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Posted

Throughout this ordeal my most distinct an and often most unsettling symptom is when objects, the gound, or walls will move. I shall look at a wall and the whole thing will shift and sway up and down, or like today when I woke up and my cabinets started breathing, sometimes the ground in front of me will move and wave, or the ground appear tilted up or down. Sometimes when I move and it moves differently, it makes me dizzy, it is hard to judge space I am in. I used to be able to feel this movement everywhere, this felt like a vestibular issue, this felt like a vestibular issue and the doctor I went to said probable labyrinthits, which fit the description when I felt dizzy all the time, when I felt like I was walking on a boat in stormy weather. I still find it hard to sand straight with my eyes closed, which again points to a vestibular issue, but I find it most improbable that I developed a vestibular issue and HPPD over the course of the same night. My other visual symptoms came later, afterimages increasing in duration and quantity over the first week, I noticed visual snow after like a month and a half. Do any of you perceive movement? To what extent? Is it just part of walls that breath in your visual snow, or is it like me whose walls will frequently shift up and down, the corners of computer screens shift in and out? I have never found a definite answer about the extent people with HPPD see things move that are not supposed to move.

Why I worry is that I show many signs of post trauma vision syndrome (http://www.padulainstitute.com/post_trauma_vision_syndrome.htm) which can only occur after physical brain trauma or stroke, which I am damn certain I did not suffer. It can occur with MS, which can explain all my other symptoms as well, to the point where I should be setting up an MRI with a neurologies to see if it could be, but except my three month bout with true disqualibrium dizziness, I experience none of the common symptoms of MS that you can't just explain away by my anxiety level. I am just terribly confused.

  • 3 weeks later...
Posted

I have this "illusory movement" symptom to an extreme degree, from what I remember that symptom got added after a high dose of LSA (nature's answer to LSD).

Walls, floors objects etc. etc. breathes, sways, zips back and forth, tilts, curves. I feel like I'm in a boat in a stormy ocean many times. Edges of objects jitters (maybe my visual cortex has poor anti-aliasing? wink.gif) and looks "melty" and fuzzy.

It is one of the top most annoying symptoms for me.

Remember that what your visual input tells your vestibular system, will be taken as a command to that very same system. Which means if your visual input is distorted (warped, tilted, breathing etc.) your vestibular system will adapt to that information. Conclusion: you will feel dizzy. Read more about sense of balance (Equilibrioception) here.

I have undergone many tests such as CT scan, blood tests etc. all with negative results so far. No tumors, lack of vitamins etc.

I take it from reading your post that you might not have had HPPD for a very long time. I did the same in the beginning, read about every thinkable disease, always expecting the worst. Now, over 5 years since HPPD onset, I have a clearer picture of what I have and don't have. If you're worried, do an MRI or CT of the head, check inbalances in the metabolic, vitamin, mineral levels. Also check s-protein fractions (which I'll do myself soon because of suspected CFS). There are many conditions which can alter the sense of balance, and your general sense of health.

What I'm trying to convey is: it's like 95 % sure that your dizziness is caused by HPPD. If you're still unsure, persuade your doctor to test or remit you for whatever condition you're worried about. It's a million times better to have clear, clinical answers than to ponder your head apart.. trust me! smile.gif

Hope my reply was helpful! Good luck!

  • 3 weeks later...
Posted

Yeah, since that post the movement has gotten a lot better. For the first few months it was like I was on a boat and it was probably the lowest point in my life. I still get disequilibriumized when I am moving a bit and have been struggling with tilting and slanting as of late (I will be watching tv or be on my computer and I will swear it will be tilted a bit to the right), but it was nothing like it was before. My depth perception is a hell of a lot better as of late as well. I appreciate the response though, the movement and especially the dizziness that comes with it has always been the most troubling symptom, as it is one of the more uncommon ones with this disorder, and makes the world seem most strange and foreign. All the other ones I can just say, HPPD. The movement always made me feel so isolated.

Posted

Yeah, since that post the movement has gotten a lot better. For the first few months it was like I was on a boat and it was probably the lowest point in my life. I still get disequilibriumized when I am moving a bit and have been struggling with tilting and slanting as of late (I will be watching tv or be on my computer and I will swear it will be tilted a bit to the right), but it was nothing like it was before. My depth perception is a hell of a lot better as of late as well. I appreciate the response though, the movement and especially the dizziness that comes with it has always been the most troubling symptom, as it is one of the more uncommon ones with this disorder, and makes the world seem most strange and foreign. All the other ones I can just say, HPPD. The movement always made me feel so isolated.

