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Does anyone else have visual distortions?

Discussion in 'General Symptoms' started by Hitension, Feb 28, 2014.

  1. taniaaust1

    taniaaust1

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    I found that kind of thing happens if I have an ordinary cigarette. I tried a smoke when I was a teen and seriously it made all the lines on the roof actually move. I couldnt believe the affect that cigarette had on me and that people actually smoke those with no problem (I couldnt walk after it as everything was moving). Obviously I was sensitive to some chemicals before I even had ME.
    ..........

    It can be due to ME if the person has dysautonomia (autonomic dyfunction like most of us do). Its just another way ME dysautonomia can manifest. Most doctors in ME/CFS field arent up with yet to it causing bouts of hypertension as they tend to think only on the hypotension side of things with us...but orthostatic hypertension in ME has actually been long known about eg Dr David Bell wrote on this quite a long time now.

    My personal thoughts on it to this date are that it usually appears more in the severe ME people group and appears in those who have had ME for quite a while eg maybe those who have ME for 10 years or more. (I had more stable low BP 80/60 in my first 10 years of ME before it became completely wacked out and all over the place eg recently has been 80/50 (or it may of been 80/40 to 190/138 kind of stuff)
     
  2. taniaaust1

    taniaaust1

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    The visual distortion you have, Im very happy to be able to say I havent had that with the ME (not often can I say that).

    I get other kinds of visual distortion with this illness eg blurred vision, sight blacking out of me so I cant see anything except pitch black, some of the newer lights have me seeing big green blogs. My eyes apparently shake on rare occassions (witnessed by others) but when that is going on, I dont myself notice.
     
  3. Legendrew

    Legendrew Content team

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    I get visual disturbances such as blurred vision randomly (usually accompanied by watering eyes) and my eyes are also a lot more sensitive to light than they used to be - with my vision being distorted by bright light from the sun but this usually passes around 5-10 minutes after exposure. I've had the seeing pulse in the eyes thing but normally only after I've done something to increase my heart rate and this passes very quickly. I also get migraines (have done before and now during ME/CFS) although I get them without auras 99% of the time. I think whatever nervous involvement ME/CFS has causes a degree of hypersensitivity which is obvious in the eyes given the visual disturbances it causes.

    I do also have a degree of hypertension which has been noted numerous time by my GP although my family all have higher than average blood pressure so I think while ME/CFS may be effecting it I cannot be certain. I'd much rather have slightly high blood pressure than the terrible hypotension many people with ME/CFS suffer.
     
  4. Calathea

    Calathea Darkness therapy

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    I've had visual problems from the ME for years now, I am mildly visually impaired as a result (e.g. can't read standard print), and I remember something being a bit up with my peripheral vision a while ago. I can't remember what it was, just that I wanted it checked, and it came out as more or less normal. However, a friend is going to lend me a harp which is small enough to play in bed. It's 25 years since I learned the harp, so I went to the harp festival over the weekend to see whether I had the hand strength to play. What I didn't expect was to see two rows of strings crossing each other at an acute angle. The harp sits on your right shoulder so this was sort of peripheral vision, although turning my head to look at them didn't help. It happened with all the harps, but wasn't as bad with the harps which are strung with gut or nylon, where most of the strings are a translucent white, the Cs are red and the Fs are black or blue. It was much worse with the wire-strung harps, where the strings are all brass, even though the one I had a lesson on had a bit of pink and blue paint applies to the upper part of the Cs and Fs. Wire harps also have closer string spacing, which may have affected this. The teacher pointed out that my eye problems may have been worse that day due to the exhaustion and sensory overload of the trip, even by wheelchair, but even so, I was pretty taken aback. I'm fine with piano, where the notes are in front of you rather than off to the side, and more clearly marked at that.

    I'm meant to be having another attempt at an eye test next Saturday. With the first one, I kept ringing in advance to say, "Are you sure this is a good idea, what about if I need painkillers, they affect my vision?" I didn't get my usual optometrist and she said, "Oh yes, it'll be fine." So I turned up, no painkillers just in case, visual problems all the way through especially floaters, kept telling her about them, she said I'd be fine. She also said I had a significant change in my prescription even though it was only a year since my last test, and guessed that was why I've been getting a lot of blurry vision in the morning. She said I'd lost a dioptre in one eye, not that common at the age of 37, and I think increased astigmatism in the other. It was two weeks before I'd recovered enough to go back and fetch the specs, and then they were all wrong, giving me a headache and disorientation and nasty visual effects very quickly. I had to beg the optician to let me trry them long enough to be sure, he kept telling me I'd get used to the changed prescription, but the only other time I've had a reaction like that was when another place fucked up my eye test, and I ended up getting a week's migraine and missing uni exams, so I persisted. He was rather irritated with me, we organised an eye test with my usual optometrist who is better, and the optician told me that if I was having any visual problems at all that morning, to cancel the test. Which I had to, and I've just realised that if we keep waiting for me to have a day without visual problems, that we are going to be waiting a long time. I've been able to have many eye tests before, I don't know what's going on here. I used to have a lovely eye specialist but she took early retirement.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can you have the eye test staggered? I know it would mean more journeys though, but I find it very tiring to go through all the different tests in one session. I was rather dismayed at my last one when the room for testing ability to spot flashing objects was occupied near the start, so that I had to have the test at the end. I always struggle with this test as my field of vision always keeps blacking out completely for a few seconds so I literally can't see anything during that time, and of course at the end of the testing session I am generally quite tired. I managed it but I think it needed two attempts.

