2nd "event" in two weeks

[socrates2k1]

To all:

I have written about this experience before, just two short weeks ago.

Call it an "event" or an "episode" (whatever you wish).

Last night, around 11PM, maybe sooner,

First, my feet began feeling cold (on the inside, if you know what I mean), but to the touch they were warm.
Next, I began getting tremors in my left arm (start, stop, start, stop, etc.)
Then I get this feeling, in my mind, that things were about to get much worse

(I described before that it's like a mind freeze, but that's not a correct description)

The feeling, in my mind, is NOT a freeze (that I cannot move, speak, etc.)

The feeling, in my mind, IS that something is about to happen and I will not be able to control it or stop it!

I think that's why tears begin to flow, because I know I will not be able to control what is about to happen, nor be able to stop it, myself, once it begins.

This time, mainly my left arm, had severe tremors, but my right arm soon followed.
Next, I began to hyperventilate.
I felt very cold, inside.

As my tremors continued, uncontrollably, my wife knew what to do.

First, she made sure to give me Diazepam (Valium) and some ibuprofen
Next, she got me to lay down and cover up.

We have a heated mattress pad, plus I already had two blankets and she added a third.
Also, she had me put on a hat, to conserve heat in my body.

She had me concentrate on my breathing, to help me not to hyperventilate.

This went on until about 2AM, finally the tremors subsided.

I have a Min-Pin, named Harley, and whenever I have these "events", he usually comes to me, lays down by me, and allows me to use his body to place my trembling hands on.  He will not leave my side, until it is over.

My wife, after she got me situated with blankets, medicine, and all, went and got him, and he came to my aide.

Also, it was Wednesday, one of the days I take my shot of Rebif (at 7PM, but more of a coincidence, I think).

This was one of the longest "events" in terms of time, from start to subsiding, since I had my first one and went to the E.R. by ambulance.

I know it's NOT a "panic attack", but I have done some research and it may be what is termed an "MS seizure".

It's not like I cannot move or cannot speak, I can, but during this episode, you are basically (for lack of a better explanation) concentrating on the fact that two things are going to happen (tremors and hyperventilating) that you will NOT have control over, and you will just have to "ride out the storm".

So, what my wife sees is:

I have a scared look on my face
Tears are streaming from my eyes
My arms and hands are shaking violently
My body is shaking (as though cold or freezing)
My breathing quickens to the point of hyperventilation

Once I lay down, cover up, and take some medicine

I still have:

A scared look on my face
Tears are streaming from my eyes
My arms and hands are shaking violently
My body is shaking (as though cold or freezing)
My breathing quickens to the point of hyperventilation

Then between my wife letting me hold her arm, and my dog letting me use his body, and concentrating on my breathing, things will eventually begin to settle down.

This can take anywhere from 60 minutes to 2 hours or more.

I pray, none of you, experience this, but in case you do, you will know you are not alone.

Take care and God bless,

-- Socrates

[Wobbly]

Oh my goodness, I'm so sorry to hear you are going through these type of spells.. I've not heard of MS seizures before, but then I'm new with MS.. just Dx last summer.  

I"m glad that you have your wife and "family" there to help you and me knowing this is good for me as I'm SPMS and having all sorts of problems.  If something like this ever happens I will have an idea of what to do.  

education on MS is important.  take care friend
wobbly

[twopack]

Oh Socrates, this sounds like a very frightening experience.  I can't help but wonder if your muscles are sore today after all that erratic movement.  It must take a toll on you emotional too, especially if these events are occurring with increased frequency and lasting for hours.

This sounds very much like a simple partial seizure to me.  I know that nothing about this is simple when it's happening to you!  That's just the name they are given.  Staying conscious, speaking, spontaneous emotions, and spreading tremors are all common during simple partial seizures.  The tremors usually stay on one side only but hey, around here we are used to variations on the usual.

