughts and is anybody else suffering with this as well.

I'm off to stretch, I seem to spend my life stretching my calf and back because of pain. Yesterday I was swopped to Jurnista and low and behold the chemist didn't have it until monday! Great i've just spent weeks reducing my meds down one third and I was cutting it fine by visiting my new GP yesterday for this to happen. I knew I should've gone back earlier this week however I am not comfortable with him yet and yesterday was only my second visit and i was hesitant, understandably because I'm sick of complaining about pain. :blush:

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8 years 1 month ago #14983 by kebsa
Replied by kebsa on topic Spasticity
i have been on baclofen in the past but at the time my major spasm issue was bladder spasm. the baclofen seemed to make a swallowing problem worse so it was changed to probanthine (the swallowing problems was helped with minor surgery)- i do not remember to main side effects from baclofen but then i was lucky with lyrica too- when i was first put on it i was started on 300mg and i did not have any major problems but i know others who have- this time going back on it i started at 150mg and that did make me a little whoozy but not bad

so i guess my issue would be that we know these are both meds that people can have significant side effects from if they go to full dose rapidly and my experience says that what was okay a fe yrs back was a bit tougher now (maybe other meds i am on or maybe just age!) but the biggest thing is i would have thought it would be better to be adjusting only one med at a time- if you are titrating 2 different meds at the same time and you exeprience side effects, how do you kow which is the issue or if it is just the combination- does that make sense??

when it comes to the issue of weight gian- it seems that many of these meds can affect weight- as long as its not massive, maybe a small gain is something that can be addressed once you pain is better controlled and you are more mobile. i can't remember having too much of an issue with weight gain with lyrica when i was on it before and this time i am actively working on my weight- the biggest culprit for weight gain for me has always been the morphine through my pump- it alters hormone levels considerably and thats how they lead to weight gain. i was warned of that and at the time i felt my pain was so out of ocntrol that had to be the first consideration and try to deal with the weight after
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8 years 1 month ago #15002 by Eliza
Replied by Eliza on topic Spasticity
Hi Kebsa,
I was hoping you would reply....with some experience with baclofen. I definitely know its the baclofen because I upped it to the 1 tab morning dose this morning and the vertigo is shocking. I take the 300mg Lyrica at night with another 1 tablet. I'm trying to persevere with them because the pain is terrible ATM...

I'm going to my old gp tomorrow to get a referral to physio to see if they can help me with my calf muscle pain because I can hardly walk because of really hard stiff calf muscles and crippling back pain. Something's going on and maybe the physio can unlock something somewhere, buttocks,calfs etc. I'm walking really stiff legged ATM and I can't walk heel to toe, its impossible with the calf pain and stiffness.

And tomorrow I'm picking up my new medication jurnista. The OxyContin has run its course and I have no quality of life and im getting no pain relief what so ever...probably a bit like you before you got your breakthrough med Ordine, morphine...My pain specialist sent me to an opiate replacement dr to be assessed for methodone or suboxone and he said to me "your not taking enough medication and I cannot put you on this medication" I was so happy ...so he put me onto another gp in the same surgery and he suggested I trial the baclofen and up the dose of Lyrica. I saw this new gp again on Friday and that's when I told him I'm in a lot of pain and then he decided after talking to my pain specialist to change my meds...I just hope he has done the right conversion. I'll know tomorrow when I pick it up in the afternoon because I'll be taking it straight away. :cheer:

Anyway from what I've read baclofen works best in a spinal pump like your clonidine, apparently its more effective that way...I took both the meds about an hour ago and my feet still feel like they're electrified...oh my how much Lyrica does one need to stop this horrible painful pins n needles and tremors...the spasms and tremors I notice more when I lay down, they run from my lower back down to my feet and its just awful, no wonder I get little sleep...plug me in and I'll charge your whole house with electricity...lol... :)

If nothing changes for me in the next couple of days I'm not too sure what ill do...something's gotta change. I can't live like this.

Anyway Kebsa thanks for replying...I hope your doing well tonight. :)

Eliza

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8 years 1 month ago #15005 by Eliza
Replied by Eliza on topic Spasticity
Thanks mrs s I hope so too...or I'm asking the pain specialist to let me trial the spinal nerve stimulator because I've had enough of this crippling pain. I need some quality of life! I can tolerate a lot of pain, however not this much where I feel I have to stay at home all the time because of intolerable pain, so I'll see how things change in the next few days. :) maybe you need to increase your Targin too! :unsure:

Hugs.