    I think I may have been offered the chance to split the tests into more than one session, but I decided to get it over with.

    Harp playing sounds very tiring. I stick to keyboards now, as they are in just the right place for my arms to be reasonably comfortable while playing. It's usually concentration that gets the better of me in the end, while I'm fine physically.
     
  6. Calathea

    Calathea Darkness therapy

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    Ah, but the little harp I'm borrowing is small enough to pay curled up on the sofa, even in bed I hope! It's the Ardival Kilcoy and a lovely little thing.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Ah - it does look lovely:

    http://www.laurierasmussen.com/kilcoyharpforsale.html

    Not many strings - maybe your eyes/brain decided that there weren't enough so doubled them!

    My problem is holding my arms up. I used to 'play' (in an amateurish way) recorders and tin whistles, and have also played guitars even more amateurishly, but found that too tiring and a standard guitar is too big for little me. A small keyboard is ideal.
     
  8. Rrrr

    Rrrr Senior Member

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    @Hitension

    Vision distortions are very very common with ME/CFS. Some doctors think this vision distortion (vestibular issues) are from viruses in our vestibular ganglion. Specifically herpes viruses. So the treatment is to take antivirals, such as l-lysine, acyclovir, famvir or valtrex. See below. (If I am not allowed to include links, please let me know.)

    - http://www.tampabayhearing.com/vestibularneuritis

    - Evidence for a viral neuropathy in recurrent vertigo., Gacek, Richard R. , ORL J Otorhinolaryngol Relat Spec, 2008, Volume 70, Issue 1, p.6-14; discussion 14-5, (2008)

    - A Perspective on Recurrent Vertigo, Gacek, Richard, ORL J, 2013; 75:91-107 http://www.karger.com/Article/PDF/348710

    - publications by Dr. Mitsuo Shichinohe, M.D., PhD
    http://shichinohe.web.fc2.com/english1.htm
    http://rlovell.tripod.com/Acyclovir.pdf

    - http://www.ncbi.nlm.nih.gov/pubmed/19142031
    ORL J Otorhinolaryngol Relat Spec. 2009 Jan 10;71(2):78-86.
    Ménière's Disease Is a Viral Neuropathy.
    Gacek RR.
    Department of Otolaryngology - Head and Neck Surgery, University of Massachusetts Medical School, Worcester, Mass., USA.
    Morphological and clinical evidence supports a viral neuropathy in Ménière's disease (MD). Quantitative examination of 11 sectioned temporal bones (TBs) from 8 patients with a history of MD revealed a significant loss of vestibular ganglion cells in both the endolymph hydropic (EH) and non-EH ears. Transmission electron microscopy of vestibular ganglion cells excised from a patient with MD revealed viral particles enclosed in transport vesicles. Antiviral treatment controlled vertigo in 73 of 86 patients with vestibular neuronitis (85%) and 32 of 35 patients with MD (91%). Copyright © 209 S. Karger AG, Basel.

    http://menieresjourney.blogspot.com/2012/04/acyclovir-famciclovir-l-lysine-can-anti.html
    blog on antiviral and meniere's disease



    Here is another thought: vision disturbances could be from an autoimmune condition:
    Meniere's disease might be an autoimmune condition?
    http://www.sciencedirect.com/science/article/pii/S1568997212000092
     
  9. Rrrr

    Rrrr Senior Member

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    I am not sure what is and is not accepted on this forum. May I include random excerpts from an online article? If yes, here are some. If no, please let me know.
    ____

    Below are random (not in order) excerpts from this larger article: http://www.tampabayhearing.com/vestibularneuritis.php

    "Our clinical experience is that among those patients with chronic vestibular neuritis symptoms, a high percentage, as R Gacek suggests, improve and stay improved on long term antivirals." (more below)

    Recurrences of acute viral vertigo had been thought to be uncommon, generally with an incidence rate in earlier publications of under 5% with follow up of under 10 years.[33],[34] A more recent study found vestibular neuritis to have a nearly 11% recurrence risk by telephone interview and benign paroxysmal positioning vertigo, often a sequela of vestibular neuritis, had a greater than 15% recurrence risk.[35] In the same study, recurrence of vertigo symptoms of any type was at a 26% incidence suggesting that some degree of recurrent symptoms is not rare at all and that fits with our clinical experience.

