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sakabatou

(43,250 posts)
Fri Mar 15, 2024, 12:06 AM Mar 2024

I'm actually unsure if this belongs here or not, but I've been suffering from seizures since the end of '06

This is due to a TBI from either a bacteria or virus. I've been on different medications throughout this time. The ones which I've been on the longest mostly work (along with other meds), but I've had full body seizures which have broken through.

It's... scary when I have them (the large ones): a lapse in memory and uncontrolled movement of my body. I only know when I've had one when someone else has told me. However, I've had smaller versions, usually affect anything from just my eyesight to my limbs, but I'm still awake.

The good thing is that I have people around me to help when I have them. The bad thing is I'm unable to travel far. Hell, I'm unsure if I can go outside my city. This has affected what I can do, usually events with my family, but it's also put some strain on my relationship with my girlfriend (it's long distance).

Most days, I'm fine. Other days, I'm frustrated by what I can't do. At least I have the internet and DU. If you wanna know more detail, send a PM.

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I'm actually unsure if this belongs here or not, but I've been suffering from seizures since the end of '06 (Original Post) sakabatou Mar 2024 OP
Goodness. I am sorry to hear that. Hopefully, there is or will be a medication that will completely LoisB Mar 2024 #1
I hope so too, but no medication has even touched the small ones I have sakabatou Mar 2024 #5
Take care Dear_Prudence Mar 2024 #2
I have a subscription to Audible, so that helps. sakabatou Mar 2024 #6
How frequent are the seizures sunnybrook Mar 2024 #3
The small ones are daily, the big ones are two to three a year sakabatou Mar 2024 #7
i'm so sorry to hear this. mopinko Mar 2024 #4
Let me think sakabatou Mar 2024 #8
a lot of epilepsy meds r also psyche meds. mopinko Mar 2024 #9
AFAIK, none of the meds I take for epilepsy are psych meds sakabatou Mar 2024 #11
well, it's possible a pharma dna test wd still help. mopinko Mar 2024 #13
I'm sorry XanaDUer2 Mar 2024 #10
It's more annoying than challenging. sakabatou Mar 2024 #12
I knew someone who had the big ones scipan Mar 2024 #14
I usually have auras before I have one, but sometimes, there's nothing sakabatou Mar 2024 #15

LoisB

(9,020 posts)
1. Goodness. I am sorry to hear that. Hopefully, there is or will be a medication that will completely
Fri Mar 15, 2024, 12:58 AM
Mar 2024

control them. Hugs.

sakabatou

(43,250 posts)
5. I hope so too, but no medication has even touched the small ones I have
Fri Mar 15, 2024, 07:32 AM
Mar 2024

The big ones are almost controlled (2 or 3 a year).

Dear_Prudence

(838 posts)
2. Take care
Fri Mar 15, 2024, 01:11 AM
Mar 2024

You are living with some very serious challenges. I am glad you have people around you. I also enjoy the internet and DU. Plus, our public library has audio books that can be entertaining, inspirational, or just relaxing. I listen to them on my Android phone. I wish you all the best.

sunnybrook

(1,232 posts)
3. How frequent are the seizures
Fri Mar 15, 2024, 03:02 AM
Mar 2024

I also have epilepsy. For over 40 years. I also have both types although it started more with the grand mal seizures that were nocturnal. For me meds helped. I have in recent years gone a great amount of time without the grand mal, whereas I used to have them frequently. You are more vulnerable to them if run down or tired.

Anyway I hope your medical team is able to help you get them under control. It sounds like they are extremely disruptive to your daily life. I hope they can find a medication that controls the seizures with minimal side effects.

mopinko

(71,952 posts)
4. i'm so sorry to hear this.
Fri Mar 15, 2024, 05:00 AM
Mar 2024

it can b such a crap shoot. i dont know if it wd help, but i know re psyche meds, there is dna testing that can narrow it down.
is mmj legal where u r? i know it’s helpful for some ppl.

best of luck. it’s a scary disease. i had it after a head injury as a kid and was never dx’d. my youngest had the same, but it hung on for them. took 15 yrs to figure it out, but only after a dx of ptsd. they had a hard time finding the right meds.
the therapy for ptsd is rly inappropriate for someone who doesnt have it. did a lot of damage.

hang in there.

sakabatou

(43,250 posts)
8. Let me think
Fri Mar 15, 2024, 07:40 AM
Mar 2024

I've never used psych meds, unless it was for misdiagnosed GAD*, nor weed (though it's legal here).

*Generalized Anxiety Disorder

mopinko

(71,952 posts)
9. a lot of epilepsy meds r also psyche meds.
Fri Mar 15, 2024, 08:47 AM
Mar 2024

not sure how many of them r prescribed for both, but i know a couple bp drugs were developed for epilepsy.

mopinko

(71,952 posts)
13. well, it's possible a pharma dna test wd still help.
Fri Mar 15, 2024, 02:15 PM
Mar 2024

i dont actually know what all they test for.

sakabatou

(43,250 posts)
12. It's more annoying than challenging.
Fri Mar 15, 2024, 12:22 PM
Mar 2024

The challenging part is when the medium to big ones hit.

scipan

(2,652 posts)
14. I knew someone who had the big ones
Fri Mar 15, 2024, 05:56 PM
Mar 2024

He had a beautiful guide dog that was always there and could sense when one was coming on, so he could prepare himself.

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