Hi everyone I need help. I'm 27 years old and 2 years ago I blacked out and collapse. When i woke up I started having bad pains in my head. I put it down to the collapse thought nothing of it then my vision started to play up... I was seeing static like an old TV set, floaters in my vison bright lights hurt so much. I can't seem to focus i tend to zone out. I see images that are no longer there. Pains in my head got worse feels like my brain was being in a vice and tightened and leaking feeling at the back like hot water. I started not being able to see in the dark its so terrifying I have to have help I can't walk anywhere on my own anymore because my vison blurs so badly I can't see. My nurse at work said its visual snow syndrome for two years I've battled with the hospital to have them look into it. I've been told I've having a brake down, it's in my head, no such thing as visual snow, your attention seeking. I've recently had blood tests and they found that I've have low b12 and folic acid. I've explained to doctors I was having all those symptoms two years ago before they recently found this. I've had mri scan. eye test. Heart tests all come back normal. I know b12 and folic acid has nothing to do with this but yet again I'm going to have to fight to prove its not. I've started to have depression over it. I feel like no one truly understands I want my vison back. I can't see very well. But I don't know what to do anymore could anyone please give me advice. Thank you.
Vss: Hi everyone I need help. I'm 2... - Pernicious Anaemi...
Vss
Hang in there Nikki077, the experts will respond shortly.
I feel your pain. I circled doctors and professionals for years and it finally got to the point last year when I kept losing my voice every 2-3 weeks then I lost the feeling in my face then my hands and feet that they got to the bottom of it. Took countless scans and mri tests before they finally tested B12. I was given an injection once a month for 3 months and then they were going to retest my levels after 8 weeks... I made it to week 6 and couldn't walk. My GP agreed to give me an injection every week for 8 weeks but I found it wasn't enough. I've been self injecting every 2nd day for the last 4 months (yep, the kid who's had needle phobia all her life!) and I wouldn't consider stopping. It's not till you start feeling 'normal' again you realise how many symptoms are associated ... the dizziness, blurred and spotted vision, lack of energy, mental fatigue, depression, tinnitus, numbness, headaches... all that medication I had been incorrectly prescribed is gone and I'm literally nearly symptom free.
As far as I know from anything I've read or discovered on here, you can't 'overdose' from injecting B12. There is no harm trying ... I only wish I did 10 years ago 🥲
Truly hope you get to the bottom of it!
Thank you, and im truly sorry you've had to go through all that. And I'm really glad you've started to get better. I hope doctors will start to listen to me I just wish sometimes they could see what I see.
I'm interested in our history and decision making. I was diagnosed with VitB12 low (207) in October. I had 6 loading shots which seemed to help but felt muscle aches and pains returning after 6 weeks. Had my monthly shot an 2021 that helped but only briefly and GP is giving me 3 more shots over the current week (one more to go) and they have so far (6 days) helped a little but I continue to have muscle weakness, tinnitus, sleepiness which varies from day to day. GP sending me to neurologist but from your experience that may be a waste of time. What finally made you to self-inject?
Hi,
I'm sorry that you are having a hard time.
I have visual snow and my personal opinion is that it was triggered by a migraine which in turn was probably triggered by B12 deficiency.
I found it very difficult to cope with at first.
One of the things that helped me was doing lots of activities that used my other senses especially touch...it meant I was distracted from worrying about my vision.
Have you been referred to a neurologist?
I suggest you find one who specialises in migraine and visual snow.
There is more interest than a decade ago in researching visual snow.
Visual Snow Initiative has a list of VS specialists
visualsnowinitiative.org/vi...
There are online forums for those with VS although I've not used any of them.
I am not medically trained.
I have been referred to a neurologist but she is not looking into visual snow. She doesn't believe it to be a real condition.... Its been my struggle to get doctors to believe me. They keep suggesting things I know I don't have or anything to do with what I'm experiencing.
Visual snow is definitely experienced by significant numbers of migraine sufferers as are many other types of visual disturbances. I have an artist friend who doesn't get headaches just visual disturbances which make it impossible to work during an attack (silent migraine).You might find the heads-up podcasts produced by the National Migraine Centre interesting
nationalmigrainecentre.org....
They also sponsor a forum on HU
healthunlocked.com/migraine...
you can self refer.
"but she is not looking into visual snow. She doesn't believe it to be a real condition"
Well you and I know it is very real...along with all the other VS sufferers.
Link to other articles on Visual Snow
headachejournal.onlinelibra...
nature.com/articles/s41582-...
More articles on Visual Snow can be found if you search for "Visual Snow"on Pubmed.
and plenty of videos about it on Youtube.
I am aware of at least two UK researchers working on Visual Snow.
I think at least one of them is (or was) based at Kings College London. The researchers were recruiting people with VS for a study .
King's College Hospital has a Visual Perception Disorder Service
slam.nhs.uk/national-servic...
Perhaps your neurologist could talk to someone at Kings College Hospital if you're in UK?
There is (or was) a neurologist who specialises in visual snow based at Charing Cross Hospital.