    The cause of chronic, recurring vestibular neuritis is thought to be viral and relatively recent postmortem pathology supports that notion.[42] Another study shows that the vestibular ganglion and vestibular nerve are commonly colonized by Herpes simplex.[43]

    For chronic and recurring vestibular neuritis and its derivative disorders, Meniere’s disease and benign paroxysmal positioning vertigo (the latter has more than one etiopathogenic pathway), there is evidence that long term antivirals are effective but dosage is not specified.[46],[47] The notion that recurrent vestibular neuritis is Herpes-Simplex-associated is growing.[48] A literature search on PubMed with “vertigo herpes” found literally dozens of references, many of which conclude that neurotropic viruses like HSV likely play a role.[49],[50],[51],[52] Many other references argue for and against as would be expected.


    Viral reactivation:
    Newer studies are now elucidating a mechanism whereby re-activation of virus in cells colonized by HSV is controlled by a complex mechanism of CD8+ effector T cells with specific gamma interferon.[53],[54] Another study looked in detail at the glycoprotein antigens produced as HSV reactivates in neural tissue, antigens which are specifically recognized by CD8 T cells which influence these CD8 cells to participate in the inflammatory response to HSV reactivation.[55] Evidence suggests that low level production of a specific HSV glycoprotein prior to viral DNA synthesis is what keeps HSV specific CD8 T cells in the infected tissue and activates them to respond, preventing viral reactivation.20,[56] Stress-induced glucocorticoids appear to suppress these HSV specific CD8 T cells and may play a role in re-activation of latent HSV.[57],[58] In addition, experimental suppression of HSV specific CD8 T cells induces reactivation of HSV infection.[59] It also appears that CD4 T cells are important in HSV clearance.[60] However, the local control of HSV in neural ganglia appears mostly dependent on a local population of HSV specific CD8 T cells, apparently independent of blood circulating CD8 T cells.[61] The latter implies that peripheral antibody titers are not likely to change with flare-ups, especially if not severe enough to cause major loss of neural tissue. Most interestingly, shingles, Herpes Zoster/Varicella related disease, appears to have a quite similar CD8 T cell relationship within the ganglia of affected nerves.[62] Of course, shingles is a viral neuritis resulting from reactivation of a latent Herpes family virus as is postulated to occur from Herpes Simplex for both vestibular neuritis and Bell’s palsy. Our experience is that all patients who have vestibular neuritis whom we have checked have positive VZV IgG titers but not all have positive HSV IgG titers. An interesting question is whether the causative virus might sometimes or even often be VZV in at least some of the more severely affected persons. Indeed, some researchers do believe that a correlation between the influenza type B, Coxsackie B5, and VZV plays a role in vestibular neuritis.[63]

    Much more is known about how the Herpes family viruses interact with the immune system and neural tissue such as the vestibular nerve and other cranial nerve ganglia that cannot be reviewed, here. Our clinical experience is that among those patients with chronic vestibular neuritis symptoms, a high percentage, as R Gacek suggests, improve and stay improved on long term antivirals.

    Our clinical experience mirrors that of R Gacek and is that a high percentage of patients with chronic or recurring vestibular neuritis induce remission of symptoms on high dose valacyclovir; that fewer do so on long term acyclovir and as dose drops below 500 mg valacyclovir po TID, the recrudescence rate goes up. In our experience, about 30% of patients relapse within several months after stopping antiviral therapy. It is clear as well that some patients never attain suitable relief of symptoms, that many but not all of them have some degree of permanent documented vestibular impairment, and that psychological factors and motion intolerance are common in this group of patients.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You can include as many links as you want AFAIK, @Rrrr, but your links seem to be about ear problems, not visual/eye problems.
     
  11. anciendaze

    anciendaze Senior Member

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    I have had transient episodes of binocular negative scotomas, which were originally blamed on hypoglycemia, for decades. I have ordinary sinus headaches, but not migraines. My blood pressure tends to be low. Here's a link to a page in Dejong's "The Neurological Examination" turned up by Google search.

    It is important to correct the mistaken idea that these areas of the visual field will always appear dark, colored or missing. The brain does a remarkable job of filling in missing information, based on the region around the scotoma. In an episode that really scared me, long ago, the pattern in wallpaper I was viewing completely filled the area, hiding a sign I was trying to read. This affected vision in both eyes. An eye exam after that episode showed no permanent loss of visual field. This indicates a transient problem further back in the brain, not in the eyes themselves.

