Am I having Seizures (simple partial motor)?

[Carolina]

So Dearest Sjogren's Angels,

I think I'm having simple partial seizures.  Do any of you have these?

Today  shaking on my left side, my arm, shoulder, hand. The shaking (tremor? seizure?) lasted about 10 seconds. The shaking happened about 20 seconds after I stood up and I had some preliminary dizziness.

This has happened about once a week for the past 6 months or so.

Today I tried to stabilize myself on a counter, with my left hand (I am left handed), but could not due to the shaking so I chose to fall to the floor.

My husband was in the room and insisted that I tell my neurologist  about this because it concerned him, of course.

I know that my neurologist ordered EEGs, both for one hour and also overnight, both with normal findings.

I take 3600 mg of gabapentin already. I doubt if there is any possible intervention or need for diagnosis.

I have profound PN and also SFN. I am Immune Deficient with IVIG every 4 weeks.

I am 74.

This is what it seems like (taken from Johns Hopkins website: http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/epilepsy/seizures/types/simple-partial-seizures.html

Motor – A simple partial seizure with motor symptoms will affect muscle activity, causing jerking movements of the foot, face, arm, or another part of the body. Physicians can diagnose which side of the brain is affected by observing which side of the body experiences symptoms (left brain controls right side, right brain controls left side).

It is, indeed, always something.

Hugs, Elaine

[SJSman]

Hi Carolina,

That is worrisome enough to call your Neurologist right away and ask him.  He might want to see you, or not - hopefully he knows you and hopefully you trust him (or her).

Whatever it is, if you are falling to the floor, shaking weirdly, etc...,  then that merits being checked out right away in my opinion.   

I will point out that the Neurontin you are taking is an anti-seizure medication in addition to being a pain medication, whatever that means in the context of your current problems.

Here is one example of what might be happening, so you can see why you should contact your Neurologist and tell him what is going on, or if you already told him, then give him an update today:

Suppose that your blood is sort of randomly clotting in one of your two carotid arteries.  Suppose that what you are experiencing is that one of the larger clots gets caught in one of your carotid arteries, you have these stroke-like symptoms, which in this case would actually be stroke symptoms and not stoke-like symptoms.  Suppose that the clots so far have all come loose and then your symptoms immediately vanish and the event is over.  This is why you are still alive.

This is exactly what happens to my father-in-law, who has had one big stroke and a few smaller ones, and who happens to be about ten years older than you.  It is just like you are describing when he gets a transient blood clot in his brain that comes loose after a minute or two.

OK, here is the reason to make sure your Neurologist is updated today - suppose these little events are warning shots, and your body is sort of randomly getting ready to throw a really big clot up there that won't come loose. 

Perhaps today is your chance to get on some type of blood thinner, from aspirin all the way up to Warfarin or the newer, more user friendly blood thinners.  Perhaps that seemingly small action could save your life.

I will just note - if you do have a big stoke, get to the Emergency Room as soon as possible.  They have medications to give you, in the first hour or so after the stroke, that can almost repair all of the big-stroke damage.  After a limited amount of time, maybe the first hour, it doesn't work any longer and the damage then becomes permanent. 

Those stroke-improvement medications that they give you in the first hour or so after your stroke are true miracle medications - if you have a major stroke you definitely want them - do not wait to go to the ER.

I don't know your medical history of course, so I might be way off-base in speculating on what might be causing your symptoms.  If so, I apologize for wasting everyone's time with useless comments.  I just want you to be OK, so I took a chance at describing my first thought as to what might be causing your symptoms.

[Carolina]

Thanks SJSman for your answer,

I see my cardiologist next week, so I can tell her about my symptoms, as well.  Good idea.

I sent a message to my Neurologist and he is very good about reading and replying.

I do have Coronary Artery Disease, with angioplasties and stents in 1999.  I have been followed carefully all these years, and had carotid artery doppler two years ago, and there was no significant narrowing.  But of course  anything is possible with blood clots.    I take Aleve (NSAID) twice daily and bleed more freely as a result.  And of course I take several medications (80 mg Lipitor, Atenolol, and a Diuretic), related to my heart.

And the large amount of Neurontin would rule out seizures, I would certainly think.  That is what is so odd about my 'episodes'.   It is the 'jerking movements' of my left arm into the shoulder, with no ability to control/stop the movements that is so upsetting.   Usually I just wait util the jerking passes, but today I couldn't balance against the counter and had to assume a prone position on the floor.  I have serious balance problems due to my profound peripheral neuropathy.

My husband is very knowledgeable about things 'medical' and we live 5 minutes from a hospital specializing in emergency care and has a Heart Center.

So I will be sure to get medical attention if and when I need it.

Hugs,  Elaine

[SjoGirl]

Oh Carolina, I am sorry to hear this.

Are any of your meds new? I eventually started having what would be akin to nocturnal seizures after taking plaquenil for more than 6 months (happened both times I tried it). Once I stopped the med the seizures stopped.

Yes, see your doc. No offense intended about your age, I work with elders and know it's simply a fact that our bodies change. Things can crop up out of no where.

