Apologies for yet another post.. but I truly feel like I'm being battered with one thing after another. I am trying to piece together what is B12 and what is something else.
I've had tinnitus for months now, started after I began injecting. However, over the past few weeks this has changed to be pulsatile tinnitus in my right ear only, and only in the evenings.
Today, I suddenly started with a blind spot and dancing lights in my right eye which has progressed to a moderate/severe headache. Looks like an ocular/retinal migraine. Never had one before!
I am already under observation by the eye clinic as I have high pressure in my eyes with signs of optic nerve changes/potential early glaucoma.
Does this sound B12 related? Anyone else had this? I'm concerned that it's related to pressure in my head/brain and I'm flying next week...so praying that won't bring on another of these episodes.
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ClaireWF1346
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I also tried tinted lenses after a consultation with s professor who was part of a team working on coloured lenses fie thise with dyslexia buf found for some successful in helping with migraines.
I also had no history of migraines or tinnitus before b12 deficiency.
After a brain mri
A brain CT
Nothing else eas found to cause these symptoms.
I wax too ill to contemplate a flight so csnt comment on how it could affect you.
I'm left with a vestibular disorder.
My eye health is fine .
I'm back to the same prescription for spectacles.
So I'm assuming it's nerve connections from brain to sight .
I coukdnt watch TV for 3 years.
I still can't use a laptop.
Can use this small dimmed screen of a mobile??
Tried to read a newspaper today .
Still can't without nausea so didn't bother to pursue it .
I had had hight Inflammatory markers from s blood test .
Also T2 flares on brain scan indicating the same.
I'm still making improvements with everything.
I think I had s mixture of different sorts of headaches migraines.
The ongoing vestibular headaches can happen.
Nothing like the same frequency in the first 2-3 years .
You know your symtoms and what makes you worse ot better.
All I can say is on regular b12 injections, modifying my activities and lifestyle I'm on Nothing else now apart from B12 and vitamins .
Eye exercises helped me and vestibular physiotherapy.
Thanks so much for your reply. I'll keep it brief to save your discomfort!
I did consider it could be related to nerve damage from B12D.
I am already under the eye hospital after high pressure on my last eye test. I will report this to them ahead of my next check up.
I also had elevated inflammation markers on my last blood test but was deemed "normal". My fingers are like sausasage with water retention/inflammation which could be down to arthritis. Awaiting rheumatology appointment.
I'm only 40 and feel fed up and worried about all that's happening. It's been a year of exhaustion/anxiety/pain and it's just one thing after another 😭
I had to give up my dream career as I couldn't cope with the demands and sometimes it just feels too overwhelming trying to figure out what is causing what.
I am at the GP surgery every few weeks at the moment as now also awaiting rheumatology investigations r.e. my arthritic symptoms. Hopefully the eye doctor can provide some answers or reassurance on Monday.
Spooky this came up today as I’m going to my opticians this morning due to problems with my left eye that seem to have got worse over the last 18 months and since my symptoms now attributed to PA and B12D started. I’ve been getting occasional headaches, pains and tingling on the left side of my face and blurry vision. I’ve changed by glasses prescription twice in the last year. The problems existed before I started B12 injections but still persist. I’m currently self injecting EOD. My suspicion is that the deficiency caused the head and eye problems. I will discuss this with my optician today. I also have a follow up consultation with a neurologist in a couple of weeks. MRI and other head scans have not identified anything so far.
It's positive the MRI and head scans show nothing sinister, do you think? If these issues are due to nerve damage from B12D I can cope with that better than the worry of something more sinister! It's bad enough, but at least I'll have an idea what it is. Keep me posted and good luck 🤞🏼
The scans were reassuring but at the time my neurologist was looking for MS or Parkinson’s, not specifically B12 deficiency affects.
Anyway, my optician yesterday wasn’t totally convinced that my eye problems were directly B12 related as she found an early stage cataract and some floaters that are affecting my left eye vision. I’m having further eye examinations.
In a few weeks I’ll see the neurologist again and get him to look into the head pains, tingling and headaches (and intermittent toothaches) I’m getting predominantly on the left side.
You MUST go to A&E or your local Eye Casualty immediately. If your angles have closed and oressure risen this is a real emergency. This happened to me. If you don’t go straight away you can suffer permanent sight loss. It is serious.
