u/oneiropolis

One of my major symptoms, and the one that seems to be the first to flare up, is a sort of double vision thing that is most noticeable when I look at:

• small, high-contrast things like text on a screen or page; the edges go wavy/pixellated/shimmery, or I see two lines instead of one, even with one eye closed. This gets worse when I'm hungry, and is worse in bright light. Makes me feel a bit nauseous to read.
• distant objects like stars or planets, where I will see double and the two stars seem to move around relative to one another (like I can't focus). Worse when I tilt my head.

Because it's worse when my blood sugar drops and doesn't resolve when I wear reading glasses, it seems like an optic nerve or neural problem. Or it could be something to do with eye muscles, but the monocular double vision that is worse with higher contrast seems, to me, to point to a neurological process.

Told my GP this, but they wrote down "wavy lines at the edge of [patient's] vision" (like a visual migraine, which I have never had), so I don't think they understood what I was describing.

It got way better when I did my loading doses recently, then came back after about 8 days post the last injection. So I guess I have not plateaued! More IM for me ...

Anyway, just curious about other people's experiences with vision or optic nerve stuff.

Curious if anyone else has experienced this. I could always tell, for the last few years, that it was time for lunch because any text I was reading would get sort of wavy and pixellated, like my eyes weren't quite lining up. Usually would resolve after I ate. But then I started also getting panic attack symptoms triggered by hunger - not just woozy or irritable, but full on pounding heart that couldn't be calmed by breathing exercises. (But beta blockers worked.) 2 weeks into loading dose course, this seems to be levelling off (though I'm still trying to be careful and snack throughout the day.) Is this common? Makes sense in terms of blood sugar, adrenaline, brain function. But I haven't seen much about hunger as a neuro trigger specifically.

So as a woman in my 40s, apparently everything is just perimenopause now. Went to the GP (primary care doc) for 10 min appointment, told them that I stopped taking oral B12 for a few weeks and got symptoms of anxiety, wavy/double vision, fatigue, memory problems, low mood ... "How are your periods?" "Like clockwork." "Any hot flashes?" "Nope." "Well your last B12 test was 280 ng/L [about 208 pmol/L] so ... let's talk about HRT. Most women your age are having perimenopause symptoms." "So that blood test was done while I was taking oral B12 every day, so do we really trust it? I didn't want to wait any longer as the symptoms were coming back, and I have some work deadlines, so I started the vitamins again and don't want to go back off to wash out ..."

She basically said there was no point doing any more tests after IF antibodies negative ("It's unlikely to be PA" - no, it's 50% likely with neurological symptoms!)

Went back and read some of my medical file and lo and behold, a previous GP had written that I was having anxiety due to work stress and that explained my "panic attacks" ... so now I am flagged as an Anxiety Patient. The helpful timeline of symptoms I brought to the appointment they're probably laughing over about what a hypochondriac I am. I was having anxiety because I was having panic attack symptoms for no reason, actually! Went private for injections, but now I really don't trust those docs to manage my care on HRT either.

I am preparing to write a complaint letter - once I feel a bit more stable.

Just venting. I hope other ladies of a certain age can find solidarity here at least. It's great that perimenopause is more visible - but I don't want to be called hysterical, literally, and treated for something I don't have symptoms of while ignoring the documented thing I am having symptoms of!

Okay, here's another side effects I am curious to know if others experience. When I first started taking oral B12 (methylcobalamin) I was feeling fine, a bit better, the first couple of weeks, but then I noticed I was peeing constantly and my pee was totally clear, colourless (and odorless) for many hours after I'd taken the pills. I thought I was drinking too much water (doc had told me to) and my electrolytes were out of whack. Then I started to get what I now suspect was hypokalemia (low potassium) and maybe also dehydration (?) symptoms: heart palpitations, dizziness, nausea, terrible headache, pins and needles, numb arm. These would clear up usually by the evening ... so the doctor thought I was having anxiety attacks due to work stress! But it was bad enough that I had to leave work one day when I almost fainted and went to the hospital with chest pains. Went off the high dose oral B12 when doctor looked at blood work and said my B12 was fine now (story for another time ...) Fast forward to July and I am getting loading dose injections finally. First and second shots, fine, but after the 3rd one I start peeing like a racehorse, totally colourless, liters over the course of the day. Fortunately the pharmacist told me to drink copious coconut water and eat bananas and avocados! They did seem to help the shakiness and pounding heart and headache. The clear pee lasted for 4 days, though the evening of injection 4. Normal since then, through shots 5 and 6, so I guess I am through the worst of it. I guess it's something to do with bone marrow and/or nerve repair hogging all the potassium, and kidneys dumping water to keep concentrations stable. I have see hypokalemia as a warning on some IM B12 leaflets (not oral though), but no one mentions the peeing ... Do I just have the most hyperactive (or funky) kidneys? Please tell me someone else has experienced this ...

Has anyone else experienced a sweet taste in their mouth (or other taste) after hydroxocobalamin IM injections? I had this for the first four, but then it was less and minimal for the 5th and 6th ones of the loading doses.

Something to do with excess B12 compared to transport proteins leaking into saliva and activating taste receptors???