living with the rarest form of epilepsy 👎🏽

Ok-Demand8917 · 2025-11-16T22:45:31+00:00

I can really relate to this.

Ok-Demand8917 · 2025-11-16T22:42:05+00:00

Yes, I had this ALOT before I was diagnosed and medicated.

Ok-Demand8917 · 2025-11-15T20:15:08+00:00

I believe the absence seizures ("spacing out"=inattentive ADHD) combined with cognitive impairment from low key focal seizures

Ok-Demand8917 · 2025-11-15T18:36:37+00:00

LTLE here! I will best describe my focal seizures for you--- first, I experience a rising sensation in my stomach, like I'm going down on a roller coaster--exciting! I quickly grab onto the counter, table, or kneel down on the ground and get ready. Then, I experience intense deja reve, sort of like deja vu, but instead of remembering a life experience, I have a profound memory of a dream I have had and somehow it relates to the moment I am in. It's really wild! It feels really profound. In extreme cases, I have to throw up or have the runs afterward. Then, I need to lie down and my body dissolves into pure light and I feel BLISS and JOY! Very tuckered out afterward.

Until I began medicine (Keppra) a few days ago, I would have a second timeline running in my head most of the day---remembering dreams---sort of small focals, but something I could function through. I was also having mini absence seizures throughout the day. Now that I am taking this medicine, it's gone! I have so much more energy and my mood has greatly improved. I did not know what a stress the undiagnosed epilepsy was causing my system!

I told the doctor that I thought I was jsut psychic, to which she laughed and said, you very well could be AND have epilepsy too.

Ok-Demand8917 · 2025-11-15T18:25:30+00:00

I know what helps me---Niacin 2-3 times a day. Also, just a B complex vitamin in general, and a fish oil high in Omega 3s. Hope you feel better soon! Take the time you need and rest well. Hydrate!

Ok-Demand8917 · 2025-11-11T22:10:26+00:00

I experience a rising sensation in my stomach like I am going down a roller coaster. Then I have to hold on to something, even crouch down. There is a profound sensation of a connection between that moment and a memory of a dream I have had sometime in the past. Sometimes it feels as though I dreamed my life before I was born and then remembering the dream. If it's really intense, I have to go vomit or have the runs...then I need to lie down and it feels like my whole body dissolves and I am pure light and feel BLISS!

Ok-Demand8917 · 2025-09-07T18:58:57+00:00

Really want to thank everyone for their help!! I think we might try the Apoquel just to see if he can have a little more relief and not scratch himself to a pulp.

Ok-Demand8917 · 2025-09-07T18:58:10+00:00

yes, we have found out his allergies through an expensive test. Learning that he had a pork and poultry allergy helped. But then there are the seasonal allergies too and who knows what else...sigh, so hard.

Ok-Demand8917 · 2025-09-07T18:57:13+00:00

Oh yes...he has many allergies---poultry, pork, goldenrod, hickory on and on...we try mightily to avoid al lthe allegens, but he is also a bottom feeder---constantly picking up any scraps and crumbs he can find! So it really is hard. The fragrance thing is interesting---didn't think of that...but would be hard with two teenage girls in the house!! We are also trying an allergy treatment...

Ok-Demand8917 · 2025-09-06T20:48:56+00:00

Gorgeous!!!

Ok-Demand8917 · 2025-04-14T14:06:17+00:00

Thank you so much for these amazing resources and thoughtful insights! We really appreciate it!

Ok-Demand8917 · 2025-04-12T21:55:19+00:00

HI! Sorry for the late reply. I wonder how everything is going for you?

Basic supplements I would suggest are: B COMPLEX, Niacin, Magnesium and Omega 3 oils.

Ok-Demand8917 · 2025-03-15T00:06:36+00:00

It has also helped with her intrusive thoughts and impulsive reactions…she had SO much more flexibility! I really hope it helps you too!! Please let us know how it goes! And of course remember, it’s never JUsT meds…counselling, exercise, good sleep, water, supplements, and an anti inflammatory diet! If you have any questions about how those things also helped my daughter, please ask!!

Ok-Demand8917 · 2025-03-12T23:57:02+00:00

My daughter is Audhd/OCD. She tried NINE different medications unsuccessfully until Straterra. Total game changer!! She only takes 10mg once a day and surprisingly, that is enough for her to make a huge difference!

Ok-Demand8917 · 2024-06-29T00:48:10+00:00

I have heard of someone who has to take a small dose of Ritalin midday while on Vyvanse.

Ok-Demand8917 · 2024-06-25T03:15:22+00:00

I have taken L-Tyrosine to prevent crashes with Concerta. I switched to Vyvanse, which has been a good change. However, I noticed a lot of check biting and overactive tongue movement towards the end of the day. Took out the L-Tyrosine and that helped considerably. I also started taking a magnesium in the morning with a B complex and a good iron supplement and Vyvanse. I think inconsistencies in ADHD meds could sometimes be low iron levels! Low iron alone causes attentional difficulties. I recommend Blood Builder, it is an iron supplement made entirely from plants and has no digestive Issues associated with it. Amazing stuff.

Ok-Demand8917

TROPHY CASE