  • 3 weeks later...
Posted

Good to hear that you're feeling better!

I know it might sound impossible, but the "strange and foreign" feeling will feel natural in time. So will having HPPD and disequilibrium as well. It's one of the wonders of the body & mind, how adaptable they are. But it will take quite some time (and blood, sweat & tears ;)) before they adapt! I guess it's a survival mechanism.. From my experience, having HPPD and disequilibrium for 5 years now, none of the symptoms have improved, but my attitude towards them have. And with that, my mood has improved. I've adapted to my disorders a lot, but they still hamper me from functioning entirely (I'm on disability). But I can live with it now, something I thought I would never be able to do in the first years.

You seem to have a good chance of recovering entirely, and I hope you do!

Best wishes!:)

  • 3 weeks later...
Posted
Do any of you perceive movement?

 

Yes, while not as dramatic as described by you or 415_STYLEE, it was "most unsettling". This is one of those, ‘must be loosing my mind’ type symptoms.

 

It is good that you have progressed. For me, this one ebbs-and-flows (pun not intended) but over the long term seems worse. Nor have I found any specific medication that helps. It is defiantly aggravated by car fumes.

 

but I find it most improbable that I developed a vestibular issue and HPPD over the course of the same night.

 

Agreed

 

My other visual symptoms came later, afterimages increasing in duration and quantity over the first week, I noticed visual snow after like a month and a half.

 

The deterioration over time is classic for some injuries – chemical or physical. It can be that a substance hanging around continues to cause synaptic damage (such as manganese can cause parkinsonism). It can a daisy chain effect from excitotoxicity or damaged axons (‘progressive secondary injury’, Wallerian degeneration).

 

Whatever happened to you, at least you are finding improvement.

 

Is there anything you (or anyone else) have tried that you think is helping?
Posted

This was my first symptom, which I perceived the night of my shrooms intoxication, beginning about 5 hours after ingestion. While everyone was coming down, something in me snapped while I was trying to get to sleep, I felt it, and the room started moving out of control. It was pretty dark, the lights were off but across the room there was a small led light. The movement was in a pattern kinda, almost like a wave going from left to right around my head, as well as up and down repeatably. The led light in affect was moving around in circles. I had known about HPPD before I did shrooms and that night I kinda knew it was instantly. I got little sleep that night. Through that next week I had it stay quite the same, individual words on a page would move in circles, basically anything stationary was unhinged and move in some way, when I stared at walls, they would move up and down. At the end of that week I had my first bad "episode" this is when my disequilibrium started. I was looking at a wall move up and down, and my head went with it. Suddenly I felt completely off, like I was sideways in existence, I was looking at a wall but it felt like I was looking down, my perception in space was totally gone. This extreme feeling gradually fell to a baseline of a stormy ocean feeling, my visual hallucinations were represented by a feeling of them, the world moved and I felt it. Even when my eyes were closed, I felt it. This continued for like 3.5 months, when the internal feeling faded into to almost nothing. That extreme feeling happened a few times after the first time, but never to the proportion it was initially. The perception of movement while I was stationary took about another month to die down to minimal levels, by this time, the other symptoms of HPPD had been realized.

I think HPPD must be what I am suffering from, although I never got it diagnosed, I was unsure of this when it was just movement and dizziness, but now since the other symptoms, it must be. Most people with HPPD, symptoms gradually worsen to a baseline over the first couple of months, there is a considerable latency sometimes between intoxication and HPPD. I don't think it is that abnormal that my symptoms happened gradually, it is always uncertain though. In addition, my symptoms began shrooms night. I have no time where I can point to any head trauma, and I did not injest any substance that would be considered toxic, the hardest drug I did was weed and that only sparingly. Those times were stupidity on my part. I can almost correlate the progression of my other symptoms to those times I smoked.

"Is there anything you (or anyone else) have tried that you think is helping?"

I was prescribed antivert for dizzines and it worked on my disequallibrium when I was convinced it was vestibular disorder. I don't know if it was a placebo effect though. I had a couple bad episodes as well while on it. The funniest thing though that has help is watching TV, or playing video games. Things will not move while I do this, and my dizziness would disappear.

