Hello all, newbie here. I had posted in the movement disorders and neuromuscular pages but after briefly talking with one of my patients today (I draw blood for a living), she suggested my symptoms might point to epilepsy, so I figured I'd repost here to see if anyone has had similar experiences.

A year ago I started with "flashing" in the eyes. Like a strobe light in the corners of my eyes. It was only at night, and only when looking at something red or orange. Wierd huh? Now, pretty much all the time in my left eye and rarely in the right eye. Saw 2 opthamologists and both still say it's posterior vitreous detachment aka the fluid in my eyes is shrinking and pulling on my retina. They admit I'm young for this problem, but "its a natural process" they say.

A few months ago, I had really bad neck pain on the left and had an Xray, which of course was negative. My PCP said it was muscle strain and gave me Flexeril and Iburofen. It eventually went away.

About 6 weeks ago, I noticed my big toe on my left foot was twitching. Moving back and forth by itself. Then within a week, I started to feel a like someone was plucking on my sciatic nerve, a deep "twang-ing" feeling and a vibration all the time- like my foot was in on the floorboard of a car with no exhaust or like an electric charge building up. The muscle fasiculations are visible to the eye in my leg, you can see my calf and buttocks and thigh moving. My toe will move so much, I'll try not to put weight on that foot because it makes me unsteady. I feel a constant tingling, but the electric shocking feeling comes and goes.

I have had 2 microdiskectomies in my lumbar spine and the last one in 2010 was because a disk fragmented and was stuck in my spinal canal. The swelling was so bad, I had to be on high dose steriods before they could operate and it left me with a drop foot/weak achilles tendon in my left foot. So when this started, I went back to my spinal surgeon and we did another MRI showing the disk L5-S1 on the left is bulging again and to add to it, the L4-L5 on the right that I had operated on in 2007 is herniated again. He proposed an epidural steriod injection which I did not get because then the same thing started happening with my left thumb. Plus, I wasn't having any nerve pain, my muscles hurt from the spasms, but nothing like I'd experienced with my back in the past.

So, now the thumb is going and the toe/leg are going nuts all the time. Then about a week ago, I got really stressed out at my 2.5 year old and my neck sort of spasmed, although it didn't hurt like a muscle spasm, but it pulled my head down and to the left. Luckily that hasn't repeated since.

I clench my teeth really badly at night, so much so that my teeth have actually loosened and worn down from it.

I had blood work, all normal besides an elevated C-reative protein, which is always high when they test it on me (and the rheumatologist I saw said it must just be "normal for me"). Lyme negative, other tick bornes like Ehrlichia and babesia negative, normal chemistries, normal CBC, normal sed rate (strange with the high CRP). I've had my ANA tested multiple times in the past and its always neg. All autoimmune tests are always neg. like, Rheumatoid Factor and stuff like that. I did have Epstein-Barr last year though. An MRI of my brain w/o contrast was "unremarkable".

I have an appt. on 9/12 to see a neurologist. Hopefully I can get some answers. I draw blood for a living and I can't hold the needle in my left hand anymore, I've had to switch to my right. The flashing in my eyes is driving me nuts too. I just hope it stays on the left for now and doesn't progress to the right or I'm screwed. Especially since the doctors keep blowing me off like I'm some looney.

Anywho, I was researching things like epilepsy and clonic seizures and wonder if I sort of fit the bill. Could I be having mini-seizures and be aware during them? I am very overtired with a 2.5 year old, stressed about work too. I feel especially tired a lot during the day, like I can barely keep my eyes open.

I was diagnosed borderline ADD in school, but always did well, but I do "zone out" a lot. I also have a really high sensitivity to asparatame/nutrasweet, I get extremely dizzy from them. Even sugar free gum.

It's just strange that all the issues right now are on the left side of my body, which is why the patient today suggested right (perhaps temporal) lobe epilepsy.

Thanks for listening! I'm interested in any feedback you may have!

Carly

Hi Carly,

Welcome to the epilepsy forum! Stress and lack of sleep are the 2 main things that can trigger seizures for a person. Just like you I have herinated discs L4 and L5 S1 all the tingling you feel in your legs along with the twitching you have is all related to the back problems. My husband has had to have back surgery twice for herinated discs and he has had tingling in his legs and other parts of his body.

You mentioned that you were boarder line ADD this sometimes can lead to epilepsy for some people. Also the color you see in your eye could be an aura seizure also known as a simple partial seizure. This can sometimes happen when certain colors trigger seizures and it's called "Photosensitive"
I found out that I was photosensitive a few yrs. ago when my Epileptologist
did a special e.e.g on me and flashed different color lights one at a time by doing this they found out what colors were triggering my seizures.
My advice to you is to see an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at university or big hospitals. Have your family Dr. refer you to one and have a e.e.g., MRI, CT scan, Spect scan, and PET scan done. Whatever you do stay away from aspartame (nutra sweet) it's been proven that nutra sweet causes more electricial activity in the brain and it can cause seizures for some people. I found that out the hard way when I used to drink diet soda and the next day I would have seizure after seizure.
If I may ask after you see the colors in your eyes do you feel confused like your not sure where you are or what happened and do you feel tired and have a headache? If you do these are all signs of how a person may feel after they have had a seizure. I've had temporal lobe seizures for 39 yrs. and I've had 2 brain surgeries to help reduce my seizures. Take note of what the weather is like and if there's a low pressure because that can sometimes trigger a seizure. I wish you the best of luck and May God Bless You! In the mean time start taking vitamin B12 1000 mcg. once a day this will help with your back and if you are having any seizures because it calms the nerves down.

