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Anyone here have JME??
Wed, 06/29/2005 - 17:07Hi,
I just wanted to see who all has JME, what meds they are on, for how long, what bothers you the most about this annoying syndrome, what age were you when it was diagnosed, did you have to do any time in the EMU, Anyone else in your family have it (it is genetic).
I was on Tegretol for 3 years before they finally removed it and the Topamax.
After them 2 week stint in the EMU last year, they sent me home with Depakote, within the last month, recently, I was swithed over from regular Depakote to Depakote ER, and left the Neurontin alone.
I still have some Myoclonics, but not like I did before they put me on the Depakote.
Tegretol makes the Myoclonic jerks worse, and isn't usually given to people who suffer from this so who knows why they did it.
My Absences are still there a little, but a lot better than last year at this time.
The Grand Mals are the ones I am worried about, because nothing that has been done stops it, and surgery can not be done on someone with generalized seizures as a rule.
They especially couldn't do one on someone who has a nasty collection of generalized seizures, like I do.
I take Neurontin-3600 mgs, and 1500 mgs of Depakote ER.
They were able to catch the Absences in action by making me hyperventilate.
The rest of the time it just showed generalized spikes and waves, and burst-supression activity.
They are taking a guess with the history that my mom gave from when I was a kids through high school, that this started at 13 years old.
I wet the bed until I was 14 or 15. It was from undiagnosed and untreated seizures.
So, I was never treated like I should have been. But the theory goes---if epilepsy isn't teated, hard to control seizures may continue through out a person's life.
Nancy
Comments
RE: Anyone here have JME??
Submitted by uvmalum93 on Tue, 2005-07-05 - 12:42
Nancy,
I was diagnosed with absence seizures when I was 12 (over twenty years ago). I was first put on Zarontin, but switched to Depakote because the Zarontin caused headaches and lethargy. I was well controlled on Depakote, but steadily gained weight over the years. In college I was off meds to run some EEGs. During the six months I was off medication I was able to drop all the extra weight from Depakote. But this is where the JME first surfaced. Back on the Depakote and the weight came back too, even while participating on the rowing team with intense daily workouts. The weight continued to climb throughout my twenties until I switched to Topamax. A low dose controlled the seizures and I was able to drop all the weight again, but the speech difficulties were becoming bothersome. I had the finger tingling too, but it subsided a little over time. I was having trouble reading to my kids - I couldn't get the words off the page and out of my mouth properly. I switched to Zonegran about 8 months ago. I'm doing alright, but I still have minor speech concerns. Don't know if it is from the Zonegran or leftover from the Topamax. But its much more manageable especially if I try to speak as clearly and distinctly as possible. Although I find my oldest child occasionally finishes my sentences - that is my biggest tip off that I still delay getting some words out.
All the meds are a balance of efficacy and side effects, and unfortunately, none are perfect. Luckily, I have been controlled on all the meds I have tried, so it was mostly a balance of side effects. I'll take my current speech issues over 90 extra pounds anyday. I want to see my kids grow up and have their own families and carrying all that extra weight was not going to allow me to do that.
As we don't have a complete family history from one side of the family, it is difficult to know where my JME might come from. I keep a constant eye out for any signs of seizure activity in my kids. So far, so good. No other trouble yet with my numerous nieces or nephews, but the oldest is just reaching the age I was diagnosed at - so we will keep our fingers crossed.
I hope you are able to find the right balance of meds that you can tolerate and can also control your seizures the best.
Nancy,
I was diagnosed with absence seizures when I was 12 (over twenty years ago). I was first put on Zarontin, but switched to Depakote because the Zarontin caused headaches and lethargy. I was well controlled on Depakote, but steadily gained weight over the years. In college I was off meds to run some EEGs. During the six months I was off medication I was able to drop all the extra weight from Depakote. But this is where the JME first surfaced. Back on the Depakote and the weight came back too, even while participating on the rowing team with intense daily workouts. The weight continued to climb throughout my twenties until I switched to Topamax. A low dose controlled the seizures and I was able to drop all the weight again, but the speech difficulties were becoming bothersome. I had the finger tingling too, but it subsided a little over time. I was having trouble reading to my kids - I couldn't get the words off the page and out of my mouth properly. I switched to Zonegran about 8 months ago. I'm doing alright, but I still have minor speech concerns. Don't know if it is from the Zonegran or leftover from the Topamax. But its much more manageable especially if I try to speak as clearly and distinctly as possible. Although I find my oldest child occasionally finishes my sentences - that is my biggest tip off that I still delay getting some words out.
All the meds are a balance of efficacy and side effects, and unfortunately, none are perfect. Luckily, I have been controlled on all the meds I have tried, so it was mostly a balance of side effects. I'll take my current speech issues over 90 extra pounds anyday. I want to see my kids grow up and have their own families and carrying all that extra weight was not going to allow me to do that.
As we don't have a complete family history from one side of the family, it is difficult to know where my JME might come from. I keep a constant eye out for any signs of seizure activity in my kids. So far, so good. No other trouble yet with my numerous nieces or nephews, but the oldest is just reaching the age I was diagnosed at - so we will keep our fingers crossed.
I hope you are able to find the right balance of meds that you can tolerate and can also control your seizures the best.
RE: Anyone here have JME??
Submitted by fanourios78 on Thu, 2005-06-30 - 05:46
hello, I have had JME for 12 years, I was on .05 mg of klonopin for 10years, the side effects were hair loss, skin hives, depression, irritation. I switched to lamictal, but it affects my sleeping pattern, it's time released, so it's not there when I need it most in the morning. the side effects for me are skin hives, irritability, sleep loss. Lamictal doesn't work for me, so I'm going to switch to something else. Fortunately, lamictal doesn't cause hair loss, so it's growing back slowly. if you have any more questions email me fanourios78@cox.net