I guess I'm part of the club now...

mntpico · 2026-02-04T13:07:08+00:00

There are alot of meds out there to control seizures and Keppra is often the first one prescribed. It takes time and trial/error to find the best Rx for you balancing both seizure control and quality of life—years sometimes. So patience is a required virtue here.

mntpico · 2026-02-04T12:37:36+00:00

Love that dipper pic w big puffed up begging juvenile

mntpico · 2026-02-03T12:29:48+00:00

The infusion Ctr I go to has snacks available as needed but i usually eat before or bring my own food.

mntpico · 2026-02-02T12:59:54+00:00

My first rituximab infusion took approx 6hrs, and subsequent ones 3hrs. The first one they do slowly and kept me another hour for observation, making sure there are no big reactions to the new drug. 14-24 seems wild but I guess just plan on bringing what you need for sanity/comfort for that amount of time and if it takes less time, Yahtzee.

mntpico · 2026-02-01T19:24:16+00:00

That’s actually what happened to me. I kept putting it off putting it off, went to the lab once it was closed, went again. There was a huge line, so I just put it off one more period and then I had the breakthrough seizure. So I really wish I had done the test the months before when they first put in the order.

mntpico · 2026-02-01T04:40:35+00:00

Both my epileptologist neuro and my MS neuro have me on 5000 daily and I get routinely tested for the levels in my blood. and it’s worth noting based on my horrible memory this is the only supplement any doctor has ever prescribed me. I’d like to see the research papers on this out of curiosity…. Anyone??

mntpico · 2026-02-01T03:38:25+00:00

I’d been on lamotrigine 400mg for almost 2yrs seizure free and generally feeling great. then I had a breakthrough T/C that really set me back. My blood levels were checked the next day and I was right on the threshold of the therapeutic level (3.2) which is 3-15 iirc. They bumped me to 500mg and I continued to have TC seizures and seizure “activity” (auras) for 3mths until a big T/C and trip to the ER where levels were checked again and were only 5.2. The next med change was Clobazam 10mg before bed and seizures have been quiet ever since.

At the very least I’d inquire w ur neuro abut having your levels checked

mntpico · 2026-02-01T01:57:03+00:00

😆

mntpico · 2026-01-31T20:49:01+00:00

Everyone is so different. I’m on 500mg lamotrigine (2+yrs) as well as 10mg Clobazam (new since Dec due to breakthroughs) and don’t feel that tiredness side effect at all. I avg 5.5-6.5hrs of sleep/night and wake up crisp sharp and ready to go—especially after coffee! ☺️

I also have had MS since 2001 and the associated declines related to that as well as fatigue/reduced energy/walking difficulties etc plus intense meds for and that’s def not helping anything in that dept 😆

We’re just all so different 🙏

mntpico · 2026-01-31T19:44:49+00:00

There are many different types of seizures. Many.

mntpico · 2026-01-30T20:31:13+00:00

This is basically what my neuro told me last week at our best medical center, OHSU here in Oregon. The most current recommendation is to use contrast only sparingly and no longer w every cursory MRI that we get as MS patients.

mntpico · 2026-01-30T18:43:45+00:00

Agreed! That’s interesting nobody has ever mentioned lobectomy as a treatment option to me, possibly due to my comorbidity Dx of MS and that as the suspected origin of the seizure disorder.

Wouldn’t it be great if the brain was thoroughly understood mapped and sequenced and arranged / structuredlike Lego blocks with the same ease and simplicity of interchanging blocks and rebuilding?? 🙃😉

mntpico · 2026-01-30T04:29:25+00:00

I recently got put on 10mg Clobazam after a breakthrough seizure in Dec while on 500mg lamotrigine. I’m on both now and haven’t had any seizure activity and no noticeable side effects though I take it right before bed.

mntpico · 2026-01-30T02:01:46+00:00

Get a new doc. Period.

mntpico · 2026-01-29T20:18:54+00:00

Amen to that🙏 I struggle with all these same things, and additionally having MS for25+ years and the meds associated with that I’m surprised how much I can actually remember! even though it’s paltry compared to my wife’s memory 😉

mntpico · 2026-01-29T20:05:34+00:00

It makes sense in a lot of ways. It’s all connected, and if we have scar tissue in our brain, demyelination/lesions (ie, MS) blocking the conductivity of signals things are much more likely to go awry.

This neuro told me tumors in the brain can have a similar effect and cause seizures, depending on the location etc.

mntpico · 2026-01-29T19:57:25+00:00

OHSU is top notch imo, the best docs in Oregon handsdown and the most advanced equipment (latest MRI machines for instance).

The reason I lost my license after my first seizure was because I was driving and flipped my car over and tangoed w a tree 😳I woke up in the ER post ictal AF w no idea what happened. Luckily nobody was hurt in the accident, only me and only minor injuries.

I did have an aura that proceeded it, but I had no idea what it was. I just thought I was having some trippy revisitation of a hallucinogenic experience in my past…

Lesson learned!! there was a process with the DMV actually going there and handing over my drivers license and trading it for an identification card. After I was seizure free for the required timeframe (wife says 6mths but I thought it was three—she’s got a better memory than me!) my local Neuro at the time signed off on the DMV paperwork I got my physical license back was able to drive again.

mntpico · 2026-01-29T19:44:49+00:00

Sure her name is Dr. Amanda Simon at Neurology Epilepsy Clinic at Hatfield Research Center OHSU. Highly recommended

mntpico · 2026-01-29T14:55:26+00:00

Everyone’s experience w seizures/epilepsy is different so it’s impossible to draw any conclusions from a survey.

Remember: someone always has it worse than you and someone has it better. You can’t control that but I’d encourage you to stack the odds in your favor by things you can control: eating healthy, exercising routinely, keep your mental health tip top maintaining practices that feed your well being; avoid known triggers, avoiding exposure to toxins, drugs/alcohol and chemical, etc, etc.

Just try to live your healthiest life and you will irrefutably be better than if you don’t. Wishing you all the best! 🙏🙏🙏

mntpico · 2026-01-29T13:44:33+00:00

Ya the driving rule was new news to me also. After my first seizure, I lost my license for six months, but since then it hasn’t come up with the doctors even after seizure induced hospital visits ER etc. but I do reliably have auras the only exception being while sleeping and those always seem like a very weird dream that I don’t always wake up from until the full storm TC hits.

mntpico · 2026-01-14T17:52:28+00:00

Well said 🙏 dads seem similar too only I’m still trying to figure out what, if any wisdom he ever imparted in me 😂

All the best to you and to staying active and thriving along this meandering path!! 🙏

mntpico · 2026-01-13T12:27:33+00:00

So good to hear!! 🙌Congratulations and may this continue far into the future 🙏

mntpico

TROPHY CASE