Tonic clonics far apart, but now one with no (obvious) trigger

[concernedwife]

Hi,
My husband is 37. He had his first tonic clonic seizure about twelve years ago, then one seven years, two years ago, and last week. They have all been about 5 years' apart until last week. Each time he has lived in a different part of the country, so different neuros. Each time he goes on meds for a few years, then the docs say he can taper off, and he continues seizure-free and med-free for a few years.
Also each time, until last week, there were clear triggers- a stressful time in his life + little sleep the night before + heavy drinking the night before. All occurred in the early morning. However, this time was different. He barely drinks now, had slept a solid 6 hours (shorter than normal but not what I would consider sleep deprivation) and is on summer break. He has been on zonisamide since the last seizure and takes it religiously.
Also important- after the seizure two years ago, the docs did a sleep-deprived EEG and said he had a seizure disorder. They never used the word epilepsy, but I think they are the same thing?
Does this mean he is going to start having seizures without triggers? Will he go from 5 years between to 2 years or perhaps more often? Will he need to be medicated forever?
We see the neuro tomorrow. I know we are very very lucky. I know many people have seizures every day, week, month. His seizure last week happened while I was driving- it easily could have been while he was driving. So please don't take this as a complaint. I am just concerned, confused, and looking for some advice, personal experiences, etc.
Thanks in advance!

 

[MaryK]

Hi Concerned wife and welcome to CWE where you can jump right in with questions and feel comfortable with the group.

If the EEG did show a seizure disorder two years ago there is a good chance it is epilepsy, but do not let the word epilepsy bother you. When you see the neurologist tomorrow he will probably order another EEG and possibly a CT scan or an MRI (both radiology imaging of the brain).

Many of will go months or even years without a seizure and then they appear again.

It might be a good idea to keep a journal with the known triggers and look for others too.
Diet pop, caffeine, alcohol, MSG can all be triggers for some, but not everyone. Stress seems to be at the top of many of our trigger lists. Has your husband been sick or on any new medications? For instance, just today I was researching and I found out fentanyl can trigger a seizure, which it did for me after just one dose. I wish I would have known this for obvious reasons. Unfortunately, sometimes seizures happen with no known trigger happening first.

Was your husband currently taking any AED? If not, maybe he might want to consider discussing taking an AED to help prevent break-through seizure activity.

I am sure others will post with their ideas. You sound like a wonderful caring wife. Please let us know how the appointment goes. Again, welcome to the group. We are glad you found us.

Mary

 

[MuayThaiFighter]

It is perfectly ok to be worried, and I hope he is feeling better. Seizures are such a strange thing, I have read about them, have friends in the medical field explain things to me. I still am pretty confused. Bring all this information to the neurologist, it will really help. I wish I had more to say. I can give you some good examples. Everyone in my family that had seizures had them off and on and they never had them again. His neuro should be able to give you both more understand and alleviate some stress. God bless.

 

[Nakamova]

Hi concernedwife, welcome to CWE!

Unfortunately seizures are unpredictable, and the seizure threshold can go up and down in response to all sorts of factors -- including ones that change over time, or behave in cumulative ways, or work in combination with others.

If your husband was diagnosed with a "seizure disorder", that is essentially another way of saying epilepsy. His recent seizure may or may not imply that he's more vulnerable now. The main thing is to let his neurologist know, so you can discuss whether this may be an isolated event, or whether his dose of Zonisamide may need tweaking.

BTW, I found that Zonisamide actually became a seizure trigger for me, because it made it very hard for me to eat. (It's an appetite suppressant, and can also make the stomach painfully acidic). The resulting low blood sugar triggered a seizure, and I then switched to Lamictal, which has been fine. I had been on Zonisamide for about 6 months when the seizure occurred, so it was a gradual process. I hope your husband is fine on the Zonisamide, but if his appetite has been affected, that might be related to his seizure. Zonisamide can also cause something called metabolic acidosis -- you can read about it here: http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

 

[Cint]

Also important- after the seizure two years ago, the docs did a sleep-deprived EEG and said he had a seizure disorder. They never used the word epilepsy, but I think they are the same thing?

Seizure Disorder is the newer term they are using now instead of Epilepsy, but it is still the same thing. IMO, I wish they would've left it alone for this reason. It only confuses folks.

As Nakamova said, the medication may need to be adjusted some or he may need to try something else. Some meds work well for some, not so well for others. And there are or could be side effects for all medications out there.

 

[concernedwife]

We went to the neuro today. He suspects juvenile myoclonic epilepsy and ordered a new EEG tomorrow morning. He also changed him to 1000 mg depakote daily. For some reason, it feels good to have a diagnosis. The neuro feels confident that with the right med and dose, my husband's seizures will be controlled, though he will likely need to stay on meds forever.
Any experiences with this type of seizures? With depakote?
Thanks for all your responses. This is a difficult time for us, a lot of new information to take in!

 

[Nakamova]

Juvenile myoclonic epilepsy is among the most common forms of epilepsy. I've put a few links to CWE posts about it below (as well as about Depakote), and other members may chime in. There are three different kinds of seizures that can occur with JME -- the main ones are myoclonus (small jerks), as the name suggests. But it can also take the form of generalized tonic-clonics (grand mal seizures), or absence seizures, which look like brief moments of spacing out or daydreaming.

http://www.coping-with-epilepsy.com/forums/f20/new-curious-about-juvenile-myoclonic-epilepsy-15996/
http://www.coping-with-epilepsy.com...might-have-juvenile-myoclonic-epilepsy-16497/
http://www.coping-with-epilepsy.com/forums/f23/side-effects-valproic-acid-depakote-2235/
http://www.askapatient.com/viewrati...e=DEPAKOTE&PerPage=60&sort=timelength&order=0

 

[kitty]

sleep deprived

My JME is triggered by being sleep deprived they do sleep deprived EGG to see if this is a trigger I am about to go for my first one after finally demanding it to see how much this effects me after having a isolated grand mal being free from grand mals for five years ( still have the jerk seizures had been not sleepinging well i was very lucky i know i am going to fit