    During a recent episode, I noticed what are called fortification spectra of migraine auras for the first time. Lying down and taking a "Salt Stick" capsule (which boosts electrolytes, including potassium) allowed the problem to resolve in minutes. I do not recommend "pushing through" such episodes. (I discovered that link to potassium without being told by a doctor. It is in research literature which most never read.)

    I have long been extremely cautious about driving when I have the slightest evidence of visual disturbances. Experience with a negative scotoma which covered about 1/3 my visual field after I got out of the car is the reason.

    Added: I suppose it is necessary in this thread to say that I have never taken LSD. I was an outside observer of a number of the walking wounded who had "turned on, tuned in and dropped out". One of them was able to watch colored balls fly out of one speaker and disappear into another during a drum solo -- without any further chemical aid. He had previously taken a lifetime supply.
     
    Last edited: May 4, 2015
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have had a couple of scotomas with a few years between each one, and then a few years after the second one I had a nasty episode last year which was diagnosed as migraine. Only the one so far.

    I took LSD about 100 times from the 1970s-1990s, and never had obvious visual after-effects from them, despite having amazing visuals during them!

    EDIT

    PS What is a lifetime supply of LSD?
     
  13. anciendaze

    anciendaze Senior Member

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    When he turned himself in to drug amnesty, to avoid courtmartial, he usually said he had taken "three four-way hits of acid every day for three years." That should do it.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What is a 'four-way hit?" Never heard of it.

    Taking it every day sounds odd. In my druggie days it was understood that LSD stops working after a few days in a row. I usually took it about once a month. I didn't know anyone in their right mind who took it every day.

    Maybe that is a clue: "anyone in their right mind." Maybe the lack of apparent effect after a few days masks damaging effects on the brain.
     
  15. anciendaze

    anciendaze Senior Member

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    He meant he kept upping the dose to get continued effects. He was taking four doses that were enough to cause hallucinations in normal people, three times a day. This dude had definitely fried his brain, by any number of measures.
     
  16. Dufresne

    Dufresne almost there...

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    I knew a guy in high school who used to dose regularly, as in several hundred times by graduation. He always had that far out look like he was half here and half somewhere else. The funny thing is, he was a math wiz; literally the best in the school. The last I heard, he'd made himself a ton of money in the stock market and retired to Miami Beach. Stranger than fiction.
     
  17. Rrrr

    Rrrr Senior Member

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    @MeSci, nope, not just about ear issues. it is about vestibular problems. and the vestibular includes the ear, eye and brain.

    i have a vestibular injury, for lack of a better word. it causes me to have jumpy vision, delayed vision (when I turn my head) and balance problems.

    ____

    i went to a new (to me) vestibular doctor in Worcester, MA, today. Dr. Gacek. he was lovely. 85 yrs old (??!!), very smart and active.

    his theory is that a herpes virus causes vestibular problems. he can't seem to get other doctors in the vestibular community to listen to him, but the patients who come to him with vestibular issues have their vestibular issues resolve once he gets them on antivirals (mostly acyclovir or valtrex). so that is pretty obvious, isn't it?

    but he only told me to stay on the antivirals i'm already on, for life, saying that a herpes virus (could be Epstein Barr Virus, or Herpes Zoster or Herpes Simplex Virus) is in my vestibular ganglion (nerve cluster), and that that is causing my vision issues. he says the antivirals will help keep at bay the exacerbations of the vestibular problem. (exacerbations = having to hold on to walls to get to the bathroom, etc. exacerbations can last hours or weeks or months.)

    but he also said it is unknown if my baseline jumpy vision, which I've had since 2008, will get better, due to "unstable lesions" in my brain, caused by -- you guessed it -- the herpes virus in my brain.

    this virus is (these viruses are) also, obviously, causing much of (all of?) my ME/CFS, too. so at least the antivirals should help both my vision and my ME/CFS.

    but the trouble is that they do not stay working for long for my ME/CFS. they start like a miracle cure, and then i lose all gains and get sicker again. case in point: been bedridden a lot these last few months, all while on famvir (an antiviral) 500 mg BID or TID (2-3x/day, the right dose).

    also, some of the antivirals can make my stomach burn and give me heartburn.
     
  18. acer2000

    acer2000 Senior Member

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    I have ocular pre-migraines. I see spots, distortions, etc and then about 30 mins later I get a migraine headache. However, if you are getting visual problems and you haven't yet seen a neurologist about it, I'd do that. There are lots of serious problems that can cause visual problems (stroke, TIA, various eye diseases) and it would be good rule out those problems.
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Copied from the other thread:

    'Vestibular' is an adjective and means relating to a/the vestibule. Details of vestibules can be found here.
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Replying to myself here. Your problems sound as though they are vestibulo-ocular in origin/nature. More stuff about it here.
     

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