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8 years 1 month ago #15182 by kebsa
Replied by kebsa on topic Spasticity
just wondered how things were going?? i know you were changing some of your meds, have they helped?? you mentioned the baclofen being mre effective via the pump- that is certainly what i have heard and it m akes sense from a physiological point too- when we take meds by mouth they go through the normal digetive process and then get filtered through the liver before getting the general circulation- the liver is basically a filter to refine chemicals and substances that may be harmful to the body- the down side to this is that when we take oral meds the liver basically filters out or breaks down significant amounts of the active ingredients- its what is refererred to as the "first pass process" . but when the meds can be given via the pump they are given "intrathecally" that is into the CSF in the spinal canal- it has bypassed the liver completely and is delivered directly to where the meds work. i have not explained that all that well but basically when it comes to morphine as an example- before i had my first pump implanted i was taking 500mg of kapanol aday and up to 200mg of ordine as breakthrough med through out the day- when i had the pump implanted i was programmed to have 5mg of morphine per day!- a tiny fraction of the oral dose. you can also beat some of the other side effects of the drugs too depending on the drug. I am not sure of the dose range for baclofen in the but i have spoken to some who have their baclofen this way and think its wonderful. The down side is that there can be different side effects, from my experience its mainly hormonal stuff- early menopause, osteoporosis, weightgain -maninly stuff related to the pituitary gland

the spinal simulators can be great too, grappers can tell you more but they do a trial with a temporary unit to see if you respond well and if so you then go on to get the long term unit- i was considered before my last replacement of my pump but because i need to have MRI's periodically for more MS i was not a good candidate.

the other thing about baclofen, and i am not sure if he was thinking of oral or via the pump- but at one time my pain doc was thinking of adding baclofen to my meds to help my lower back pain but when he examined me he felt that i relied on some degree of spasm in my leg to help me stand and transfer- and that bacofen would block that- so i would have to have splints to brace my leg instead

that brings me to one ast thing that might be worth asking about- you mention this dreadful spasm in you leg, i have met others with ms whe have problems with severe painful localized spasticity such as the calf muscle- occasionally botox can be used- injected into the specific muscles that are spasiming- i have also seen it used with remarkable effect in kids with cerebral palsy to release severe spasm in the calf- it does mean wearing what is called an AFO - a plastic splint that fits in the the shoe and goes up the back of the calf to support the lower leg and foot while the muscle is effectively paralyzed- the botox lasts a few months at a time and i am not sure if it is on pbs these days- it used to be available through special clinics otherwise it is very expensive


don't know if you have ever read much about the stimulators or the pumps but Medtronic is one of the major companies that makes these devices- if you google medtronic you will find their page with links to patient info and they used to have lots of information and videos etc about how they work,and stories from people who have been helped by the devices- its worth checking out

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8 years 3 weeks ago #15491 by vicgirl
Replied by vicgirl on topic Spasticity
Eliza *hugs* I used to have with terrible spasms - mostly in my legs - and also what are now likely permanent contractures of my feet and ankles. Baclofen was good for me for a while in oral form, but eventually just stopped being effective. I now have an intrathecal baclofen pump (along with a relatively low dose of morphine).

You also mentioned the spinal cord stimulator... I had my first SCS implanted in 2006. I have had quite a few issues with it, mainly related to lead migration and poor healing, but I would not be without it for all the world!!! If you have any questions about it at all I'm happy to try to answer them, or talk you through my experiences of the procedure if you wish.

I've also had Botox injections, been through AFOs and serial casting.

Kebsa - I'm not sure if anyone will cover Botox (except maybe for things like cerebral palsy... I suspect that may be different). I had two treatments of goodness knows how many injections for my legs about four years ago - the first my specialist talked my health insurance (medibank) into funding, the second they refused point blank. I have more recently had a single injection for severe piriformis spasm that was impinging my sciatic nerve, and that also was not funded. That was a 'cheap' one...I think about $500...but from memory my lower leg injections cost us several thousand all up.

There is also a ridiculously fine line between 'dystonic' and 'spastic' - anyone considering Botox may want to look into that. Because my muscle issues are secondary to my CRPS, they are considered dystonic. Apparently Botox is more likely to be covered for spasticity than dystonia...work that one out..

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