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MissGriff

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I had my appointment last week with my neurologist who said she's about 98% sure I have juvenile myoclonic epilepsy. I have no idea what this means. I'm not really sure what I should be looking for?

My arms, legs, neck and face Jerk/twitch randomly and is pretty much an all day thing anymore. It gets worse as the day goes on so night is when it's at it's worst. (This is also true for the zoning out which is also quite bad.) I have very little memory and lose time (and items) a lot. I've also been smelling saw dust every day on and off all day too which is driving me nuts bc no one else can smell it. Sometimes it smells like the house is on fire too.

I also wake up in a lot of pain in the mornings, and sometimes my muscles are so weak I can barely walk. Makes me wonder if that's connected to this too?

I haven't experienced anything recently that would make me think seizure. I'm twitching a ton now but yet I'm still on here typing. I go in Wednesday for an EEG to confirm (MRI was normal), but until then I'd be nice to understand a little more about what Im probably facing.
 
Hi buddy.

Well how familiar does all that sound.

The twitching..the crazy smells... it all makes you feel like you are going mad. Its so unlike any other complaint you have heard of that it seems as though it cant be real.

I spent 4 years hiding this stuff thinking noone would believe me..its so off the wall.

Yet its common enough for many. It is hard to come to terms with but you can do it. With help from the neuro folk and with support from family and friends and also others who share the same symptoms. This forum is a great sorce for that.
Together we can all help each other understand these changes. You are not alone young miss and we are all right here.

Stephen. Xx
 
Thanks Steven! Yeah, I was pretty shocked when she said epilepsy! I knew that ment seizures but that's all I know about it. I'm reading what I can about it online but I'm still confused!

Myoclonic sounds right but I read with JME jerks are usually in the morning...mine are all day and get worse through the day. It is really annoying! I can't tell you how many times I've knocked over a full cup of coffee or a glass of lemonade! Lol

The smells I've had for years but not often. The saw dust smell just started about a month ago and it's every day so it's been bothering me a bit. I didn't tell my dr but also the last month, I've been frequently having a vision (or premonition) that I'm going to fall down into a tonic clonic while my husband is at work. So, that's another reason I was surprised when my dr suggested epilepsy. Now, it's got me a bit worried. Most of my symptoms significantly increased around the same time. There for a while I did think I was going a little crazy!
 
Yeah much of this sounds familiar. It seems we each have similar symptoms but all of us have our own mixture.

I twitch a bit ...when i am tired.. The premonitions you speak of..to me i explain them as a recurrent sense of dread.

The smells and the 40 times a day deja vu. Crazy stuff.

Yet to look at us we dont look no different from the next person.

The underlying cause for me has been cerebral aneurysms. These are safe now but the epilepsy is my burden now for ever.

I can do that. Folks have worse.

How old are you if you dont mknd me asking. Age of onset is of interest to me.
 
Stephen said:
Yeah much of this sounds familiar. It seems we each have similar symptoms but all of us have our own mixture.

I twitch a bit ...when i am tired.. The premonitions you speak of..to me i explain them as a recurrent sense of dread.

The smells and the 40 times a day deja vu. Crazy stuff.

Yet to look at us we dont look no different from the next person.

The underlying cause for me has been cerebral aneurysms. These are safe now but the epilepsy is my burden now for ever.

I can do that. Folks have worse.

How old are you if you dont mknd me asking. Age of onset is of interest to me.
Click to expand...

It does sound similar! I'm 27 now...when things started I'm not too sure since my memory is so bad lol. I started getting headaches when I was 7 (not sure if that means anything) and the zoning out got really bad in high school (it's still bad). My memory got really bad when I was about 20 (it's getting worse and I have a lot of timeloss), along with the morning body pains. I think I was about 22 when the smells and twitching started. It only really happened when I was angry or upset so I figured it was nerves.

Horrible headaches started a yr ago after a terrible concussion. The twitching and smells became an every day thing about a month or 2 ago. This is all the best I can estimate bc my memory is so bad. I'm really not 100% sure when everything really started but maybe you might have a better guess from my little timeline lol.

I don't get déjà vu very often but I have had the opposite (unfamiliar) more often the last 6 months or so.
 
Welcome MissGruff! My daughter was disgnosed with JME last year. She has morning myoclonics and once in a great while she'll jerk late at night before she goes to sleep. I have seen her jerk when she is stressed or rushing around in the morning. She is taking 250mg of Lamictal XR. She also takes a multivitamin, magnesium and folic acid. Keep us posted on how things are going. I'm interested about the strange smells you are having. I'm going to ask my daughter is she experiences this.
 
Hi MissGriff, welcome to CWE!

I sounds like maybe you've been having absence seizures (the zoning out) that have progressed to include partial seizures (phantom smells) and twitching (myoclonus). If you're waking up with body aches in the morning, you may be twitching or having other seizure symptoms during the night. Your doctor should be able to provide detailed information on Juvenile Myoclonic Epilepsy, and why she thinks it's the right diagnosis. Never be shy about asking your neurologist questions -- don't leave an appointment until everything is explained to your satisfaction, and make sure you know how to get in touch with the doctor if you have additional questions.

One thing that can help provide some relief from the twitching is magnesium. You might try adding magnesium-rich foods to your diet (spinach, yogurt, lentils, bananas, and... dark chocolate!), and consider taking a magnesium supplement at night before you go to sleep.

Best,
Nakamova
 
Thanks chop456! I'll definitely look into all vitamins and minerals you mentioned. My dr said shed like to start me with Topomax (I think that's what it's called), but I hate pills and wanted to ask her if there's anything natural I could try first. I'm assuming this is one of those things I'm not really going to have much choice on, though.

My jerks do get worse when I'm stressed, angry, upset, or startled...and for some reason watching tv and being on the Internet seems to trigger it out too for some reason.

I'm sorry to hear your daughter has this :( it must be tough on her! In hindsight I think mine started around 7. That's when I started getting headaches all the time. I'd also wake up with complete amnesia. I'd forget who I was and everything about myself. Has she ever had that problem too?
 
Thanks Nakamova, I think your right about all that! I. Pretty sure I'm having absence seizures. I'm also very curious if I am having night seizures. My husband hasn't ever noticed any jerking from me at night, so I'm wondering if its possible to just go stiff? I woke up this morning with my jaw clenched tightly and it's kind of sore...also the body pain as usual. That's what brought me to my GP in the first place.

Yesterday was a bit strange too. I noticed I was smelling saw dust again while watching a movie and shortly after both my legs jerked inward really hard. I haven't noticed jerks on both sides of the body at the same time in the same way before...and it's not usually that hard. Then I started twitching all over and was zoning out. Is it possible to have different seizures at the same time like that?
 
Yes it's possible to have different seizures (or perhaps the same seizure with different manifestations) at the same time. The seizure activity could be originating in multiple parts of the brain or spreading from one part to adjacent parts, which would tend to generate different kinds of symptoms. It sounds like you are having simple partials (which can have both a motor aspect as well as false smells); when you zone out, it could be a sign that they have progressed to the complex partial stage.
 
Ok that makes sense then. I never really payed much attention to the details of my own symptoms, I just knew they're getting really annoying!

I downloaded an app today to help me track everything and its really helping me pay attention more. It's sort of a pain though bc I feel like I'm constantly creating a new entry. Plus I'm having a hard time figuring out how to log the myoclonic jerks bc sometimes they linger for so long or I'll get one jerk every couple minutes....or just one or two in an episode.

I'm only logging the myoclonics and absence for now since I'm not sure about anything else yet. I will look up the partials though. My Dr. did say she suspected the possibility of partials but didn't say which kind.
 
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