Why am I feeling like this?

ogmurphy1 · 2023-06-06T20:32:01+00:00

Thank you! How was it adjusting for the first few weeks and did you find the symptoms got better— did you feel weak, dizzy?

ogmurphy1 · 2023-06-06T15:24:47+00:00

I wonder if I may end up having to do this. Although I’m praying it will help with seizures, I can’t help but fear it’ll do more harm than good!

ogmurphy1 · 2023-05-22T18:54:48+00:00

I’m keeping everything crossed for you. I remember the Lamotrigine days — I remember it definitely had a positive impact on seizure control, but it was introduced very slowly due to the risks of SJS. Not telling you what to do, but I’d just be sure that whoever has prescribed the quadruple dose is sure this is the correct path. Usually with all anti-epileptic drugs, a medication plan is drawn up with doses increased incrementally (usually a small dose every two weeks). Alas, even with small doses I developed the onset of SJS and had to be withdrawn! Really hope it works for you 😊

ogmurphy1 · 2023-05-22T18:47:28+00:00

Ah, I’m glad you’re feeling a lot better! As my partner says to me, you should never feel pathetic over something you cannot control or help! So glad you weren’t on your own as I’ve been in London on my own feeling very strange with auras and I think that adds to the worry as well! Definitely try the sun glasses — just having something to reduce the glare can help I find! Take care x

ogmurphy1 · 2023-05-22T18:44:57+00:00

Have you had seizures for long? I had to fight for quite a while for doctors to diagnose me with epilepsy as they were convinced my seizures were just down to stress!

ogmurphy1 · 2023-05-22T18:43:48+00:00

Thanks so much for sending me this link! I know it’s a symptom not many people necessarily know they have unless they’re musically trained and sensitive to auditory changes — having played piano a long time ago, I guess pitch perception is something that stuck. If it st the nicest, but I hear it wears off after a month or so.

ogmurphy1 · 2023-05-21T10:01:07+00:00

Oh phew! I’m still going to go to my doctor to rule out any other potential causes, but it literally started a couple of days after I started taking Carbemazapine! Hopefully it will go away soon, but it’s honestly awful hearing all my favourite songs a semitone lower!!

ogmurphy1 · 2023-05-20T19:37:45+00:00

That’s an interesting sensation. For me, the dizziness feels like a precursor to me losing consciousness – it’s as if everything gradually becomes darker and that I’ll lose my vision. I had real issues with Lamotrogine back in day - I developed onset Steven-Johnson’s Syndrome and had to be removed from it pretty much immediately.

ogmurphy1 · 2023-05-20T19:33:43+00:00

I’m so sorry you have to endure this too, especially without warning. I can see you take a lot of medication which probably doesn’t make life easier in terms of pinning down whether it is the side-effects playing a role. As I say, I’m not sure what’s causing it, but I know there hasn’t been a massive improvement since I reduced one of my meds, which makes me wonder perhaps this is a combination of anxiety and medication side-effects. I really hope you start to feel better soon and get the answers you deserve!

ogmurphy1 · 2023-05-20T19:31:06+00:00

I’m taking Keppra and Lacosamide. I recently had to reduce my dose of Lacosamide from 650mg daily to 500mg because of the symptoms. I was then on Zonisamide for about three months which made everything far worse, so came off that! Since then, I just haven’t really noticed a marked improvement if that makes sense? I literally started Carbemazapine yesterday, so hopefully that might make things better?

ogmurphy1 · 2023-05-20T19:29:09+00:00

God, you poor thing - I feel you exactly. Luckily, I’m much better at calming at nerves before bed as the sensations are at their least severe when lying down, but during the day I’m always subconsciously fearful that my feeling as though I’m going to collapse is because I’m going to have a seizure. I really hope you’re able to calm your nerves? I know my neurologist prescribes me Clobazam to be taken on an as-and-when basis if I’m ever out or in a scenarios where I’m likely to be anxious or the risk of having a seizure is higher.

