Saw some visual snow, now i can’t tolerate darkness. Gives me hallucinations, which then pushes me.

[bensmith]

It never ceases to amaze me how things can always get worse. I saw some visual snow on tv, now i can’t tolerate darkness(visual sensory deprivation) i need rest/darkness.

The scariest part is i cant seem to control stuff now. I can’t rest in the day time because i will hallucinate and get worse. If i push to stop hallucinations i get worse anyway. I dunno this is so freaking scary. I can’t believe my life could be over from seeing a tv screen for a couple mins.

The second i close my eyes now i start to push : /. This is so scary.

I have been worried about the squeeze from hppd and cfs together.

I am just so emotionally spent. My god isnt my life crappy enough. Blah.

In some sense i am lucky i can still do this horribly exhausting balancing act. But in another fml lol.

It also feels very dangerous. If i get worse what can i do : /

Edit- shit im really starting to lose ability, sounds are starting to hurt. Wtf why does life have to be like this : (((((

 

[GlassCannonLife]

Damn Ben, I'm so sorry to hear that.. It sounds horrible.

What do you mean by you "start to push" when your eyes are closed? As in it starts to use energy beyond your acceptable envelope?

Did you end up trying any pregnenolone? I also read recently that some people found BPC-157 helped their HPPD, that could be worth a shot.?

 

[bensmith]

@GlassCannonLife i tried gabapentin made me worse, pre is stronger so not tried.

Did bpc this morning. Same idea as youX thanks. Maybe helped some but not enough to stop progression it looks like.

I mean i cant take the sensory deprivation of darkness now. So it pushes me FAST. I’m trying to find a sweet spot with overhead lights on, and arms over my head. Some light but not too much. Still seems to be bad though. Things are progressing extremely aggressively. I know i am pretty dramatic, but i am very concerned i might be dead in a month. earlier i hallucinated the angel of death coming to visit. I hope its not a sign.

I cant believe it because i was doing sort of better, i figured things out sort of. Now i have dropped from severe to more very severe in 2 days. And things are spiraling sooo fast. My brain is on fire and it just keeps spreading. My pem threshold is shrinking very fast.

 

[lenora]

Hi @bensmith.....I seem to recall reading similar things from you before written a few mos. ago.

It's possible that you're going through a particularly bad time and all will right itself in the end again. You seemed to be doing so much better for a time and I'm sorry this has happened. Give yourself plenty of time and patience and while it's easier said than done, try not to overthink the entire situation. While it wasn't snow, your very time before passed, didn't it? Not saying that life was perfect, but it was livable once again. Yours, Lenora.

 

[bensmith]

Just cried to my mom and within 2 mins she said i need to go to the hospital and we had a fight. I fucking hate life lmao.

@lenora yes i keep trying to tell myself this, thank you! I try and not overthink it but i have to say it feels very different this time and the speed is just so fast with the decline. Its just bothering me i cant get ahold of it. I’m hoping itll be ok.

 

[GlassCannonLife]

@GlassCannonLife i tried gabapentin made me worse, pre is stronger so not tried.

Did bpc this morning. Same idea as youX thanks. Maybe helped some but not enough to stop progression it looks like.

I mean i cant take the sensory deprivation of darkness now. So it pushes me FAST. I’m trying to find a sweet spot with overhead lights on, and arms over my head. Some light but not too much. Still seems to be bad though. Things are progressing extremely aggressively. I know i am pretty dramatic, but i am very concerned i might be dead in a month. earlier i hallucinated the angel of death coming to visit. I hope its not a sign.

I cant believe it because i was doing sort of better, i figured things out sort of. Now i have dropped from severe to more very severe in 2 days. And things are spiraling sooo fast. My brain is on fire and it just keeps spreading. My pem threshold is shrinking very fast.