I'm thinking I remember you saying you were told these events weren't seizures.  I'd be looking into that again because:
1. You have a history of head injury and seizures can develop for some time afterwards.
2. Seizures (like so many things) are more common in people with MS.
3. You indicate Valium helped and it is used to help stop seizures.
4. You indicate the frequency and intensity is increasing.  My guess is it will continue.
5. Simple partial seizures can be controlled with medication.
6. (You might think this is weird but..) Your dog has shown behavior common to some canines who can sense seizure activity.

I know you are between a rock and hard place with no medical coverage but there must be some help for you out there.  Have you contacted your local MS organization or a head trauma group?  I'll keep trying to think of possible places that might help.

I believe this is something that can be managed relatively easily at low cost and would give you a huge sense of control over at least part of your medical condition.  Let us know how it goes.

Mary

[Quixotic1]

Mary, this certainly couldn't be a simple partial seizure as these rarely - by definition - last more than 2 minutes, usually less.  But I think you are on the right track.  I agree that a partial complex seizure is in the running.

This isn't my field of expertise.  But you now have three stereotyped episodes.  I agree that you need to see a neurologist experienced in atypical seizures.

I pray that you can get some coverage soon.  

Next time I would go to the ER and tell them that a family friend who is a physician, says that these are stereotypic neurolgic episodes that sound far more like seizures.  They are NOT panic attacks.  Perhaps some medication can be started there.

Quix

[twopack]

Sorry Quix and Socrates.  I did lose track of the length of the event when everything else fit so well.  I was also thinking that only the simple partial type allows for speech and full consciousness during the event.  Of course I'm no expert.  Just a concerned cyber friend.  Hours long tremoring doesn't fit in with usual seizure activity at all does it?

Do you have a way to make a video if/when this happens again Socrates?  It might be helpful down the line when you see that specialist.

Hope you are having a quiet, relaxed evening tonight.
Mary

[supermum_ms]

I totally agree with Quix, i was thinking it could be seizures based on your history, anyone with your history should not be told its anxiety unless there is no other possible explanation, and your history will always lead away from the simplicity of it being panic attacks.

But playing devils advocate here, it could be partially panic, brain response and still outside your control, why i'm saying this is that your emotional response is secondary to the knowledge that you will not be able to control your physical body for the next few minutes or hours. Cause and affect, the primary issue being intermittent loss of your physical controls leading to the secondary. I am just speculating but the secondary could be emotional liability or something similarly named.

I can sort of relate (?), i have a rumbling tremor (fingers crossed its now dormant) which is totally different to the other tremors i get. I feel it coming before its visible, like standing near the rail line, physically feeling the train coming way before you see the train. Rappidly it builds and builds, and i know there is nothing i can do to alter its path, its coming. Somewhere along the line the signals are misfiring, soon the tremor will take over and i'll be moving upto 2inches up and down.

It is the initial feeling that is the most unfriendly (horrible feeling), that whack of recognition that its on its way often gets me curled up like i'm holding my self together, waiting for its arrival. Once its arrived there is nothing i can do, i dont like to do nothing though, i think i feel worse so i potter around trying to distract myself. I dont actaully have the same emotional respose but it is still entirely possible that my laughter is simply the flip side and i laugh a lot after its arrived.

Though i dont think i'm having seizures, but then i dont have your history, if i did i might be thinking differently. Did i make any sense or am i just going off track?

Take care!!

JJ

[socrates2k1]

Well, yes, I have a camcorder I could use I guess, if it would help, sure

-- Socrates

[socrates2k1]

Yes, I can relate to that.

I have went back over my documentation, and these "events" have occurred, at least 7 times so far (I can't be sure that I wrote down every one, MS short term memory glitch, if you know what I mean).

The first one occurred back on Thursday, September 3rd, 2009
This is the one I went to the E.R. by ambulance

The rest have occurred as follows:

Wednesday, November 4th, 2009
Monday, December 14th, 2009
Tuesday, December 15th, 2009
Friday, January 8th, 2010
Wednesday, March 10th, 2010
Wednesday, March 24th, 2010

Obviously, Wednesday's seem to be a bad day, huh.

