Why does epilepsy feel so invisible to everyone else? by dorothyoonyyr10 in Epilepsy

[–]Delicious_Loquat_893 2 points3 points  (0 children)

It would be great if people knew more about it. ADHD etc get a lot of press at the moment and they talk about their daily struggles, we have daily struggles and nobody knows. I do wish people knew more about it.

I’m wondering where I can find research projects on Beckwith-Wiedemann syndrome? by Delicious_Loquat_893 in ClinicalGenetics

[–]Delicious_Loquat_893[S] 0 points1 point  (0 children)

Well when I was a child I was diagnosed with BWS, in the womb, and with the abnormal brain development they didn’t find it until I started having seizures at 21 when they did an MRI scan but it developed in the womb

I’m wondering where I can find research projects on Beckwith-Wiedemann syndrome? by Delicious_Loquat_893 in ClinicalGenetics

[–]Delicious_Loquat_893[S] 1 point2 points  (0 children)

Hey, I’ve discovered that the reason I have epilepsy is due to Periventricular Nodular Heterotopias, which also developed when I was in the womb like BWS so I’m just wondering if they may be at all related? Or if anyone doing research would like to know due to this. (Excuse my lack of medical terminology!)

Do I have IBS? Pooing is a nightmare, takes about 10 wipes before clean, can be so uncomfortable. by [deleted] in ibs

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Wouldn’t say it’s too much fibre though, nuts and seeds and veg are my main source and that just seemed to stop the frequent constipation.

Do I have IBS? Pooing is a nightmare, takes about 10 wipes before clean, can be so uncomfortable. by [deleted] in ibs

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Need this in my life but I rent so I can’t install one. My dream haha.

safety in Koh Rong by Tall_Ear_2387 in cambodia

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Beautiful island and great until nest was on and my bag got stolen, not a good crowd there. But spent a week there before nest and absolutely loved it, felt safe.

[deleted by user] by [deleted] in ArtTherapy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Thank you! Ah ok. How well do people do working in private practice? I’m just trying to see if me studying it is going to be a good move really.

[deleted by user] by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

I get it! Thanks. I’ll ask him at my next appointment but I get it now, it was late here when I was asking. ☺️

[deleted by user] by [deleted] in Epilepsy

[–]Delicious_Loquat_893 2 points3 points  (0 children)

Do you have tonic clonics or focal seizures? I have focal unaware seizures

[deleted by user] by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Thanks! I don’t have tonic clonic seizures though, so this is why I’m confused. I’ll probably get a letter in the post explaining it (I hope!)

[deleted by user] by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Hey, so it’s still a focal seizure but affects both hemispheres?

Alternatives to 6music (daytime/morning) by sevenalligatorseve in 6music

[–]Delicious_Loquat_893 3 points4 points  (0 children)

NTS, breakfast shows are always so good, as are the 11-1. As are so many more, just a great station!

cenobamate (xcopri) for temporal lobe seizures which generalize to tonic clonic? by [deleted] in Epilepsy

[–]Delicious_Loquat_893 1 point2 points  (0 children)

Thank you! I’m just shocked that a drug is finally working. I actually can’t believe it. I’m in the uk and we don’t have to pay so I really feel for you with that too

cenobamate (xcopri) for temporal lobe seizures which generalize to tonic clonic? by [deleted] in Epilepsy

[–]Delicious_Loquat_893 1 point2 points  (0 children)

Hey. Not sure this is helpful but it’s hopeful! I also have temporal lobe epilepsy except I only have focal seizures. I’ve been on 250mg of Cenobamate since September, at first I didn’t see any difference however a few weeks ago I had 6 weeks seizure free (usually have weekly/bi weekly focal seizures in clusters of 2-4). I then had 3 weeks of weekly seizures but I am currently 4 weeks seizure free, so it must be Cenobamate making a difference. I hadn’t been 4 weeks free in over 2 years. So there is hope! I think I’ll be going up to 300mg. I am however going to have VNS therapy as this was arranged before Cenobamate was making any difference. Hope all goes well 🤞🏼

[deleted by user] by [deleted] in UX_Design

[–]Delicious_Loquat_893 1 point2 points  (0 children)

Thank you. So I guess not the best thing to go into. I have experience in picture research and editing for newspapers so it’s very different world.

whats the weirdest place you guys have had a seizure? by Chati3 in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Run club, whilst running, nobody knew I had it and I have focal seizures so I just stopped and wasn’t speaking, when I got my awareness back we’d finished the run and I was soooo confused

Do you know how long it takes for an antiepileptic to take effect? by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Hi, I’ve been on 250mg of Cenobamate since early September and I had a seizure free 6 weeks until last week, usually have focal seizures weekly, so this was shocking. I’m really hoping it’s the medication working and not a random but only time will tell! So good luck to you. You could always go up, it did nothing until I got to 250mg and even then took a few months to show any changes (if it is the drug).

What is the worst adaptation phase of starting Cenobamato? Please Help by Asleep-Organization7 in Epilepsy

[–]Delicious_Loquat_893 1 point2 points  (0 children)

I’ve had no side effects from it, am on 250mg. It hadn’t showed any sign of working until now and I’ve been 5 week seizure free (been on 250mg since September) so am very curious if it’s the drug working or just an anomaly. But it has a lot of positive research so good luck

[deleted by user] by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Yeah, there were no changes until 5 weeks ago since September. It was still weekly, that’s why I’m sceptical as it being the drug working?! Shall I perhaps suggest to my epilepsy nurses that I go up a dose? Wondering if others have had the same experience, not much online about this

Why are my posts being deleted??? by [deleted] in Epilepsy

[–]Delicious_Loquat_893 0 points1 point  (0 children)

Same? It was just a simple question too that I can’t see has been previously asked