Need some help...

[AndrewIrish]

Hey all,

I've been searching the internet for several years about something that's happened to me since I was 15 or so. I'm 21 now... it's something that's been more of a 'nuisance' then anything, yet I really need some people with good knowledge, for advice.

Let em give you a rundown on what I go through.

In layman's terms, because I don't know the medical terms and have never been diagnosed, because I have never had insurance or ability to get diagnosed, I believe I have a Reflex Epilepsy triggered by complex thinking, sequential ordering and general stress.

These are accompanied by jerks of my shoulder forward, or my arm jerking outward violently... it feels like I get a 1-second 'hiccup' in my brain and my body flails around for a second. And during times when I'm doing certain things, this continues happening... like something is misfiring, I keep 'hicuping' and jerking, usually my arm but sometimes my leg or so.

My triggers: (General because they seem to happen to anything, the myoclonic jerks have happened many times in the last 5 years, everyday.)

- Chess (Perfext example. Can not play it. Can not. Within a minute of looking at the board, everytime I try to think, I have a myoclonic jerk.)

- Paper forms (I have worked in a call center for several years now... everyday, I have to suffer through these 'hiccups' and... it's hard. A lot of the time, my arm will jerk and I scribble on a page and have to redo it. It's hard on me, my head hurts afterwards, I feel jittery... it's just... I can't fill out a single paper form with a pencil - I write anything more then my name, the jerks come. They come everyday, again and again and again... )

- Games (Video games, puzzles... anything where I have to think about the future and then try to form a mental strategy, I begin jerking. More violently then anything else I do though, with video games.)

- Being rushed, stressed, etc.... (Anytime I am in any type of rush or under stress, I begin to jerk. Not so much being yelled at or what have you, but when I self impose a goal for myself to meet, when I 'try hard' to do it, the jerks come... they sidetrack me, make it impossible me for to do things...)

I'm not having a petit-mal or grand-mal seizure or anything quite as dramatic, but over the years, this has become a hindrance to my daily life, I can't take anymore. I need help but without insurance, I don't know of anyway to get it. Usually I can avoid some of my 'triggers' but how do I combat triggers that literally prevent me from my complex thinking? I love strategy, I love formulating plans and focusing on an immediate goal - I can't do it anymore, though. The myoclonic jerks are violent, they're distracting to others and make me feel... wrong, somehow. Like I'm sick or something...

I mean, best self-diagnosis I can give myself is Reflex Epilepsy triggered by complex, sequential thinking with myoclonic jerks.

All I ever have though, are myoclonic jerks. Would that still be considered epilepsy? I'm sorry if I'm a bit of an 'outcast' here, I'm just looking for some help from somebody, I would appreciate what anyone thinks...

Also, because this has been an everyday occurence since I was 15, I'm 21 now... can constant, daily myoclonic 'jerking episodes' I'd call it, have any permanent damage to me or my brain? Am I hurting myself, somehow?

Again out in the dark, searching for a friendly hand...

 

[Meetz1064]

Hi there,

and welcome to CWE! You've found a WONDERFUL place to be! Mr B (Bernard) our host here, has made us an AWESOME home. You are NOT an outcast here, OK? You are a WELCOME GUEST.

Buckeye should be around soon with coffee, so sit down, relax, and we'll see if we can get you pointed in the right direction. There's a Library for research, a Kitchen to talk about things in, and a Padded Room to vent in , amongst other things. Oh, and Speber's Auditorium for your listening pleasure.

YOU ARE NOT ALONE....And by the way reflex E is not that rare. There's at least one member here who has it that I'm aware of.

I have addressed your concerns to this post in the other post you made in the Kitchen...since they are almost the same, and this is more of the "introduction area." You will find several links in the post there.

By the way, I like your screen name. My youngest son's name is Andrew, as is my future son-in-law's...........

Take care,

Meetz
:rock:

 

[Ann T.]

Welcome, Andrew!
You've found a really neat-o spot to come to because everyone here does their veryt best to help each other. C'mon in & get comfy. My name is Ann. Since you've had these episodes since you were 15, have you seen your family doctor or visited your county's public health dept (usually they have a free or low cost medical clinic) to get an official diagnosis? You sound very talented & please, the only thing "wrong" is that you need a correct diagnosis. I'll leave a lamp on for you, so please take care & keep in touch. ~Ann T.

 

[AndrewIrish]

Thanks guys!

I really appreciate the links and what have you.

We do have a low-cost Hospital aid in Ohio, but it's a very... lax program I know of, it's worth checking into though... my mother uses it to get her diabetic supplies and treatment for various diabetic-related illnesses.

Great advice guys, thank you!

 

[BuckeyeFan]

Welcome to CWE Andrew

:cheers:

Hi Andrew. You seem to be doing a great job of researching your problem. I am not sure where you are located, but in Ohio, I would start with the your county health department. They are usually pretty good with financial assistance.

