u/Background-Cod-7035

I half exist off salads due to my adult ketogenic diet for epilepsy. Salad greens with every meal. But my hands have gotten to the point where i can’t pick up salad bits! I chase that arugula and then it falls off before I can eat it. Looking into surgeries but in the meantime got any recommendations? Maybe a salad wrap, filled with greens and some vinaigrette and wrapped in romaine? Is that a thing? Ugh, am I in for spinach smoothie with no fruit or sweetener? Ewww!! Anyone have ideas?

This kinda scared me yesterday. This is not a request for diagnosis, just seeing if other people with ET have had attacks like this. it’s a few weeks until my appointsments with various neurologists so I guess I’m just looking for personal stories. I already get occasional no-no head tremors along with my regular hand tremors, the head tremors are only every few weeks. They’re pretty gentle, last a bit, then fade away. But yesterday the head tremors expanded to my trunk, twitching and clenching, with my head shaking back and forth really extremely. It lasted about five minutes. Can tremors come in an intense burst like that? i do also have focal aware epilepsy, but I’ve never had a seizure start with tremors. Maybe intense bursts of tremors are just a thing I haven’t heard of before??

For reference I’m on 160xr propranolol, 500mg primidone, 500mg lamotrogine, 500mg keppra. I was sitting on the sofa re-reading a favorite sci-fi book. I was the opposite of stressed!

Last night I was really determined to remember as much as possible of my focal aware seizure to ask if anyone had anything similar, because you guys have been so helpful. I have TLE that doesn’t show up on eeg’s except as “slowing”, i.e. brain damage. But the meds mostly work so I feel lucky. I always start off getting hyper, kind of dancing around and talking fast. Then i know what’s coming and I put myself to bed. I take klonopin as an abortive but one doesn’t always tamp it out. Last night I started rocking back and forth and muttering. My left shoulder and torso were jerking (usually it’s my right arm) and I had the usual overwhelming desire to slam my head against the wall just to knock myself out. The feeling I want to stop has no metaphor—it’s not pain, it’s not hysteria, it’s like an internal electrical fire that makes all my limbs want to dance and I’m doing everything I can to hold it in. I wish I could be like some cartoon character where fire and lightning explode from their hands and feet and eyes and mouth. But mine last for 20 minutes plus, so at one point I went to the bathroom when my kid’s door was closed so he didn’t see my arms jerking. So I can walk short ways during it. Those episodes are minimum 20 minutes but I have different ones like jamais vu, phantom smell or visual distortion, those only last around a minute or so. Oh and the reason I remember so much from last night is I took notes! Mostly gibberish of course

TLDR: anyone have seizures where they’re fully aware and have some physical jerking but a minor amount of control? would love stories!

Last year I developed ibs-mixed, and all I can say is I’m lucky I work from home. One or the other is daily. No amount of supplements help, and I can’t change my diet because it’s the adult ketogenic diet for epilepsy (which I’ve been on for seven years so the gastroenterologist doesn’t think it’s related). We are going on vacation for the first time since i got this, our annual car-camping trip in Cape Cod. But the D side of the ibs-mixed has been acting up and I don’t know what to do.

Generally if the D part is acting up and I have to go somewhere I take an Imodium. But this is for seven days. Imodium tends to work for me for two days, would it be truly awful to my system to take it every two days for a week preventively? My gastroenterologist is kinda dismissive and says if I had 15g fiber per day I should be fine. I do this through psyllium husk (due to diet can’t do Metamucil etc) and it’s not working. Any tips for camping And going to the beach?? They have good bathrooms there but it won’t be near the beach nor the tent site!

I’m trying to figure out my physical exhaustion. About a year ago I started having chronic migraine, now I’m on Emgality, Nurtec, and first round of Botox. The Emgality has really cut down the severity and duration of the migraines, they’re mostly 3-4/10 and 5 hours with the occasional 8/10 thrown in there for fun. But I still get about 15 per month, so I’m never that many days in between.

Do people get fatigue the day after a mild migraine? Or is it due to something else? I’m on a lot of medications for other conditions. I have asked my headache specialist and epileptologist but would love to hear from people who actually get migraine fatigue. All I know is I am very physically exhausted most days.

I know people can get slurred speech during a migraine, but can you get it in between migraines? meaning not as an aura before pain begins? I’m trying to figure out if it’s a part of my recent chronic migraine problems or this barbiturate medication I’m on for other stuff. it’s the fact that it only happens occasionally that makes me suspect it’s not the medication. it’s like I’m drunk, and have to speak slowly to have words not sound like a pile of mush. Anybody have anything like this, or is it more likely attached to my epilepsy? Yay so much fun neurological activity!

Hi all fellow migraineurs! I’m trying to figure out if my perpetual exhaustion is solely due to a heavy duty medication I’m on for epilepsy, or if some of it might be migraine post-drome tiredness. I have chronic migraines, maybe 15 days out of the month (with very mild headaches every day but I don’t bother to log those weiners in my app). For those who get tired during post-drome, how tired do you get, and for how long? I know it’ll vary for everyone, but I’m sleeping 11 hours and barely able to do anything. Boy oh boy is my stovetop disgusting. I don’t know why that’s the first thing that pops into my mind…

Oh and I can’t have caffeine. And I have an epileptologist and a separate headache specialist, so I’m trying to bridge the knowledge gap between

I’m guessing it’s mostly my epilepsy meds, as I had to increase a barbiturate. But would love to hear your post-drome experiences!

I’ve found that since my migraines went chronic a year ago that I’m not making social plans. Or if I do I have to cancel 70% of the time. The Emgality and Nurtec are decreasing the severity of the migraines (yay!) but not the frequency (boo). I had my first Botox a few weeks ago so there’s lots of time to see if that works, I don’t feel hopeless

I guess my question is, do you make social plans? If your head starts hurting beforehand do you push through in case it turns out you took the nurtec in time?

Edit: before the migraines went chronic we moved from the city to just north of the city to be by my aged parents, with the belief I could pop back down to Manhattan anytime. But in reality it’s an hour and 20 minutes each way every time I see someone. And they’re people I’ve known and loved for 30 years. They’re all understanding, but that much of a commute to see someone feels overwhelming. I’ve made a handful of friends here in town but man it’s exhausting trying to make new friends when you’ve got multiple disabilities making you super tired.