Having issues with seizure activity it feels like.

[bensmith]

I am in a bad place rigjt now. If i rest with my eyes closed(most of my life now) it aggravates my seizure activity. If i stimualte it gives me pem and activates my acitivity too or weakens me making ut worse. So i dont seem to have a way to br anymore. I also grey out when tired lately. I am worried and not exactly sure what to do.

I have hppd which is considered a seizure disorder, and tinnitus. Also just general worse s activity after my last crash.

I was afraid something like this might happen.

Last time i had bad hppd i played viseo games for 6 months till it calmed down, cant do that now.

Feels im in a nuerological crisis a bit. Also this isnt the meds, im pretty good at watching meds. Maybe ivermectin but before my crash it was helping me a ton and i did notnhave these issuesZ. I was on it for 2 months at the time. Bssically before my crash best place i had been in in a year since the hell of cfs bega .

I know its not good to think about fikuture but i need to address this issue, i dont thinknits good to let it fester. I cant imagine doing this long term/letting it worsen. Plus i think s activity builds. And it wouldnt he thenfirst time my me has given me a bad issue that wont resolve unless i find some med to stop it.

I could try kepra but often times that makes hppd worse.

Feel like if i mess this up im pretty much toast. But i feel like i need to do something this is really not good my health is just awful atm.

 

[Judee]

What is Dr Levine advising?

 

[bensmith]

Nothing really. Every time i ask her anything besides “can i try this med” she basically says “maybe you need to find a local doctor”

Maybe not every time but like 75 percent. Anytime i get into the weeds she wants to abandon ship.

im on my 2nd neuro but she told me to excersize to get over long covid, and i havent even brought up hppd(another orphan disease, that neuro should handle maybe). She is even better than my last neuro who took notes on a sticky note : /

i could ask her for seuziure meds maybe but i know she would want a mri and i cant leave the house and she wouldnt hear of it.

 

[crypt0cu1t]

Nothing really. Every time i ask her anything besides “can i try this med” she basically says “maybe you need to find a local doctor”

Maybe not every time but like 75 percent. Anytime i get into the weeds she wants to abandon ship.

Have you done all the antibody panels I suggested and gotten a spinal tap? Your illness sounds so much like mine man.

 

[bensmith]

it feels so bad man. I cant remember exactly what stopped it last time tbh. My brain activity is so bad right now. Anytime i go lay down its almost worse because my tinnitus is just oscillating and the just seems to make it all
Worse. And my eyes ears and like front of my brain or sinuses maybe ache sooo bad. Im just ij such poor health and not sure what to do.

I was going to try with my first neuro but he was terrible. This 2nd neuro has diagnosed your illness before but im not sure how if i should ask her to test for it. She didnt offer anybof these test last time. Should i ask her for the antibody panel? Ive done so mucb blood work but not sure if i have done the one you asked about, which one was it again?

just wish i coukd get my brain to calm down. It feels so overstimulated but resting doesnt seem to help and maybe even makes it worse. Like am i going to die?

 

[YippeeKi YOW !!]

I have hppd which is considered a seizure disorder, and tinnitus. Also just general worse s activity after my last crash.

Do you have Type 1 HPPD or Type 2?

Which kind of hallucinogenic triggered/caused it? It could make a difference in the type of treatment that would be helpful ... MDMA is the usual suspect ....

Were other psychological, psychiatric, or neurological conditions evaluated and ruled out?

 

[bensmith]

It was in remission type 2. Now more active type 2 esp afte this crash. Got it from lsd+buspar.

i could never find a doctor to even entertain the idea. I had it before it entered the dsm, and efen after none if them cared to explore it. It was like how my me is treated pretty much.

I think one thought i had schizophrenia but i dont fit that critea and its really pretty obv hppd.

 

[YippeeKi YOW !!]

I think one thought i had schizophrenia but i dont fit that critea and its really pretty obv hppd.

Yeah, Drs are notorious for their pronounced reluctance to get involved with any of the results of their psychotropic prescriptions, like the Buspar.

Also, while HPPD may mimic some of the psych disorders, any Dr who knew fluck-all would know the difference. Altho in fairness, not much was known about HPPD before about 2017 or so. Not that that gets them off the hook. It's in the DSM, so it's info that's readily available to any Dr who can read.

Was the Buspar simultaneous with the LSD, like, were you taking it at the same time you started the LSD (by the bye, lysergamines are a little better than, for instance phenethylamines, or so they say), or was it prescribed as a result of the effects of LSD?

 

[YippeeKi YOW !!]

I could try kepra but often times that makes hppd worse.

Anti-epileptics could possibly be a bad idea, what with the lingering effects of the HPPD, and the fact that anti-epileptics have been reported in several research efforts to increase suicidal thoughts and behaviours, along with depression, and mood and behavior changes which I'm guessing you probably don’t need right now. But it’s up to you …. your body, your choice.

Has Dr Levine addressed your HPPD at all?

