I think my GF might have Juvenile Myoclonic Epilepsy.

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ioe

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I think my GF of 6 years might have Juvenile Myoclonic Epilepsy, but she absolutely refuses to go to the doctor.. I've done all of the research that I can do and I need some advice.



Her Symptoms

She gets these "jerk" episodes, where her body will be completely still, and then all of a sudden start uncontrollably jerking. Not so much that she falls.. but it's enough to make her knock over a glass or drop whatever she's holding. It's almost eerie they way she just becomes completely motionless. The jerking isn't violent, and it only lasts a second or two. It's kind of hard to explain... I've seen my uncle have seizures before, and it doesn't look anything like that. She's had basic blood work taken at work several times for her insurance, and nothing abnormal has ever been mentioned.

She gets these jerks usually every morning.. and they occur at other times is she's: Rushed, Very Anxious, Overly-excited, Sleep deprived/tired, really stressed, nervous, or really upset.



Some background

She's now 25, but this started back when she was in her mid-teens. She's suffered from a lot of anxiety, and she used to be anorexic.. until she started passing out... and then she stopped, in-fear of being hospitalized. (Which she should have been, but her parents are ridiculous) I don't know if that is relevant or not, but I figure that it wouldn't hurt. She also gets severe headaches and nausea if she doesn't eat every 4 hours or so... I think that might be from her anorexic days though.

I have pleaded with her over and over about seeing a doctor about this, but she always makes excuses and dismisses it. Every time I bring it up it either turns into an argument or I get ignored. She hasn't had any problem with going to any other doctor.. dentist, Gynecologist, etc.. She even goes to the urgent care when she gets sick.. I think she might just be scared.. and it doesn't help that her mother refuses to go to the doctor as well.. and I even tried to get her parents support, and they just say: "Oh, she's just tired, that's all" and it's complete bull shit.

I am lost and I don't know what to do. I've been researching when she isn't around and I think I've found what she has, but I am not a doctor and I honestly have no clue. I've shown her this and it does nothing.

My biggest fear is that it's going to progress into something worse, or that she'll have an episode while she's driving.

Please, any information on this would be greatly appreciated.

I apologize for my shitty sentence structure/grammar, I don't have time to review this for she's sitting on the couch behind me. She'd probably leave me for posting this on the internet.
 
Well as someone with JME, it sounds like she is having classic myoclonus jerks. The good news is that not everyone with JME develops grand mal or "tonic clonic" seizures. I did but as far as percentages go I'm not sure. Best way shell be diagnosed is by a sleep deprived EEG and family history. A doctor would likely start her on an AED drug such as Topirimate and then possibly onto Depakote which I've read is the best drug for JME and the drug I'm currently on. I will let you know if she has a large burst of jerks one right after the other make her stop whatever she is doing because that's a classic warning sign of an immediatee and pending grand map seizure. Also forgive my grammar I typed this on my iPhone.
 
Well as someone with JME, it sounds like she is having classic myoclonus jerks. The good news is that not everyone with JME develops grand mal or "tonic clonic" seizures. I did but as far as percentages go I'm not sure. Best way shell be diagnosed is by a sleep deprived EEG and family history. A doctor would likely start her on an AED drug such as Topirimate and then possibly onto Depakote which I've read is the best drug for JME and the drug I'm currently on. I will let you know if she has a large burst of jerks one right after the other make her stop whatever she is doing because that's a classic warning sign of an immediatee and pending grand map seizure. Also forgive my grammar I typed this on my iPhone.

Thank you very much for your response and advice. The next step is to get her to a doctor.. again I really appreciate it.
 
Hi ioe, welcome to CWE!

Good for you for trying to get your GF some help. I agree with Andrew that her symptoms sound like myoclonic epilepsy. It's possible that her anorexia in her teen years may have been a factor -- electrolyte imbalances and low blood sugar can be seizure triggers. It sounds like she still suffers from low blood sugar, so there may be some kind of nutrient deficiency or metabolic issue that is continuing to play a role.

It's especially important for her to see a neurologist if her symptoms seem to be progressing -- increasing in frequency or duration, or changing in terms of what happens. You don't want to the brain to get in the habit of seizing, and for the seizures to get more serious or disruptive. Even if she won't see a neurologist, you can help her by getting her to be proactive about her general health. That means getting plenty of sleep, and eating and drinking wisely and in moderation. If you pay close attention you may help her identify any secondary triggers that are provoking her seizures. Fatigue is the #1 trigger, but it could also be a nutritional deficiency (magnesium, calcium, etc.) or dietary sensitivity (caffeine, MSG, aspartame, gluten, etc.), low blood sugar, dehydration, or even an environmental trigger like flashing or fluorescent lights. She might benefit from a magnesium supplement in particular, since that nutrient plays a role in relaxing muscle tension.

Best,
Nakamova
 
Hi Joe,

The background you gave sounds nearly identical to my own, except I don't have a history of anorexia/anxiety. I am a 27 year old female, diagnosed with juvenile myoclonic epilepsy in my early teens. It started in my childhood just with the classic myoclonic jerks, usually occuring in the mornings, as you are seeing with your girlfriend. I started having grand mal seizures (although infrequently) during my teen years and have needed to be medicated ever since. So I would say your concerns are valid. Its probably unlikely that she will suffer her first grand mal seizure while operating a vehicle, but its not out of the realm of possibility. Who knows, maybe her disease won't even progress past myoclonic jerks and medication may not even be necessary. But a diagnosis and medical consultion would definitely help! Feel free to have your girlfriend email me if she wants to chat privately. I would be happy to answer any and all questions

Good luck!

Val
 
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Thank you guys so much.

Yes, Caffeine is one of her triggers it seems, she stopped drinking beverages with caffeine and it's helped a bit. Luckily she doesn't drink alcohol at all, nor does she smoke.. we have a pretty balanced diet, and she takes women daily vitamins at least 3 times a week. (she can't take them every day or she gets sick}. Should she be taking different vitamins or another?

@Vallygirl

I'll introduce her to these forums, and if she decides to check into it I'll let her know that you were in the same situation.. I'm sure that she'll want to talk with someone who knows what's up.

@Nakamova

Thank you very much for the information... I'll definitely pass it along. I just hope that I can get her to go to the doctor.. but for now I'll do like you said and make sure that what we're eating/drinking is good, and in moderation. Lucky for me, I do a lot of the cooking so that will be easy for me.

Now, I know that sometimes she does get low blood sugar.. how exactly can I incorporate more things in her diet to counteract that?

Again, thank you all so much.

Joe
 
Hi Joe --

It's a good idea to check with a doctor or dietician first before starting a particular diet, just to make sure there aren't any contra-indications or concerns. Generally, for some non-diabetic low blood sugar issues, it's good to avoid simple sugars, and go instead with complex carbs in combination with some fat and protein. An example would be whole wheat bread with cheese, or plain yogurt with fresh fruit.

It's also recommended to eat something every 3 hours to prevent a drop in blood sugar.

More info here: http://www.drpodell.org/hypoglycemia_diets.shtml
 
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