When I go to bed at night I have been experiencing myclonus (uncontrolled jerking in my shoulders and head, which sometimes radiate down my body). I am also seeing auras that look like mandalas that are rotating.
My neurologist believes this is all from my cervical spine and discs and is recommending Gabapentin. I'm curious about what others' experiences have been with this drug.
I took gabapetin for neuropathy. I tend to be very drug sensitive, so keep that in mind as I describe my experience.
I had a lot of problems with grogginess and being out of it at low doses. My doctor gave me a plan for starting at a low dose, and gradually ramping up. I was miserable - just sitting there - unable to even focus on a cooking show on TV or other lightweight activities. Had a hard time stringing thoughts together, and had a hard time remembering what I was told. Stopped after two weeks. When I next saw the doctor, he said that some people who have initial trouble get better after the first few weeks. And asked me to try again, starting the initial dose even lower. Essentially the same result.
So not the medicine for me.
Quote from: SjoGirl on August 11, 2016, 12:58:44 PM
When I go to bed at night I have been experiencing myclonus (uncontrolled jerking in my shoulders and head, which sometimes radiate down my body). I am also seeing auras that look like mandalas that are rotating.
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Gabapentin caused visual disturbances for me .. similar to what you are describing. Caroline here thinks her myoclonus is from gabapentin.
I was started on Gabapentin for horrible neuropathy pain.
This medication made me dizzy, out of touch, feeling stupid, and gave me brain fog. At first it did not even control the pain, and doses were increased.---
It was embarrassing to be almond people like this.
For my neuropathy pain, I was changed to Lyrica, which has worked well for me for my neuropathy.
I could not handle gabapentin at all, made me feel awful and foggy and dumb. Switching to Lyrica and hoping if I take it at night that it might help in the day - which is when I have my pain, I do well at night. Crossing my fingers that it works. Hoping Gabapentin might work for you. 14 years ago when my neuropathy was bad in my quad muscle I actually did take gabapentin, but only at night and it helped the crawling a lot.
I went through the drugs you listed and wonder if the Tramadol could be causing this.Sometimes when we are on a med for a long time it can build up in the liver and cause some weird reactions. This is a drug that has to be tapered down and not quit cold turkey. It might be that even cutting down would make a difference if it is the cause.
If you take this on a routine basis and want to taper I would advise you call your doctor for advise on how to do this. Hope you can figure this out. Also, does this happen only when you lie down??? Just a thought. Might be positional related to your other problems. Good luck. Irish
I was first given Gabapentin many years ago for dizziness. It worked for the dizziness but affected by balance. After falling 3 times I decided to stop it. Last August I was again prescribed gabapentin, this time to treat a nerve inflammation problem not autoimmune related. I told the doctor about my previous reaction. He said he would start me on a very small dose - 300mg twice a day. The first night I got up to go to the bathroom and walked into a wall. To make a long story short, I finally agreed to take the 300mg twice a day for one month and then gradually decrease. The medication worked although I felt lousy and was very unsteady while taking it. I have decreased the dose to 100mg twice a day, which is working though my doctor thinks it is too low a dose to be helpful. I have no side effects on the lower dose.
Katie1111
Gabapentin helped my Small Fiber Neuropathy nerve pain.
Recently I started a taper to see if the high dose I was taking, 3600 mg/day, was causing some side effects (myoclonus, actually, which can come from too much Gabapentin).
The trial is still under way. I'm now at 1800 mg/day and the SFN discomfort is slightly back, sort of like a sunburn on my skin, not bad.
The myoclonus isn't gone yet, but it takes a while for my levels to stabilize at the lower dose since the larger amount stays in my system a while.
I did not have other problems with Gabapentin, SjoGirl, but the only way you'll know how it works for YOU is to try it. You'll start at a low dose and see how it goes.
Trial and error is about the only way we know if our bodies will tolerate a drug.
Best wishes!
Elaine
Quote from: SjoGirl on August 11, 2016, 12:58:44 PM
When I go to bed at night I have been experiencing myclonus (uncontrolled jerking in my shoulders and head, which sometimes radiate down my body). I am also seeing auras that look like mandalas that are rotating.
My neurologist believes this is all from my cervical spine and discs and is recommending Gabapentin. I'm curious about what others' experiences have been with this drug.
I take a combination of cymbalta/gabapentin to manage fibromyalgia pain.
I am fortunate in that I tolerate both meds well, and regained a level of mobility.
Later, due to an event which brought me under the care of a neurologist, I was prescribed Topamax.
This addition incidentally helped with the tingling in my arms and numbing in some of fingers.
The 'auras' and halo effect at night when I drove diminished. (I had debilitating, relentless headaches for weeks prior and this was reason for prescribing Topamax. Both topamax and gabapentin are used to manage eplipsey, acting on neruotransmitter, etc.)
"Some researchers speculate that abnormalities or deficiencies in the receptors for certain neurotransmitters may contribute to some forms of myoclonus. Receptors that appear to be related to myoclonus include those for two important inhibitory neurotransmitters: serotonin and gamma-aminobutyric acid (GABA). Other receptors with links to myoclonus include those for opiates and glycine, the latter an inhibitory neurotransmitter that is important for the control of motor and sensory functions in the spinal cord. More research is needed to determine how these receptor abnormalities cause or contribute to myoclonus."
