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Photophobia/Light Sensitivity

Discussion in 'Neurological/Neuro-sensory' started by Kierkegaard, Oct 4, 2016.

  1. Kierkegaard

    Kierkegaard

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    I've had low-grade light sensitivity with moments of relief for no apparent reason, and times when things get worse. The only trigger that pretty consistently (but not always) makes photophobia worse is drinking coffee, decaf or regular.

    I also suffer from hippus, or fluctuations in the pupil when exposed to light, which sometimes includes pupils that dilate rather than constrict when exposed to light too long. I happen to have low aldosterone (with low renin, i.e., secondary hypoaldosteronism, or the much cooler sounding hyporeninemic hypoaldosteronism), which is important in regulating the balance of sodium and potassium, and have been drinking water with unrefined sea salt but without apparent (maybe slight) relief when photophobia is present.

    Interestingly, the pupil fluctuations started about a year and a half ago after trying a whopping dose of methyl vitamins in a supplement concocted by my previous doctor. I've been tested for serum and plasma (RBC) potassium, and have middling serum levels but levels touching the top of the range for plasma/RBC, which with middling sodium could fit with low aldosterone, except I don't have the typical symptoms of low aldosterone such as constant urination or hearing problems.

    I'm trying to figure out the mechanism by which photophobia occurs. It seems to correlate tightly with hippus/mydriasis problems, i.e., I'm usually sensitive to light when my pupils are noticeably dilating when they shouldn't be and/or fluctuating when exposed to light. The question is whether it's a matter of low aldosterone and the electrolyte imbalances it causes, or if it's related to sympathetic overarousal, which definitely fits my other symptoms, such as the inability to nap, occasional insomnia, occasional abnormal anxiety symptoms (like sticky saliva, sometimes actual nervousness or excessive energy, libido and sexual problems, etc.), poor stress tolerance, and so on. This would make sense, as pupillary dilation is governed by the sympathetic response, i.e., norepinephrine, whereas contraction is governed by the parasympathetic response.

    I do know that when I've been stressed in the past by having too little (or no) sleep that my pupillary fluctuations ramp up even worse, so that seems to indicate (for me) a norepinephrine/sympathetic problem. My current doc has me on multiple antiinflammatory supplements, suspecting that chronic inflammation is creating positive feedback with norepinephrine, leading to hippus, mydriasis, and my other non-ocular symptoms. So far these supplements (fish oil, astaxanthin, vitamin K complex, etc.) haven't helped. I also tried up to 30 mg of hydrocortisone (which is in negative feedback with CRH and norepinephrine and so should lower both) but without any noticeable benefit.

    Anyone have any experience with light sensitivity and how to manage it?
     
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  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
  3. Kierkegaard

    Kierkegaard

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    Thanks for this. I'm compound heterozygous for MTHFR plus other "big" polymorphisms (COMT++, CBS++, etc.), and haven't yet felt a thing since taking big doses of B12 orally or sublingually. Then a few weeks ago I got my hair mineral testing back and have basically no lithium, which I understand is needed for transport of B12 and folate into cells. I hope this is the missing link. I'll be getting serum levels drawn before starting lithium orotate.
     
  4. Valentijn

    Valentijn The Diabolic Logic

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    @Kierkegaard - The CBS SNPs which people refer to don't actually do anything.
     
  5. Nemesis

    Nemesis

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    I have extremely light sensitivity and white color or any bright color sensitivity it makes my heart rate go crazy speed, migrain sometimes temporary blindness or see light flash, hot flashes and hypotension doctor said that it because of migraine and pots
     
  6. Nemesis

    Nemesis

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    Dark Brown polarized sunglasses is perfect as it decrease glare change white color
     
  7. Helen

    Helen Senior Member

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    Last edited: Dec 19, 2016
    SuzieSam, Kierkegaard and Nemesis like this.
  8. Kierkegaard

    Kierkegaard

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    @Helen and others,

    I mentioned on another thread that I have virtually zero lithium, and have lithium orotate in the cabinet and will give it a shot at lose doses as soon as I sort out my experiment with iodine (which helped my mood dramatically, also slight-moderately with fatigue and brain fog, but I eventually swung through my sweet spot). I hear, like on Freddd's thread, that some people take a lot of B12 to basically force it into the cells. Dr Sarah Myhill wants the B12 range to be at 2000 (the usual cutoff is half this) and uses injections as needed to get it here.