Ah ok, I don't know much about Gabapentin but from what I have briefly read it is a pharmaceutical drug for treating seizures and other neurological issues right? Pregnenolone is just a precursor hormone that people take in supplemental form. It can have benefits with mood, brain inflammation and in general neurologically as some of it converts to allopregnanolone, apart from itself having some of that activity IIRC. It is also a precursor to adrenal hormones so if you have any issues with adrenal insufficiency contributing it might help. But of course tread carefully if you are so unstable!

Re crying, I find the emotional output can flare me up, so you might have to be careful with that too..

Bpc might take longer to start having a beneficial effect but I'm not entirely sure how long it would take in a HPPD context. You tried 250 mcg injected? I'm doing that 2x a day, a few days in so far and it seems to make me a little more robust so far.

 

[lenora]

Hello @Glass Canon Life.....Gabapentin is an old drug that was used for epileptic seizures and was the first drug used for nerve pain in those of us suffering from it, including those with CFS/ME. It's a good drug, but in the beginning doses were often too high, although many people flourished b/c of it. It was found to interrupt the pain signals from the brain to the spinal cord.

Later pregablin came along (lyrica) and I've been on it for a no. of years now. There is no question that it helps with the severity of the pain levels. Please bear in mind that not everyone with ME suffers from pain, while others suffer greatly...nerve pain that burns constantly.

Many people are on prescription meds so it's especially important that vitamins/supplments/herbs aren't used in addition to the drugs unless a doctor knows what is taken. This is important for many people and is often a forgotten subject.

@bensmith.....how about putting on some soft music and trying to just look at the photos in a magazine? Let your mind just float away. I know you've been in a similar place before, OK, not the same hallucination but I do feel that if you do something active with your mind you may slowly come out of this.

I know you don't want to go to the hospital, so at least give this or something else a chance. Have you started any new meds or vitamins, etc., recently?

As you know, you need sleep, so perhaps it is time to have your mother (or you) phone your Dr. Yours, Lenora.

 

[SnappingTurtle]

I am sorry you are going through such a tough time. I can relate to the feeling of hopelessness when all the symptoms start piling up and/or worsening. I can only hope that your body will allow you some relief, so that you can take a moment to breathe and find something positive to focus on. May you find your way back to a better place. Keep on reaching out.

 

[SNT Gatchaman]

@bensmith I will be thinking of you all day. I know this truly awful new symptom will settle - I very much hope that it will be soon. While I'm not religious, I am certainly sending my warmest and most positive thoughts to you.

 

[crypt0cu1t]

Sorry if I missed anything, but whatever happened to the Neuro appointment that you had? Did you have any luck regarding AE testing?

 

[SNT Gatchaman]

Hoping today has seen an improvement.

 

[bensmith]

@SNT Gatchaman no : ( i am really falling apart. I have dropped so much lower. My brain is just constantly strain from hppd. I a cant stop is so hard to have brain going all the time now pem from everything. I am so sad.

Cult nothing i never had apt for it.

Thanks for thougjts lenore.

I also cant do bpc more than 1 time it messes with dopa. And im so fragile atm, i am so sad.

Ty turtle.

 

[GlassCannonLife]

@SNT Gatchaman no : ( i am really falling apart. I have dropped so much lower. My brain is just constantly strain from hppd. I a cant stop is so hard to have brain going all the time now pem from everything. I am so sad.

Cult nothing i never had apt for it.

Thanks for thougjts lenore.

I also cant do bpc more than 1 time it messes with dopa. And im so fragile atm, i am so sad.

Ty turtle.

That's so rough man, I'm sorry to hear it's so bad. Hang in there, thinking of you

 

[bensmith]

Ty worse today again. Not looking good. Eventually i fear to send me compeltely off to sea. To stop
Hppd must engage brain. Losing fight.

hppd causes much energy to be produced. So its like i am jogging during a crash now, at rest, worst at rest.

i am trying to find a way for this to work out. But i cant see it right now.

 

[lenora]

@bensmith......Why don't you go the doctor? It seems the only logical choice at this point. You've tried and things sound as if they're getting worse.

