Ocular/retinal migraines: Apologies for... - Pernicious Anaemi...

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Ocular/retinal migraines

ClaireWF1346 profile image
25 Replies

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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25 Replies
Nackapan profile image
Nackapan

Yes sounds very familiar to me.I saw opticians

Hospital Eye specialists

A neuro Opthalmologist

I had alot of visual problems.

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.

Retrained how to move .

Especially my head !

ClaireWF1346 profile image
ClaireWF1346 in reply to Nackapan

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.

Nackapan profile image
Nackapan in reply to ClaireWF1346

Get every test you can to eliminate things going by your symptoms.

My daughter also lost hef chosen career.

Even younger thsn you.

It's horrid and tragic .

Keep looking for answers

Pa234aw profile image
Pa234aw

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.

ClaireWF1346 profile image
ClaireWF1346 in reply to Pa234aw

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 🤞🏼

HeartyGilly profile image
HeartyGilly

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.

ClaireWF1346 profile image
ClaireWF1346 in reply to HeartyGilly

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 ☺️

HeartyGilly profile image
HeartyGilly in reply to ClaireWF1346

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.

HeartyGilly profile image
HeartyGilly in reply to ClaireWF1346

I also had no redness or halos. Just head pain and distrurbed vision, they were my only symptoms. Your sight is important, please go and get checked.

ClaireWF1346 profile image
ClaireWF1346 in reply to HeartyGilly

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!

HeartyGilly profile image
HeartyGilly in reply to ClaireWF1346

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.

ClaireWF1346 profile image
ClaireWF1346 in reply to HeartyGilly

My closest emergency eye hospital is over 70 miles away. I will call the eye hospital or 111 to ask for their advice on this, thanks.

HeartyGilly profile image
HeartyGilly in reply to ClaireWF1346

Brilliant. Sorry to be a pain, but my eye is permanently damaged due to the delay in it being diagnosed and tested. Best wishes.

HeartyGilly profile image
HeartyGilly in reply to HeartyGilly

Treated not tested!

HeartyGilly profile image
HeartyGilly

Google Acute Closed Angle Glaucoma and get yourself to A&E immediately.

Sailinglady profile image
Sailinglady in reply to HeartyGilly

I second HeartyGilly, go to A&E and get checked.

Regenallotment profile image
Regenallotment

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.

ClaireWF1346 profile image
ClaireWF1346 in reply to Regenallotment

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 🤞

Regenallotment profile image
Regenallotment in reply to ClaireWF1346

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.

Lurcher-lady profile image
Lurcher-lady

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

ClaireWF1346 profile image
ClaireWF1346 in reply to Lurcher-lady

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.

Sleepybunny profile image
Sleepybunny

Hi,

I have a permanent condition called visual snow which is related to migraine.

I suspect the visual snow was triggered by the migraine process and that the migraine was triggered by B12 deficiency.

"I suddenly started with a blind spot and dancing lights in my right eye"

If you have time look up "scintillating scotoma migraine".

B12 deficiency can cause damage to the optic nerve.

If you want to know more maybe look up "B12 deficiency optic neuropathy".

Some research and health articles may have details that could be upsetting.

I'm not medically trained.

ClaireWF1346 profile image
ClaireWF1346 in reply to Sleepybunny

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.

SlothMode profile image
SlothMode

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! 😎😊🤗

ClaireWF1346 profile image
ClaireWF1346 in reply to SlothMode

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!

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