    Anyone with experience of taking giant levels of B12 to notice a difference? I'm taking the equivalent of 33,333% of the RDA in a lozenge and don't notice any subjective benefits.
     
  9. Helen

    Helen Senior Member

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    @Kierkegaard , I´m getting huge doses of B12 as I´m injecting mecobalamin every second day to keep up my B12 levels. Otherwise symptoms of B12 deficiency returns. I, myself, never had any light sensitivity though. Did you possibly read B12 instead of B2 ( =riboflavin) in my earlier post?
     
  10. SuzieSam

    SuzieSam Constant companion

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    I have appalling light sensitivity. I wear sunglasses outdoors even in the rain. I have the blue-light filter app on my phone set so low no one else can read it. It never occurred to me my chronic low B12 might be a factor.

    @Helen very interesting about B2. Gonna look unto that. :thumbsup:
     
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  11. Helen

    Helen Senior Member

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    More interesting facts about B2 and B12 :

    " Is there a relationship between vitamin B2 and vitamin B12?
    Yes there is. There are two enzymes involved in vitamin B12 processing that rely on one of the two active forms of vitamin B2 (FAD) for function. Lack of dietary vitamin B2, or low conversion of vitamin B2 to FAD greatly increases the consumption of vitamin B12. In addition, in conditions such as Hypothyroidism, in which less FAD is made, vitamin B12 deficiency is common. Similarly dietary lack of iodine, selenium or molybdenum can also lead to lack of functional vitamin B2 (as FAD)."

    http://www.b12oils.com/faq.htm


    Thanks @garyfritz for highlighting this site.
     
    Last edited: Dec 19, 2016
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  12. SuzieSam

    SuzieSam Constant companion

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    Aha! Explains some things for me. My slow hypothyroid/ME brain will endeavour to absorb this info, and utilise it.

    Unlike my body, which doesn't seem to absorb or utilise much...
     
  13. Mary

    Mary Senior Member

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    I don't know the chemistry but years ago when my chiropractor found that my adrenals were quite weak, one of my symptoms was photosensitivity, pupils too dilated (as well as marked fatigue, stress intolerance, etc.) He gave me an adrenal glandular (Drenatrophin PMG) and it worked great. I had to take about 3 times the recommended dose because I was so weak.

    Coffee is hard on the adrenals so that might be why your photophobia is worse after drinking coffee.
     
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  14. Kierkegaard

    Kierkegaard

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    This thread is such a FAD, what with all its Bees. I hope it doesn't go extinct. :)
     
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  15. Kierkegaard

    Kierkegaard

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    My aldosterone is basically nonexistent, around 1.7 with a minimum that's supposed to be around 7 and up to 30. I also have bottom of the range sodium, potassium (with below-the-range levels for RBC or intracellular levels by a few points), and chloride, the potassium not making much sense seeing how it's supposed to be inversely related to aldosterone. So something weird is going on. Regarding the pupil dilation in repsonse to light (rather than contraction), I definitely have that. Norepinephrine, electrolytes (with aldosterone playing a main role), and possibly acetylcholine (which is the main neurotransmitter for the parasympathetic nervous system, also responsible for pupil contraction) are all candidates for why hippus (that's what you call the pupil flickering) exists.

    I've also had fractionated catecholamines (norepinephrine, epinephrine, dopamine) tested (great doc), and somewhat surprisingly came out in the low-normal range for norepinephrine, meaning it's likely the low aldosterone/electrolyte imbalance and possibly a parasympathetic inhibition/low acetylcholine deal that's going on. I've tried taking half to a full teaspoon of salt and mixing it with water and drinking it but haven't noticed an effect, and also haven't noticed an effect of this (as Dr Brownstein recommends in his book on salt) on my sodium or potassium levels either.

