headaches, myoclonus worsening..

[AndrewIrish]

Hey all,

Ever since my TC last week, my myoclonic jerks have been off the charts worse. Same frequency(but the frequency in which I get the 'jerks' is already severe), no the 'strength' of them is increased. Usually, I'd have a slight twitch, 'jump' forward... now I'm being nearly bowled over sometimes, my entire body contorting forward and not just my limbs. I've also been experiencing a continuous headache ever since my TC... I'd had multiple seizures last week, seizes for 10-15 minutes solid and it wrecked me like a hurricane, only now am I really recovering... but the headaches remain and the 'jerks' are worse. Anyone ever experience this? Is this a foreshadowing of things to come because out of anything in this world, I don't know want the TC's to start happening more frequently to me...

I also don't know what to do as far as meds... I'm behind in my bills with my doctor so he won't continue to see me and the last thing he prescribed was dilantin which we figured out is making my myoclonic jerks worse to begin with... so I don't think Dilantin is right for me, can't see my doctor 'cuz I'm out of money(I pay out of pocket), and don't know what to do. I contacted Phizer for a continuation of my dilantin, they're sending me an application for hardship assistance and programs... but the only drug I have prescribed for me to begin with, I think is the wrong one.

I just dont know what to do and I'm at my wits end. I'd try na appointment with a neurologist but I'm sure those costs would be astonishing... i just feel so hopeless...

 

[Nakamova]

Is there a social services agency you could call to get help with your medical costs? Can you go to an ER and get some advice there? You could try dialing 211 (it's a social services resource hotline.)

 

[Luckylukas]

I got really bad myoclonic jerks right before a tonic clonic, they worsened when I swapped increased/decreased meds. I found more sleep and not too many drinks helped prevent them. valproate and keppra works well for me.

 

[AndrewIrish]

I know for a fact, 100% sleep has a ton to do with myoclonus... I'm an insomniac by nature though so it really roughs me up, I think. Tonight for example, I'm going in 3rd shift, I'll have been up a good long while, this first day on a job, doing physical labor. on an assembly line... I'm really nervous. I'm feeling jittery right now and I know that's a bad sign.

 

[Endless]

Andrew,

There are some insurance plans out there that are very cheap. They don't pay expenses, but they do have a "negotiated" rate with doctors and other health care providers which can save you as much as half off the doctor's published rate.

Often times in advance you can also negotiate with hospitals, doctors offices, clinics to only charge you what they'd pay an insurance company, if you pay in full when services are rendered. I know that's really hard for you right now. If you ever get in a position to do this it's an option.

Depending on your income, you may qualify for your state's medicaid program. They provide insurance and pay for some health care costs, at no charge to you. Do call the 211 number to get help. Or google your state's name and "medicaid"

 

[Luckylukas]

Same sort of thing happened to me when mine was it's worst, was little unsure about going into work for while (physical labour). I didn't use any heavy machinery untill was 100% and was getting lift to work untill started getting better. Deep breathing, google yoga techniques and trying not stress too much is what I was trying to do. I'm an insomniac too so know how feel, it's a viscous cycle, I'v been takin sleeping pills for over year to ensure good night sleep and no twitches but definately not a long term treatment I'd recommend. Good luck today mate