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Please Give me Advice.... Just had a seizure

Fri, 09/06/2013 - 10:14

Hey guys,

I'm here because I seriously have no clue what to do and I just completely feel alone. Sitting here balling my eyes out out of complete fear.

I'm a 19 year old guy. I have Juvenile Myoclonic Epilepsy. I've had seizures since I was born. Ever since 2008, they slowed down tremendously. (JME is a very mild form of epilepsy).

 My last seizure was about a year ago, and judging by how badly my tongue was torn to pieces, it was a pretty serious one. Whenever I have a seizure, it's always grand mal. And it's pretty bad. I had it at about 2 am, and I fell through a wall.

Anyways, I think I just had another seizure. I woke up around 7 with mild twitches and just fell back asleep. I just woke up on the ground in a pool of blood. My body doesn't hurt, but I bit my tongue and I'm 99% sure I just had one.

I took my medication this morning, and I've been drinking water and trying to eat. Here's the thing; I pretty much live on my own. I'm seriously opposed to telling my doctor that I had another seizure. I'm terrified. He said he would take away my license if I had another one. I'm very independant. My license is my LIFELINE. I can't tell my parents or friends because they'll flip out and honestly I don't want to put my mother through that..

What should I do?  I don't know I guess I just want to talk to/hear from people. This is the absolute worst feeling in the world. I wouldn't wish it on my worst enemy.

Comments

Re: Please Give me Advice.... Just had a seizure

Submitted by mereloaded on Fri, 2013-09-06 - 10:45
I am sorry that you have experienced this. It is time to adjust your medication dosage. That cannot be done unless you tell your doctor. I understand your apprehension, but realize that your own personal safety is in jeopardy. People build tolerance to their meds over time and relapse of seizures can occur. As you know, when your seizure threshold goes down, the seizure count goes up. What have you done differenty? Drugs, alcohol, stress, partying, sickness, travel, fatigue, new exercise routine? See what your trigger was. You are Not alone. You have your parents and they need to know. My son has Jme too, you are NOT alone. This must be terrifying and as a mom of a teenage son with Jme, I urge you to open up to your parents about this. Think about how lucky you are to have been in remission for a year. Now it is time to adjust your medication, if not the chances of relapse are higher and I am sure that you don't want that experience again, especially behind the wheel. Ask mom and dad for advice, it will Be OK I promise. Best wishes!

Re: Please Give me Advice.... Just had a seizure

Submitted by idkwhat2do on Fri, 2013-09-06 - 11:07
Thanks so much for the advice. Hopefully I'll bring myself to tell them. I just can't imagine what I'd do without my license.

I haven't really done anything differently. I don't use drugs and I don't drink, at all. Stress really isn't that bad this semester, I don't go to parties, haven't been sick, haven't traveled in forever.. I have adopted a new excercise routine over the past two months (it's pretty strenuous, and it's 5 days a week) but I don't think that's it.

With my past seizures, my doctor told me it was lack of sleep that's my trigger. I used to consistently have twitches (before my medication) almost every morning that I'd stay up to 1-2am. Last night I stayed up to about 2, but I've been doing that most weekends, while getting great sleep during the week.

I guess you're right, it sounds like I need to up the dosage. Just have to bring myself to tell my parents. It's gonna be very tough to do that and I don't know if I can. But thank you.

As for your son, if he's ever worried, tell him it's gonna be alright. I carry out a perfectly normal and successful life with JME. I feel better having talked to you. JME is the mildest form of this and me and him are both very lucky. However, do not threaten about him losing his license if you want him to always tell you if something's wrong. For a teen guy, my car is one of my favorite things ever and I drive a lot.  The problem for me was my dad told me he was taking me to the doctor next time it happened and I've been terrified.

One more thing, I think I forgot to take my meds last night, now that I'm starting to get my memory back. If so then that combined with a late night was definitely the problem.

I don't know. It's just horribly terrifying. It literally feels like you have died when you wake up. One time I had a grand mal at my friend's house, the paramedics told me that I stopped breathing for 7 minutes and that I probably would not have made it if they weren't there. That, to me, that fear, is hell on earth.

Thank you so much. And please please please be very open, kind, and non-threatening to your son about his seizures. I absolutely hate this situation. If your son has any questions about JME/needs someone to talk to, I'll be glad to help.

Re: Please Give me Advice.... Just had a seizure

Submitted by mereloaded on Fri, 2013-09-06 - 13:25
Thank you for replying and for advising me about my son. He is 15 and doesn't drive yet, so he isn't missing anything yet. He is in drivers Ed in school now as part of his health class (he is 15) and I told him about the law about his condition. He has only had one seizure 6 months ago and one episode of the myoclonic jerks before that after an all nighter of video games. Sleep deprivation is also his trigger. I am glad that you figured out that you or got to take your pill and that in conjunction with a late nighter ( big no no! ) made this happen. I think is a good idea to tell mom about the twitches and go with that for now. Please also know that your dad is trying to protect you, not punish you. I definetely appreciate the advice about how to approach certain subjects with him about his condition. It is really helpful to hear about one one that can relate what he is going through because I don't know and I am trying to do my best. Thank you for sharing about your happy, productive life, I am sure my son will appreciate hearing that because he dreams about going to college and becoming an engineer. For now, please have some rest and set an alarm on your phone for your pills. Call home and talk about the twitches and see what is her best advice. Please know that the twitches sometimes can be the warning sign of a tc coming. I did nor know this, until caught me completely off guard that he was twitching but talking and walking and a second later blue and not breathing, so I know what you mean. Luckily most seizures are self resolving, but do please adjust your lifestyle and see about med adjustment because you do not want the seizure count o get worse or more prolonged. You are very lucky to snap back to normal, and o lucky to have a mom and a dad that will do anything to help you. May I suggest to take a cab today and stay in for the weekend? No one eres on being extra cautious. I know my on after having the tc he was back to his own self, but he was tired and a littler "spacey" for a few days afterward, so if you care to listen to someone else's mom, take a cab until you feel better. Do not drive today at the very least. Last, colleges have offices for students with disabilities (I know, I know) use them! They can help you turn in papers later while you recover if that is necessary. Also, you can pick classes before anyone else to avoid the early ones and give extra time if you ever need it. Having epilepsy is nothing to be ashamed of and you are doing a great job, your parents have also done a fine job, now please do the responsible thing, I know your parents taught you right and sometimes at 19 one may think that you know better, I should now as I was 19 ones and thought my parents were mean idiots. Best wishes! Feel better and keep the communication open. I will take the liberty to ask how are you feeling later.,

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