[Also, today was my wife's birthday, so we went out to dinner, at a buffet style restaurant.  It was the 1st time we have done this since my accident last July.
and I had severe tremors the entire time.  It seemed like the longest dinner of
my life, but I got through it, with my wife's help]

Yes, I agree, at least the tears are my own emotional response to what I know is coming (uncontrollable severe tremors in my arms and hands).  The hyperventilation though does not seem to be an emotional response.  It simply coincides with the onset of the tremors.

-- Socrates

[twopack]

I realize it could feel uncomfortable to record a video of one of these events.  Yet, we see all too often how easily doctors will dismiss something they haven't witnessed personally.  That was the basis for my question.  You never know what will be helpful.

I did find some interesting information on the Epilepsy Foundation website.  I am NOT trying to push a specific cause for the event you described.  I just think some of this may sound very familiar to you.  Seizures can centainly produce far more sensations and experiences than I had ever imagined.  The Epilepsy Foundation allows reproduction so here goes.
---------------------------------------------------------------------------------------------
People who have simple partial seizures do not lose consciousness during the seizure. However, some people, although fully aware of what's going on, find they can't speak or move until the seizure is over.

They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure. And they can usually remember exactly what happened to them while it was going on.

However, simple partial seizures can affect movement, emotion, sensations, and feelings in unusual and sometimes even frightening ways.

Movement: Uncontrolled movements can occur in just about any part of the body. Eyes may move from side to side; there may be blinking, unusual movements of the tongue, or twitching of the face.

Some simple partial seizures start out with shaking of a hand or foot which then spreads to involve an arm or a leg or even one whole side of the body.

Emotions: A sudden feeling of fear or a sense that something terrible is about to happen may be caused by a simple partial seizure in the part of the brain which controls those emotions.

In rare cases, partial seizures can produce feelings of anger and rage, or even sudden joy and happiness.

Sensations: All five senses -- touch, hearing, taste, smell, and sight -- are controlled by various areas of the brain.

Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.

For example, a room may suddenly seem narrower, or wider, than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.

If the area of the brain involved with memory is affected, there may be disturbing visions of people and places from the past.

Sudden nausea or an odd, rising feeling in the stomach is quite common. Stomach pain also may, in some cases, be caused by simple partial seizures.

Episodes of sudden sweating, flushing, becoming pale, or having the sensation of gooseflesh are also possible.

Some people even report having out of body experiences during this type of seizure. Time may seem distorted as well.

In many ways, our usual, comfortable sense of familiar things and places may be disrupted by a simple partial seizure.

Well-known places may suddenly look unfamiliar. On the other hand, new places and events may seem familiar or as if they've happened before, a feeling called déjà vu.

Simple partial seizures can also produce sudden, uncontrolled bursts of laughter or crying.

http://www.epilepsyfoundation.org/about/types/types/simple.cfm

[socrates2k1]

Wow, that "hits the nail on the head" doesn't it (unofficially of course), but it sure sounds very familiar to me.  Now, if I only knew how to deal with it.

Thank you so very much.

Take care and God bless,

-- Socrates

[daisy.girl]

Hi,
I don't think we have met. I am sorry for all you are going through. I was reading that you have no insurance and unsure what to do right now.

Dr. Radkte on MDweb has an epilepsy website. He will answer your message....He is a neurololgist at Duke and has specialized in Epilepsy. If nothing else, he could point you in the right direction.

Maybe he would know of low cost or no cost clinics.

God Bless You.

[michelleric]

That sounds very scary.  I hope the think above can help answer some questions.

Most hospitals have "free" care of you qualify.  I know Cleveland Clinic does, and I am sure there are many others that have this too.  I would check into it.

Michelle