All of a sudden when i say or think a word i see it : (

[bensmith]

I am so tired if life rigbt now. I think a lot so this is really annoying.

So like car, image of a car comes into my head. So freaking tired of this life atm.

Tjis just literally came out of nowhere last night. I dont knnow wjsr i should do if anythinf. Does it signifiy anything or give any idea on what i should do? It started after i lifted a few thins and was on my feet some day before last but i dunno if that means anything.

Also having terrible grey out/crashing into very severe when tired/going ti sleep. I have had issues with going to sleep for a whilw but its def getting worse. Going to sleep=push scares the hell out of me. Also when drreaming get pushed too sometimes.

Also have issues with visuallizing myself moving when really sick too. Makes me out of breath/more pushed.

 

[Alvin2]

Sounds a lot like Synesthesia
But i don't know if spontaneous development of it is normal plus your other symptoms are not normal

 

[Wishful]

I consider ME as something that interferes with normal neural function, and it can affect small portions of the brain (even single neurons?) differently, so what you describe isn't too surprising. My ME triggers frequent sighing, which correlates with VitC intake. Sighing is controlled by a small clump of neurons, and my ME is possibly influencing one specific neuron that is the trigger for the whole cascade of other neurons that result in a sigh.

Maybe your new problem will go away on its own. Maybe it will go away if you add something to your diet, or eliminate something from your diet. If it's really annoying, maybe there's a drug that might affect it. However, as with most things ME, no one will be able to tell you precisely which treatment is most likely to work. It's probably back to the 'try lots of things and hope you get lucky' process.

ME keeps changing, so don't be too surprised about new symptoms.

 

[xebex]

sounds like closed eye hallucinations - i had them when I first dropped from mild to moderate/severe - I would constantly be seeing faces warping into other faces when I closed my eyes. I do believe it's due to glutamate/gaba imbalance issues, it went away with aggressive rest/pacing and not eating high glutamate i think also that the LDN I took for 10 months helped it.

 

[bensmith]

@xebex def having other hallucinations issues as well. its weird i feel better if my brain is active, when its not it gets messed up. But too sick to be active : /. Trying to rest atm. Ive had issues like this before but not so bad. Makes me want to get the surgery. I feel like im going to die if i dont try something drastic soemtimes.

 

[judyinthesky]

sounds like closed eye hallucinations - i had them when I first dropped from mild to moderate/severe - I would constantly be seeing faces warping into other faces when I closed my eyes. I do believe it's due to glutamate/gaba imbalance issues, it went away with aggressive rest/pacing and not eating high glutamate i think also that the LDN I took for 10 months helped it.

This is interesting. I have such an overactive nervous system that I actually have this all the time. Also I get vision changes sometimes - things look too sharp etc. The more anxiety, the more that is the case.
Hm not eating high glutamate and LDN might be an option. Have you had any issues with the LDN?

 

[bensmith]

Not sure about gluta but am on ldn

 

[judyinthesky]

Not sure about gluta but am on ldn

So did it help?

 

[xebex]

@judyinthesky LDN completely got rid of my brainfog, so i assume it also played a part in the excitotoxicity too, I needed to go sugar free too to aid the LDN and I was sugar free for along time afterwards but I can seem to eat a bit of fruit sugar (even dates which are super sweet) now.

the LDN was certainly helpful but bizarrely although my cognition improved hugely, physically I got worse so I quit it. I have since tried to take it again but I makes me depressed, I feel like it did what it could and now it’s not helpful to me anymore.

 

[barabara]

This is interesting. I have such an overactive nervous system that I actually have this all the time. Also I get vision changes sometimes - things look too sharp etc. The more anxiety, the more that is the case.
Hm not eating high glutamate and LDN might be an option. Have you had any issues with the LDN?

Naloxone, which immediately cleared up brain fog/PEM for me, also had an effect of making my vision seem sharper. It's possible that the shutoff reaction with endorphins caused by neuronal stress also has an impact on vision.

If that's the case, then painkillers may also have this effect of making vision less sharp, but I've never taken any.

OP, however, has synesthesia. Everyone has at least subtle associations, for example if you imagine one, you may see "one", "1", a color associated with one, the numerical value of one that appears when you're calculating math problems, etc.

In an altered state, such as while under the influence of psychedelics, one's associations become stronger. A certain song would cause certain patterns and colors to appear, especially while one's eyes are closed.

I have no solution except what's typical for ME/CFS. Bag breathe, drink sodium bicarbonate, rest, and lie down during an attack. Take thiamine multiple times a day to tackle the neurological symptoms.

 

[bensmith]

No ldn does nothing. Maybe before but not now. And not neuro.

yes, that is what we have i suppose. I tried most of this. I am in a lot of fear but also very much exasperation. I thought things were maybe calming but now is very bad.

my cfs and hppd are fusing it seems. This is very very bad. I can’t rest or not rest. I feel like giving up a lot atm.

i am also experiencing nuerological imprinting. Pat j had this too.

god My brain is just stopping to work right. I dont know how long i can do this.

 

[bensmith]

My brain is in decline why is this happening! I can’t take it! Everything i do is wrong now! I have no place to exist. ; (

 

[FinRinTin]

I don't know exactly how you feel but I've experienced an auditory hallucinations some months ago and it was frightening.
While lying in bed I heard a loud bang near my ear.
Like an explosion on New Years day.

So I wish you the best from my couch and "Hang tight" ... You are not alone

 

[bensmith]

That is called exploding head syndrome and i have experienced that as well. Yes it is very scary.

i havent haf it since me. But going to bed is a very violent/pushing act for me now. Very demoralizing. My brain is just completely falling apart.

thanks. I wish i was ok i hate all of this so much. I cant freaking take it! : /

 

[FinRinTin]

I know but as always in CFS: Everything changes and always stays the same

But it's for the best to vent and always remember the wise words of Dr. Monty Python:
Life's a piece of shit
When you look at it