Concerns about speaking... etc...

[AndrewIrish]

I'll go ahead and repost here what I did in my introduction on The Foyer, because that is probably where this should be, but it's duel-purpose, really.

It tells you what I'm going through and there's a bit more at the end, then in my introduction, here.

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?

Also, anytime I'm under any type of stress in any kind, I... can't talk. Like, I'm in a meeting with a supervisor yesterday and while talking, I meant to say 'The upside to that arguement is...' just talking, what I said was... 'Sbed... vurgh... med... ' and I said that, in three groans, as I couldn't coax from myself the ability to speak for a moment, like I was stuck in mud.

This happens everyday in lesser degrees, but it involves me not being able to speak a word. Just... I'll say something and it doesn't come out right, or it's jibberish for a moment and then it's like, fuzzy... slow, like I'm holding breath, it's hard to explain.

Lots of different things to tie in but I'm becoming convinced something is miswired in my own brain and am wondering if anybody has any input or advice.

 

[Meetz1064]

You do need to

get in to see a neurologist. PRONTO. No matter what. But you REALLY need to go see a neuro. I can't reiterate that enough right now. From the sounds of it, you need to have a complete workup, including an EEG, using some of your triggers. There may be an MRI, too, which would be normal, and probably some blood work.

All right, there are a few links that I want you to follow..

http://www.coping-with-epilepsy.com/forums/tags/epilepsy+101.html

http://www.epilepsy.com/EPILEPSY/seizure_myoclonic

http://www.emedicine.com/NEURO/topic687.htm

Now, since you seem sure that these things that you've listed ARE your triggers, start to document them, AND EVERYTHING ELSE YOU DO (what you eat, sleeping time, TV & computer time, etc) in a journal. OK, it's a royal pain in the arse. BUT, and this is a big BUT. When you DO get into a doctor, you're going to have data to show him/her to back up what you're saying. AND, likewise, if you can find a way to videotape these occurrences for the doc, so much the better.

Also, consider your diet. Some of us E patients, like me, have some major intolerances to certain foods, and those can upset our seizure control. Cutting those foods out, and following a specific diet (I follow a modified form of the GARD diet...see the link below for diets) can help us attain that control, if not completely, a great deal more....

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

The speech problems you speak of are NOT myoclonic szs, they are of a different type. Possibly simple partial...it would depend on a few factors.


Is it possible for you to get onto your state's Medicaid/Medicare program? Or does the place that you're working at offer insurance that you can pick up? You can start at the state's website, and also ask about the insurance when you work next....

Hopefully this is of some help.......

Meetz
:rock:

 

[AndrewIrish]

Thank you...

... You are AMAZINGLY helpful, Meetz! I thank you!

In any case... the other day, I hadn't slept much and quite frankly, I'm newly turned 21 so I did have some alcohol the night before, jsut a few beers nothing major... in any case, maybe it was deprivation of sleep that caused me to completely scramble a sentance... usually everyday, like my lips will stutter and I'll stammer when I'm excited or stressed and it causes me to jumble a word here or there, just the other day... for about 15-20 seconds, I didn't know what was going on at all, which really has me scared.

Also, in front of the supervisor, I had serious trouble filling out forms and in front of her, scribbled on a piece of paper, it's pretty much what has caused me to start looking into this more.

So yea, maybe it's normal to just I don't know, not stammer... it's not ... it's like a quick-jab stutter, where I can't get the word out. That happens everyday, just the fragment of time, 15-20 seconds, where I couldn't seem to say what I was thinking, where I was talking gibberish, was what really scared me.

Having talked to my mother, I do know of a state aid program. I'll have to call tomorrow to see if they have a neurologist who could take a look at me - they go off income and I don't make terribly much now, so I may be eligible. Otherwise... I don't know what I'll do. If I don't qualify in some fashion, I'm not in a position to purchase insuracne through my work.

I have to hope I qualify in some way...

 

[Meetz1064]

*BLUSHING*

I'm glad I can help. It's all right, really. I happen to have, um, PLENTY of experience with E. I guess that's what you can call 43 years.......

Lack of sleep IS a trigger, as is alcohol. Sorry to say, but true.

And yes, I DO understand what you're saying. I have similar problems on occasion. But over the years I have trained myself to do Sudoku puzzles for fun, crossword puzzles for fun, and the like. And, it's helped.

Something to know about the EEG, though. It only measures the brain activity for that given amount of time that it is attached to your head. So, if none of your myoclonic jerks happen during that time, and there is no other activity going on inside during the EEG, nothing will be caught. And TYPICALLY, the first EEG done is less than an hour long. ***IF I WERE YOU*** I would ask to be able to try to do one or two of your triggers during the EEG to make the jerks show up specifically several times. Be it the filling out a paper, or a game book........or whatever. Give them a way to find it more accurately on the EEG since it will be such a short one to start with.

MRIs are a test that look more for physical abnormalities that would be the cause of the seizures. If a physical abnormality is found, then sometimes, not all the time, but sometimes, that physical abnormality can be removed.

At least one of the other members here lives in Ohio; I will private message him to see if he knows of any programs that might be of help to you. He may in turn PM (private message) you with that information....if that's OK. Actually now that I think about it, there's 2.......

Did your supervisor say anything to you about the mixed up words? Express concern???? Or anything else?

Take care.....

Meetz
:rock:

 

[RobinN]

Hi Andrew - Welcome to CWE
Having a rough go of it lately I hear. I am not personally familiar with the types of seizures that you are experiencing, so I will leave that up to the others to make suggestions.

My daughter has tonic clonic seizures that are related to her hormones. They started when she was 15. Perhaps yours are also trigger by your hormones.
I have found that nutritional changes have helped quite a lot. She is no longer on any pharmaceutical drugs. We are watching nutrition, supplementing for brain health, and doing neurofeedback. These have reduced her seizures from about 6 a month, down to one. We are looking at making more nutritional changes, because we might not have refined it enough for her. You can have seizures if you are sensitive to certain foods. You might not even be aware of what those food are. This of course would be a blood test that would need to be done.

I hear the call for medical reform, and a way for those without insurance to find quality help. I am not sure of the answer, but there are some people in your area on this forum, so maybe they can at least get you in contact with someone that will have good suggestions. Just don't give up.

Also, for your information, I have found the most information for my daughter from the University of Google. The conventional doctors that we have seen have not always been helpful. In fact they have not known how to help in many instances. There are alternative therapies that you can do on your own. What of the best books I have read is called Epilepsy: A New Approach. There are suggestions in that book that you can do at home to gain some control over your personal situation. It would be a good idea to check it out.

I wish you all the best.