Thanks for your concern! I checked the symptoms list as you recommended and I didn't have eye pain, redness, halos around lights yesterday. My symptoms match those of an ocular migraine; vision issues for around 45 minutes followed by a moderate headache that went after taking ibuprofen. I went for a run and hour before this came on and ocular migraines can be triggered by exercise. To be safe, I will report it to the eye clinic for them to advise further. I hope you caught yours in time to avoid permanent damage ☺️
But you said you had head pain. I had no eye pain, just a head pain that didn’t go away with paracetamol. Please go and get checked. One eye is permanently damaged because I wasn’t seen in time, when my second eye went 9 days later I knew what to do and my vision is perfect in that eye.
I really do appreciate your advice, but I know that if I go to A&E, I will sit there for 6 hours and they will just refer me to the eye hospital that I am already under. I don't have any symptoms today, so I don't even know if they'd see me in A&E. I have brought my appointment with the doctor at the eye hospital forward to next Monday. If this happens again, I will take action!
You need to go and ask to see the on call eye doctor. Failing that go to your optician and get your pressures checked. I can’t emphasise enough how important this is. Or, do you have an Eye Casualty? Please get your pressures checked. Any headache plus visual disturbance MUST be checked urgently. I am the voice of experience! I wish I had known then what I know now.
My father had similar symptoms and was told at A&E a few days later it was a TIA (after my Mum insisted he ask someone at Specsavers and they gave strict instructions to head straight to the hospital) hope it isn’t but do get it checked.
I hope so too! My BP this morning was 125/75 and I didn't have any changes to my speech or anything else, so I don't feel concerned about a TIA at the moment. My symptoms follow the NHS page for retinal migraine to the letter, so I'm fairly sure this was what it was 🤞
My dad only had 30 minute sight loss in one eye and slight headache no other symptoms. But definitely a TIA according to whoever saw him at the clinic.
I had these optical migraines years ago too but very infrequently now, maybe once a year. I deducted they were mainly stress related and tried to change my lifestyle accordingly. I’m told I’m not such a stress head nowadays. I still supplement SI with B12
I have removed most of the stress from my life by resigning from my stressful job! The only change this week is more hours at my laptop. I think my lunchtime run brought it on but the eye doctor can hopefully advise on Monday.
Thank you. I do suspect this is all related to B12 induced nerve damage. Have booked to see the doctor at the eye hospital on Monday and will inform him before he re-does pressure checks and visual field checks. They picked up changes to my optic nerve back in June, so now I'm on regular check ups.
Hiya Claire, so sorry ur having a bad time 🙁 I used to work in an optometrists n when u mentioned dancing lights u grabbed my attention. If these flashing lights are accompanied by new floaters then u should see ur optometrist or optician asap. It’s best to be safe than sorry. It can indicate things happening at the back of ur eye. As for the migraines try popping on a pair of wraparound sunglasses. These can help in fact I’ve even napped in mine lol! 😎😊🤗
Thank you. The episode with my eye yesterday lasted less than an hour and I feel fine today (perhaps a slight dull headache) but I've booked to see the eye doctor at the eye hospital next Monday. He will re-do pressure tests and visual fields and hopefully advise on whether I need to be concerned about this occurrence yesterday. The headache that followed wasn't as bad as a migraine and went with standard painkillers. I can't see any new floaters today but I'll certainly be alert to them!
My optometrist told me that the flashing lights of scintillating scotoma were not related to the flashing lights accompanying floaters and that they could not pick this type up on checking. When I get them they generally last around half an hour, gradually disappearing to the outer edge of vision and are followed by one sided headache, but nothing like a full blown migraine. Good luck 🤞🏻
The NHS link is the one I used to figure out that this is most likely what I experienced - I had exactly this sequence of events. I spoke with the eye doctor I will see on Monday and he agreed, so we will see if my optic nerve shape has worsened or stayed the same since my last appointment.
I haven't seen a neurologist...it's been a real battle with my GP and they just don't understand the ongoing effects of B12D. They just think that because my IFAB test was negative that I'm fine. So I SI and have as little to do with them as possible. Keeps my stress levels down! If the eye doctor doesn't have sufficient explanation for this new retinal migraine and pulsatile tinnitus, I will have to revert back to my GP and try to get a referral. It feels like a constant battle to figure out what's B12D and what might be something else!
I’m glad to hear u are getting checked out. When it comes to flashes or floaters it is important to get checked especially if your family history has any eye conditions. (Mine has glaucoma in it). Even a recurring visual migraine may need to be looked at in case it was hiding anything. The eyes are funny things. Take me just before Christmas I suffered a PVD in my left eye. (starts with flashes n floaters). That lovely jelly at the back of my eye just gave up n flopped off. It left me with a lovely cobweb ring but it did clear all my floaters up lol. Always looking at the positive 🤭🤣🤣
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