The 12th Invest in ME Conference, Part 1
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Visual Focus Problem with extreme light sensitivity and eye flashing

Discussion in 'Neurological/Neuro-sensory' started by quietjamboree, Jan 11, 2016.

  1. quietjamboree

    quietjamboree

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    I'm posting this for my husband because he's been unable to use his eyes for the last 6 weeks.

    During that time he's worn a sleep mask over his eyes during the day (and sleeps in a light-proofed room at night) due to extreme light sensitivity. When he takes off his mask and tries to focus on things closer than about 5 feet, it triggers an immediate crash. He's tried uncovering his eyes for a few hours at a time, being careful not to focus close up. But having his eyes uncovered seems to cause overall strain and lead to general worsening of other CFS symptoms.

    With his eyes closed and covered, he sees stars. These are constant unmoving points of light. Periodically he also sees flashing, which he describes as a strobe-light effect, and less often a sort of static (like tv static).

    He's been sick for 1.5 years now (confined to bed for a little under a year) but the eye problem is relatively recent. It did happen on one other occasion but resolved more quickly and wasn't as intense. Looking into the possibility of silent migraines, it seems like migraines resolve after a matter of time so it doesn't seem to be what he has since this has been going on for weeks. He has an upcoming appointment to see an ophthalmologist but there's never been anything wrong with his vision before. He's also seen a neurologist, had an MRI and a lumbar puncture. The neurologist ruled out MS and said there wasn't anything else she could do for him.

    Does anyone have any insights into these symptoms or experienced anything similar? Any help would be appreciated. Thank you.
     
  2. ahmo

    ahmo Senior Member

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    Very sorry you and husband are going through this. I don't have any understanding of these symptoms. However, B12 deficiency can contribute to a range of neurological symptoms. I had nothing so severe as this, but my light, noise, and smell sensitivities were dramatically reduced w/ B12, also eye floaters. I'm linking a couple sites FYI. The vid is of an MD who was undiagnosed and wheelchair bound before they stumbled upon B12 as the cause. good luck.

    Diagnosing and Treating Vitamin B12 Deficiency‬

    http://www.b12deficiency.info/
    This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place
     
    Paralee and PatJ like this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    I also heard that adrenal issues (I think that was it) can cause light sensitivity issues which I have. Your body can't react fast enough to the light so your pupils don't dilate. That's very simplified. I can hunt for the info if you want. I think I saw it on another forum.
     
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  4. Old Bones

    Old Bones Senior Member

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    I have never triggered a crash by attempting to focus. However, there have been many times, especially during periods of worsened fatigue, when I am unable to focus my eyes at any distance. For this reason, before appointments to test my vision for new glasses, I must aggressively rest. Otherwise, any prescription I receive will be utterly useless. In the early days, part of the problem was a greasy film over my eyes. These days, the issue seems more functional or neurological.

    Again during periods of increased fatigue, I experience strobe-like flashing lights, only noticeable when I close my eyes.

    Here's a segment from the website http://www.fightingfatigue.org/visual-problems-with-mecfs/ you might find interesting:

    "The visual symptoms typically encountered with CFS patients include:
    • Blurred or foggy distance and/or near vision. Blur tends to fluctuate according to the state of the fatigue at the time;
    • Difficulty focusing from distance to near and/or near to distance;
    • Slowness or inability to focus on objects, particularly at near;
    • Difficulty tracking lines of print. Patients seem confused and distracted by the lines of print above and below where they are reading;
    • Poor short-term memory and concentration (generally) with reading being markedly affected;
    • Diplopia or ghosting of images;
    • Problems with peripheral vision; patients complain of not seeing objects in their side vision and of continually bumping into things and veering. Some say they feel like they have tunnel vision;
    • Misjudging distances, clumsiness, poor balance and coordination. Difficulty driving due to problems judging distances;
    • Dizziness and inability to tolerate looking at moving objects;
    • Spots, flashes of light, floaters and halos;
    • Intolerance to light (glare);
    • Grittiness, burning, dryness or itchiness. Patients complain of sore eyes usually becoming worse as the day progresses;
    • Headaches often increasing when reading, concentrating visually and driving.
    • In many cases almost all of these symptoms occur, producing varying degrees of disability. These patients have sensory intolerance and appear to have a degree of inability to suppress background sensory events from reaching a distracting level in consciousness."
    Since symptoms for many patients are quite variable, the fact that your husband has experienced vision problems recently doesn't mean this will be an ongoing problem for him. I hope the ophthalmologist finds nothing to be concerned about. Do let us know.
     