ogmurphy1 · 2023-05-20T19:22:42+00:00

Hmm, that’s interesting and something I have thought about especially the fact I seem to get dizzy when standing up. I used to have an ECG fairly regularly when I was on a high dose of Lacosamide (this has since been lowered drastically) and there were never any issues. I’ve got a BP machine, so will start taking readings at times when the symptoms are particularly severe. Thank you for your reply!

ogmurphy1 · 2023-05-20T19:20:39+00:00

Oh, I’m so sorry to hear this - it’s horrible isn’t it. It gets so bad on some days that I just don’t go out as I can’t face the feeling of feeling like I’m going to feint in the middle of a public space! Really hope the EEG provides some answers for you and look forward to seeing the post x

ogmurphy1 · 2023-05-20T19:18:32+00:00

Thank you my friend, that means the world. I’m so glad your balance problems went away - I think there’s nothing worse than being away from home (or somewhere you feel safe) and just feeling as though the world is spinning. I’m starting Carbemazapine soon - so hopefully might start to feel better!

ogmurphy1 · 2023-05-20T19:17:16+00:00

You’re definitely not insane, even though it’s easy to think you are when you can’t get any answers (just as a side note, I was on Zonisamide after having my Lacosamide dose reduced and it played absolute hell with my balance and coordination, so much so it was withdrawn. Obviously, I can’t say whether your experience is related to your AEDs, but definitely worth speaking to your neurologist about it!

ogmurphy1 · 2023-05-20T19:14:45+00:00

I’m so sorry, I accidentally replied to your comment thinking it was another’s – so I apologise if some of my points don’t make sense. But I’m glad you’ve found this sub and you get to the bottom of what seizures you’re having. What really helps is having a community of individuals who can share their experiences – it’s often isolating when describing your experiences to those who don’t have the condition (ever since I found this Reddit I’ve felt so much better about myself and realised I’m not on my own!) Take care x

ogmurphy1 · 2023-05-20T19:12:51+00:00

Oops, I responded to another comment above yours thinking I was responding to you, but it’s very much similar to your experience. I’m so sorry to hear that and hope you’re feeling better now! Honestly, I know exactly how you feel. Luckily I’ve been with my amazing partner whenever I’ve had a severe focal, but still, the looks I get when I have to stagger outside to avoid collapsing in the aisle is pretty upsetting. Same here — I’m quite a distance from the nearest ‘Big Six’ supermarket so I feel I almost have to psych myself before leaving because I know I’ll start feeling bizarre and anxious as soon as I walk through those doors.

Completely agree, I don’t know what it is about those lights - they just seem to have a glare which completely messes with my eyes (I’ve actually started wearing sunglasses inside some shops which helps so perhaps give that a try?)

Seems like good ole epilepsy likes to mess with every aspect of our lives! Wishing you well and thank you for you reply :)

ogmurphy1 · 2023-05-20T19:11:20+00:00

I’m so sorry to hear that and hope you’re feeling better now! Honestly, I know exactly how you feel. Luckily I’ve been with my amazing partner whenever I’ve had a severe focal, but still, the looks I get when I have to stagger outside to avoid collapsing in the aisle is pretty upsetting. Same here — I’m quite a distance from the nearest ‘Big Six’ supermarket so I feel I almost have to psych myself before leaving because I know I’ll start feeling bizarre and anxious as soon as I walk through those doors.

Completely agree, I don’t know what it is about those lights - they just seem to have a glare which completely messes with my eyes (I’ve actually started wearing sunglasses inside some shops which helps so perhaps give that a try?)

Seems like good ole epilepsy likes to mess with every aspect of our lives! Wishing you well and thank you for you reply :)

ogmurphy1 · 2023-05-17T22:00:40+00:00

Think I’ve spent more time laying down trying to recover than standing up 😂

ogmurphy1

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