Epilepsy in Thailand

When I was a teenager, I was diagnosed with Juvenile Myoclonic Epilepsy. It’s hardly the rarest form of epilepsy, and there are far worse versions to have. In terms of epilepsy, if you have to have it, JME isn’t all that bad.

General view of JME is that it will follow one of two paths: It will go away by your early 20s, or it will continue to get worse. I’m told that it gets worse through your third decade and then evens out at around 40. Exciting thing to look forward to, really. Not many people my age itching for middle age, but I am. Because I lucked out and ended up on path number 2. Hurrah!

In the US, I was taking Lamictal and Zonegran. Here in Thailand, all I can get is my Lamictal. Again, it could be worse. More than one doctor has tried to put me on Kepra, another anti-convulsant made for general epilepsy, but it has the side-effect of causing seizures in patients with JME. Found that one out early on; I don’t take kepra.

So, with my overall feeling getting worse, and only having access to one of my two medications, I sometimes feel a little manic. Manic is the best way to put it. You’re sitting at lunch, waiting for a ride, walking around the market, and all the while you’re brain is screaming obscenities. Pissed as all hell that you’re not doing more to insulate its faulty wiring. Hard to blame it, really.

I have had over four seizures in the last six months. For someone without epilepsy, and even people with other forms of epilepsy, that might seem like a small number. It’s not. When me and my medication are in sync, I have two a year. But I’m getting worse, and it’s hard to keep up.

Some quick facts, brought to you by the WHO:

1. Roughly 50 million people in the world are epileptic. (1% of the Thai population is epileptic.)

2. 80% of epileptics live in developing regions of the world.

3. Epilepsy responds to treatment 70% of the time, but most epileptics live in parts of the world where treatment is insufficient. This can be because of lack of medication, cost of medication, and even stigma against the very idea of epilepsy.

Thailand is one of those countries that hangs on between developed and developing. A McDonalds on every corner and Reality TV Stars spread all over every magazine, but there are still people who view the very idea of Epilepsy as supernatural, and in a negative way. Sometimes epilepsy lucks out and gets itself connected to godhood, but just as (if not more) often it gets wrapped up in demonology. And that’s not good.

Now. I don’t want you to think bad thoughts about my adopted homeland. It has been great to me. I used “over four” above because 4 is the number of seizures I’ve had while at work. I’ve had a few others at home, where I was the only one affected, but in 6 months I’ve had to be sent home 4 times because I had fits while I was working. Everyone has been very kind to me; everyone has done their best to help take care of me. They have been very flexible with my health and extremely understanding. When I was younger, as an employee and as a student, I never had a fit at work or in class, but I find it difficult to believe that I would have been treated as well in the US as I have been treated in Thailand.

Not to mention that I have health insurance at my job here, and my medication is fully covered. But in this, I am still lucky. Many poor Thai epileptics cannot get medication because most anti-epileptic meds are not covered by governmental insurance. This is probably connected to the public perception of epilepsy.

This shows how epilepsy is difficult. Not just for me, but for everyone — with JME specifically — faces such problems. As an American in Thailand, some things are a bit harder. My first year here I had a drop attack (it is like fainting, and usually, for me, precedes a grand mal seizure) while walking home from work. Several nearby people stopped to sit with me and help me. My Thai was non-existent, and their English equally so. It was quite the experience. I come out of attacks confused, disoriented, and suffering from temporary memory loss (it can take me hours or days to recover my memories of what was happening before the attack). But, and this is one of the most troubling parts of MY style of epilepsy, I am very stubborn. I want to get right back to walking, if I were walking when I had an attack. I might not know why I’m walking or where I’m going, but I just want to GO. Same thing if I happened to be working at the time. No clue WHAT I was doing, but I need to get to doing.

When I was pre-20, this once led to me driving half-way to school after an attack. Six miles between my home and a donut shop. I remember none of them. I could have killed someone! Several someones! I was lucky then.

I don’t drive now.

But that hasn’t gotten rid of the stubborn attidude or my almost overwhelming desire to ignore my obvious problems (hard not to realize something is wrong with you when you gain some level of consciousness while on your back, in the dirt, surrounded by a small crowd of concerned Thai people. It’s a personality flaw I would like to fix, but I’ve not been able to talk myself into rationality post-attack. At least this last time I didn’t fight against one of my friends to try and let me get back to my office. Still feel bad about that.

Then we get to the final problem. My family. I love my family, I really do. Being that I’m young-ish (holdin’ on to my youth!), alone (meaning single, not in a relationship and not here with any partner be it friend or significant other), and female, they’ve always had some concern about my living halfway around the world. Adding epilepsy to the mix isn’t exactly heartening. Thus, I don’t tell them when I have a seizure. Ever.

There’s precedence for this, I kept most of my attacks to myself during college, too. But most of those were because of sleep deprivation (class, club, homework, competitions  work-work), and the fact that I wasn’t taking any medication. (Ha! You know what that stuff costs without insurance?! A butt load, that’s what.) Now, I’m on medication, I’m getting sleep, I’m eating more than pizza bites and sheet cake. But it’s getting worse.