 

[bensmith]

I was had withdrawals from buspar iirc. And might hsve also taken st johns wort too at some point. I was off them both irrc but i micro dosed lsd for depression and boom hppd. Took me 6 months to. A year to calm down. Basically just pmayed video gsmes the i entire time. It helped snd it went into remission. But its just getting worse with all the sensory deprevation and just i think me makes it worse.

yeah they are super hesitant to admit any fault, i didnt want to take the buspar for example. Doctors are the worst lol.

no levine just hasnt been that on point fot me, she just kind if gives me meds here and there, ive only talked to her on theb phone for like 8 kmins. She is so busy its insane. She is like barely my doctorn if ay all lol.

and yeah prob not good to take kepra nust trying to think of what to do its dicey atm.

 

[YippeeKi YOW !!]

And might hsve also taken st johns wort too at some point.

Probably made things worse. SJW clears thru the same P450 isoenzyme that benzos do, and is contraindicated with anti-d's and benzos, etc ...

Basically just pmayed video gsmes the i entire time.

Could you try something less interactive, like movies or YouTubes on some subject that interests you?

i didnt want to take the buspar for example. Doctors are the worst lol.

Yeah, they're a rare treat .....

and yeah prob not good to take kepra nust trying to think of what to do its dicey atm.

Keppra would be devastating .....

It is dicey, but I think that piling on more drugs, prescrption or otherwise, might be bad idea at this point. It would be great if you could find a Dr that could help you thru the HPPD, I think it would help with all the other stuff. A lot.

If I can think of anything, I'll tag you ....

 

[parabola]

Is it definitely hpdd and not temporal lobe simple partials? I ask as I'm sure a lot of drugs could trigger seizure activity, and TLE partials definitely feel trippy...

 

[YippeeKi YOW !!]

It's possible but not as likely as HPPD, if you read @bensmith's post, above.

Temp lobe simple partials are generally caused by serious traumatic brain injury that leaves scarring, or severe brain irritation from surgery, a stroke, or a tumor that interferes with the brain's electrical activity ....

 

[bensmith]

im trying to keep busy its just kind of out of my envelop to do so. What a disease.

i did def get new brain issues with covid though.

 

[barabara]

Is it a feeling of being made of glass and that you'd shatter easily?

I had a feeling like this last night. I think it's the brain's energy being dangerously depleted, and only managing to stay alive through shocks. What I did was lie down, bag breathe, and breathe under the covers. I also drank some water with baking soda. Getting blood flow to the head during this time is important.

 

[bensmith]

maybe so yeah. Yeah i know im in a lot of danger, i legit think im in danger of death since resting causes excerion/seuziure acitivity.

 

[GlassCannonLife]

I'm sorry you're going through this, it sounds extremely tough.

Not sure if this would be helpful, but have you tried pregnenolone? I don't have many neurological symptoms but when I get a itchy brain feeling and overdo things having a little extra (just tip 10 mg or so into my mouth from a capsule) seems to really calm things down.

Also re: nervous system repair, I wonder if ara-290 could be helpful for you?

For an actual pure crash/bout of PEM I have also found sodium benzoate (1 g or so dissolved in water) and raw BCAAs (5 g or so) mixed into water with a couple of capfuls of apple cider vinegar mixed in (helps it blend) to be quite helpful.

I don't have extensive experience in neurology and I realise you're in quite a sensitive state so of course use your own discretion, but I just thought I'd share these ideas in case they were helpful.

 

[Sophiedw]

Hey @bensmith sorry to hear you’re going through this. I have so much empathy for your situation. I am also in a slightly weedy patch atm. Anyway. Have you tried l-serine? It helped one aspect of my weird seizuryness but especially helped with visions/feeling of dread and loud roaring wave of tinnitus. Just eat a tiny tiny bit if you’re in such a precarious balance atm. It’s definitely all to do with regulation of your glutamatergic nmda receptors. For me anyway. Another thing that’s helping me is biopterin. It’s extortionately expensive though but @Learner1 gets it on her insurance in the states. Maybe you could have a blood test for that. Best of luck x

 

[Learner1]

Another thing that’s helping me is biopterin. It’s extortionately expensive though but @Learner1 gets it on her insurance in the states. Maybe you could have a blood test for that. Best of luck x

Kuvan, the brand name for sapropterin, another name for tetrahydrobiopterin or BH4, now has 2 generic competitors in the US. At 10mg a day, brand name Kuvan runs about US$150, but buying the research chemical or Ecological Formulas pteridin is equally expensive and they aren't stabilized, like Kuvan and its genetics are.

BH4 is needed for neurotransmitter production and in the reduction of peroxynitrites, along with vitamins B12, C, and folate.

There are four genes that support the production and recycling of BH4. Worst case, patients have phenylketonuria (PKU), but even more minor variations in QDPR, GCH1, PCBD1 and)or PTS can compromise the amount of BH4 one has.

https://medlineplus.gov/genetics/co...aused,recycle tetrahydrobiopterin in the body.

For ME/CFS patients, we tend to have oxidative and nitrosative stress, causing peroxynitrites which impair mitochondrial complex one and damage the mitochondrial membranes. See attached.

And these 3 diagrams show how it affects neurotransmitters:

 

[bensmith]

@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.