Sue

Porkette, thank you so much for your reply. I have been complaining about the flashing for a year now, and how only certain colors seem to trigger it. I never feel tired or headachy after I see them, its intermittent through the day, depending on the color I'm looking at actually. I remain aware all the time, I usually complain to my husband "there it goes again." I don't notice the flashing if I'm looking at something white, only if there is something dark in my field of vision and I REALLY notice it if there is something orange or red. We are big Philadelphia Flyers fans and have a lot of orange in the house. I also can't see movies in 3D and get a terrible headache if I try. I told the optho. this and they did a (black and white I might add) 3D test in the office with a book and I could see 3D there, but not at the movies.

But there are times when he will say we talked about something and I do not remember. There were times when my son was an infant and he said I got up and took care of him when he woke up but I had no recall and I mean NO recall at all. I chalked it up to sleep deprivation. Even as recently as a few months ago, he has gotten up to take care of my son during the night and I don't recall it at all. My family will tell me they told me things and I don't remember and get really ticked off about it, because I know that it would be something I'd remember because it was important.

As far as the toe movement goes, I was sure it was my back. Although there was no nerve pain, which I thought was wierd, especially after the excruiating nerve pain I had when the disk fragmented last year. I had a microdiskectomy and have been pain free since. The newest MRI only shows a mild bulging of that L5-S1 disk on the left and the surgeon was puzzled at why only my left big toe (where I never had symptoms before) was moving like that. He thought my nerves were "very irritated for some reason" and he wanted me to rest and when that didn't work, ordered an epidural. I was literally scheduling the epidural when my thumb started moving back and forth. It did it all day and most of the day the next day and now comes and goes. The toe is intermittent, but frequent. Ironically, I had asked him to prescribe neurontin since it helped before my microdiskectomy surgery in '07 (on the L4-L5 right side) but he said no, he'd rather do the epidural. I'm glad I didn't get it because it could have masked these other symptoms and interfered with a diagnosis.

So I'm hoping when I do finally get an EEG, these movements will be going on, so that it will be seen if it is being caused by some kind of focal seizure.

I have been sensitive to apartame since I was a little kid. I remember my mom saying she gave me a stick of carefree gum and I literally fell over. Now, it makes me super dizzy and gives me a terrible headache if I accidently have some. Like one time they mixed up my drink at McDonalds and gave me a diet soda. 2 big gulps of it later, I realized the mistake and literally had to have someone pick me up from work, I was too dizzy and nauseous to keep working.

I also have a lot of habits that I was just reading may not be habits at all, but autoanimisms? Like I contantly run my hands over my scalp and take my pony tail in and out (when my hair is long) it drives my coworker nuts. And I chew the inside of my left cheek. Not sure if thats related or not. I don't notice I'm doing it until someone says something to me. I always say it's a nervous habit.

Our weather has been horrible here, Hurricane Irene, non-stop rain too, so lots of low pressure.

With what I've read, my big "aha" was the head movement, especially pulling down and to the left side. That was really scary and I was going to go to the ER but decided they would just tell me to followup with a neuro, so I didn't bother since I already have the appt., which is for Monday so wish me luck!

A throw in a wish that I win the lottery too, because all these copays are gonna kill my budget!!

Hi Carly,

I hope I'm wrong but I'm beginning to wonder if you aren't having complex partial sz. I've had this type of sz. for 37 yrs. I will start to see the colors flashing back and forth in my eyes and I'm totally concsious then the next thing I know I find myself in a different room and I don't remember walking to the room or anything that happened since I had the colors in my eyes. This type of sz. is a hard type to control and many times a person will get up and wander around not realizing what they have done but they will continue to talk to people, and if I am cooking or doing some type of work I will do all of this correctly I just don't remember anything. The best way to explain this type of sz. is a person who went out and had a few drinks and they don't remember anything the next morning when they wake up.
If you are having a rapid heartbeat this can very much connect to possible seizures. You might want to have your Dr. check your heart and make sure you are getting enough blood flow and oxygen in your body. I'm very glad that you didn't go on neurontin that is a dangerous drug for many people. I was on the drug for about 1 yr. and my sz. became very dangerous I would be out of it for 40 min. to 3 hrs. then I found out that the drug co. making this drug has $240 million in lawsuits because the drug has caused people to start having seizures that never had them, the drug increases seizures very bad in many cases, and 72 people took their life because the drug causes severe depression. I saw all of this on NBC DATELINE a few yrs. ago and it was one employee who worked for the drug co. who turned them in for selling this drug illegally by doing off market sales of the drug and knowing it could hurt people. Here's wishing you well and May God Bless You!