It’s getting worse and Thailand is the only place where I can get full-coverage medical insurance.  If they knew, my parents would want me to come home, but I can’t afford that. So they cannot know.

Makes me feel like shit to keep it from them. Like absolute shit.

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12 thoughts on “Epilepsy in Thailand

  1. I am absolutely torn on this blog!
    My son, who is 13, was diagnosed with JME less than a year ago. He, too, wants to GO when he comes out of his seizures, and then has no memory of trying to afterwards. Right now, he has a seizure maybe every month. We are embarking on a new medicine path (starting just yesterday, actually) and hope to have both an end to the seizures as well as increased cognitive abilities. He has been on Keppra (all the way to 3000mg daily) Depakote and Dopamax – er, Topamax. We are now starting to get rid of the Topamax and are slowly adding Lamictal. He is failing most of his 8th grade classes and is lethargic and slow-reacting, so we hope to see a change before high school.
    ANYWAY…as a mother, of course I’m torn. As a mother, I read about your situation and think how frantic I would be if you were my daughter. I want to FIX things, I want to BE THERE and I want to make it all better. Mothers have an overwhelming need to protect and you can be sure anyone who tried to hurt my children would regret that action for the short time they would be conscious…It’s a terrifying thing to not be in control, to feel so helpless and to just stand by as your child goes through this. I suppose I would increase the frequency of my therapy sessions and take up meditation if it were me. On the other hand, I understand the need for independence, to be an adult and not to rely on your parents for everything. I REALLY understand not telling your parents so you can actually talk to them without hearing the stress and fear in their voices, so as not to have every conversation dominated by their worry. I can see how you want to live a normal life and freaked out parents can really make that difficult.
    Do YOU ever get scared? (I was going to ask about all kinds of scenarios, but decided that was probably counter-productive to you feeling safe and independent…)
    I, personally, don’t have epilepsy. My son has it. I am absolutely certain he doesn’t tell me his fears because he knows how afraid I am, even though I try to hide it. He isn’t stupid. I know there are things/feelings/incidents he doesn’t share with me. He’s 13 and everytime he drops something in the bathroom while showering I have to run upstairs and check on him because he had a seizure and fell in the shower one morning. I check on him multiple times a night because he’s had more than one seizure in his sleep and ended up with a fat lip after one where he was ramming his face into the wall. He’s had at least one at school and fell and hit his head. Christmas Day he had a cluster of 5 seizures in 2 hours and stopped breathing during one. I think my fear is founded, even if he doesn’t. Can I actually DO anything to help once the seizure starts? Not really. Do I still want to be there to comfort him? You betcha.
    Good luck!! And I hope you can find a happy medium with your folks so they aren’t freaked out and you don’t feel like shit!

    1. Thank you so much for this comment, and certainly send my support to your son.

      I had my first “real” seizure when I was 15. We didn’t realize that I had epilepsy before that because the drop attacks I started having when I was 11 were at times diagnosed from either blood pressure/sugar issues, drugs (this one infuriated me and my mother, I thought mom was going to punch the doctor, I was barely 11), a need for attention, etc. Tho I am so sorry this has come on him early, I’m glad that you have a handle on it when he’s this young.
      You never get USED to it, not really, but the longer you’re with it the more it becomes an everyday issue and not so traumatic.
      I was initially on Depakote, that was my first medication when I was 15, but it made me gain weight, and as a 15 year old girl… one recently diagnosed with a chronic disorder (and told by my first neurologist that it was likely to kill me soon, mom almost punched that one, too) … yeah, I switched to Lamictal fast.

      Watch the Keppra. If he’s been on it for a while, I’m sure he’s fine, but that one hit me hard. At first it was great, after a life-time of sleeping problems, suddenly I was sleeping 6-8 hours a night, no problems. Then it was 8-10. Then 10-12. Then I slept 16 hours straight through, woke up, had a restful day, and had a seizure in the evening. I don’t have evening seizures. It wasn’t an awful seizure, but it was obvious it was linked to the medication. You, of course, should consult his doctor and not take anything I say too seriously, but they might look at Keppra for his lethargy. I never had any problems with that at school (I wasn’t put on Keppra until I was 24, and then off in two months.)

      I can’t imagine how hard it is to be a parent with an epileptic child. Or to be anyone near an epileptic during a fit. I have no idea what it is like. I’ve never seen anyone have a grand mal seizure. I’m not sure how I would handle it, but as a parent you are taking care of your son, and I admire that a great deal. And I hate to make things worse, but he does need to be careful in the showers. My father pulled me out of one when I was 16, at which point I started taking baths at night. (No baths here, only showers, but I only take at night or after I’ve been awake for a long time.) I know as a teenage boy (they get all smelly really easily!), he might not be able to keep to night showers only, but — if you can — installing a hand rail or getting him one of those shower seats might not be a bad idea. Sometimes the heat just makes you dizzy and you passout and it’s the head trauma that causes the seizure, not an attack making you fall. If you can keep the dizziness and fainting at bay, he might do better.

