Nighttime seizures - Myoclonus

[SjoGirl]

Oh sigh. I have been feeling good since having taken a Medrol pack and having my left-hand trigger finger resolved. Now I'm starting to experience myoclonus (nighttime seizures) again. I had a terrible morning feeling like I could illustrated the song Shake, Rattle, and Roll.

I have had this in the past but in both cases, it was drug induced, e.g., Plaquenil. However, I checked my drug side effects, none of the ones that I take should be causing it. Do any of you have this problem? Have you found the cause?

I am as much looking for information as I am venting because I don't want to start another drug or to see another doc right now. Thanks for listening.

[Carolina]

Dear SjoGirl:

I found this for Lansoprazole side effects on Healthline:

https://www.healthline.com/health/lansoprazole-oral-capsule-sprinkles

Low magnesium levels. Using this drug for three months or longer can decrease your magnesium levels. Symptoms can include:

seizures
dizziness
abnormal or fast heart rate
jitters
tremors (jerking movements or shaking)
muscle weakness
spasms in your hands and feet
cramps or muscle aches
spasms of your voice box

Are you taking Magnesium?  If not, a magnesium supplement might help.

It really is 'always something' isn't it?

Regards, Elaine

[SjoGirl]

Carolina, well I am glad that I asked. That is one drug that I did not look up and would not have thought might have such side effects. I have been on this drug for quite some time and am already prone to B12 deficiency. I think I will check with my gastroenterologist about this. Thanks!

[jazzlover]

Many drugs deplete magnesium.

I hope this will pass soon!

[Carolina]

Dear SjoGirl,

I took Cymbalta successfully for 6 years.  It was my magic pain reliever and I recommended it to everyone.

In the 7th year I developed both myoclonus AND syncope (sudden collapse to the floor without warning).  I had every test in the book, saw an epilepsy specialist, requested and had an MRI. Could it be a brain tumor? No it wasn't.

Myoclonus happened for me during the day, and several times a day.  My left side would suddenly shake for about 30-40 seconds.  Once I was holding a pot full of hot coffee, and I splashed it all over!  I couldn't let go of the pot or put it down.   

Syncope happened about twice a month.

I had to stop driving, because who knew when I might collapse to the ground.  This happened even when I was holding onto my walker.  All muscles just suddenly relax with syncope, and often I did't even realize I was falling until I was on the floor (fortunately I never was seriously hurt!).

The myoclonus and syncope lasted for 18 months, and then I inadvertently left Cymbalta out of my medications 3 months because I had run out and didn't realize it.

The myoclonus and syncope disappeared as suddenly as it started, and I had no clue why, but was quite grateful.

When I remembered to refill my Cymbalta and took it again, within one week, the myoclonus and syncope were back.

And in fact any SSRI/SNRI I tried thereafter caused the symptoms to return.   I take Wellbutrin now without those symptoms, but it isn't as effective for pain.  :-(

Any drug can develop side effects I've found, the hard way.

Regards, Elaine

[SjoGirl]

Elaine, You have had such a hard time. I had to stop plaquenil twice because of this and doing so addressed other terrible side effects as well. I am now wondering if it is a drug or an underlying disorder that somehow rears its head periodically.

FYI I did have testing for epilepsy which was negative. Also had MRIs to test for anything brain-wise that might be an issue. While the MRIs proved to my spouse that I do have a brain nothing there suggested a seizure disorder.

I am going to wait a bit to see what transpires as much or more because this so far has never happened during the day. It also has remained stable unlike when I was on plaquenil when it got worse and worse -- the seizures would wake me from my sleep. I also just stocked up on this drug and am sick of seeing docs.  I realize that might sound terrible but you might understand that thinking.

I do appreciate your support and the information, both are very helpful.

[irish]

Just a side note. Magnesium is great when it is needed but one should really ask there doc and have blood work to measure the magnesium level.. Wrong magnesium levels can affect heart function in a bad way. Irish

[SjoGirl]

Irish, Thanks. After having another bout last evening (I felt like my arms were running a race), I wrote to my PCP this morning. I told her about the symptoms, the fact that I have had them before and had been tested for various causes and that I had to stop taking some drugs because of this, that this might be related to lansoprazole. I then asked about testing levels of various vitamins and minerals that might be culprits. This is a precursor to contacting my gastroenterologist, who I will be in touch with if it appears that it might be the lanzoprazole, I just would like some backup so to speak before I'm in touch with him.

Another thing, sigh. 

[SjoGirl]

Sooooooo frustrated. My PCP is out and has no appointments until May, the person who answered my message won't order the bloodwork because I had not seen my PCP since last year. I tried the gastroenterologist, they said highly unlikely that it's Lanzoprazole causing my issues and to contact the PCP! Now I am trying the PA at the PCP's office. If that doesn't work I'll have to try the neurologist or my rheumy. Oy!

[Carolina]

SjoGirl,

Have you thought of just stoping the Lanzaprazole for a few days?  It probably isn't causing your myoclonus, but stopping it for a few days, maybe a week would give you a chance to find out.

It's just a suggestion.  I don't know how bad your acid reflux or gastritis is, so I don't know how bad it would be to just take a break from the Lanzaprazole.

I took Omeprazole for years to off set the damage from Aleve (magic for me).  But when I had gastritis even with the Omeprazole, I stopped the Aleve, and then the Omeprazole!

Then of course I had to stop the Cymbalta because it was causing myoclonus and syncope.  And Cymbalta was my OTHER magic medication.  Now I'm without any magic, alas.

And you know Cymbalta usually never causes a problem.  It is only a rare side effect, but one that affected me after SIX YEARS.  Who knew?

Anyway, just a thought that you might take a brief 'vacation' and see what happens, while you're waiting for some doctor to help you.

Hugs, Elaine

[SjoGirl]

Elaine,

Would that I could take a vacay from Lansoprazole. However, I missed a couple of doses because I forgot to take my meds with me when we went to be with my stepdaughter last month when she was having a baby. I was crying the blues by day three because the GERD was so bad.

I emailed with my neurologist and asked if I should be worried about this. He said to just leave it for now but to let him know if it gets worse, if so he will prescribe Keppra, which I have taken before to control this.

The shaking has subsided this week, potentially affirming my other suspicion that this bout was due to exhaustion. We had been taking care of my stepdaughter's cat for several weeks prior to and after she had the baby, the cat had us awake at all hours of the night (this even with our bedroom door shut). I had read somewhere that lack of sleep can be a cause of myoclonus, I am hopeful that was the reason for this set of episodes.

Thanks for the good thinking though, it's one of the great values of this group.