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Nystagmus Eye shaking and it's medicines.


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So today i am sleep deprived (just cuz i was busy and didnt have time to sleep) and i am lying in my bed. I guess my eyes have dried out/strained out for the day and when I open them wide looking at something at a specific distance (70cm-ish) what i see shakes up and down [i think its nystagmus]. I cant 100% say its my physical eyes shaking since it doesnt happen on mirrors/(no edges) but i bet they are physically shaking?:\

 

I mentioned in the past that i have this but the sleep deprive/exhausted eyes made it extremely more shaky when I open them wide  just now. Its not as severe if i try again, its as if they needed stretching and by doing so, they are more flexible/precise and shakiness less intense or maybe i just lubricated my eyes by playing with them.

 

Anyways, reading about it in wikipedia, it does mention LSD toxicity as a cause. And although it was thought to be untreatable long time ago, recent studies have some treatment options. 

 

A lot of them were familiar drug names ive seen from hppd and I wanted to know what people's experience with them were. 

 

Congenital nystagmus has traditionally been viewed as non-treatable, but medications have been discovered in recent years that show promise in some patients. In 1980, researchers discovered that a drug called baclofen could effectively stop periodic alternating nystagmus. Subsequently, gabapentin, an anticonvulsant, was found to cause improvement in about half the patients who received it to relieve symptoms of nystagmus. Other drugs found to be effective against nystagmus in some patients include memantine,[23] levetiracetam, 3,4-diaminopyridine, 4-aminopyridine, and acetazolamide.[24] Several therapeutic approaches, such as contact lenses,[25] drugs, surgery, and low vision rehabilitation have also been proposed.

My shakiness is 95% of the time produced by me manipulating my eye focus/muscle, though the one or two times i have edge wobbling but thats a different feeling.

 

edge wobbling which happened about 3-4times on its own seems to happen on vertical edges shaking left to right while the one produced by me is basically horizontal lines and even lines of text shaking up and down.

 

Thoughts? experiences? is it an already discussed topic?

 

Im going to sleep now and will do some more reading tomorrow. 

 

I find it ,for lack of a better word, interesting that searching for specific symptoms can lead it back to lsd/drug toxicity while searching directly for hppd and its symptoms output arbitrary results. 

 

I also noticed that when i look in the mirror under the same static/stable lighting conditions i notice my pupils are trying to find a right spot of dilation/constriction but they are struggling. I can see constant minor dilation and constrictions in my pupils.

 

really going to sleep now.

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Hey again,

My Dad has nystagmus.. a few months ago it occurred to me, thinking about hereditary and all, that maybe this played a factor in my predisposition to a disorder that affects the visual system. Like you, I read that it can be brought on by various forms of intoxication; this interested me, in that there could be, or to my eyes (yup) almost definitely, a link. I myself can't say I have nystagmus. I have had episodes of freaky things happening with eyes shaking, like here, or actually the other day when very fatigued; on closing my eyes they shook violently. But these incidents have only ever been short-lived and acute. How often does this occur for you? Is it pretty much permanent? I'll ask my dad what meds he's on. Although probably they're more specific for nystagmus and if I were you I would recommend going for a med that is more wholesome in treating your HPPD. You could perhaps contact some behavioural optometrists and see if they think they can help (see this)?

Best,
S

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It not permanent as in it happens all the time but I can always induce it if I want to.

I don't know if its true nystagmus or just a visual processing error but it can shake quite a bit.

 

I've also noticed that when I was high on MDMA, nystagmus was guaranteed.

Even before MDMA/lsd/mushroom use, I think my eyes were more comfortable in being focused out even though I'm looking at something close. 

 

And i also had anisocoria when all this started. Now, i think it rarely happens but when I do ge to see it, the size difference is barely noticeable. 

 

 

 

behaviour optometrists, im waiting for some more updates in the thread.

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Yesterday, I was able to induce the 'common' MDMA nystagmus. 

 

As where as I was talking about up and down trembling before, the one I produced yesterday was the exact same as the one I had while on MDMA.

It's the exact same because while on mdma, if i tried to focus on the frame of my glasses, it would shake left and right. (and now i can do it by doing the same sans mdma)

It's much more obvious and i can feel the eyes go left and right probably because its rubbing on my eyelids or some muscle sensation w.e. 

I think i can feel the up and down one too but the shakiness is not as severe. 

(and i was mildly sleep deprived which makes this symptom easily producible)

 

By definition, i think the involuntary (even though i trigger it in some sense) eye spasm is called nystagmus. 

 

I dont really plan on medications yet since im only 4month in hppd and trying for a relatively 'clean' route for a while.

I've entertained the idea that medications might stop the progression of hppd and if i dont do anything I might be fucking my self in the long run.

No one truly knows.

 

Ever so slowly, my visuals have gotten worse over the past 4 month and even though all the symptoms are really mild compared to other hppd-ers (imo), I cant say the sober/healthy life has done me any good yet.... except for helping me lose 10kg due to healthy eating lol. 85kg before hppd, 70kg now lol. 

 

One more thing I plan to 'try' is get back to working out but I'm sort of hesitant because I believe HPPD works on chemical imbalance and call me crazy but i think to some extent, exercise will cause chemical fluctuations that can confuse my brain in finding its neutral balance again....though  i have no idea if my brain even knows its unbalanced....(fuck you brain, get your shit together. im talking to my brain now, schizo? lol ) Thoughts? 

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  • 4 weeks later...

hi all,

 

i suffer from acquired alternating nystagmus - my eyes jerks from left to right - this is from childhood am in my early 30's

 

for the last year or so i have tried initially gabapentin to max strength , then baclofen ( given by moorfield eye hospital) and recently  tried memantine prescribed by  prof from University Leicester Hospital  - none of those tablets seems to have had any noticeable effect on my eyes - they still moved and jerked at same speed -

 

i am hoping to prof at ULH soon for any other alternative  apart from surgery - was already indicated memantine and baclofen were the most prefered tablets

 

i wish to avoid surgery due to side effects double vision, loss of sight ( though i been told very rare) eyes not being aligned right etc

 

though i can see its like i am disabled well it is a disability, i avoid contact with people for obvious reasons as my eyes at that time goes bonkers increases the speed more than normal, has big affect on my social life ... i feel like crying at times and i do.....

 

is there anything else i can try any other medicine - please can anyone suggest anything ....

 

thanks

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When my eyes shake i usually feel the veins near my temple and can feel them pulsing pretty hard and fast and for me at least I believe that is what causes my eyes to shake. Either when I get severe headaches, no sleep or on a stimulant. It's a pretty hard and fast pulse and it is right next to my eyes, have you ever felt a pulse there?

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