    Regarding the coffee, I'm betting it has something to do with electrolyte changes rather than cortisol (my cortisol has tested in the low-normal range in the morning and toward the high end at other times of the day except night, and tried a trial of 20-30 mg of hydrocortisone without noticing anything). Interestingly, although coffee contains potassium, there's also such a thing as coffee-induced hypokalemia (low potassium).

    Complicated.
     
  16. Kierkegaard

    Kierkegaard

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    Awesome info! I'm on testosterone repalcement therapy, and since the beginning have noticed being pretty sensitive to estradiol, which can slow down the thyroid through increasing thyroid binding globulin, lowering free levels. So maybe this is a mechanism as to why my light sensitivity seems to often be worse when my estradiol is higher.

    Since starting the thread my light sensitivity has gotten noticeably better -- but not consistently -- while taking high-dose iodine per Dr Brownstein's protocol (12-50 mg potassium iodide, e.g., Iodoral). Initially I noticed a big increase in mood, and moderate drops in fatigue, brain fog, and light sensitivity, all becoming noticeable at 30 mg of iodine (quite a bit, but fuck it, you know?). Trick is I was also on 75 mg of diindolylmethane (DIM), which has helped consistently in the past in ameliorating high estrogen symptoms, but iodine is also known (per Dr Jonathan Wright) to reduce estradiol in favor of estriol, presumably (as Wright says) through decreasing 16a-hydroxyestrone, a metabolite of estradiol.

    WELL, after being on the 30 mg Iodoral and 75 mg DIM combo for a week of feeling a lot better, I slowly started to feel worse, meaning I pushed through my sweet spot. Currently I'm trying to fine tune things and find my sweet spot again, currently on no DIM and only 25 mg of iodine, but seeming to have low estrogen symptoms, so I'm as we speak in the middle of gradually reducing my iodine (using iodine drops in Lugol's form to help with a slow decrease).

    My sense is that the iodine in combination with DIM helped lower my estrogen, particularly estradiol (and more complicatedly estradiol metabolites, such as 16a-hydroxyestrone decreases and 2-hydroxyestrone pathway increases with DIM, 16a-hydroxyestrone with iodine), and the estradiol mediated my light sensitivity through slowing down my thyroid and (apropos your link) probably had something to do with FAD, B2, and B12.

    Fwiw, I have very complicated ramblings on how DIM works through changing estrogen metabolism (this info was hard to put together because it's hard to find) another site I moderate at here: http://www.peaktestosterone.com/forum/index.php?topic=11592.msg100234#msg100234
     
  17. Kierkegaard

    Kierkegaard

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    Just made the connection (writing it here for input) that I noticed the beginning of my pupil quivering/dilation in light problems the first day I took a mega-dose of methylfolate (4000 mcg) with other methyl supps (which haven't on their own caused issues). Seeing how methylfolate is supposed to cause low potassium issues in some people, I bet that has something to do with the electrolyte problems I might be seeing now. But I'm not taking any folate now, so there's probably a different mechanism at play.
     
    South likes this.
  18. Helen

    Helen Senior Member

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    @Kierkegaard , you may also find some useful information if you google adrenals, sodium-potassium balance and eye/sight problems.
     
  19. Kierkegaard

    Kierkegaard

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    Yeah, but the question for me is why my potassium is low while my aldosterone is low as well. I also have the more rare low renin hypoaldosteronism (renin being the enzyme that helps kickstart the process that leads to aldosterone), so when you put this together with low potassium I'm looking at the pretty baffling hyporeninemic hypoaldosteronism hypokalemia.

    BTW, it gets on my nerves when so much emphasis all over the Internet at otherwise great sites is placed on "the adrenals" being out of whack without specifying if this means cortisol or aldosterone. Your adrenals can be perfectly functioning but cortisol and other hormones (not necessarily aldosterone, which is only weakly regulated by ACTH) are low because ACTH is low (secondary adrenal insufficiency), with which you can have totally fine aldosterone given it's mostly regulated by the renin-angiotensin-aldosterone system. Or you can have totally fine cortisol but low aldosterone because your renin is low (hyporeninemic hypoaldosteronism).

    The body is pretty complicated. Sometimes I wish I was a worm, lol.
     
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