Hello Im 32 and I think I have some form of epilepsy

[Abynorml]

Hi my name is Matt

Im 32 in May, I have an older sister with some form of mild epilepsy shes able to control it with out meds. Anyways for years Ive had essential tremors and mild myoclonus, my Nuerologist didnt seem to think much of the myoclonus, its not that bad it doesnt bother me that much though I think its gotten worse over time, every once in a while I drop something cause my hand jerks. They did show up on a EEG but I was clear of any major seizures... Its all kinda confusing to me because I switched Dr's last year, my original Neurologist said that the klonopin i was on was probably causing my myoclonic type seizures evan though he put me on klonopin knowing I had complained about myoclonic jerks, thats why I switched.

Fast forward a year, Ive been doing Ok my tremors and jerks are tolerable, however Ive been under a heck of alot of stress and not getting enough sleep, I average 5 hours a night usually and I eat one or two meals a day, though I do eat healthy meals, I had been trying a new supplement that week 5-htp Im trying to find something more natural than the Topamax and Primidone Im on for my Tremors, I think there affecting my libido, I know very very stupid to do it without asking a DR first believe me Ive learned the hard way...

Anyway Saturday night I was feeling kind of weird I had a glass of wine took some melatonin I watched a little tv I started to feel like I felt back in college before I was about to have an acid trip(I havent done that in over 10 years) my teeth and jaw felt tight and I felt a bit sick? I decided to go to bed, I layed down on my side and kinda stared at my laptop screensaver as I was trying to drift of to to bed, when I started to feel my self jerking and the bed shaking. At first it was interesting, then I could feel my eyes roll extemely fast, faster than I could probably move them voluntarily and I was out...
I woke a little later to wet pajamas and completely exhausted. Did my best to clean up and felt miserable the whole next day. Ofcourse i quit the 5 htp but Im not sure thats what caused it, may have had something to do with it but sevaral days later I nearly did it again this time with my eyes closed once again it was the light from the lap top, and ofcourse I hadn't gotten any sleep, when I close my eyes like that I see brilliant geometric patterns spinning in a 3-d space and its like some one hits overdrive or top speed and I can feel my whole body go electric, I dont know if thats the best discription.

I made and appointment to see my Neurologist but he cant see me till Feb 3 and I may have to take work out of town that week, I went to a general MD last friday and he was pretty sure I had a Grand Mal seizure, and threatened to turn me into the health board of nevada if I didnt promise to not drive, thing is I live in a small town with no mass transit and I commute an hour and a half to work most days, so this could really hurt. Im stressed as heck about this, which is only making me shake and jerk more.

I also think that in the past I may have had Atonic seizures, once in a blue moon Id get an uneasy feeling and plop my legs would go dead like someone shut off the power, it would last maybe 15 or 30 seconds tops and Id be a little weak kneed and freaked out, happend about 4 times maybe in 3 years hasnt happened since 2004, I told a DR once and they didnt seem to think much of it, I hate it when they make me feel like Im some kind of hypochondriac makes me not want to say anything.

So thats me stressed out maybe about nothing, or maybe Im screwed and will be losing my drivers license. Not sure If Im gonna take the Job the week of my Neurologist appointment gonna keep calling to see if I can get in any earlier, I need the work, however Im not sure If Im playing with fire or not, Im worried If I do have another seizure and Im at work or in public or god forbid driving, and worse thing is I work on call and work awful hours, if this is epilepsy Im gonna have to completely change my way of living, an average work day for me can be getting up at 630 am driving an hour and a half to Las Vegas working sometimes very hard for anywhere from 8 to 16 hours driving home and repeating the same thing the next day, Ive been able to avoid this for the most part for the last couple years but now Im back to having to do this kind of gruelish schedule. I own my Home and I cant sell it in this market because of all the darn repo's.

Sorry I didnt mean to vent... I get carried a way these days, Anyways sorry for the poor introduction its kind of rushed, I wish I could express myself better, but I dont seem to be good at that these days.

Matt

 

[epileric]

Welcome to CWE

Hey Matt. Sorry to hear how stressful a time you're going through. Stress does increase the probability of a seizure so try not to get overwhelmed. I can feel when stress is likely to cause a seizure & that's when I become aware that my breathing isn't too shallow or fast. I find that really helps.

Something else you might be able to do to help your neurologist is to keep track each day of what you eat, when you get up & go to sleep, when you move your bowels & when you have seizures. Hopefully this will help to find what might trigger your seizures.

As for venting........ no reason to apologise, we even have a padded room just to do that in.

Meanwhile, Take your time, look around & get comfortable.

 

[RobinN]

Hey Matt - Welcome to CWE
I hope you find some good ideas here, to help you make life a bit easier for yourself.

