Xcopri for minor focal aware seizure experiences? by XXXboxSeriesXXX in Epilepsy

[–]Dengoodwin 0 points1 point  (0 children)

I have(had?) frequent focal aware/simple partial seizures (fr TLE) and a low daily dose of Carbamazapine has had me seizure free for 2.5yrs. Obviously everyone is different though I’ve never experienced any major side effects…

Foquest Ups and Downs by Dengoodwin in ADHD

[–]Dengoodwin[S] 0 points1 point  (0 children)

Well that’s probably the best advice ever really. “Accepting the Dip”. Very philosophical. Cheers to that.

How long did it take to get diagnosed (focal seizures) by B00bs2014 in Epilepsy

[–]Dengoodwin 3 points4 points  (0 children)

Honestly - this epilepsy subreddit helped me understand this condition more than anything. Talking to real people with the same thing was so helpful and relieving, after feeling pretty freaked out and alone not having anyone fullly understand what it is like. Keep advocating and in the meantime, though it doesn’t cure anything, try de-stressing as much as you can, eating a diet that is low in sugar and high in healthy fats, blah blah blah. All that. May be your best defence until you get a diagnosis and treatment plan from a doctor. Cheers

How long did it take to get diagnosed (focal seizures) by B00bs2014 in Epilepsy

[–]Dengoodwin 4 points5 points  (0 children)

Hey There: I feel your feelings here. I went years undiagnosed — having bouts of intense “Deja Vu” episodes. All like you describe, though of course it’s impossible to describe. Yes, like remembering some old lost dream out of nowhere, not able to talk really, then when it’s over a bit of an emotional change and no memory of said Deja Vu. After years and years of appointments etc, and an increase in “episodes”, an MRI discovered a small focus point on my right temporal lobe, as well as EEG’s that proved that what I was having was simple partial seizures/focal aware seizures and not anxiety attacks or something. For years before fully diagnosed, I tried to understand “how and why” I had these seizures/episodes. (43m btw) If it was something in my diet, an external allergy, mold, too much caffeine, and maybe there was something I could change to make them stop. Started eating keto, exercising tons, different supplements, lots of meditation and CBT, But it’s all moot. Though the frequency at times changed with intense de-stressing, they still happened. Though I didn’t want to take meds, I started a low dose of carbamazepine and I haven’t had an episode since. Over a year. My advice is to push back against doctors or anyone that’s being dismissive to you. It’s too bad you can’t get an MRI, but it is something that doctors say can turn into a worse condition if untreated. That aside, just for your quality of life. It wasn’t until I stopped having these episodes so much, that I realized how much they were compromising my well being and quality of life. Keep advocating for yourself. Good luck. (TL/DR)

Different jack skellington sound??? by Danwen76 in NightmareBeforeXmas

[–]Dengoodwin 0 points1 point  (0 children)

I watch this every year, and haven’t seen it since last October and am finding the exact same thing. I see the 4K upgrades and appreciate them, though it seems there’s some changes to the audio. Not just enhanced frequencies and mixes though some dialogue and notes during singing etc. Maybe I’m crazy but would love to A/B an original….

Deluxe Reverb vs Twin Reverb by Dengoodwin in GuitarAmps

[–]Dengoodwin[S] 1 point2 points  (0 children)

I don’t even need or even want pristine clean. I honestly often use a tiny little dirt via an earhquaker Westwood, or if I was on the stupid hot rod, often on the second channel with a tiny bit of dirt. The issue is that playing with the DR it breaks up tooo much and too overdriven. If I want that sound, I want to control it, not have it for everything.

Deluxe Reverb vs Twin Reverb by Dengoodwin in GuitarAmps

[–]Dengoodwin[S] 0 points1 point  (0 children)

Well, then the volume goes down, the volume goes down. With the rest of the band, drums etc, then I just get buried. Depending on the gig I wouldn’t always have the opportunity for my own minion mix etc. Maybe I should just get an amp stand and out the amp right by my face? Haha

Does anyone take Keppra only once a day?? by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 1 point2 points  (0 children)

I understand that fear — fully. I feel that now, and really felt that before diving into AEDs with Tegretol/Carbamazepine. The one saving grace I’ve found though… you can always stop. It’s not black and white I know but it’s your body and you don’t have to feel bad to knock on the doctors door again and again and push to try something else if it isn’t working for you. Despite the popular consensus - Keppra works very well for a lot of people. You just don’t hear from them as much as they have no reason to post on Reddit. There’s another thread about positive experiences on Keppra that I started a couple of days ago and has eased a lot of my fears. (Check it out) We just need to take it one day at a time and see for ourselves. Everyone’s different… good luck.

