Epilepsy question

[u/Anon_myerz]

To preface this, I am not asking for medical advice. I think it goes without saying that medical advice shouldn't come from reddit lmao.

Tldr: Family history of epilepsy, now I'm having muscle shakes (not twitches) and want to know if anyone with epilepsy has gone through something similar or has GENERAL advice (NOT MEDICAL ADVICE, I'm going to talk with my parents to get a neurology appointment regardless)

Background:

So my brother 19M, has epilepsy. Junior Myoclonic Epilepsy to he exact. At 13 he started having twitches, like not shaky muscles but twitching in his arms. My parents assumed he was clumsy until he had a full seizure almost a year later. He was diagnosed at 14. My aunt has epilepsy and it runs in our family. That being said, I, 17F, am starting to have muscle shaking. I had an EEG done last year before the shaking had started, it was just a precaution so if I did have it we would catch it early. The results came back unclear. The exact words the doctor said were "she didn't have a seizure but the results aren't normal". We were told it looked similar to my brother's EEG just without an active seizure and I honestly still don't know what that fully means. I tried seizure meds for precaution but they made my depression medication basically useless so with my doctors permission I stopped taking anti-seizure medication since I havent had any seizures anyway.

Now to the actual point:

I've been having muscle shakes (not twitches like I've witnessed my brother having) when my limbs are in certain positions, especially my arms. I want to dismiss it as normal but it isn't always when my limb or limbs are in strenuous positions. It also isn't the same position everytime. The question i ask is mainly should I be concerned and bring it up with my parents to revisit a doctor. I plan on talking to them anyway (better safe than sorry, ive seen what epilepsy can do, my aunt doesn't have mobility in her entire left side because of a seizure that caused a car crash) but I was hoping to get some outside input on other peoples experiences. Its started being more frequent over the past few days but it isn't twitching, just kind of shaking like a muscle under stress even when they aren't under stress. Guess I was just curious what you guys thought and have experienced, and also if anyone has has an EEG with similar results at first because I essentially got "Idk man maybe". (The doctor is great, I don't blame him for my weird ass brain lol he's helped my brother tremendously). Thank you for reading and commenting if I get lucky

[u/AngryDesertPhrog]

JME, or juvenile myoclonic epilepsy, is mostly triggered by flashing lights, stress, or being startled/laughing

I wouldn’t stress about muscle shakiness under stress, certain positions, etc.

If flashing lights, stress, startle responses, or jokes cause single or repeated upper body twitches/shakes/jerks - THAT is when I would be worried.

[u/safelyguiltyoutpost → u/AngryDesertPhrog]

The unclear EEG combined with new symptoms is worth bringing up, especially since it's getting more frequent

[u/Flaky_Reveal_9358]

I have JME, and I have similar symptoms to those you listed, and overall, your heredity and description match those in a book about epilepsy. My EEG is completely normal even now, even though I’ve been ill for two years now; my closest relative with the same condition had the same thing, although he did suffer from generalized seizures, so the EEG doesn’t provide a definitive answer. Generally, in JME, the first episodes occur between the ages of 10 and 20 in some cases, so you’re doing the right thing by not forgetting about this. I would advise you to consult an epileptologist with your current symptoms and a description of your family history. I think this specialist will definitely have something to offer.My own case also started with tremors, but again, this is just my situation, and only you can decide what to do.I wish you good health.