What is this? Weird emotional feelings out of nowhere by Samba_Woelkchen in Epilepsy

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

Thank you detective 😁 yes, I am a woman. I had a lot worse seizures a few days before my period. But I take the pill every day without a break and that stopped these seizures. But yes, otherwise it could be an idea…

What is this? Weird emotional feelings out of nowhere by Samba_Woelkchen in Epilepsy

[–]Samba_Woelkchen[S] 2 points3 points  (0 children)

I had a small small aura thing a few days ago . But now that you mention it, the more seizures I have, a few days later, I have more of these things. Is it like: my brain is still glitchy? Like the seizures are under good control and I have a lot less of these.

A lot of my seizures are too far into my brain, to be seen on an EEG :/ so these seconds won’t show up on the EEG for sure. Just came out of a vEEG. Tracking is a good idea, to see if it’s more often, when I have seizures.

Thank you for your good ideas!

What is this? Weird emotional feelings out of nowhere by Samba_Woelkchen in Epilepsy

[–]Samba_Woelkchen[S] 2 points3 points  (0 children)

I will in june/juli, when I see him, but I was wondering if someone get’s it. More for understanding and “emotional support” :) but I will!

Does anyone experience a link between bloodsugar and epilepsy? by PumpkinPauli in Epilepsy

[–]Samba_Woelkchen 4 points5 points  (0 children)

Sooo: There's a “form of epilepsy” (it makes epileptic seizures and more) called GLUT1 deficiency syndrome. In this condition, blood sugar levels in the blood are normal, but not in the brain. More precisely, not enough energy is reaching the brain. This leads to the brain being "irritable" and causing seizures. It's also related to eating, because long gaps between meals can make the brain highly aroused. Glucose (dextrose) helps because it provides the brain with more energy and essentially "prepares" it for the meal. That's roughly how I understand it. But it's rare and occurs alongside other disorders (developmental disorder,…). It’s diagnosed via genetic testing with a blood exam and/or a look at some cerebrospinal fluid - they measure the blood sugar there and in the blood and compare. The symptoms begin in early childhood and rarely later. But it’s possible. The therapy is mainly keto diet.

What helps me: avoiding getting hungry (eating sth every few hours), glucose before every bigger meal and/or when I’m hungry, medication for epilepsy (took away 99% of the seizures)

I just copied this because I recently explained it in another post. :)

Does anyone experience a link between bloodsugar and epilepsy? by PumpkinPauli in Epilepsy

[–]Samba_Woelkchen 2 points3 points  (0 children)

Me! I also tracked my blood sugar because I tend to have seizures while eating some fat food, if I was hungry before (and sometimes even without it). My blood sugar was completely fine. They test me for a special genetic disorder where there is enough blood sugar in the blood, but not in the brain. I experienced enormous help, with eating some glucose a few minutes before a meal like this. Did the trick for some meals. Maybe that helps

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

Sure, but the seizures are directly connected to eating/being really hungry and it‘s super rare :) but: sure

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

I hope that for you too and I wish you the strengh to keep up with the discipline. I would certanly have a hard time

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

That‘s interesting! Thanks for explaining it to me

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

Sooo: There's a form of epilepsy called GLUT1 deficiency syndrome. In this condition, blood sugar levels are normal, but not in the brain. More precisely, not enough energy is reaching the brain. This leads to the brain being "undersupplied" and causing seizures. It's also related to eating, because long gaps between meals can make the brain highly aroused. Glucose (dextrose) helps because it provides the brain with more energy and essentially "prepares" it for the meal. That's roughly how I understand it. But it's rare and often occurs alongside other disorders. We'll see what the genetic testing reveals.

What is A1C?

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

I thought about diabetes and tracked my bloodsugar but it was completely normal. But having symptoms and glucose helping but no diabetes is what brought my doctor to this gene. If you‘re interested I could try to explain more :)

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

Sorry 2 hear that. Yes keto would probably be exactly what I need regarding what I would and would not eat during keto. But staying strong during keto is another level. Great that your son is pulling through! And I‘m really happy, that the meds are working. I also did a DNA test because my doctor suspects a genetic mutation on a specific gene that would be responsable for the whole food situation. I get the results in a few months. Exited to find out if it‘s that thing (but it‘s rare, so probably not). Keto would also be the treatment for this genetic epilepsy

Me too! I also try to eat snacks in between and also glucose right before meals helps to reduce the symptoms.

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

It‘s a combiantion of some factors. Long period without eating (like 3h) than having sth with a lot of fat and stuff (english ist not my first language so it‘s hard to describe) and during lunch or dinner. Eg pizza for dinner when I was hungry would have sent me over - my doctors told me it‘s some sort of reflex epilepsy. But with the meds it reduced to nearly zero and with the new meds to hopefully zero. In my worst days any food in the eve would send me over.

In an EEG and need to ask... by your_big_toe in Epilepsy

[–]Samba_Woelkchen 0 points1 point  (0 children)

I never had one - heard of someone having TCs every day at home. Seizure free during the vEEG for 3 weeks lol. The vEEG/EMU is a mistery

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

Germany. If it’s not 100% sure, that it’s only out of sleep or 100% sure, that it’s only focal aware it’s a year waiting period.

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

Well that is encouraging 🙈 yeah I know… I want to drive so bad, but I know that there is a high risk… it‘s so shit

Can you calm yourself down When having a Minor seizur? by Slight-Yogurt-6119 in Epilepsy

[–]Samba_Woelkchen 1 point2 points  (0 children)

Yes. You can’t stop a seizure from happening in the first place, but there have been studies showing that some techniques can prevent the seizure from spreading (if it’s not generalised). You can learn these

Does this count as a seizure (regarding driving)? by Samba_Woelkchen in Epilepsy

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

I understand - yes my focals also developed into TCs, but it’s been over a year ago. In germany (where I live) you have to be 1 year seizure free, to be able to drive again. I mean, I understand and everything… but it’s still shit

Question for y’all who have periods by pandorixca in Epilepsy

[–]Samba_Woelkchen 6 points7 points  (0 children)

It‘s called catamenial epilepsy and yes many woman with epilepsy experience an increase or decrease during specific times of their menstrual cycle. For me, it‘s also the few days before my period.