I would also visit

http://www.epilepsyfoundation.org/

At the top left of the home page, you can enter your zip code and find the closest chapter. They have them in Columbus, Cincinnati, Dayton and Southern Michigan if you are near Toledo.

They may be able to help you get into a doctor.

Many people with Epilepsy (yes, you qualify for our group) can be helped with minimal medication or some other therapy. Try to get some help and don't resign yourself to epilepsy. I hope you find useful info here as well.

Just because you don't have grand mal (tonic/clonic) seizures does not mean you don't deserve help. I have had E for 27 years with tonic/clonics most of the time. However, mine were much more spaced out and did not interfere with my daily life as much as yours. Just wanted you to understand that the frequency of yours are as much of a concern as the severity.

:cheers:

:rock:

 

[Bernard]

Hi Andrew, welcome to the forum. :hello:

... I mean, best self-diagnosis I can give myself is Reflex Epilepsy triggered by complex, sequential thinking with myoclonic jerks.

You mean like this? http://www.coping-with-epilepsy.com/forums/f22/mah-jong-epilepsy-new-reflex-epilepsy-1061/

All I ever have though, are myoclonic jerks. Would that still be considered epilepsy?

If they are indeed myoclonic jerks, then yes, it would be epilepsy as they are seizures.

Also, because this has been an everyday occurence since I was 15, I'm 21 now... can constant, daily myoclonic 'jerking episodes' I'd call it, have any permanent damage to me or my brain? Am I hurting myself, somehow?

Possibly. Uncontrolled seizures may lead to kindling - a process whereby the pathways in the brain that are used at the onset of seizures strengthen (ie. the brain learns/trains itself to seize) making seizure activity become more progressive/frequent/easier.

It sounds to me like you need to see a neurologist and get an EEG test where you play chess and experience one of your jerks to see if there is epileptiform activity happening in the brain. :twocents:

 

[skillefer]

Hi Andrew! Welcome to CWE. As you can see, a nice group of people. So feel free to ask questions. Lots of people go years without being "officially" diagnosed. So don't feel like you're alone. As for the jerks you describe, if they are myclonic, then yes, they're seizures. And if you continue to have them, they may or may not get worse. The kindling effect that Bernard mentioned. You might want to start keeping a journal....write down everything you eat and drink and how much, as well as how much sleep you get every night, any stress you're under, and what happens right before you jerk....the antecedent. Then you might notice a pattern. At least you'll be walking into the neurologist office with some info that they can use. You might also have the neuro check to see if you're photosensitive. Photosensitivity is not just triggered by flashing lights, it can also be triggered by patterns. Like chessboards.

 

[AndrewIrish]

Hey all: an update

Well, some bad news I guess.

Two days ago I had my first 'Grand Mal' seizure.

Preceding it, I had been reading quietly, having my myoclonic jerks, and they wouldn't stop. Eventually I got a headache, got up, popped two Aleve, and then tried to relax and resume reading.

However, then what happened was one of the most truly frightening things I've ever experienced. My mouth slammed down, I couldn't open it, I couldn't open my own mouth, I was terrified... next thing I know I'm in an ambulance, people asking me if I know my name, date of birth... I didn't know the date, my name well, I got my date of birth though... I spent a few hours in the hospital, got a CT scan, bloodwork, what have you... came back clean. The ER doctor put me in for a referral in a couple of weeks to a local nerologist... any advice?

Also, for time being, I'm on a medication that's generic of Dilantin, I think it is. Anyone know about these pills?

Also, it's strange... as is evidenced it's been 6 months since I posted here, about my myoclonic jerks... with those continuing, and now this 'Grand Mal' I'm frightened. If this isn't Epilepsy, is it a brain tumor? I know now, something truly isn't right with me. I'm very frightened.

 

[Meetz1064]

Advice? Sure

Tell him/her EVERYTHING that you've told us here. Write EVERYTHING down that you possibly can think of (type it if necessary) Keep a journal --yeah, it's a pain in the arse--to prove your point. Even print out this whole thread.

You have NOTHING to be ashamed of Andrew. Nothing. And Tonic Clonics (Grand Mals) SUCK. Trust me, I know. Those are what I generally have....tho usually in my sleep.

Make sure you COMMUNICATE everything, be it in written form or oral. But get it through to the doc. Be honest. If you're scared, tell them.

Hopefully, you didn't bite through your tongue. That part sucks when you do that.

Also. Make sure that you get AT LEAST a 24 hour EEG and an MRI. Preferably a longer EEG, but AT LEAST a 24 hour. That way they can see what's going on in your head for a full wake and sleep cycle. The MRI will show any physical abnormalities that may be causing your problems.

Feel free to stick around and ask questions, Andrew. We'll be here for ya.

