please help

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Kristina1

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Note: x-posted on FB

Lately I have had a lot of painful spasticity at night in my legs. I often wake in pain several times a night from how stiff my legs are.

Due to some changes I made, Ive had some minor improvement the last few nights. Then last night I woke in excruciating 10/10 pain. My entire legs and hips were locked up in severe contraction/spasm. My caregivers were there because I guess Id been screaming for a while. I could barely communicate through the pain. My mom massaged the muscles and my husband used his weight to force my knees to bend. Then he sent my mom to get meds and they gave me 3 lorazepam (I normally take 1), 2 Baclofen (I normally take 1), and 1 oxycodone. it was guesswork on their part of what would work to stop it and knock me out.

I asked several times to to go to the ER but they said they couldnt transfer me like that. I wish they had called an ambulance. Took about 30 min for spasms to dissipate as the drugs kicked in. I don't remember much before I fell asleep. I was pretty high.
I'm scared to go to bed tonight. What should i do?
 

Nikki J

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I am so sorry. I expect you are already doing stretching massage and gentle heat. I wonder if you can time a session during the night as a stopgap until you can get a workable plan

what do you take for all your meds? What else you do you have on hand for as needed?
 

KimT

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Valium helps me more than anything but I also take a large dose of magnesium (1,200 mg in the morning and 400 mg at night.) I also take Oxy for pain.

If I get bad pain, I put the Valium under my tongue and it goes to work pretty fast. Same with Oxy. I don't use extended release anything. Sometimes I add Gaba.

I'm so sorry Kristina.
 

Kristina1

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med list:
riluzole
nuedexta
oxybutynin (am only)
baclofen 10mg/3x day, 20mg nightly
lyrica 150mg 3x day
fluoxetine liquid daily
oxycodone 9 mg ER every AM
oxycodone 10mg as needed
lorazepam 0.5mg as needed
liqid magnesium nightly
liquid multivitamin daily
amx study drug PB + TUDCA 2x/day
 

Nikki J

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Do you have room to increase the magnesium? Going forward add magnesium topical spray. I know at one point you considered medical marijuana. Maybe revisit that? For tonight maybe take an oxycodone at med time. Make sure the room is warm enough. It has been cold this weekend
 

EricInLA

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Oy, that’s a tough night Kristina. So sorry you had to endure that pain. I don’t have as much knowledge in this as the other responders, but I would second the recommendation for MM. I use it for sleep but many find it effective for pain. Hopefully it’s available in Mass in a form that works for you. Here in CA it seems everyone is using it for something or another. May tonight be easier. .
 

KarenNWendyn

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I’m sorry Kristina. I second Nikki’s suggestions. I hope tonight is better.
 

nona

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Kristina, I'm so sorry, that sounds awful. There's enough going on without having to endure pain. I'd be interested in hearing what others in this thread think of Mexilitene. I've been taking it for years on Dr Berry's recommendation /prescription. I never experience cramps or spasticity.
 

Nikki J

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Yes to mexilitine. My sister took it and did well. As long as you don’t have any contraindications.
 

Samkl

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Kristina, I am so sorry you had such a dreadful night. Xx
 

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oh how awful Kristina. Maybe topical MM for the joints that get frozen would help too.
I can understand your fears. If those meds did the trick last night, at least they know what to give you and I would suggest they give you a does of the meds immediately, and then start heat and massage etc which the meds are kicking in. Rather than try to massage and force the joints to bend first.
 

Don

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Note: x-posted on FB

Lately I have had a lot of painful spasticity at night in my legs. I often wake in pain several times a night from how stiff my legs are.

Due to some changes I made, Ive had some minor improvement the last few nights. Then last night I woke in excruciating 10/10 pain. My entire legs and hips were locked up in severe contraction/spasm. My caregivers were there because I guess Id been screaming for a while. I could barely communicate through the pain. My mom massaged the muscles and my husband used his weight to force my knees to bend. Then he sent my mom to get meds and they gave me 3 lorazepam (I normally take 1), 2 Baclofen (I normally take 1), and 1 oxycodone. it was guesswork on their part of what would work to stop it and knock me out.

I asked several times to to go to the ER but they said they couldnt transfer me like that. I wish they had called an ambulance. Took about 30 min for spasms to dissipate as the drugs kicked in. I don't remember much before I fell asleep. I was pretty high.
I'm scared to go to bed tonight. What should i do?
Hi Kristina, thank you for mentioning we're neighbors. I never looked at the sidebar data.
I do not use any social media (besides this forum) and I do not have an upgraded account so I don't know how you can message me. That being said I am so sorry you are having pain. I hope you find a balance in your meds that helps or find some other change that helps. One thing I learned about this disease early on is that everyone is different from a pain and progression standpoint even though we all suffer through the same general symptoms. I will try to come up with an idea so we can talk directly.
 

lgelb

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I'm very sorry, Kristina. If you haven't sprung for a low voltage heated mattress pad yet, that would be top of my list, to have continuous heat below you. Room heat and blankets on top are not the same.

Addition: because of your level of pain, I'm sure your doc could justify a home health PT visit to evaluate what's happening. I would also ask for a physiatrist (phys med/rehab doc) visit at your next clinic or before. This calls for a complete review of your neuromuscular pain management regimen, not just drugs.

Other thoughts: hot shower or towels before bed, massage, I'm sure you're doing all this. Positioning of your hospital bed so your hips are sloped differently than now (toward vs. away from feet), foam under your knees and heels? Latex topper? Fall asleep to music/audiobooks? Fan? White noise? The more slow wave sleep you can get, the less likely you are to lock up.

If Lyrica really helps because part of your pain is neuropathic you have room to go up on the dose. It is at least possible that if your neuropathic pain is not well controlled that it could irritate your muscles into contracting. But if you don't have nerve pain these days, I would taper off as it interacts with many of your meds.

Have you ever tried tizanidine +/- baclofen? Cyclobenzaprine [though it too adds to serotonin risk so would not add it to this list without taking some things off]? Do you really need the oxybutynin given that you mentioned UTIs in another thread and it can worsen sleep?

Fluoxetine is the type of SSRI that most disrupts sleep, and also risks serotonin syndrome (along with dex and oxy, another combo that increases the risk) given your other meds, among other issues. Serotonin syndrome can cause muscle spasms and much more. At least, I would ask for a more sedating SSRI like paroxetine, but you might also ask about another class of antidepressant.

Here are all the interactions on your list. I have to say, there may be room for improvement in several respects. I've put together drugs many times that in theory were not a good mix, but yours is suspect for potentially exacerbating your spasms and there is so much potential for respiratory depression, that I almost wonder if your spasms relate in part to oxygen deprivation/CO2 buildup in sleep, which would worsen over time.

Also, be careful with adding oral magnesium -- topicals are a better option -- because Mg also feeds into calcium and iron levels, and those can affect spasms as well. And you are getting all of the above in your multi likely as well. Depending on your diet, you might be low on one of the other two.

I wish I had something more definitive to say...

--Laurie
 
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Samkl

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Kristina, when I check the clock I think it’s nearly 7:30 am where you are. I’ve been thinking about you a lot today, and hope you had a better night, after your horrible experience of the night before. S x
 

Kristina1

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Thank you all. My son had somewhat-emergent surgery this morning so I only just got home. My son is doing great!

We tweaked with meds and I did have less pain last night, more on par with my normal, which still sucks but isnt a scary emergency.
 
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