Having issues with seizure activity it feels like.

[Sophiedw]

Hey Ben, how are you now? Have you got any companies like this one that offer a cheap amino acid panel? https://www.cerascreen.co.uk/produc...ytl2l-Z-sqqzWecS1P02K1pVidmwb8VxoCFNMQAvD_BwE It offers a lot of information for not loads of money. I’ve found my brain swirls/ general nastiness involving sleep/wake and other neural phenomena to all be linked to level or lack of aminos. Serine/glycine/bcaas/tryptophan/lysine/glutamine so far all bring on different symptoms and when I tested the levels were extremely deranged. With aminos you always have to supplement the full spec and then increase the ones that are low or it pushes them all out of balance in various Horrible ways. You should be aiming for 60-70% in range on all those aminos even if you just started with a very small crumb of them. Hope you’re doing ok as can be. I know that horror of neither being able to rest or do anything.

 

[bensmith]

Thanks. Not great sad to say. Thanks i will consider the panel. I get hppd from bcaa, not sure aboit the others buy ill work on it thanks!

and def have insane issues with dream now too its so bad. And sleep
Wake
Too’

 

[GlassCannonLife]

@GlassCannonLife - i havent teied those, isnt ara for nerves?

i cant take bcaas(hppd) and havent hear of the other. I will think of the other

@Sophiedw @Learner1 i have reached out to hppd comminity on l-serine, amino acids are trouble usually though. Ill talk to my doctor about kuvan, hopefully she will let me try.

i really hope i can figure something out i am very afraid. I cant rest anymore, i think its worse than pushing atm because my brain is so over stimulated by silence and darkness. Either makes me sick seemily. I’m afraid im in a spiral. I need to do somethint but so weak its hard to.

Hey man, sorry I missed this - been a few rough days.

Yeah ara-290 helps nerve regeneration, it might be a bit too experimental in your current state. I think it has a few other generally positive effects (sorry can't look things up right now) but it's maybe something you could consider later.

The pregnenolone has been the mildest thing that helps me the most any time I crash/have to over-extend.

I just had a thought though - have you tried a keto diet? It again might be too challenging right now but I remember it is quite successful in preventing seizures.

Also just wanted to say you can do this! I've been thinking of you a lot since I first saw this thread. I hope you can find something that works but hang in there in the interim, you're an inspiration!

 

[bensmith]

Thanks. My sueziures have gotten slightly better but my overall health has really plummeted. Have so many issues many of new, at least constantly. Hoping for ron davis is kind if all i have left it feels like. Feel really bad for falling out of mod lime i was, my life is over really. Just a misery sack now. I honestly feel completely hopeless and doomed atm. I dont know how long i have.

Cant do keto because mcas, but did like it in the past. Hope
You fee better.

 

[GlassCannonLife]

Thanks. My sueziures have gotten slightly better but my overall health has really plummeted. Have so many issues many of new, at least constantly. Hoping for ron davis is kind if all i have left it feels like. Feel really bad for falling out of mod lime i was, my life is over really. Just a misery sack now. I honestly feel completely hopeless and doomed atm. I dont know how long i have.

Cant do keto because mcas, but did like it in the past. Hope
You fee better.

Please don't lose hope! You never know when a cure might emerge. Your condition will hopefully stabilise a bit more with time as well.

You could possibly try mindfulness meditation? I use the Waking Up app, I find it helps me calm my mind, and I believe studies have shown actual changes in people's brain waves after meditating for a long time - nothing magical of course but every little bit helps.

 

[Sophiedw]

I agree with strawberry on the other thread. If your fits have got a little better then everything might continue to stabilise little by little. I find reminding myself I’m not about to die it’s just my brain telling me I am quite comforting. It really does help. Easier said than done of course if our terror brain areas are over activated. Take care.