      Yes, I do get scared. Especially when I wake up and have those jerks. Especially when I apply for jobs. Equal Opportunity Employer they may say, but if they know … That one always has me nervous. I’m not very photosensitive, but anytime there are strobe effects on TV or at work parties I worry. Never had light-induced seizures, but there’s a first time for everything. I think I may have said in the original, I can’t do maths. I would like to get my Master’s degree, but anytime I try studying for the GRE I get auras and myoclonic jerks when I practice the math portion of the test. (Basic addition, subtraction, multiplication, and division are no problem, it’s the higher algebra that gets me, and I used to love algebra.) Detail work, sometimes. I was designing a flyer for work onetime and I started to twitch when I focused on getting some of the images and words lined up correctly. Passed out and rammed my face on the corner of a file cabinet. Blacked both my eyes. Drop attack, only, no grand mal. But, still, I only told people I tripped.

      We people with epilepsy often develop a reputation for clumsiness. Useful in its own way; we can wave off some of the smaller attacks.

      There are always some crazy stories, every epileptic I know has tons of them, but in the end most of us just put up with it. Being there for him when he is young is fantastic, and it sounds like you’re doing great. As he gets older, my advice, is to make sure you know he needs to be protected, but at the same time don’t baby him. (For example, do not let him play football, but don’t keep him from going to watch away games with friends. That’s just an example, obviously you’ll parent how you will, but this was how my parents treated me growing up, and I appreciated it.) I would be surprised if your son told you every fit he had when he got older (though he might, depending on how he fairs as he grows older and what he decides to do), but that doesn’t mean he doesn’t love or trust you. Just that he’s pretty sure he has as much of a handle on things as he can. There’s only so much you can do, unless you want to live out the rest of your life in a padded room! 😀

      Good luck, to you and to him!

  2. my heart goes out to you you sound so alone. I really wish there was something to say that would make you feel better. I hope that you find something that helps. Personally I found blogging about it helps as at least I found out i wasn’t alone.

    1. I’m sorry! I tried to reply to this earlier, but for some reason it was deleted!

      Thank you so very much for your comment. I don’t feel too alone, I have my friends and family (internet) and my friends who are like family (here in Thailand) and my cat (can’t forget her!), so I’m good in that regard.

      What I tend to feel more is something akin to, but not as desperate as, hopelessness. Nothing really I can do, isn’t going to get better, most likely only going to get worse, etc etc etc. But even having said that, the word is far too severe and depressing than my general feeling. Adrift and lost sometimes, but most of the time I’m just dealing.

      Thanks again!

      1. Good to hear you are dealing, at least you are not on your own. Adrift and lost sometimes sounds like part of the human condition. take care of yourself as you obviously are! i hope the situation stabilises soon.

  3. I stumbled upon your blog whilst looking up epilepsy in Thailand. I’m an epileptic (tonic-clonic/grand-mal), in my 60’s and live elsewhere. One of the most important things I discovered when it came to medication was, ALWAYS take your first dosage before breakfast.
    And if your dosage more than 5 or 6 hours, you havent had any snacks etc in between, and you’re about to have a substanial meal, take the next dosage beforehand.
    I discovered the hard way in that a substantial meal before dosage can trigger fits due to the sudden building-up of blood-sugar putting a load on the brain. A medical expert may explain this more properly.
    I’m on Dilantin & Lamictal.

    1. That’s interesting. I’ve never had seizures around dinner time. Mine have all been within a few hours of waking OR if I’ve been awake for far too long.

  4. Wicked post, I’m 27 and have suffered from epilesy since I was a 9. While reading parts of your post feels as though I have written it myself.
    However I would like a bit of advice as i have booked a trip to Thailand and am on two types of medication. Would you know the rules and regs of the Thai border control.

    1. I’ve never had any problems going back and forth carrying medication. I’ve gone to visit America twice since I’ve lived here both for a month at a time, carrying a month’s worth of Lamictal. Because my hospital only carries 50mg tabs, that is 6 boxes of the pill -_- Soooo.

      The other trips were all just a few days at a time, and those are overland and just for a few days. I’ve – to be honest- never looked at official law on the issue because when I moved I was off meds because I was out of insurance (unemployed) in the US.

      If you’re at all uncertain, I would suggest grabbing a note from your doctor.

  5. Haven’t read the other comments, so I might be overlapping, but FYI coming out of a seizure crazy stubborn is not a personality trait. Don’t feel too guilty about it. I’ve been like that many times with my wife around (luckily she is very understanding and helpful) and I’ve seen it happen with a friend and co-worker. This goes for ‘drops’ as well as petit mals (those ones that can be really troubling without leading to total blackouts or convulsions). I’ve found I can still work on it, so don’t give up, but don’t beat yourself up over it.

    1. I have seen some people take to help more readily than others, which I tend to attribute to personality of people being more willing to do so in every day situations, but I also see what you mean! Thank you very much for your comment. Sorry for the long delay, I’ve had some arm breaking drama and have been away from the blog for a bit.

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