"The complex origins of myoclonus may require the use of multiple drugs for effective treatment. Although some drugs have a limited effect when used individually, they may have a greater effect when used with drugs that act on different pathways or mechanisms in the brain"
http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm#3160_5
You write that your symptoms occur at bedtime and Neuro suggests cervical spine and discs.
I am aware that with pain I often overcompensate physically toward side that does not hurt.. so my body is out of alignment and I need to try to readjust during the day to avoid night pain. Sitting incorrectly.. people in pain/unwell slouch forward and inward for example.
So even with meds I need to be aware of upright and sitting posture. I use a wall (standing next to it, push shoulders back to open ribs for better oxygen, deep breathing, press spine into wall, etc) to facilitate posture. I also clasp hands behind back and push down to stand tall(ish)...lol I am 5'4" ;)
At first when my rhuemy put me on it I felt funny too and stopped. Later I tried it again, and got used to how it can make me sway a little so now I am aware of that. It helps me a lot now with any nerve type pain. I take it every day, and now can't imagine not having it.
We all have such different body chemistry that it all is a trial at first.
Now I have to watch taking anything that hurts my stomach or intestines. I get very sick now if something does this.
I am now where just about every 3 days I have to take loperimide for diarrhea.
I hope something works for you.
susanep
At first when my rhuemy put me on it I felt funny too and stopped. Later I tried it again, and got used to how it can make me sway a little so now I am aware of that. It helps me a lot now with any nerve type pain. I take it every day, and now can't imagine not having it.
We all have such different body chemistry that it all is a trial at first.
Now I have to watch taking anything that hurts my stomach or intestines. I get very sick now if something does this.
I am now where just about every 3 days I have to take loperimide for diarrhea.
I hope something works for you.
susanep
Sorry for the double post. My computer was doing funny things on me.
susanep ::)
I take it and it does help me, although I have had groggy experiences with it. The negative feelings I had went away after time may 1 week later. One thing you need to know is, if and when you stop taking it, you need to taper down. Don't just stop. That can mess with your head. I almost wet the bed after quitting cold turkey, so I will never just stop without tapering.
Thanks all, doc is starting me on a very low dose which is good. He believes my issues are all from my neck/spine and I suspect he's right.
As many of you indicated, I just have to give it a try.
Quote from: Carolina on August 12, 2016, 04:59:32 AM
Gabapentin helped my Small Fiber Neuropathy nerve pain.
Recently I started a taper to see if the high dose I was taking, 3600 mg/day, was causing some side effects (myoclonus, actually, which can come from too much Gabapentin).
The trial is still under way. I'm now at 1800 mg/day and the SFN discomfort is slightly back, sort of like a sunburn on my skin, not bad.
The myoclonus isn't gone yet, but it takes a while for my levels to stabilize at the lower dose since the larger amount stays in my system a while.
I did not have other problems with Gabapentin, SjoGirl, but the only way you'll know how it works for YOU is to try it. You'll start at a low dose and see how it goes.
Trial and error is about the only way we know if our bodies will tolerate a drug.
Best wishes!
Elaine
I'm so glad you are trying this taper to see if it helps. If you are only experiencing mild symptoms returning at this significant reduction from 3600 to 1800, then at least you know you can take much less with good benefits. Gabapentin only has a half-life of 5-7 HOURS so it doesn't stay in your system long (as for why it must be taken several times a day for effective management of pain/symptoms), so your levels are 'stabilizing' within a day or so at most. This is great news for you!! So if the myoclonus goes away at a lower dose, then you might be able to stay at a lower dose and likely still get relief of your neuropathy symptoms as well. PERFECT!! Keeping my fingers crossed for you that the myoclonus starts to reduce soon!
Thanks Anita, I had thought that it would achieve the lower levels quickly, but then my doctor seemed to think the effect would linger longer as I tapered. He's been wrong before, tho' he is quite brilliant. Even the brilliant people are sometimes wrong.
At 1800mg, I have the sunburn effect, and leg pain, which I didn't have at the higher dosage. However, I have had three episodes of myoclonus during the taper, the last one was three days ago.
So, I have no idea what is going on. First I am stabilizing at 1800mg until after I have my synovial cyst treatment on the 25th. Then once that event has passed I will taper further to 0 to truly know if the Gabapentin is a problem.
I am really having a hard time since I am so clumsy with my braces and walker and have very difficult pain if I stand or walk for more than one minute. So cannot do anything beyond basic self care at the present. I do NOT like the way my husband does things in the house (dishes, cooking!, cleaning) but must accept it of course.
If the taper doesn't stop the myoclonus my neurologist will conduct a long term EEG, wiring me up to a portable device with a button I push when I have an episode of myoclonus. The whole thing is depressing me. I see a therapist every week, I take Cymbalta, I try to meditate and accept myself as being where I'm supposed to be.
Certainly struggling as I am more and more housebound and now dealing with pain again.
Regards, Elaine
I understand your having a hard time dealing with this. I've had rough times that got me down as well over the years. But I must say you are one of the strongest and most resilient person i know! You have overcome so much in recent years and always with a great attitude! Take this as you do everything else...one day at a time.
Keep us posted, Dear!