Diagnosed with Epilepsy 3 years ago...... told today it's NOT epilepsy?

[omgzitsmiranda]

My husband had been told almost 3 years ago that he has frontal lobe complex partial seizures. They put him in the EMU for 5 days and caught one "questionable" seizure out of many, many. Okay. So his Neuro FOUGHT with his partner over my husband and said that it picked this up, he showed signs of Epilepsy, etc. So we got him put on medicine & went to his scheduled appointments, tests, etc. Well we finally figured out some triggers for his Epilepsy and just tried to avoid them (heat, humidity, fluorescent lights, skrillex lol and certain other music/sounds aka Doctor Who's sonic screwdriver). But this summer has been SO hot & so he's been having way more auras and seizures than usual, so I took him to the ER on the request of his Neuro who was booked up.

So.. sat on the EEG for less than 24 hours this time. Had 3 seizures and nothing showed up and was told that 3 years ago and from that point basically mean nothing.. he does NOT have Epilepsy, they're not sure he's even having seizures at all?! and that they have NO idea basically what is going on.......... wanted to stop ALL of his medicine COLD TURKEY RIGHT THEN.

I need advice please. Has anyone else experienced anything like this? I need need need need need help.

 

[dejavudu]

Hi, Miranda.

My situation is probably chronologically opposite, but I spent fourteen years dealing with seizures before I was officially diagnosed. Throughout that time, I accumulated a long list of diagnoses, even as I was occasionally having seizures right in front of doctors. It's not always easy to tell what is and what isn't a seizure. Some things which aren't seizures can feel like seizures, but just because the real seizures aren't showing up right away doesn't mean they aren't happening.

In any event, they should know better than to stop any medication so quickly.

Best of luck figuring things out.

 

[chmmr]

I'm sorry to hear this is happening to you guys. Has he talked with his neuro since being in the ER? (sorry i wasn't sure whether that was him that wanted the med stopped or the ER people).
One clean EEG means nothing, and everything i have ever read says that frontal epilepsy can be hard to pick up on an EEG even if someone has a seizure during the EEG. I would definitely be getting a second opinion before stopping the meds. Good luck.

 

[daviscy60]

Do not always catch seizures on EEG. I started having seizures at 19 (now 53) have a son that around the age of 23 started having these spells where he became unconscious. Did not bite tongue but did mention a déjà vu feeling prior to losing consciousness. This sounded somewhat like how mine started which I did end up having TC's. His EEG came back showing nothing. Sent him to have all these test done on heart. Wore a heart monitor for a week. All heart test came back showing everything good. Drs put him on AEDs based on my problems. I believe he was on lamactil (sp). He ended up taking himself off of it. 5 to 8 yrs later he has a wreck. Knocked down a tree and ran into a cement wall. Said he got the same déjà vu feeling before it happened. Spent about 5 days in hospital and again EEG showed nothing. They did put him back on Keppra though. I myself have had TC during EEG.

If they say you don't have seizures. That would be great but I would be careful or get a second opinion in coming off meds cold turkey. I have had neuro tell me not to take meds and not sleep prior to EEG trying to catch the seizure on EEG. But was told NOT to drive to my appt. had to have someone drive me. If you are having seizures and you stop meds all at once without tapering off of them this could cause a seizure if you do have a seizure disorder I believe.

Be careful....

 

[Chelsea]

Aren't frontal lobe seizures notoriously difficult to catch on EEG? I read that they are often misdiagnosed as non-epileptic events.

 

[Wobblez]

Urghh...story of my life, and that of many others it seems. "You have E, you don't have E" blah blah blah....the road to an accurate diagnosis seems to be an insanely rocky one. Best of luck for you and your partner.

 

[omgzitsmiranda]

I think there's a lot of other issues going on in terms of getting him properly diagnosed {imo anyway}. My husband has asthma, allergies, Tourettes Syndrome and some kind of numbing/tingling in his legs that make him unable to walk when these episodes start [but are NOT the same time as his seizure episodes].

I think that's there the problem lies. Some of his Neuro issues are running into each other so to say and there lies the confusion. I think they're not really listening & hearing "numbness/tingling in legs" and assuming AHA! we're geniuses, it's NOT seizures at all, it's something else because of the legs issue. But they're not listening to the fact that they're NOT at the same time.

They're also not listening to the fact that his seizures get worse when triggered by fluorescent lights, heat, humidity and just random other things. They're not just *random* unexplained instances. Is this making sense to anyone else? He usually tosses & turns but some nights he's completely still; doesn't move at all & has wet the bed. He wakes up foggy, doesn't realize where he's at or what's going on and just stumbles around.

Very similar experience when he has his "complex partial seizures". But, I almost wonder if maybe he has absence seizures? I know they're super, super common in children; but is that not possible? Or a mix maybe? I have no idea. I'm just so up in the air with everything. But basically, I think they're getting all of his symptoms jumbled and confused due to so many other outer lying issues.

 

[pita300]

This has been my life for the last 2 years. I was diagnosed with E at 19 Surgery at 21. Went seizure free until March last year. Over the last 2 years I've had so many EEG's that I've lost count. Last November the Epileptolgist called me personally to tell me he saw what looked like seizure. Even diagnosed them as frontal lobe seizures. My EEG's are always abnormal but now these new seizures never show on the EEG. Just a month ago I was in the ER because of a cluster that we couldn't control with Lorazepam. So since I was already there I was admitted to the EMU. The Dr. wanted to keep me 7 days. The Dr took me off all the meds I was put on since March 2010. Cold Turkey. I had seizures sames result not showing on the EEG So now were back to no seizure but pseudo seizure. What about what you saw in November last year I asked. His answer I don't see that now. My "episodes" have decreased. Not being on all the anti seizure med Makes me feel so much better. So here's what I know. I'm tired of fighting the diagnosis. I could find another epileptolgist for a 2nd opinion. Then start the whole process over again. Is it worth it. There comes a time when you just have to say uncle. This might not be the answer or advise you were looking for. I thought you might like to hear from someone who lives with this every day.
Good Luck

Good luck

 

[Nakamova]

wanted to stop ALL of his medicine COLD TURKEY RIGHT THEN.

You've got be kidding. Even if you've never had a seizure before in your life, stopping anti-seizure meds cold turkey can cause one. I recommend you get a second or third opinion. Positive EEGs can be helpful, but an experienced neurologist is aware that certain kinds of seizures are too transient or appear to deep in the brain to be recorded. And a good neuro can make en epilepsy diagnosis based on the clinical symptoms alone.

 

[Belinda5000]

Someone I met in Montreal,Canada and have stayed in touch with , who was one of the youngest at time to have surgery, was later told she didn't have epilepsy. The seizures stopped and she was from my state.



Belinda:banana:

 

[N Sperlo]

So, let me try to understand.

He had gone to the ER and had some "seizures" while hooked up to the machine. It did not detect any activity. They decided he wasn't having seizures. Someone decided he does not have epilepsy.

What kind of seizures was he having?
Who decided he was or wasn't having seizures?
Who decided that he does not have epilepsy?

Just trying to chop the facts out to fully understand.