Hi everyone, Im new here

[Ruth]

I get twitching off and on. Do you mean tremors?

[Tracy-Lynn]

I don't know if it's a tremor.. it starts with muscle twitching... exactly evenly spaced twitching.. like a rythym. it spread from foot to calf and calf to thigh....when it reached my thigh my foot and calf were still twitching.. it freaked me out actually. i dont know if thats a "tremor". Now that my period is over they are coming less but i know when its that time again they'll be back full force.. I have cut back certain things in a huge way..like coffee tea, etc.. I have my 1 coffee in the morning now, as opposed to my normal 10 a day... i drink only decaf teas.. have cut out soda's and other junk food like chips and candy etc.. which is what I should be doing anyways.. Maybe I should ask if I can have the monitored eeg in hospital for a night when im expecting my period.. that one time when i couldnt feel half my face i was so scared.. my mind was going everywhere..like im thinking, am i having a stroke?... no stroke but scary none the less. This whole thing has brought other things more to my attention as well, whereas i didnt think much of them before. My daughter has this issue during the night in her sleep where she shakes.. its not a violent shaking.. it looks like when you move a newborn and they do this thing where they fling thier arms out and legs... but she will do this shaking for a minute.. we thought that was a sleep thing so we just ignored that. She's almost 7 and stil does it sometimes.. she doesnt wake up during it.. one of the reasons Im concerned now is because she has some serious visual issues.. when she was 5 the eye doctor discovered she has refractive amblyopia, which is a difference between the eyes in visual acuity.. her was huge. right eye 20/20, left eye 20/2200 which is beyond blind.. she is being treated for that with patching and it has recovered some of the left eye vision.. but also my daughters pupils are misdilated, always.. one is way bigger than the other,,its called anisocoria.. alot of the time it is physiologic, and not a cause for concern.. the opthalmologist 6 months ago said, we'll keep an eye on that.. anyways it hasnt changed.. also now.. and this is new.. but she is seeing a big white blob in her left eye vision.. the blob take up half she says and the blob doesnt move.. the doc looked in her eye and couldnt find a real reason for this.. Does anyone here think a visit to the neurologist is warranted?? the opthalmologist says it might be worth her having a consult.. what does everyone think?

[epileric]

I know that during a seizure my pupils dilate so it makes sense to me that our neurology is connected to our eyes. I don't know if this warrants a trip to the neurologist (maybe you should call & ask him/her) but IMO the situation re. your daughters eyes should definitely be mentioned next visit.

[Ruth]

Definetly she needs to see an eptilologist or a neurologist. The jerking of her legs and arms at night is what I experience, it is tremors. I take mysoline for it.

I would also take her to another opthamologist.

[tripletdad]

I have gone through some of the same things, though it rare that I see lights. I go stiff and I have really hard jerks (myoclonic seizures)at night esp when I am tired. Often, if not most of the time I am not aware of them unless my wife points them out or has to subdue my movements It is often when I am really tired or stressed. Keppra has reduced these 80% or more with me.

I will also yell out random words as well (that happened a lot during the day too and keppra has almost eliminated this too).

Sometimes i can feel them coming on too, almost like my body is gathering up energy, its a weird and difficult sensation to describe.

My last EEG was 30 minutes long when I had just started keppra and it showed 6 seixures in my left temporal lobe and the technicians noticed at least one, though in CA they are not allowed to say anything.

I have not had a follow up EEG yet, but will have one soon. I have noticed a big difference on Keppra despite all teh sidee effects I battle.

i hope this helps.

[Ruth]

It does help me. Keppra has been a real help to me. I also take mysoline as well for the same things. What works for some people does not work for others. That is why we have a lot of medicines for the doctors to choose from. I remember 60 years ago, when only Dilantin was the first break through for medicines.

[Tracy-Lynn]

well, according to my husband I am now having what he describes as "me not there" moments...of blank staring..looking up.. that last for 5-10 seconds... its happenned a few times...except this last time i realized i peed my pants.. how massively embarrassing was that i dont know what to do.. does anyone else do this??

[No Shame]

because i'm not a doc, but your twitching and spreading of course sounds like the Jacksonian Marches that if you google is characteristic of E. I thought i had them for a long time...but my shaking was confined to when i would be laying in bed, resting and reading, and i would notice both my hands would rock back n forth while holding a book. The neurologist just told me i was tired. Then she ordered EEG, diagnosed EP. 5 EEG's later, and 3 diff neurologist's, no EP, just some seizure activity due to a bacterial infection. Keep with it...and always log your symptoms. I see a therapist too---who isnt a Psychiatrist and thank god...i would have been labeled insane by now. But she's been very forthright in saying...what i will say to you now. It's neurological but not mental. You have to figure out what it is that's causing seizures, if they are epileptic or non-epileptic. And non-epileptic does not mean you're crazy.