Sue

Porkette, the more I read about partials, the more confident I am that this could be whats going on and may have been since I was a child, just exacerbated now for whatever reason, stress probably.

I have read that with simple partial seizures, you remain aware and can have just physical symptoms, like the fingers and toes twitching. Also, how symptoms can arise at night or while asleep and although I haven't had problems recently, I used to frequently have "sleep paralysis" where I'd wake myself up but not be able to move or speak for a few minutes, I could only control my breathing- which my doctor said was normal. But maybe it wasn't. Something could be going on causing me to clench my teeth so badly too- as that has worsened these past few years. I have to pry my jaw open some mornings. My heart doesn't race, but sometimes feels like it's going to beat out of my chest. I get bad "adrenaline dump" in times of stress and get light headed, blurred vision and shake really bad. I hate confrontations because of these and I have to deal with the public all day and get like that when a patient yells at me.

I have been especially moody lately too, with really bad rage. I have been attributing that to stress, but who knows?

I just hope this neuro I'm seeing Monday is very attentive. I don't know that I can wait a few months to see the next guy, and I don't know that my insurance will pay for me to go to the specific epileptologist without an official diagnosis. I'm also a little ticked off that I knew it was weird to see the flashing only with certain colors (what I'm now thinking is an aura) and if this does turn out to be epilepsy, they are going to hear it from me because they should know that that is a symptom and follow up on it, not just dismiss it.

Thanks for all your help and support, without you I wouldn't have even known about photosensitivity seizures. I knew that flashing lights and patterns could cause them, but not colors. I'll keep you posted!

Hi Carly,

One thing you might want to ask the neuro to do is a sleep study on you if you haven't had one done. If you have a sleep disorder like sleep apnea for example this can cause a person to sometimes have a sz. I hope I'm wrong but it sounds like you are having sz. in your sleep that might be waking you up. If you notice a pattern where you have sz. in the morning when you first wake up or when you go to bed these are known as myoclonic sz. Also if you use a cell phone to much it can trigger sz. for some people. I know that I'm cell phone sensitive which means if a few people around me are using cell phone even if they are texting it triggers sz. for me. If you get any warning that you are having any aura or any type of sz. put a cold wash cloth on your face and neck. This will stop the neurons from firing up and lead into a sz. I was in a medical study a couple of yrs. ago and they found out that before I had any sz. my temperature would be higher than normal so I was told to put a cold washcloth on my face and neck each time before the aura started and it stopped many of my sz. You might want to call the Epilepsy Foundation of America they are located in Maryland. There phone number is 1-800-332-1000 they can send you info. on sz. and also let you know if there's any Epileptologist in you area, they do all this for free. You can also ask them questions and they can help you out. Here's wishing You Well and May God Bless You!

Sue

Sue, you are such a godsend. Thank you so much for your help. My appt. is tomorrow and we'll see what the neurologist is thinking, I'll keep you posted.

I know there are good epileptologists at the hospital I'm seeing this doctor at in Philadelphia. I'm going to Thomas Jefferson University Hospital, it's the best in the area. From the doctor I'm seeing's profile, looks like she's more of a migraine specialist, but at least she will be familiar with other doctors within the hospital if I need to see someone else.

Thanks again!

Carly

Hi Carly,

How did things go for you? I hope the Dr. found out what was going on with you. I used to go to a private school not far from Philly back in the late 1970's.
The school was in Berwyn, PA. I loved taking the train to Philly and NYC when I was there. Here's wishing You Well and May God Bless You!

Sue

"Working diagnosis" of Focal Dystonia. Could be focal epilepsy causing the dystonia, she didn't rule that out yet because I have to get an EEG to find that out.

I also have to get an MRI of C-spine to rule out anything going on there, as the EMG showed degenerative changes there. Massive headache after EMG, but what sucks is the EMG couldn't differentiate between the existing nerve damage from my spinal problems and anything new. The hand came up normal of course, so I showed her the videos I made and she was happy I made them so she could see for herself. The doctor was great, really caring and thorough. She was very concerned about the neck spasm thing and the flashing in my eyes. She did say that with my chronically high C-reactive protein, I am already in an inflammatory state, so any little damage or irritation could just cause a very extreme response. She wanted to do some more research on that and ask a couple of rheumatologists about it, get their perpective as to a. why it's so high all the time and b. if that could be causing these symptoms.

So I will be scheduling the EEG and MRI as soon as I can and keep you posted!

I lived in Philly up until 3 years ago, but in NE Philly (sort of like a suburb). Now I'm just over the Walt Whitman Bridge, sort of across the river from Center City Philly. Where do you live now Sue?

Hi Carly,

Check your private messages.

Sue