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  5. Bead Dog

    Bead Dog

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    As linked above, b12/folate deficiency can cause visual effects like those listed. When I first became ill, I had that shooting stars effect, light sensitive and trouble with focus, especially with moving objects. I know I had macrocytic anemia, but for me, MS has still not been ruled out after three years. Hope you find some relief.
     
  6. Paralee

    Paralee Senior Member

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    May I throw in a couple of other possibilities? TED (thyroid eye disorder) can cause the visual effects. It usually has pressure behind the eyes or one eye. One eye can get bigger than the other sometimes and they protrude.
    Another is the visual effects and pressure pain from having a reaction from fluoroquinalones. I had those, and getthem occasionally. Another is hypercalcemium, a lot of times can be from hyperparathyroidism. Can't think of any others right now, but it's freaky, isn't it?
     
  7. Justin30

    Justin30 Senior Member

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    I had this exact same symptom. When i first got sick the only thing that stopped it was clonezapam and injectable magnesium and taurine.

    Im not a Dr and anything taken should be consulted with a physician. I still have noise amd light sensativities but they are a bit better.
     
  8. quietjamboree

    quietjamboree

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    That's really weird. A couple months after I asked if anyone had experienced anything like this, my husband started taking clonazepam and it's uncanny how much it helps his symptoms. He's still sick as hell but a lot of the eye symptoms go almost away when the clonazepam is in effect. The pain in his hands and feet and his mood swings (uncontrollable sobbing and anxiety) are helped a lot by clonazepam as well. As soon as the drug wears off the symptoms all come right back. This would maybe point to an lack of GABAA? Or an imbalance in GABA and glutamate? Or damage to GABA receptors? My husband had an appointment to see a neurologist earlier this week and we asked him these questions and he acted like we were a little crazy. (But I guess we should used to that by now.)

    Too bad it's not it's not a sustainable plan to have a benzodiazepine habit. He's already starting to build a tolerance to clonazepam. And once it stops working it's going to be a nightmare to have to get off of. Fun times all around.

    Interesting about the injectable magnesium and taurine. Did a naturopath do that? How did you come upon that treatment? How often did you do it?

    How are you doing now? Do you still take clonazepam and do injectable magnesium and taurine?

    Thanks everyone for all the information. It's very helpful.
     
  9. Justin30

    Justin30 Senior Member

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    Mag and taurine fone at home prescribed by an ND.

    tolerance does build at least in my case.
     
  10. taniaaust1

    taniaaust1

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    Its not weird, clonazepam is actually a well known medication for ME/CFS people to help stop some symptoms esp those in which one has over stimuli eg your hubbies symptoms eg he's getting what I call brain overload and hence crashing when he tries to focus on things with his eyes. I myself was on this low dose for a while after reading Dr Cheney's info on ME and this (this drug is also called Klonopin ..here's a ME/CFS article on this http://www.prohealth.com/library/showarticle.cfm?libid=8021 )


    it helped me too. I was on this drug for many months and fortuantely when I did come off of it, I found that the symptoms I had started taking it for in the first place were gone (and I had no issues going off of it cold turkey)... and those symptoms never came back strong again. So for me this drug was like a lifesaver to me. I had quite severe overload symptoms which was unbearable before I started this drug

    Many with ME do fine on this at low dose long term, while a few others havent been so lucky and built up tollerances and issues around the drug. there is at least one at this site who had to go to drug rehab after being on this.
     
  11. Paralee

    Paralee Senior Member

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    Everyone here has had great responses (maybe not me) but I'll throw in one more, and I don't know why, but vitamin D3 hit my head reading this again, FWIW. Hope he's better.
     
  12. quietjamboree

    quietjamboree

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    May I ask how much clonazepam/klonopin you took when you were taking it regularly (were you taking it every day and how much?) Some people seem to have no problem stopping and others have a terrible time. I know it's not a good idea to stop completely because of the risk of seizures so he doesn't plan on just stopping but I'm worried about him even being able to come off it slowly because of how much it helps his symptoms right now. It's the difference between being really sick (with clonazepam) and really really really sick (w/o the clonazapam). Psychologically he's a wreck during the latter scenario. But eventually it's going to stop working for him so he's thinking it's better to try to quit now before he's up to a mega-dose.
     