[tripletdad]

My family (brother, mom and dad) referred to me as "spacey" growing up/

Neurtontin kept the grand mals at baybut did little for the myoclonic jerks and the "spaceyness"

I still get them but they are now rare on 3000 mg of keppra. My entire family says I am "more in the moment" now.

[Ruth]

Hi everyone,

Tracy-Lynn, I had staring spells the whole time I was growing up. They are called absence seizures. I still have them. What I do for embarrasing moments is wear a menstrual pad. That way no one knows about it. I am 66 years old now. I have other types of seizures and NEAD mixed in there.

[skillefer]

Oh yes...I've peed myself during a seizure. Very embarrassing. Especially when your a schoolteacher. *chuckle* Those spacey moments you described might be what are called absence seizures. Those are actually usually missed alot when diagnosing. Most people think of the violent convulsions that are shown in TV shows and movies when they think of seizures. You should go see your neurologist and let him know what's going on. Also, sounds like you might want to take your daughter to the neurologist too...as well as the eye doctor.

[epileric]

I remember in elementary school I was notorious among the teachers for day dreaming because of my seizures.

[Ruth]

epileric,

I had the same problem. I thought I was day dreaming as well, even though it was my seizures. Did you think you were day dreaming?

[Tracy-Lynn]

Thanks everyone.. wow im not alone..
no its not like daydreaming.. i can be doing something , even talking.. and suddenly stop and im just not there and my husband says it looks very obvious when it happens like that..
Just to mention, about my daughter, she sees an opthalmologist regularily.. for her severe vision problem... he's now saying though that a neurological consult is a good idea, due to her misdilated pupils... because he says that is NOT related to her visual problem.. he says it might be nothing too.. but we shall see..

[Tracy-Lynn]

Hi everyone.. wow im just feeling so helpless today.. Yesterday was one of my "bad" days.. For some reason I couldnt feel my bum cheek on the right side.. on and off for hours.. its like my butt wasnt even there..lol.. hope this doesnt sound crazy and i will share it with the doctor again, but my genitals are "buzzing".. this happens on and off as well.. few times a day.. for a minute or two.. Yesterday I had a longer one of my "abcenses".. according to my friend I have about 5 minutes of missing time... its probably more like 3 minutes..i dunno.. Another thing is this stupid yeast infection problem i have.. I have no chronic illness that im aware of and ive been tested for everything.. yes i keep getting vaginal yeast infection and thrush in my mouth. The first time i was give a swish and swallow, which did nothing.. then i was given a one day treatment of fluconazole.. it eased off but came right back with a vengeance.. Now im on a 6 day treatment of fluconazole... sorry im venting all but this is getting so frustrating...

[Tracy-Lynn]

Im not too sure, but also i think the fluconazole may be lowering my threshold..

[Ruth]

Hi Tracy-Lynn

The buzzing in your genitals might not be due to seizures. It might be lowering your threshold.

[angie2312]

Hi Tracey

I have just read your post and its sounds SO similar to whats happening with me - I remember having these "things" as a child but they stopped and came back around 4 years ago - Most of mine occur when i am either asleep or trying to sleep = I do get them during the day too and they are so strong at the moment they wipe me straight out and I have to sleep for hours
I saw a neurologist for the first time a month a go - and since then have had an EEG and an MRI - and now have to wait until August to hear anymore - It is a lengthy process - I wish you lots of luck and hope it all happens quickly for you :O)

[RobinN]

My daughter also has out of control yeast at the moment with a huge eczema flare last week. She had antibiotics at the beginning of the year, which put this into overdrive. I use Grapefruit Seed Extract (don't use if you are on an anti-epileptic drug due to the grapefruit reaction). We drink it is Mango juice, as it is a very strong liquid. It helps with the problems almost immediately. I also used Vit E oil on my daughters skin which dramatically improved healing.
Biotin is also a good supplement that is needed to keep yeast under control.

I too have had some similar symptoms, as I attempt to combat what I believe to be fungal / yeast issues in my own system. The GSE helps immediately.

I believe, as do many in the Autistic community that the yeast, intestinal issues (leaky gut, constipation/diarreah) and neurological symptoms are all interconnected. Not all the symptoms are the same for each person. My daughter had speech delay when she was young, and many of the intestinal issues. As a child she was on a few different antibiotics for ear infections.

I just see a growing number of people, children, that are trying to cope with the same problems. I think it is more evident in young people as they have not developed the chronic diseases that are caused by some of these underlying problems. For many there is also a toxicity problem. My daughter has high metals in her system.

The vision problems might be your red flag here. Please don't think that I am saying your child has autism. I am not a doctor and would never say that. I am only saying that it is like the poster child of neurological disorders, and we can certainly learn from what is being discussed in their community. Epilepsy is only a label for two or more seizures. It does not address the underlying cause of the problems.
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