400+ TLS' then Grand Mal & terrible Postictal

[Rev-Rog]

Been a while since I posted here, but I'm having a bit of a hard time, that only those with Epilepsy really know what it is to live with it.

So, my TLS' have been pretty bad, with clusters of around 150 every week or so. Was a particularly bad week that has just passed, with around 400+ seizures over a couple of days. My doctor had given me some anesthetic medication to take at the beginning of seizures, that knock me out for around 4 hours. They didn't work, and neither did some other anti-seizure 'rescue' meds.

The next day I knew something was happening, as I could no longer type or read music, which are both things that I have been doing for decades.

My wife kept insisting I go to hospital, but I put my faith in the medication and therefore expected my TLS' to stop.

That night I had a Grand-Mal. I don't remember it at all, and it happened at around 4am. I knew something wasn't right when I tried to get out of bed and fell over. Over the next couple of hours I got worse and worse, and then had around 9 hours of pretty bad delusions and confusion. Fortunately I get really happy when Postictal, but don't remember much of it.

So, my doctor has requested an urgent appointment with my Neurologist.

Today's been better, and I have just been resting and recovering.

Be nice to hear from you :0)

 

[ln1]

Been a while since I posted here, but I'm having a bit of a hard time, that only those with Epilepsy really know what it is to live with it.

So, my TLS' have been pretty bad, with clusters of around 150 every week or so. Was a particularly bad week that has just passed, with around 400+ seizures over a couple of days. My doctor had given me some anesthetic medication to take at the beginning of seizures, that knock me out for around 4 hours. They didn't work, and neither did some other anti-seizure 'rescue' meds.

The next day I knew something was happening, as I could no longer type or read music, which are both things that I have been doing for decades.

My wife kept insisting I go to hospital, but I put my faith in the medication and therefore expected my TLS' to stop.

That night I had a Grand-Mal. I don't remember it at all, and it happened at around 4am. I knew something wasn't right when I tried to get out of bed and fell over. Over the next couple of hours I got worse and worse, and then had around 9 hours of pretty bad delusions and confusion. Fortunately I get really happy when Postictal, but don't remember much of it.

So, my doctor has requested an urgent appointment with my Neurologist.

Today's been better, and I have just been resting and recovering.

Be nice to hear from you :0)

Hello Rev-Rog. I'm so sorry to hear you had such a rough week. Continue to get your rest and I wish you a productive appointment with your neurologist and a medical treatment plan with positive results! Hang in there and please give my regards to your wife, as I'm sure it was rough for her as well.

 

[hydrogyrum]

Hi Rev,

I trust you've been feeling better since posting this message. I can relate on at least two points:
You mention inability to type or read music. I had the same experience with reading text, which was very troubling, as I was in the midst of grading end-of-semester papers. I could understand each word, but the sentences didn't form any meaning in my mind. As a college writing instructor and one who self-identifies as a reader, this was very, very bad. I know what you were feeling.

The other area was feeling really happy when postictal. I often get the same feeling--I don't know if it can be called euphoria, delirium (the "poetic" delirium, not the "medical" type), or what. It makes my mind feel separated from my body, since physically I'm in pain, exhausted, and overall miserable.

I hope you can see your neurologist soon and learn something useful.

Hydro

 

[Nakamova]

Hey RR, you've been through the mill lately.

I hope the seizures have abated and you are able to heal. And that a better treatment approach can be found ASAP. Hang in there, we are all wishing you well.

:hugs:

 

[Dignan]

It sounds like such a worthless sentiment, given what you are dealing with, but hang in there. And here's wishing you best of luck with your medical team as far as coming up with something quickly.

Take care of yourself, and remember to do small things that make you feel better, if you can. Whether its music, a particular food, a movie or tv show, or just a comfortable place to be while you try to rest and recover, small things that pick up my mood are helpful to me.

 

[Rev-Rog]

No seizures in three weeks!!!

Hey Team

Sorry it's been a while, and I haven't been able to reply to the PM's. Epilepsy got pretty bad, but appear to be under control now.

Although my neuro specialist disagrees with my thoughts about what caused the epilepsy, here's what I think.

After a constant battle over 20 years since I had major abdo surgery - in 2014 I was finally allowed to be placed on 65mg daily Pred for my IBD, and was on this high dose for around 2 years. From the third day of Pred, all my IBD symptoms immediately stopped - after what was pretty much a 20 year flare!

It was after a year of being on Pred that my seizures started and also at this time was placed on anti-seizure meds. My IBD was fine (due to Pred), but my Epilepsy just got worse and worse. (I take several other meds, and I am sure this combination caused my seizures).

The anti-seizure meds (Lamotrogine < 800mg) I have been on for 18 months were terrible, worse even than the grand-mal seizures! I have a three month period of time with no memory of it, basically since Jan to Mar 2016. It also caused severe mood changes that I have no knowledge off, but that caused quite some damage to my relationship with my beautiful wife, but whom has also realized it was a side-effect of the medication.

I was on a normal daily dose of 400mg of Lam, but my specialist put me up to 800mg over a two weeks period after the cluster of around 400 tls. It stopped the TLS, but absolutely munted my mind and life. I was delusional and a danger to myself during the 3 month period that I have no recollection of.

I am off the Pred, and my IBD is returning. But - with neurologist's guidance I have also weaned myself off the 800mg Lomatrogine (anti-seizure meds), and have had no seizures for three weeks.

C'est la vie

Rog

 

[seagull]

I on lamotrgine was 250 and again at night with clobzam I took myself off 100mgs at night and must say feel bit better for it.my brain don't feel so munted as you put it.Before I started lamactcal my brain was truly munted and I found the meds made things good no e activity head ache only occasional jerks but lately things have got bad and I sure meds the cause.maybe he should change drugs

 

[Nakamova]

That's good news RR. I'm glad the lowered dose of Lamotrigine is working for you and the side effects have lessened. It's always good to track what seems to help and what doesn't. Epilepsy is so individualized, that it can be hard to figure out what the ideal approach is. Another CWE member (Arnie) found that when he took his Lamotrigine dose 3x per day rather than twice a day, his seizures went away. Completely. Same overall daily dosage, just different dosing intervals. It's counterintuitive since Lamotrigine has a long half-life, but it brought him seizure control after 5 different drugs and a VNS implant failed to do so.