So Dearest NeuroTalk 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: Simple Partial Seizures | Types of Seizures | The Johns Hopkins Epilepsy Center

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, ElaineD

Hi Elaine,

I am sorry you are dealing with more challenges.

It's really difficult to discern just what is going on for you.

I am happy to share and I hope it helps in some way:

I have had a lot of very strange stuff go on and have ended up in the ER, repeatedly, with severe neuromuscular signs/symptoms, which have needed immediate intervention. Now this is a conundrum because although I needed intervention, nobody could agree upon the intervention approach, as there were many conflicted opinions about just what was going on, even though they could readily observe the severe and relentless condition right before their eyes. The origins/causes/etiologies of some of the neurological conditions are difficult to discern without further investigation.

In addition to seizure activity, there are some forms of dyskinesias which act in similar ways as you have mentioned. There are likely at least a few conditions which may give you similar signs/symptoms.

As I have read more and more about various types of neurological, neuromuscular and/or movement disorders, I realize more and more just how complicated this all can be. My signs/symptoms could have fit any of several neurological/neuromuscular or movement disorder conditions.
I have needed a great deal of testing in order to get closer to the truth about what is going on in my case.

I suspect you may find the same and only a very astute neurologist will be able to further discern the exact nature of these episodes you describe.

I know I do not enjoy going to my neurologist with new signs/symptoms. I often feel like: "What now?" I feel so very exasperated at times.
Yet, it's important I share more of whatever goes on. It's the only way we can narrow down what's truly happening.

I understand your feeling that "it's always something" and am sorry that, you, too, have had to live with challenges which many cause us to feel this way at times.

I hope you will share with your neurologist, just to be as safe, as healthy, as possible.

I do enjoy your avatar picture, such a radiant smile!

With Love and Concern,
DejaVu

I do have a suggestion for you, Elaine.

You have some risk factors for stroke, so these episodes may be vascular warnings (TIA) of the carotid or higher. IVIG carries a stroke warning for the elderly. The dizziness and weakness (inability to stand) are stroke warning signs. Lipitor has shown some stroke potential as well.

It might be helpful for you to keep a journal logging all events that led up to a spell. Mornings only? Upon standing only?
After a meal. Before a meal. Only when tired. After taking certain meds? etc. It seems to me your doctors should be evaluating this risk for you, but you are not mentioning a doppler or tilt table test.

I hope you find out what this is very soon, as 6 months seems too long to me to have these symptoms and falls because of them.

Dear Mrs. D,

Thanks for your thoughtful reply. I had a carotid scan after the first episode in 2014. All was clear.

The episodes seem to occur after I stand, walk maybe 15 steps, feel a bit dizzy and then the jerking on my upper left side occurs.

I have been taking 80 mg Lipitor for almost 17 years (and lower doses before my angioplasties and stents). Of course the cumulative effect could be causing problems.

I notified my Neurologist by email, but haven't heard from him. I think I'll make an appointment. I'm still have burning skin from my small fiber neuropathy which has now spread upward on my face to to the area around my eyes. And I take 3600 mg Neurontin!

Actually today I just feel weary of the whole thing. Yesterday when I opened the front door to a neighbor, I had a smaller brief episode as I held the door. She saw it and asked if I was 'ok'. OF COURSE, I said I was. It's the first time someone other than my husband saw my 'episode'.

So wonderful to have you and others here to share my concerns with.

Hugs, Elaine

I'm sorry you're experiencing this. I can speak from my own experience and knowing that you also have SFN. SFN can and does cause tremors/vibration/shaking. In my case, it's a prominent symptoms. There are times that my entire body shakes, though more often it's my left side and lower in the body. I have lots of muscle twitches as well, including complete spasms or jerks of parts of my body when trying to sleep. Finally, I have very prominent tremors/shaking in both my hands. I should also say that I often get dizzy when I stand, because of my dysautonomia that comes along with SFN too.

I wanted to add that there is no evidence of motor involvement in my case. All tests have been negative, and I seem to only have small fiber involvement.

David, I am so excited to find someone who experiences some of my symptoms! I guess it's true that 'misery loves company'. i used to see that saying as negative but now I know that it's just an accurate description!

The part that is confusing about this for me is that I have so many other conditions, including such profound Peripheral Neuropathy that I must wear braces on my legs to walk at all. And Immune Deficiency, Sjogren's type problems, autonomic neuropathy, and other conditions.

So I keep hoping that NEW things won't arise. But they do, of course. I must practice Patience, Persistence, and Acceptance, every day. And Gratitude!

Hugs, and thanks, ElaineD