Not a Great Day

Hi John, I’m sorry man. Seizures are awful and terrifying. (I had one on Monday. Usually around 4/yr from the craniotomy’s scar tissue.) I’ve been through the gamut of anti-convulsent including Keppra which I did not do well with. I’m on lamotragine now.
I’ve lost years of my life in terms of memory. I could tell you war stories about the seizures and “lumps”. Hopefully this will be your one and only seizure.
Every seizure feels like a nose dive. I go through post-dictal funk for about 2 days and my muscles are sore, I’m tired, and fuzzy brain. If I did a face plant or bit my tongue it’s worse.
Did somebody see you have a seizure for 5 mins? If so, I’m really sorry because mine aren’t nearly as long and I have no idea how long it will take you get out of the funk.
I wish I could be sitting with you. You’ll probably need lots of sleep. In a way that’s a blessing because you won’t have to hurt from being “beat up.”
I can tell you lots and lots more because I have direct experience with what you’re going through. (many times) But I want you to rest and rest a lot. Heartfelt best wishes, Greg

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They tried the midazolam nasal spray on be but ended up with injection. It took a little longer to work. I asked the neurologist about it yesterday and he didn’t see value in giving it to me as I wouldn’t be able to self administer. I was thinking that having it, my wife could give it to me if needed, but they feel the likelihood with the keppra is minimal. I really liked the neurologist, he was very confident…that sometimes causes me concern but was clear that nothing is for certain. He was not completely unencumbered by humility but was confident. I always appreciate your knowledge, experience and perspective Merl, Thanks!

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Thanks Greg, and I hope you are feeling better as well, and I appreciate your input so much, I do completely get that it is not a great thing to be an expert in. I always feel there is a dichotomy between the theoretical and experience, and I tend to gravitate to the reality/experience side. I am tolerating the Keppra ok for now but just upped the dose on Wednesday and am a little light headed, but none of the behavioural side effects are showing up. I have been open about what these are with those close to me and to pay attention to/for me.

I was at work when I had the seizure so it was observed as a colleague heard me hit the floor in my office. While awkward/embarrassing to some degree, I was well taken care of and in good hands. They took care of me during seizure, while EMS was attending and came to the hospital as I was very confused and not completely cooperative. I have kept all my colleagues in the loop and when I go back to work next week on restricted duties they will be well prepared as well, it was certainly impactful for them. I am fortunate to work with amazing and caring people.

I was been getting a fair bit of sleep, and recognizing the need to let the brain re-coup, the physical lumps, bumps and bruises have mostly disappeared, even the large bump/bruise on my ‘noggin’!

Sharing your experience is tremendous for me, and I can’t thank you enough. I have to pay particular attention to slowing down, getting rest and not going flat out from morning to night! Take Care, John.

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I have noticed that my main trigger for any seizure/ or Aura has always been dehydration and getting overheated so I always have to watch my workout and any outdoor activities ( i live in Florida) and make sure I stay hydrated and not overheating myself; as that triggers something in my head.

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Hi John, You gave me a bit of a scare and it was tough falling asleep last night. I know and react to how serious this stuff is.
I’m happy you’re doing everything, and I mean everything, right. Having people watch the Keppra effects, dropping hours at work, and giving your brain time to recoup. (I didn’t have your wisdom and it cost me a marriage among other things.)
I’ve experienced that shame/embarrassment thing a lot. It’s weird b/c there’s literally nothing to be ashamed of. I had one on a flight and they had to take measures that effected lots of people. I ended up in Mass. General with no recollection and no idea how I got there. There’s been other embarrassing situations that I can’t share here. Shame is also a weird thing to feel but I do too a lot.
I’ve searched for decades for triggers-- booze, smoking, stress… no luck except flying/travel. My sleep patterns/circadian rhythm gets messed up and the risk goes way up.
Mine are gran mal but if you have an aura that’s great so you can lay down.
The other weird thing is the uncooperativeness. I do this sometimes and that’s when I get hurt by falling.
I’m really hoping that you don’t have any more but if you do it’s possible to maintain a good balanced quality of life. It is hard but if you find the right med you can do it. I’m in your corner, Greg

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Hi John. I’m so sorry to hear of your seizure. You have helped so many of us through your kind words and good advice. I hope you feel better soon and don’t have any more. Take it easy. Gill.

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Thanks Gill, feeling much better, and I am hoping as well! Take Care, John.

Hi John, I’m just checking in to see how you’re doing and if you’ve had another seizure. Are you tolerating the Keppra okay? I’m hoping all the best for you. And if you don’t rest a lot you will have to answer to me. hah! Best wishes, Greg

Hi Greg and greatly appreciated! No more seizures (knocking on wood) and I am tolerating the Keppra very well, nothing adverse at present. A little funny, my dog thinks someone is at the door with all the knocking! I am paying particular attention to getting rest, and am scheduled to head to Hawaii on Friday, a trip planned quite a while ago. A little nervous on that but have insurance all set to go and feel well! That will be a complete relax! A little nervous but I’m with my wife, who is a nurse so if anything goes sideways I’m in good hands and she’ll be able to pass any needed info along.

I am having more and more trouble seeing eye to eye with winter so need to make plans to spend a little more time in a warmer climate in the coming years. I wish I could afford Hawaii but I need to win the lottery for that to happen! It’ll hopefully be once every 3 or 4 year trip. Take Care, John.

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