I also have jme. I was diagnosed when I was I'm now 30 and I think that mine seems to be getting worse too. I'm currently on Lamictal mgs 2 x a day. Sometimes the vision in my left eye only looks like the room is moving up and down rapidly and I end up having to crawl on the floor to get around my house. But if I close my left eye I can see out of the right one just fine. I'm also having twitching and jerking in my legs and arms when I'm trying to fall asleep.
It also at times feels like there is and electric shock going through my body. It wasn't this bad when I was first diagnosed and this all started within the last year. If anyone else knows why I might be going through this please let me know. I really think that my epilepsy is getting worse. The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
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See all Posts in This Topic. Connect Get Social! Living With Epilepsy - Adults. I experience tonic-clonic, myoclonic jerks, as well as absence seizures. I stopped taking my medications regularly in October last year - and about a month ago - actually, yes - exactly a month ago, had a tonic-clonic.
I will not be skipping out on meds because they're expensive anymore. Since I've recovered, and by now my meds are up to level - I am still having myoclonic jerks as well as some issues with my eyes my doc, who is one of the best - thinks they are likely myoclonic jerks in my eyes due to the occipital lobe origin of my epilepsy. So we've upped the ante and I'm now taking an extra dose of the meds.
It's only been two days of the extra dose. Today, I experienced my first myoclonic jerk in my right hand ever and they've been happening there the better part of the day - they always happen on the left. Then in the afternoon, I had a weird visualization like when you rub your eyes and see bright floaters of bright lines and shapes - all the while smelling something yucky.
I couldn't shake the vision and at the same time I was aware of my surroundings - but having my eyes open was "painful". I'm just wondering if this was a seizure? And why the hell am I having more now than ever? I used to be a serious party girl - you would think I would have had them then?! Submitted by kay69 on Fri, Hi Tara, I admit I really don't know the answer, and I'm pretty sure doctors don't either, there's just no rules with ep. So sadly it really is a waiting game for us. Submitted by wd on Wed, I have an old brain injury that is causing issues too.
Submitted by El Diablo on Wed, Submitted by Spike. Submitted by tara michelucci on Sat, Submitted by Kathy on Sat, Submitted by tara michelucci on Sun, Submitted by abcfruman on Tue, Im looking forward to menopause now. Submitted by 3Hours2Live on Mon, Hi Tara, Generally, seizures that continue regularly through adolescence into adulthood, become worse with age. Submitted by tara michelucci on Mon, Tadzio, You seem very knowledgeable, and I'd like to hear more from you.
Thanks much for any more time you have to offer, Best, Tara. Submitted by 3Hours2Live on Wed, Submitted by tara michelucci on Wed, If that's not getting worse with aging - I'm not sure what is? Tara OP. Submitted by jubatum on Fri, Treatment can help most people with epilepsy have fewer seizures or stop having seizures completely.
Some people need treatment for life. But you might be able to stop treatment if your seizures disappear over time. Epilepsy is usually a lifelong condition, but most people with it are able to have normal lives if their seizures are well controlled.
Most children with epilepsy are able to go to a mainstream school, take part in most activities and sports, and get a job when they're older. But you may have to think about your epilepsy before you do things such as driving, certain jobs, swimming, using contraception and planning a pregnancy.
Health Conditions Discover Plan Connect. Long-Term Prognosis for Epilepsy. Medically reviewed by Ricky Chen, M. Factors affecting prognosis Complications Studies Overview Epilepsy is a type of neurological disorder known for causing seizures. Among these include your: age health history genes severity or pattern of seizures current treatment plan.
Factors affecting prognosis. Epilepsy complications. What does the research say? Read this next. Medically reviewed by Jeanne Morrison, Ph. Are There Different Types of Epilepsy? Medically reviewed by Heidi Moawad, M. Absence Epilepsy Petit Mal Seizures. Some children are taken off medicine if they have had no seizures for 1 to 2 years. This will be determined by your child's healthcare provider. Your child may be treated with any of the below:.
A ketogenic diet. This type of diet is very high in fat, and very low in carbohydrates. Enough protein is included to help promote growth. The diet causes the body to make ketones. These are chemicals made from the breakdown of body fat. The brain and heart work normally with ketones as an energy source. This special diet must be strictly followed.
Too many carbohydrates can stop ketosis. But some children become seizure-free when put on the diet. Vagus nerve stimulator. This treatment sends small pulses of energy to the brain from one of the vagus nerves. This is a pair of large nerves in the neck. If your child is age 12 or older and has partial seizures that are not controlled well with medicine, VNS may be an option.
VNS is done by surgically placing a small battery into the chest wall. Small wires are then attached to the battery and placed under the skin and around one of the vagus nerves.
The battery is then programmed to send energy impulses every few minutes to the brain. When your child feels a seizure coming on, he or she may activate the impulses by holding a small magnet over the battery.
In many cases, this will help to stop the seizure. VNS can have side effects such as hoarse voice, pain in the throat, or change in voice. Surgery may be done to remove the part of the brain where the seizures are occurring. Or the surgery helps to stop the spread of the bad electrical currents through the brain. Surgery for epilepsy seizures is very complex.
It is done by a specialized surgical team. Your child may be awake during the surgery. The brain itself does not feel pain. If your child is awake and able to follow commands, the surgeons are better able to check areas of his or her brain during the procedure.
Surgery is not an option for everyone with seizures. If age-appropriate, make sure your child understands the type of seizure he or she has and the type of medicine that is needed. Know the dose, time, and side effects of all medicines. Give your child medicine exactly as directed.
Talk with your child's healthcare provider before giving your child other medicines. Medicines for seizures can interact with many other medicines. This can cause the medicines to not work well, or cause side effects.
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