interesting adventure. I saw my neuro in February. He liked everything he saw but wanted to reduce my spasticity. So he increased my gabapentin dose from 400 mg to 700 mg. I handle 400 mg just fine. But adding 300 mg increased my spasticity tenfold and shot my blood pressure up so high I nearly passed out several times.
So now I’m back to my first dose, which is funny because it took two weeks to get the new prescription worked out with the pharmacy and insurance so I could get it filled
unfortunately, my spasms are still acting up. I guess I’ll increase the baclofen instead.
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StacyHayward
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That sounds horrible. I'm sorry that happened to you. I've never heard of gabapentin for spasticity itself; I guess I thought it was just prescribed for the pain it caused. I'm glad you're okay after your ordeal.
I hope taking more baclofen will help you. If it gets really bad, maybe you would consider asking your doctor about botox injections, which I believe is covered for the limbs, or maybe even a baclofen pump.
It sounds extreme, but I have one, and it was actually pretty easy to have "installed", and can be removed if it isn't helping you. They also do a test injection first so you can see if it helps you.
The new dose of gabapentin did help relax the muscles in my neck and shoulders which was good. But my hands, toes and legs were miserable. I may try again in a few months but only adding a small amount at a time.
Overall, I'm happy that I did it because I don't need to take much oral baclofen, which is very sedating. One thing to keep in mind is that because of gravity, and the fact that there are more receptors in your lower spine, the pump is more effective for your lower body. So a lot of people do still take some oral baclofen for their upper body. So if your legs feel weak when you take oral baclofen, it might make your legs too weak. I had this problem, but my doctor said I was way more sensitive than most people. So my dose is much lower than that of most people. Apparently others can have the dosage cranked way up and still walk, and those people are the ones who are getting the most benefit from it.
I know it seems like a big deal to get a device implanted in your body, but it really isn't. My doctor told me it would show, but I don't think it does. There's just a hard spot on one side of my abdomen, and I forget that it's there. Sometimes when I clean the bathroom tile - lots of reaching and stretching - it will rub on the inside of me and I'll notice a little twinge of pain later. My doctor says this happens with thinner people and wearing a binder can help, but I don't find that necessary. When I get an MRI, I have to go straight from the MRI place to my doctor afterwards because the magnets in the MRI machine will make the pump stop working. It usually starts up again by itself once the MRI is over, but of course you want to know for sure. This can be a pain when I get brain, neck, and lumbar done over a couple of days, as it's two visits. Some MRI places train their techs to check for you, which is more convenient.
The doctor checks it by handing you a flat, cell phone size device that you hold over your abdomen where the pump is. You will hear a tone when it connects to the doctor's tablet. He can see when it went off and when it started back up again. This is how they adjust the dose, too. They can even program it to give you more or less at certain times of the day. It only takes five minutes. They can even give you a device to give yourself an extra bolus dose at home for when your spasticity flares up.
You have to get it refilled every few to several months depending on your dose.
That's even faster than getting the dosage adjusted. The pump does need to be replaced every seven years because the battery doesn't last forever.
There are a lot of "my story" sorts of videos on YouTube you can check out, too. If you have any questions you can message me. : )
Not particularly. I was first using it for nerve pain in my legs. And it did help a lot. But now that I’m back to my first dose again that pain is flaring up.
thanks for posting your experience (we all learn from each other) but sorry u had to suffer in the process,
My Neuro just added trazodone at hour of sleep to my baclofen and zanaflex to help with am spasticity pain. While there’s no scientific rationale, she says anecdotally she’s seen people benefit and I’m willing to give it a try.
While I don't feel spasms upon awakening, I sometimes have a lot of joint pain, but only during times when other MS stuff is more prevalent. So I wonder if I have small spasms at night. Thank you.
I also have constant general spasticity. For example my shoulders are so tight they pull the tendons behind my ear causing pain. I have to have a chiropractor work it loose each month.
And after using a shovel this fall my forearm got so tight my fingers curled up in pain. I couldn’t use a knife or scissors. After nearly six weeks of my muscles still tight I mentioned it to the chiropractor who was able to work them loose again. It had tightened up through my elbow.
My nerves simply don’t want to relax after contracting and that’s what we’re working on.
Hi Stacy, in reading about your muscle cramps, I just had to respond. I deal with that problem every night, but besides bacloden an tazanadine, I take a new kind of electrolytes that I had read about recently and it works amazingly! I think anyone Who deals with muscle cramps should try it. It's called Body BioE-Lyte concentrate of pure electrolytes. I found it cheaper on Ebay, but it's definitely worth the regular price ($29ish) in my book! Just add a capsules to your water. I actually add a tad more than a capsules. But I've been so happy with how much it's helped the cramps. Hopefully it'll do the same for you. Good luck! Lauren Clark
I am sorry you are going through it with gabapentin. Muscle spasms can be very painful. At night to help with my muscle spasms and get some sleep, I take two 4mg of tizanidine (a muscle relaxer) and a gabapentin 600mg. After all that I am able to rest. Tizanidine may help you. Good luck.
I was “texted “(Is that even a word ?) to chat with you because I also am taking Gabapentin )for several years) & I might be able to help you. I take it for pain & it’s supposed to be prescribed by your weight. I take 2 tad .x 3 per day, each 300MG each. I also have MS but it does does not relieve my spastic legs.(I am prescribed other meds for that from my Neurologist that words pretty good. If you are having difficulties please contact your prescribing physician ASAP. Sounds like the increased dose is too much for your body. Personally I would stop taking that higher prescription but that’s just me. Please contact your doctor & tell him/her how how U are reacting to it. Please let us know how you are doing.🐺
I did contact my neuro and we went back down on the dose. I was only on the higher dose for about a week. I’m still trying to get my blood pressure and spasticity under control again. I had to increase baclofen and adjust my blood pressure meds. Hopefully everything smooths out soon.
How is the Baclolen working on your spasti bc ity. What I take works pretty good but at least twice during the it doesn’t & I wind up not sleeping for at least 1 night or 2 during the week pulling “all- nighters””” like I used to do a very long time ago in college.🐺
lol We seem to have similar problems . I have high blood pressure (Fortunately I use the VA doctors & my medications do not cost me anything ; I’m an Army Veteran). This spasticity , for me, often happens during the day when one of my legs just “kicks out”. Most embarrassing if it happens when I’m sitting down & other people are there. 🐺
Oh, I am with you! I take Gabapentin for my back and they wanted to up it for my MS... I am on 400mg and they went to 600mg... I got so sleepy and woozy on the first day, it took me a bit to realize why I was that way! Had to have them change it back. I take methocarbamol (aka Robaxin) as a muscle relaxer, and it works pretty good for me, where some others, can't think of the names, but one is the really popular one with most doctors, just make me sleepy and don't help. Hope you find something that helps you! 🧡
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