Hi,
A detailed link about VS.
rarediseases.org/rare-disea...
Series of case histories of patients with VS
ncbi.nlm.nih.gov/pmc/articl...
Maybe your neurologist would like copies of some of these articles?
Also came across this article in which someone with VS was successfully treated with amitriptyline.
Thank you so much for all your help. I'm going to print all these off and give them to the neurologist. Hopfully this will help me in proving it. I appreciate you all for taking the time to message me thank you.
Your neurologist might want to watch a Youtube video I found.
If you search for "EAN 2020 visual snow " on Youtube, that should find it.
Has anyone started you on monthly B12 (hydroxo B12) or weekly (cyano-B12) injections since you were low? If not, are you taking any B12 supplements?
Once you have sufficient B12, nerve repair is very very slow so stick with the regime for at least a year.
Any further testing for B12 should show high numbers and this is where you want to be. Do not let them withdraw the injections saying “your levels are normal now”.
You should also supplement with folic acid and a daily multivitamin. The cells in the body can quickly deplete these other vitamins once they get B12. Also, B12 needs these other vitamins to be fully utilized in the body otherwise the excess is peed away since the storage mechanism is broken.
Start a logbook and note all your symptoms each morning, try to come up with a severity score, (say 1-5) you’ll begin to have a better feeling of your scores after a couple of injections cycles. This logbook is a took that gives you some level of control. For me, it was essential for eliminating the anxiety and worry and stress that consume a lot of B12 and exacerbates the symptoms. You can anticipate that certain symptoms will appear x number of days after each injection. Reset your day counting to day zero in the logbook with each injection.
You may also begin to see a roller coaster pattern in your logbook of highs and lows that go along with increase and decrease of symptoms.
The symptoms can also be counterintuitive like you are having a reaction to the B12. These, for me, always appeared in the 3days after the injection. The more severe these symptoms were, the more deficient I was before the injection.
These symptoms are like an overshoot increase each time you get an injection. But you can use them to assess how you are progressing. They indicate that you need more frequent injections. I happen to split my weekly cyano injection in half and take it twice as often to eliminate the roller coaster and also because my Dr won’t increase my dosage. I self inject.
The eye problems are most likely from nerve damage in the brain, very similar situation to tinnitus in the hearing. The repair of nerve damage after getting B12 can make the signals on the nerves, and bouncing around in the brain, a lot stronger and give the false impression that you are doing worse. Hence counterintuitive.
Pain and worry can also increase for the same reason but if you can change your thinking and consider these as “good “ symptoms that nerve repair is occurring, you eliminate the stress and worry that makes them seem worse. They are an illusion but seem very real, especially pain. If you convince yourself that they are good and you work through them, the brain recalibrates faster and they disappear.
The logbook just reinforces your confidence that they are the same symptoms that occurred the previous cycle and are not something new. For me, my short term memory loss was/is one of my symptoms.
I am taking supplements to help with them but no changes I'm still experiencing the same things as before. I've been on so many tablets to help with the pains in my head. They either make me feel so sleepy or no emotions at all. Everything I've tried has failed, I don't think this has anything to do with my low b12 or folic acid as I've been suffering for two years. And had blood tests before and came back normal only recently they found this. But i think because of the lockdown and not being able to get out much has recently caused me to have these two problems. I've kept a log book of all the times the pain has been worse and how bad my eye sight has gotten over the two years. I even gave this to the doctors but they never even acknowledge it. Its like a repeat every time I try to have them look into it they just say its all in my head or make an excuse as to why I'm experiencing this. I even said I'd pay to see a private doctor knowing it would cost a fortune. Then they say we will look into it i get happy..... then I get a letter of them sending me for tests that I've already had and they know are going to come back normal. Some days I feel like just giving up the fight and just suffering through it all. But I know I can't because it's been getting worse.
We have all been fobbed off by Drs on our journey to get our answers. The Low B12 may have more to do with all your issues than you think. I’d ask the Dr to have a go at giving you monthly B12 injection, which are harmless, before your neurological damage gets any worse.
Hi,
Do you have other symptoms besides the VS?
Do you mind me asking which country you are in?
I'm asking because patterns of treatment for B12 deficiency (and folate deficiency) vary from country to country.
My own experience of B12 deficiency is that it is often not well understood by GPs and specialist doctors.
One of the VS articles I linked to, mentioned the possibility of VS being linked to some form of neuropathy.
Neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
"I've recently had blood tests and they found that I've have low b12 and folic acid"
Do you know why you had B12 deficiency and folate deficiency?
I'm in UK, so some links I post may have info specific to UK.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
Two useful books about B12 deficiency
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
If you're in UK, the BNF treatment info in this book is out of date. See BNF link below if in UK.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
I am not medically trained.
I bunny the only symptoms I've had are the ones I've explained in my message. They said that the cause of my b12 was anemia. I've been taking medication for b12 and folic acid but still no changes. I'm still having pains in my head still seeing static and experiencing all the same things. I'm just going to wait till all my tablets have gone to see how I am at the end if still no changes then I'm going to push for being diagnosed as vss.
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