  13. taniaaust1

    taniaaust1

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    who's to say eventually it will stop working for him, unless he's already building up tollerance to it.

    I cant remember now what dose I was taking but it was the lowest dose mentioned online in articles which Dr Cheney recommends to his ME/CFS patients. I took it daily. Dr Cheney has said he rarely has had issues with those who have ME and this drug.
     
  14. Silence

    Silence

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    My first thoughts would be chronic microglial activation. This can cause an imbalance of glutamate and gaba, hence why benzos usually provide relief to a lot of people with cfs. My brother has had success with diazapam ( valium) on a low dose schedule which has relieved his nuerotoxic symptoms.

    As for me, LDN ( Low Dose Naltrexone) has helped me tremendously with these types of symtoms. Perhaps he could give this drug a try. It took me 6 months to notice any benefits though, and that was on 1/4 of 0.5 mg.

    Hip has made a good thread detailing things one could take for microglial activation. Habe a look. http://forums.phoenixrising.me/inde...-treatment-using-microglial-inhibitors.34164/
     
    Last edited: Aug 7, 2016
  15. Jemima

    Jemima

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    Did your husbands eye problems resolve ? I had flashing lights, which I put down to the M.E, but were discovered to be a vitreous problem. Always see someone of you see flashes of light or floating objects ect, dont alway assume its the neuro probs.
     
  16. quietjamboree

    quietjamboree

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    My husband's eye problems haven't really resolved. He saw an ophthalmologist and she couldn't find anything wrong with his eyes. Clonazepam/Klonopin keeps the flashing at a minimum but he's taking a pretty high dose right now in order to keep that in check. He still has photophobia and can't watch tv, read, or even glance at his phone without feeling pretty sick. And he's now feeling a lot sicker in general since having a round of IVIG treatments last week.

    Were you able to get the vitreous problem resolved?
     
  17. Jemima

    Jemima

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    Hi, well, they lazered the torn vitreous back to the retina in both eyes and said its due to age...ha ha. But, I am still having flashes and blobs and blurred vision, I feel really yuk when I look at things and am very sesntivive to light especially when i move my eyes, or when the light suddenly changes, thank God for the dimmer switch. My left eye drives me mad. I also get a weird intestinal reaction to light but would t be able to put it into words.
    Are you in UK? I am not doing well after this IVIG, does he have it inhospital, and how much does hehave? I get it because they wondered if I also have a type of myasthenia.
     
  18. quietjamboree

    quietjamboree

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    Yes, exactly what he describes. An instant GI/intestinal reaction when he gets over-stimulated in any way, whether it's too much light when his eyes are sensitive, or trying to focus on something with his eyes, or even loud sounds, or talking on the phone when he's feeling sensitive. His stomach instantly starts to hurt and he has to run to the bathroom. Is that what you mean?

    We live in the US. The IVIG is done as an outpatient procedure in the clinic. He's there for a few hours then I take him home. How did your doctor decide you might have myasthenia? I think you have to give the IVIG awhile to see if it works. Several months at least. Some people report feeling so much better. But some people say it doesn't do anything for them at all.
     
  19. quietjamboree

    quietjamboree

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    I'm reading more and more about people saying how benzos help with their symptoms. Unfortunately my husband is not on a "low dose". But it's the only thing that helps with the symptoms.

    He has been taking LDN for awhile now. He worked up to 4.5 mg, which he's been taking for 3 months now. Maybe we'll start to see a difference soon. He was feeling better before he got IVIG last week but that set him back again. It's encouraging that you find it helpful, and at such a low dose. I've heard people have success with very low doses. Are you feeling quite a bit better than before the LDN?

    We've looked into the microglial activation theory and tried some of the things on that list before. It seems like a valid theory. It's hard when you're this sick and with so many different ideas flying around to be consistent and scientific about things. You try something but don't stick with it if it doesn't seem to help right away and randomly latch on to something else to try.
     
  20. Jemima

    Jemima

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    Sorry delay in replying Ive been yukky.
    Myasthenia, well i am so,weak when at my worst, collapsed cant walk talk ect so they tried a few tests for myasthenia but negative, and a tensilon tests for myasthenia which was a bit positive so they treat me for what they call sero negative so give me IVIG. I had it for five days in hospital. Under neurology. Its 8 weeks now and think feeling tiny bit stronger. Whyndoes your husband have the ivig?
     
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