 

[drarvindr]

Welcome to the forum :hello: .
I'm sure you'll meet great people here who will help you deal with your current problems.

 

[LivingFruity]

Hey Matt :hello: Welcome to CWE!

Lack of sleep, stress, and poor nutrition are three major triggers for seizures. Going off medication suddenly, without weaning yourself off can trigger them as well. I'm sure you already know this.

Try to get as much sleep as possible (at least 7 hours a night) and find a way to relieve some of the stress right now. You're already off the medication, so take the opportunity to research other more natural alternatives while you are waiting for your appointment to arrive. You have a great opportunity at your fingertips. There are many of us who successfully cope with seizures using natural, alternative methods.

Keep a journal for a couple of weeks to see if there may be a link in what's triggering the seizures. I'd also recommend reading about diet and nutrition. We're able to control my son's seizures through diet.

You've come to the right place. There's a lot of information and support to be found at CWE

 

[skillefer]

Hi Matt! Welcome to CWE. Ok, i hope you listen to LF. She knows what she's saying. As for the use of 5-htp, I've never heard of that, but I'm not that into the alternative therapies research.. however, if you just quit taking your meds and switched to the 5-htp, that could be a major cause of the seizure you had recently.. The sleep deprivation and poor eating didn't help I'm sure. As LF said, you need to be getting 7 hours nightly.. also, eating just 2 meals a day, no matter how healthy they are, is not a good idea. You need to take the time out to eat. Not only is it better for you physically, but also, it gives you a chance to unwind and destress a bit. Also, while you wait for the doc, if you're drinking any caffeine, you might want to stop. Make sure your doc knows what happened and why you think you had a breakthrough seizure. If it's just a breakthrough, he may not order your license pulled. He'll chew you out though. But I think we're all used to a little scolding.

 

[Abynorml]

Sorry I didnt express myself well Im still on topamax and primidone both 50mg twice a day low doses for my essential tremors, which is something that is somewhat like epilepsy a misfiring of the brain that causes my hands to shake all the time, ofcourse its nowhere near as bad as epilepsy just a minor inconveniance and embarassment, makes it hard to type, write, anything that requires fine motor skills, and makes people think Im nervous or on drugs, which can cause me to me anxious in some social sitiuations.

My myoclonic jerks maybe "essential myoclonus" which I think my original Nuerologist thought they were since my first EEG came back clear of any signs of Epilepsy last year, though it did show signs of seizures, I guess that makes sense after reading more on EEG's.

My sister has had Epilepsy for sometime Im not sure what type shes older that me and wasnt diagnosed till she was about... hmm my age, she has had Grand Mal or Tonic Clonic seizures but has been seizure free by lifestyle and diet.

Ive been feeling better, sudden Flashes of light still make me jerk a bit but then Im ok, been getting lots of sleep I go in for a 12 fasted blood test in a little bit, I need a Dr Pepper. Its weird though I wonder if my jerks were allways this bad and I just never noticed, laying in bed writing this my left leg has jerked lightly 3 times. I notice I jerk more when I pay attention or focus on my body, maybe?

In some ways its a relief Im still jerking around, I was afraid maybe it was the wine, or once in a while I still smoke a certain herb to relax, I was afraid that was causing this, it doesnt seem to haven't done that in a week. I know I should grow up, its really my one last vice. I Dont realy drink anymore doesnt mix with the meds, but I was drinking a small glass of wine before bed on the nights that I had the seizures, so now thats out.

Anyways thanks for the warm welcome

Matt

 

[Dutch mom]

Welcome here Matt, you've found the right place to be, this is a real nice group of people.

As a mom of a kid with an epilepsy syndrome I do know many other kids with E. and their parents.
Several of these kids suffer from severe tremor and this is often combined with myclonic jerks. It's a difficult combination to deal with because people see it and have their thougths about it. Myclonic seizures tend to be difficult to treat. But mention the atonics again to your doctor, they might be controlled with a med change.

Having a sister with E. makes your chance having E. bigger. Might not be a good idea to smoke drugs and drink alcohol because both can trigger and increase epilepsy. Sorry, didn't mean to preach on you :angel: since you've realized that yourself.

Hope you'll get comfortable here.

 

[RobinN]

Any chance that there could be a family history of celiac?

...just wondering

 

[skillefer]

Hmm....maybe you should have your blood levels tested. Make sure that your meds are still in the therapeutic range. You could be metabolising the med faster then average, or you could be eating or drinking something that is stopping your body from matabolising the med properly. For example, my med is protein binding. In other words, I need to make sure that I get enough protein in my diet.