Needing to fall is a big issue because you might not be at home next time or you might be on a set of stairs or might hit your head. Please call your doc asap!

[Kathy57]

Elaine,

Sorry to hear about your new trouble!  I hope you went down easy when you "chose to fall."  You don't need any sprains or fractures!😱😱

Keep us posted.

Kathy

[Deb 27]

Hi Carolina, when I developed sudden tremors a few years ago, my doctor ordered a CT scan of the head.  Sounds like yours might have been worse than just small tremors. Maybe a scan is in order?? Take care of yourself! I hope it gets better. It sounds like you've been through a lot with this disease.

[Carolina]

Dearest SjoGirl, Kathy and Deb,

Your care and concern are so comforting.  We take care of each other, even from miles away.

Deb, do you still have your tremors?  Was there a diagnosis?

I had another small episode yesterday.  A neighbor came to the door and when I opened it, my left arm began shaking mildly as I held the door.

My neighbor asked if I was ok.  I said, 'Thanks, yes I am.'   Of course I have no idea if I am or not!   That's the second episode this week, but the second was much milder of course.

I went back over my records and I had two episodes in May and now three in June.

I also saw that I am in pain every morning as I wake up, which is a different issue, but I always thought it was just THIS morning!   Our diary of symptoms and incidents is vital to our understanding of patterns and reactions.

My pain is generalized myalgia, burning skin (all over, mild), headache, and what I call bone pain, probably related to my osteoarthritis.  I take my medications as soon as I wake up, of course.  The Medrol, Aleve, and Neurontin will help when they kick in.

And of course I have profound neuropathy and walk with difficulty with leg braces.  When I look at this all objectively (impossible to do?) I see that I deal with quite a bit on a daily basis, and I am grateful I haven't had any serious falls, or any falls at all recently.

I haven't heard from my Neurologist, which is unusual.  Perhaps he is on vacation?  Or a bit weary of my issues?  Thinking about it?  Too busy? 

I'll keep tracking what is going on.  I could take MORE neurontin, or add Lyrica or something?  I have no clue.

I had MRIs (two) of my brain in 2010 when my neuropathy was diagnosed, and only white matter lesions were noted, and those are common in people over 65.  Sort of scar tissue in the brain I think?

Well, it's a bright sunny day, and that makes me happy!

Hugs,  Elaine

[SjoGirl]

Elaine, glad you offered an update. Hope you can connect with the neurologist because this persisting is not a good sign, even if it were a more mild episode the second time around.

Do I assume correctly that you have pored over the drug side effect information for all your drugs to see if temors are a possible SE? Another option might be to call your pharmacist to ask whether the combination of drugs might be causing them (I found that mixing Mexotrethate and Plaquenil was nearly deadly combo for me).

[jazzlover]

Do I assume correctly that you have pored over the drug side effect information for all your drugs to see if temors are a possible SE? Another option might be to call your pharmacist to ask whether the combination of drugs might be causing them (I found that mixing Mexotrethate and Plaquenil was nearly deadly combo for me).

-
and please do not add anything else to your mix, Carolina .. Let your doctor handle this.

[irish]

Caroline, I have been waiting to post on this thread but I am at a loss as to what to say. Imagine that!!!

You have had a lot going on and this is the last thing your want to happen. The first thing that comes to my mind is to ask if you have been tapering your gabapentin. Sometimes when tapering this drug people will have strange things occur. This is a drug that was first used for seizures before it was discovered that it helped for neuropathy. Sooo, some strange things could be cropping up with a taper.

What ever the reason I hope that you can get this taken care of as soon as possible. Good luck. Irish

[Carolina]

Thanks, Irish..

I take 3600 mg gabapentin daily, and have for almost a year now.  The first 'episode' occurred two years before I started the gabapentin.

At that time, in 2014, my neurologist ordered a scan of my carotid arteries, which were clear.

Since that time my Small Fiber Neuropathy developed and now it is covering more of my face.  I think this is related to my neurological conditions, but I really just don't know.

In general my motor coordination in my arms and hands is also deteriorating.  I'll make an appointment to see my neurologist, but I'm not optimistic that there is any resolution for this.

I continue to be in a minor flare state most of the time, progressing occasionally to more major symptoms (fatigue pain, depression, burning skin).   So I know my immune system is at work on some part of my organs/systems.

I remain patient, persistent, and accepting.  The depression that sets in from inflammation continues to be the most 'disturbing' aspect, since I am naturally optimistic.

Hugs, Elaine

[drylady]

  After years of taking Evoxac I experienced tremors in my hands and edema in legs.  Both went away after stopping medication.

[SjoGirl]

Hugs to you!

[Carolina]

So an update:

My neurologist asked me to track changes in blood pressure from lying down, sitting up and standing up.  This request came by email.  I don't see any significant change in the numbers.

I saw my cardiologist yesterday and 'mentioned' the dizziness and shaking, and she said "oh, more of your neuropathy problems". Her focus was any heart symptoms, and I'm doing fine on that score.

I had a couple of very very mild episodes recently.   So I guess it's just wait and see what's next (if anything).

and so it goes.

Hugs,  Elaine