Meetz
:rock:

 

[AndrewIrish]

Thank you very much. I bit the crud out of my tongue, bled a little bit, and it hurts like crazy even now.

I hope I never in my life have another Tonic Clonic, but if I did, any tips on something to have or DO, to prevent myself biting my tongue?

Also I'll probably take that advice, Meetz. 24 Hour EEG and an MRI.

You know of Dilantin? I'm taking it now, but the ER doctor only gave me a 10 day supply script and I won't see the Neurologist for 3 weeks? Is it going to be safe for me to go off of it?

 

[Meetz1064]

Nope

That's something that's gonna happen, and it sucks. Sorry, dude.

You CAN use a salt water rinse for it to help it heal faster, OR a peroxide rinse....... a capful of peroxide in a glass of warm water.

I usually bite through both sides of my tongue all the way, so I understand the feeling. It bites the big one (pun intended).

It will take a while to heal, too.

HOWEVER, IF SOMEONE IS NEARBY AND YOU HAVE ANOTHER T/C:

have them turn you on your side, loosen your clothes, and turn your head to the side.

DO NOT STICK ANYTHING INTO A SEIZING PERSON'S MOUTH. No ifs, ands, or buts about that one.

IF the seizure lasts more than 5 minutes, then they need to call 911.

 

[AndrewIrish]

Is it normal for me to have a few seconds of memory right before it started? Of remembering my mouth slamming shut and not being able to open it? I mean, literally that's like 3 seconds at the most before I lose memory of what happens, but... I don't know, it's wierd. I'd been told if I had bit my tongue any further, I'd have needed stitches, or have it put back on, so it went pretty far into my tongue. I'm going to try the saltwater thing though, see f that speeds the haling up. I've also been reading about people urinating during these, but I actually had mine immediately after a drug test for a new job i'm starting.

On that, maybe you know... if I'm actually diagnosed with Epilepsy, do they take my license? I absolutel need to drive as my ne wjob requires I drive 85% of my day?

 

[flinnigan]

The driving part sucks too. Every state has it's own requirements. In some Doctors have to report you some do not. Even if its voluntary the Docs stress how important it is for you not to drive. The last time I drove was when I learned that I was having auras. I thought that they would give me enough of a warning to let me pull over. It did but as I was pulling over I lost consciousness long enough , just seconds and only mental not physical, to hit a mailbox. It could have been a child. My 9 year old was in the car and it scared the hell out of her. For me its been the hardest part but I stick to it. Its 6 months seizure free in Michigan and you have to start counting over every time you seize.

 

[RobinN]

Hi Andrew,
My daughter has mostly only had tonic clonic seizures. She loses her memory, but hasn't bit her tongue in a long time. She also doesn't urinate, which I am extremely grateful.
Hers appears to be associated with hypoglycemia. No one saw the signs except for me. I had to demand that she be tested further.

Were you on medication for the myoclonic jerks? Might you place a connection to the TC to the medication? My daughter had more seizures when on meds and different types on different meds. It changes brain function dramatically.

Also, you might really look at your diet. If you were fine for 15 yrs, perhaps changes in your nutritional choices has caused neurological issues. Something to consider. There is good info out that this is a common occurrance.

 

[skillefer]

From what you said about the chessboard and games...I'm betting you are photosensitive to some degree. If so, you might want to invest in blue polarized lenses for glasses. And make sure that actual lens is blue and not just tinted. The blue lenses have helped cut people's seizures by 50% in some cases....worth looking into at least. Seizures can get worse if left untreated...so definitely see the doc. You'll most likely lose your license for a little bit, at least till you get the meds regulated. Some states are mandatory report states...that means that if you tell the doc that you have seizures, lose conciousness while driving, etc..then the doc, medics, law enforcement must report you to DMV...in which case you'll lose your license for a set period of time. The time varies by state. Other states allow the doc or the patient to decide if the license should be taken. Luckily most states are NOT mandatory report. so make sure you work with your doctor. I know how the tongue feels...I have tonic clonics (grand mals) and I always seem to bite my tongue. could be worse, you could lose bowel control or bladder control. I've had that happen once or twice. Talk about embarrassing... As for dilantin, I take the name brand, and it works great for me. The only really noticeable thing to me is that I sometimes trip over my tongue when speaking. but that's about it...But everyone reacts to meds differently. so make sure to tell your doc immediately if you notice anything odd. Especially if you get a rash. It may take your doc a couple of tries to get the meds right...And, I hate to say this...but, you might find that after several years, you end up having to change meds again. It's not unusual...but docs rarely mention that fact. Feel free to ask questions, chime in, or just vent. And welcome to CWE.

 

[Meetz1064]

I didn't

notice the part about the Dilantin script until just now.

Since he only gave you about a 10 day supply, get hold of your primary care physician, and ask him to give you another couple of weeks to tide you over in between. Explain what's going on, and they should be willing to help you...