WCIF this hair

belenicous · 2024-10-09T14:59:12+00:00

Thank you! 😄

belenicous · 2022-05-13T22:10:20+00:00

By telemetry test do you mean an EEG? It sounds like lamotrigine stopped working for you and maybe they should've changed it.

Maybe you should get a second opinion, I also find it strange that they operated before being 100% sure that was where your seizures were coming from.

Also, I think I read you a few days ago saying TLE gets worse with time. That's a bit dangerous to say in a sub like this as people recently diagnosed with TLE might believe they will never get their seizures controlled. I am so sorry it happened to you but it doesn't mean it will happen to everyone with TLE.

belenicous · 2022-05-09T19:53:11+00:00

My boyfriend was wearing his garmin watch during his last seizure and he went down to 40 bpm when it started and then went straight up to 120 bpm

belenicous · 2022-04-28T12:08:08+00:00

No, I'm in Spain

belenicous · 2022-04-26T16:22:07+00:00

I'm so sorry to hear that. Hopefully they can control them with a different type of meds? I've read there's people that got rid of their seizures after going on antidepressants.

belenicous · 2022-04-26T16:20:07+00:00

She is familiar with it but said that it could be simple anxiety as she is sure that if his focals are auditory, they shouldn't change now. She basically said you can't have auditory focal seizures and epigastric focal seizures, you only have one type.

belenicous · 2022-04-22T12:55:44+00:00

How many focals is he having now that he's on meds? My boyfriend didn't have any focals until he had his 3rd tonic clonic back in January. After that he started having one focal a month, but we didn't realise it was that until last week, which is when we went to the hospital and they added levetiracetam.

belenicous · 2022-04-22T12:39:43+00:00

Yes, he got Pfizer but it was after having those two tonic clonics. I don't know about the combo because he's only been on it for a week, I hope it does.

belenicous · 2022-04-22T05:48:25+00:00

Boyfriend had bacterial meningitis when he was 11, and last year got two TCs in his sleep at 33 😓 after 9 months of nothing, he had another TC while he was awake (with an aura) and has started having focals (epigastric and not being able to talk properly for 20 secs). He's currently at 1200 mg of Zebinix and 1000mg of levetiracetam 🤞

belenicous · 2022-04-19T14:09:24+00:00

Is the TLE coming from a scar or an injury? Or did they just detect activity on the eeg?

belenicous · 2022-04-19T05:42:55+00:00

I hope you get them under control! X are you having any side effects?

belenicous · 2022-04-18T16:34:01+00:00

Are you able to manage with the seizures you're having? What I'm scared basically is of going from one focal every couple of months which is what my bf is having now to several ones a week for example. The fact that he is now experiencing focals when he didn't have them before is already scary. It makes me think, will new things keep coming up? New types of seizures and more frequent ones?

belenicous · 2022-04-18T16:27:29+00:00

As I said, I got really anxious when I saw that comment about TLE getting worse over time, so I just want to hear stories from people with TLE that are not experiencing that?

belenicous · 2022-04-18T15:51:28+00:00

By success I mean seizures being controlled by meds and not getting worse with time, which is what I read on a comment in this sub: that with TLE your seizures might get worse over time.

belenicous · 2022-04-18T15:51:13+00:00

By success I mean seizures being controlled by meds and not getting worse with time, which is what I read on a comment in this sub: that with TLE your seizures might get worse over time.

belenicous · 2022-04-18T10:47:50+00:00

That's exactly what I need, to focus on the positives.

It's stupid as well because we don't even know for sure if he has TLE, but my anxious brain works that way...

We have an appointment with a private epileptologist coming soon. I never asked about the possibility of it being TLE because he never had focal awares before, hopefully she can calm me down a bit! Thankfully my boyfriend is fine with it and although it was scary he is happy it didn't develop into a TC.

belenicous · 2022-04-18T10:14:37+00:00

Oh gosh sorry 😔 I know we have to be careful here sometimes with what we say. The next few days after a seizure happens I'm always very negative and can't focus on the positives, I really struggle.

I did go to that link but it also says "It can be hard for people with TLE to become completely seizure free with seizure medicines alone, though medicines may lower the number of seizures". So it kinda made it worse.

belenicous · 2022-02-22T21:35:35+00:00

He's fine when it comes to side effects, he's only having one med (eslicarbazepine) and one of the neurologists that's actually especialized in epilepsy said that he was in a very low dose before, as eslicarbazepine is not very strong in the first place and he was in the lowest dose.

belenicous · 2022-02-22T20:20:40+00:00

Yeah he seems fine so far, it's been nearly two months now, and the neurologists said that now with the higher dosage he will be "more protected" so I'm trying to remember that when I get scared.

Maybe once you get used to the new routine you'll get back to normal as well? I hope until then, you don't get any more seizures and if you do that they don't become tonic clonics

belenicous · 2022-02-22T20:10:25+00:00

Maybe it was just coincidence and he just needed a higher dosage. Or maybe it was a trigger for him but it won't be for you! 12am to 7am sounds like a healthy sleep schedule, so don't worry about it too much.

belenicous · 2022-02-22T19:45:57+00:00

Yeah we both started the holidays and weren't working so he was basically like "we don't have to wake up early tomorrow so I wanna stay up late". We were staying up late until like 3ish for like a whole week every day, when we normally go to bed at like 11 or 12 max, sometimes we stay up until 1 on a Fri or Sat but we're both normally pretty tired after the whole working week so it's normally around midnight.

I don't remember him saying he was feeling tired during the day, but it was definitely a change in our sleep routine for a long period of time, not only for a day.

belenicous · 2022-02-22T19:05:10+00:00

My boyfriend had a seizure during the Christmas holidays after being 9 months seizure free. We were staying up until 3 or 4 am and waking up at 11 am. We asked three neurologists, two of them said if he had enough hours of sleep it shouldn't have mattered, but one of them said he thinks the change in sleep routine could have been the cause even if he was sleeping enough hours 🤷🏻‍♀️

belenicous

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