I'm not suggesting that you do something I wouldn't do myself under the same circumstances. You need help.
Don't delay. Yours, Lenora.

 

[bensmith]

@lenora i dont see the point, my hppd and cfs cannot be managed any better there than here, unless there are medicines i am unaware of. If i thought there was something they could do i would go.

But at some point i’m sure ill end up in the hospital anyway, if things continue as they are. Thanks teaching reaching out and your concern.

 

[judyinthesky]

I know some of what you describe, particularly the feeling of it getting worse and more severe by the day.
There might be several ways to engage. If this is what your hppd needs.
This might be a stupid idea, but drawing or looking though magazines could actually be an idea.
I am unable to go to doctors myself.
I understand that you don't want that.
When you say hallucinate, do you mean in front of your eyes, or in a room.
It would be logical that darkness is a very colourful place for an over active mind.
In a crash I trip constantly when closing eyes.

I use Klonopin for when this happens.

 

[bensmith]

Ty @judyinthesky sky. Sorry to hear yoh get this way too.

i get visual eye stuff and also brain stuff. Like lose touch with reality etc. im not well enough yet for magazines i dont think but i will try and see if that helps.

yes getting worse by the day is truly scary! New symptoms everyday. Breathing, nasuea, movement, dropping large levels down. Right now i feel poisened body for first time. Its all crashing down so sad.

i have tried benzos but they make me worse somehow, make my hppd or cfs worse. Tried before some.

its so hard because i know i can manage my severe cfs if i can just turn off the tripping part of my brain. I keep cycling down though. Its so crazy being so weak and feable.

 

[Woof!]

Hi Ben,

I don't know if my own experience with hallucinations will be helpful, but in case it might...

Ever since I was a little kid, whenever my body's temperature would go up as little as 0.2 degrees F, I would start to see bugs - LOTS of them crawling up my legs. Sometimes I'd tell my parents about them (mom an RN, dad a psychologist), and sometimes I'd try to ignore them, just hoping they'd go away. After a few trips to the ER, it was agreed that these were visual seizures triggered by tiny fevers (my normal temp is 97.8 - 98.0 F).

Fast forward many years and I'd have the same thing happen to me roughly once a year. When I moved out of my parents' house, wherever I was, I'd tell a close friend about this weird side of me so, if they got a phone request out of the blue to sit with me, they'd understand what was going on. One time in vet school, a renowned veterinary neurologist was showing a video of a dog snapping at "flies" only he could see (a visual seizure just like mine) and my best friend (yes, my best friend!) announces to the whole class "Hey Lynne, that's just like you!" With friends like that...

As I get older, I find lots of times that I see bugs that aren't there. My way of handling it (since I'm pretty sure they'll eventually go away) is to embrace it as an odd trait of mine and not let it get me anxious. Getting anxious about it wouldn't help me- it would definitely hurt. I have no control over bugs that aren't there, but I do have control over how crazy they make me.

Have you tried singing or listening to a really good book-on-CD? Exercising the hearing part of your brain might calm the visually-triggered part of your brain. (The concept works very well in dogs)

With best wishes from Lynne (who is bigger than a bug)

 

[Marylib]

Ty @judyinthesky sky. Sorry to hear yoh get this way too.

i get visual eye stuff and also brain stuff. Like lose touch with reality etc. im not well enough yet for magazines i dont think but i will try and see if that helps.

yes getting worse by the day is truly scary! New symptoms everyday. Breathing, nasuea, movement, dropping large levels down. Right now i feel poisened body for first time. Its all crashing down so sad.

i have tried benzos but they make me worse somehow, make my hppd or cfs worse. Tried before some.

its so hard because i know i can manage my severe cfs if i can just turn off the tripping part of my brain. I keep cycling down though. Its so crazy being so weak and feable.

I'm so sorry Ben. Wish I knew what to say that might help you deal with all this.