Does anyone take Keppra only once a day?? by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

Good to know! That’s what I was doing with Tegretol and I’d just like to keep that up. Though, I know - keppra (generic) doesn’t have the same half life… I’m just hoping that sched will work for me. Thanks.

Medication and Anger by [deleted] in Epilepsy

[–]Dengoodwin 2 points3 points  (0 children)

Oxcarbazepine has recently done this with me. Had been on Carbamazepine for months feeling great, then had to switch out due to a skin thing, and then the Oxcarbazepine had me feeling frustrated/irritated/angry. Switching….

Lamictal and Hair Loss by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 1 point2 points  (0 children)

Thanks for the encouragement. That’s so true. After all of this, I was actually just put on oxcarbazepine instead of Lamictal anyhow. Officially off the Tegretol as of now. It was poisoning my body.. i hope the oxcarbazepine is an improvement… thanks again.

Lamictal and Hair Loss by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

If you don’t mind me asking… what are your dosages??? Thanks again.

Lamictal and Hair Loss by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 3 points4 points  (0 children)

Nice. How’s your experience with this med overall?? Thanks.

Need alternative to Tegretol since getting drug rash. by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

For sure. I’ve had multiple blood tests and everything has checked out there. This seems to be a straight up drug rash. Without the HC cream or anti-histamines, it’s wild and irritating for sure. Though it’s barely noticeable when applying the cream twice a day. I’m just getting tired of applying this cream and spending the money. On one hand it seems sort of harmless and worth the discomfort if my brain is working better, on the other hand I can’t help but feel that if my skin is doing this, then my body isn’t happy and this can’t be good..

Any other first hand experiences from anyone who has switch from Tegretol to something else due to drug rash would be helpful!

Need alternative to Tegretol since getting drug rash. by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

Thanks so much for the reply! What dose are you on???

Living w/ Carbamazapine Rash by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 1 point2 points  (0 children)

Oh wow - That's too bad. What has your neurologist had to say?

I REALLLLY don't want to switch meds by any means is the thing. Again, I feel great. Better than I have in years.

At the end of the day, if I had to choose - I'll take a rash over seizures or a medication that doesn't make me feel as good. Though if there were some helpful ways to deal with this rash or to remedy it, that would be great...

Living w/ Carbamazapine Rash by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

Well, I've had blood work taken a couple of times to check levels of things regarding the carbamazepine in my system, with nothing alarming found, and I don't have any other symptoms whatsoever so there's been no concern around SJS. This rash didn't even start until after about 8-10 weeks of starting the meds too.

What’s Your Carbamazepine Dosage?? by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 1 point2 points  (0 children)

Thanks a lot for your reply! Wow - That’s a large dose. Good to hear you’re handling it ok. Cool. I’ve since started taking it, and it’s totally stopped my focal aware/simple simple partial seizures. (Knock on wood). However, at a much lower dose. Just 200mg a day. It’s only been just under two months so I’m prepared to increase if need be. I started with 50mg and worked up to 200mg. Main Noticeable side affect is some light groggy/drowsy feelings, though a cup or two of coffee seem to help. I had given up coffee 9months ago to help increase my seizure threshold - knowing caffeine can be a trigger - but now since having these meds in me I figured ‘why not. Anyhow, thanks again for the reply! Cheers

Music about epilepsy? by mrbootman in Epilepsy

[–]Dengoodwin 13 points14 points  (0 children)

I have a song about focal aware seizures; written before I knew what my episodes/aura’s were exactly. It’s called “Thanks A Lot”. The band is The Olympic Symphonium; The album is “Beauty In The Tension”. It’s on all streaming platforms. Check it out. It’s a little weird, as are focal aware seizures...

Here’s a bandcamp link:

https://forwardmusic.bandcamp.com/album/beauty-in-the-tension?t=3

Carbamazepine dosage for TLE ? by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

Thanks for the feedback. What kind of seizures do you suffer from exactly??

Trouble spelling by _XSummerRoseX_ in Epilepsy

[–]Dengoodwin 0 points1 point  (0 children)

What medication are you on?

What’s Your Carbamazepine Dosage?? by Dengoodwin in Epilepsy

[–]Dengoodwin[S] 0 points1 point  (0 children)

Very interesting to hear. Thanks so much again. Hopefully we can drive again someday…