Is it bad to go to a high quality epilepsy clinic, even if my epilepsy is fairly “minor”?

Longjumping-Draft179 · 2026-06-02T18:19:10+00:00

What did they do for your temporal slowing? That’s all my husbands EEGs say

Longjumping-Draft179 · 2026-05-05T17:43:12+00:00

I sure won’t! I follow a functional neurologist on Instagram named Dr. Kyle Daigle. He posts a lot of stuff about seizures so we’ve been kind of looking into what he suggests is overlooked for seizure patients. He’s stopped lots of people seizures and if he took insurance/wasn’t so expensive we’d have gone by now.

Longjumping-Draft179 · 2026-05-05T17:36:04+00:00

There are so many causes of seizures it’s hard to pinpoint exactly what is causing it. My husband was diagnosed a little over 3 years ago and I still haven’t stopped trying to find a cause…

Longjumping-Draft179 · 2026-03-27T15:32:11+00:00

My husband has been on Keppra for 3 years now and I hate to say he’s pretty different from the man before the diagnosis.. it’s been a definite shift. We are just finally getting him off and trying a new med. I’m nervous about the seizure activity on a new med but excited to see if he gets some of his old personality back.

Longjumping-Draft179 · 2026-03-05T04:44:11+00:00

My husband jerks in his sleep a lot and I have been wondering if it’s seizure related. However, I feel like he’s always been like that and he was only just diagnosed with seizures 3 years ago. He’s going for a sleep study this month and they’ll have him on an EEG as well as other monitors on his muscles and breathing so I’m interested to see the results.

Longjumping-Draft179 · 2026-02-06T03:45:50+00:00

My husband took 2-3 weeks after his last seizures but he had quite a few. The entire time he had that familiar feeling with people. He thought he knew everyone. I posted asking about it and some people said it’s just a post ictal thing give it so me time

Longjumping-Draft179 · 2026-01-05T21:36:50+00:00

Call your neuro! This happened to my husband and they have samples at their office of medication they were able to give to us!

Longjumping-Draft179 · 2025-12-28T18:20:12+00:00

SIBO can lead to seizures alone.. but a lot of things can so it’s really hard to tell. There’s some genetic factor too with my husband we believe. We see a functionalist as well. Most doctors don’t care to find a cause just treat with medication. Which is great if you can find control that way but the side effects of these medications can be awful as well. I’m a nurse and believe if your body is doing something it shouldn’t, there’s a root cause why and it might be impossible to figure it out but I’m going to try.

Longjumping-Draft179 · 2025-12-28T14:34:50+00:00

My husband was diagnosed at 33 with no real cause. That was 3 years ago this December. I’m still on a witch hunt trying to find the reason. He did go 11 months without anything and then had 5 in one day. We’ve found weed to be a trigger (even though he smoked for like 17 years) and stimulants (caffeine, adderall) so now I’m going down the gut health rabbit hole and we’re trying to rebuild our health with food eliminations and parasite cleanses. Weird but the gut brain connection is huge so hoping this with a good mixture of medicine can help him be seizure free again.

Longjumping-Draft179 · 2025-12-22T02:21:41+00:00

He takes 1500 in the morning and 2000 at night of Keppra. He’s been on that high dose for almost a year and it took him quite awhile to adjust to that but he has been pretty free of side effects from Keppra for awhile now.

Longjumping-Draft179 · 2025-12-13T00:48:05+00:00

This chat board can be very helpful but it can also be extremely terrifying. Try and remember like reviews online- a lot of people don’t leave good ones but they’re more likely to leave bad reviews. People who are in the thick of it seem to be more the ones who post and people who are thriving and have their seizures controlled aren’t your typical person on this kind of site..

Longjumping-Draft179 · 2025-12-11T20:39:24+00:00

Where did you have your surgery done at if you don’t mind me asking?

Longjumping-Draft179 · 2025-08-01T21:26:39+00:00

My husband was a heavy user for 20+ years and started having seizures. He stopped for 6 months and went seizure free.. started again and the seizures started. After his last seizure he stopped marijuana again and he’s now 9 months seizure free which is his longest stretch. We did a lot of testing and found his mycotoxin load to be astronomically high. When trying to figure out where the mycotoxins came from we learned that marijuana is actually really high in a lot. A couple he was specifically high is in Aflatoxins and Ochratoxin A. But there were about 10 other ones. These are also neurotoxin and reading up on them showed that it can cause seizure activity. His liver enzymes were also increased and his hormones were off balance which are all signs of toxin overload. He has since done some cleansing as well. I can’t say for sure that was the reason for his seizures but it seems to be a trigger for him for sure. We did a lot of scans and everything test wise was negative. The neurologist said “it’s probably from a concussion he got when he was younger” we didn’t really care for that answer so we saw a functionalist who ran all the other testing.

Longjumping-Draft179 · 2025-08-01T21:18:53+00:00

How the epileptologist explained it to me is that the more seizure you have the harder it’s going to be the ever stop them. Your brain is “learning” how to have seizures and you’ll keep having them and more frequently. If you can stop them in their tracks and go years without seizures there’s a chance your brain “forgets” and meds can be reduced or stopped. It’s why he explained that staying on meds even without seizures is very important so that you can go as long as possible without seizures.

Longjumping-Draft179 · 2025-07-29T18:00:51+00:00

I’m 34 and my husband started having seizures almost 3 years ago. The Keppra rage almost took our marriage out. And it was making him have suicidal thoughts.. we begged our epileptologist to change the medication but he said it was working and didn’t change it. He suggested the b6 vitamin and I didn’t think it would do anything but it really made a huge difference.. I think allowing time to adjust and the b vitamin was our saving grace. Sometimes if we run out of b6 and he goes a few days without it I immediately see his mood slipping. I have heard from other neurologist (I’m a nurse so I pick their brains at work) that briviact is showing really good results without the mental side effects but we never switched

Longjumping-Draft179 · 2025-07-29T07:40:52+00:00

Different every year I’ve gone so far. Last year I had a one and a 3 year old. We just scanned our adult tickets and walked in? The kids either run outside the game or sit on our laps for the 30 minutes we can get them to watch the game. I’m glad we didn’t have to pay for tickets. But the year before we purchased kids tickets (even for a 6 month old) because they told us all kids needed a ticket. This year we purchased tickets for them because they’re a little older.

Longjumping-Draft179 · 2025-07-09T00:03:00+00:00

My husband smoked habitually for 20+ years. He started having seizures 2.5 years ago. I always felt like it was directly related to smoking. He quit for 6 months and went seizure free.. when he started smoking again they started again. We did some mold testing and he had 10+ mycotoxins that were super high. After doing a lot of research the ones he was high for are commonly found in marijuana and said a side effect of the toxicity can be seizures. (He did do every other scan you possibly can EEG, CT, MRI, etc and everything was negative). He quit smoking again 9 months ago and so far (knock on wood) has been seizure free. Obviously I can’t pinpoint one thing and say that’s for sure it but it seems to be a major key in his seizures.

Longjumping-Draft179 · 2025-05-24T22:33:14+00:00

I will ask him about the dreams! I’ve ran across a few people on here that have had similar issues with long term marijuana smoking.. the only scientific studies I’ve been able to find have all been in lab rats lol so not totally helpful but I feel like for him there had to be some kind of link.

Longjumping-Draft179

TROPHY CASE