 

[Abynorml]

Had some bloodwork ran today, and was lucky enough to reshedule my neurologist appointment to tomorrow morning. Hopefully this is just anxiety and stress and lack of sleep and the stupidity of mixing supplements with meds, but I think a part of me allready knows it isnt and that this isnt really the first time that something like this has happened. So Im on the road to find out wht the heck is going on with my head. Have an early morning best not to think about this to much. Matt

 

[Bernard]

Hi Matt, welcome to the forum. :hello:

... I woke a little later to wet pajamas and completely exhausted. ...

Sounds like you had a tonic clonic.

... I went to a general MD last friday and he was pretty sure I had a Grand Mal seizure...

Yep.

... if this is epilepsy Im gonna have to completely change my way of living ...

Considering that you have a history of seizure activity, and your activity has gotten more severe lately while running on a lack of sleep (one of the most critical factors for seizure control IMO), I'd say, yeah, you need to consider changing your routine. Get more sleep. :twocents:

 

[brain]

I must also add on to what Bernard has also posted,
that alcohol seems to also be a trigger with seizures
especially with those who are on medication, and
since you mentioned you are on Klonopin; Alcohol
reduces the effect of medications and raises the
seizure threshold. I strongly recommend that you have
a discussion with your Doctor in regards to alcohol
and medication if you are allowed to have such,
because some medications, the two and two will
clash and reduce the effectiveness of the medications
and therefore puts yourself at a risk.

This is one thing to keep in mind on your next trip
to the Doctor's office - in which you might want to
jot this down on your notes!

 

[Abynorml]

Well I saw my neurologist today, I was late to the appointment, and for some god awful reason he decided to send two beautiful female students to the initial interview, which really kind of made me uncomfortable, they were totally professional but I had a hard time talking about things like wetting the bed from the possible seizure I had to the possibility that the topamax is making me somewhat impotent.

When I did get to talk to the Dr. he didn't really think that I had had a seizure, but wanted to play it safe and keep me on the topamax till we ran a sleep deprived EEG. I was kind of pissed off at this point so I left out alot of stuff like the past possible drop attacks, all he seems to care about is the essential tremors, I dont think he believes I have myoclonus either.

I wanted to yell at him after I left, just what the hell do you think did happen to me that night? Im happy to be able to keep my license awhile longer but, Im still left with no real answer as to what the hell happened to me. And the Doctor seems to paint a dark future for me as to any other possible medicine alternative to the topamax, all he he said he could do is raise the primidone dosage at night. Personaly Id rather be able to have a healthy sex life and shake like crazy then not shake all the time I guess, I don't know, guess I could try viagra but god do I really need more drugs?

And what about the frigging myoclonus what the hell do I have to do to get some one to believe me? Should I stay up for a few days before the next EEG? Im feel like he thinks Im a hypochondriac, or just someone with way to much anxiety, and sometimes I worry what if hes right. But damn it I know what happened the other night was real, and I know the jerks are real, other people see them its friggin embarassing to drop stuff or to share a tender moment and to be jerking around or twitching and to have your sweety ask why are you so jumpy?

I dont know, is my neurologist an idiot? Am I losing my mind? I guess Ill find out on the 17 of feb unless something happens to me before then. I guess I should be hopeful that this could all be good? Ill be working a little bit of a crazy schedule between now and then but Ill try to take it easy when I can and I have started a journal. Don't know what else to do.

Matt

 

[joan]

Hi and welcome *

Sometimes. most times, it takes more than one Dr to find one you are comfortable with. My daughter has myoclonics as well and lamictal didnt help them at all. She is being weaned onto Keppra. Im told that "should" take care of the myoclonics. Ill let you know. I understand your frustration. Hang in there

Also if you can, record the myoclonics to show the Dr. We used our cell phone. Thats what I did.

joan*

 

[Abynorml]

well after reading more on psychogenic seizures Im guessing that maybe thats what the Doctor thought I had.

I do understand that I go in there complaining of Essential Tremors and hes never seen me shake that badly, at least not as bad as maybe some of his other patients, he always tells me things like he doesn't think he can do anything to improve my condition anymore than it is, and for the most part its very livable, except I often repair fine electronic's and my hands are a hindrance to the process sometimes and in the 10 years Ive been diagnosed Ive seen it get worse its a degenerative disorder.

as for the seizure activity I seem to be doing fine, I guess, I felt like my foot was moving by itself last night, not a jerk but a long contraction? I ate plenty, drank plenty of fluids, went on a long walk yesterday but thats not unusual, did go to sleep late was up late talking to a girl, it went away rather quickly...

The thing Im wondering, if this is psychogenic, from what Ive been reading most of the time psychogenic disorders happen in front of people, all the things I usually experience, dont have an audience because I live alone, and the big one I experienced was in bed and I was relaxed, not thinking about anything stressful at the time, so Im perplexed Im willing to except that it could be a psuedo disorder brought by to much stress and lack of sleep but some of the stuff doesnt seem to fit.

Matt