I don't know, the last few days I saw a relapse in some of my dizziness and movement, the side of the screen is breathing a bit, nothing I can't handle but it is something of note.

I hope you feel well.

Posted
Thank you for the info. Didn’t know that Most people with HPPD, symptoms gradually worsen to a baseline over the first couple of months – am new to the forum and it is rather empty right now.
 
There are a number of things you describe that I’ve experienced too.
 
 
 
The funniest thing though that has help is watching TV, or playing video games. Things will not move while I do this, and my dizziness would disappear.
 
Perhaps this is because TV is 2D, so your brain doesn’t have to do as much binocular conversion. I started seeing a visual rehabilitation doctor who is a neuro-opthalmologist. He is trained by NORA, the group that treats ‘Post Trauma Vision Syndrome’.
 
Here is something to try, ‘Nose blinders’ – am still working on a way to explain since I can find no pictures:
 
You know how they put 'blinders' on a horse so it can only see straight ahead?
 

Taking-Off-The-Blinders.jpg

 

Instead of blocking the outer visual field, you want to block the inner visual field. Use two fingers together and hold them flat along your nose pointing up - so that it blocks part of your inner peripheral visual field (where vision from both eyes overlap) as if you had a really big nose. If you get the amount of 'blockage' right, it may immediately reduce a number of ‘motion’ defects.
 
As a rehabilitation exercise, (if you have glasses) you just take some scotch tape a place a small strip to block the view the same way (inner part of lens by bridge). And wear this 40-min a day. Longer if you wish.
 
Let us know if this has any affect for you.
Posted

Wow, that is really interesting. I have read about Post-trauma vision syndrome, and display some of the listed symptoms, I definitely think my bouncy vision is shared between me and people with it. The thing you said about binocular conversion also makes sense. It would make sense that I have some kind of Post trauma vision syndrome, but I can't point to any real trauma for the cause. Unless I had a minor stroke and didn't know it. I will try what you said.

Thanks

I will experiment with that over the next few days and get back to you.

Posted
It would make sense that I have some kind of Post trauma vision syndrome

 

The description of the two visual systems, how the one lays the foundation for the other, and what happens when these are no longer synchronized – describes much of what we suffer.

 

I can't point to any real trauma for the cause

 

While discussions of brain injury focus on TBI (physical trauma) or CVE (stroke), the category of non-TBI is often ignored. For example, if you drowned and were dead for 5 minutes, technically you don’t have TBI since there was no physical blow. [Acquired Brain Injury is the broader category].

 

So too with chemical injury (toxic encephalitis) – it isn’t TBI. It is a non-physical trauma.

 

Since your symptoms started with your shrooms intoxication – that is probably your mild injury. Why it happened that time and not before depends on all sorts of things (that batch, how much, how often, additional stressors or exposures, level of health that week, …). And what will happen if you trip again – who knows?

 

I can almost correlate the progression of my other symptoms to those times I smoked.

 

If I understand you correctly, each time you got worse was after weed – something that also probably never bothered you before. So again, this may be your ‘chemical’ now. Since my initial injury, heavy car and diesel fumes will start a progression of deterioration, so living in rural areas and driving when traffic is light has become necessary. I never liked fumes before but they didn’t screw up the brain (as far as I know) – now they do.

 

Well, at least your body seems to be healing. You are also getting used to it, so anxiety is lower.

 

Hope you keep getting better. And look forward to hearing if the 'nose-blinders' does anything (for me it doubles visual speed instantly, thus reducing the frame delay 'drunkenness')
  • 2 years later...
  • 2 years later...
Posted

Hello - I recently acquired this disequilibrium symptom after being exposed (for about a second) to second-hand marijuana smoke outdoors. I tried the "nose blinder" approach and it is working! Thank you Visual! I am so, so hoping that this symptom fades with time. i can't imagine feeling this kind of vertigo for the rest of my life. Has it improved for anyone else?
 

Posted

it took me about 4 1/2  month or so...but was pretty intense and debilitating....its one of the things in my life where i thought it would never go away...that is said..i still get panic attacks when i take more than a micro dose of any mind altering substance...but the hppd has never returned...im so glad and grateful...i wish everybody could find a way to get through hppd.

  • 11 months later...

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