Hi everyone, I woke up on New Year's Day with the room spinning around me. Very scary! Diagnosed as vestibular neuritis.
My question is, I usually self inject weekly which I have continued to do. I don't know if I'm imagining it but the vertigo symptoms seem to greatly improve for a couple of days after my B12 injection and then come back again. Just wondering if anyone has any experience of this please? I'm wondering if I should try injecting more frequently until I feel better. I've had nearly 3 weeks off work and need to go back next week.
Thank you 🙏
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Ipsofacto01
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I am very sorry to read that you are poorly. Vertigo, labyrinthitis and vestibular neuritis are awful. If injections appear to be helping then it may be worth increasing them to Every Other Day and see how you respond.
Several of us have had it or similar. I believe Nackapan has.
I feel strongly that people listen to their body and inject accordingly. Think of Hydroxycobalamin/cyanocobalamin as food, you would not starve yourself when your body is screaming for it.
Our bodies work harder during different times of our lives such as changes in seasons. In freezing cold, we are trying to maintain our body temperature. In hotter times, we are trying to cool ourselves. These are different demands on the body and therefore, more B12 is required. Similarly, when trying to fight an infection or virus, there are more demands. Or an operation. Then looking at the social side of health, we might have hosted or attended more get togethers. These are also demands on the body.
I know Cherylclaire had a couple of busy days over Christmas, injected more and then snuggled up on sofa. Often, I ignore the world, his wife and look after me.
In medicine, medication can be prescribed PRN (pro re nata) meaning when necessary.
I do hope that you feel better soon. Although, you cannot go back to work if you are falling all over the place. It is a Health and Safety issue and employers do have a Duty of Care.
Thank you for taking the time to give such an in-depth reply Narwhal10, very much appreciated. There are so many naysayers regarding B12 therapy that sometimes I think I underestimate what a massive role it plays in keeping me functioning.I shall try every other day and hope that it speeds my recovery.
My finale to be listened to after other symptoms was a horrid collapse. I was reaching up cutting vines standing on an old scratching post .
I think the position wax significant but medics ignored.
Thought I was having a stroke or something as couldn't get up .
Then vertigo.
I don't know your history or b1e I jection regime .
This wax the start for me over 5 years ago.
Had brain Mri ,CT to rule out other things .
It was B12 injections reinstated every other day . An epley manoeuvre I dud at home as Gp failed despite me asking him to do it again and vestibular pysio that got me walking again.
Also got vestibular migraines
Cawthorne exercises.
My progress was over several months .
I'm left with a vestibular disturbance.
I went for another round of vestibular pysio when more able to do more.
Also had ear pressure tests ax have tinnitus .
Had no history of this prior to b12 deficiency.
On no other meds .
It's truly vile .
So if early days do concentrate on sorting it .managing it. .
Pushing through does not work.
Pysio ,b12 and patience does.
Part of my fatigue is my body working overtime to stay upright with skills I've learnt.
Ignoring feelings you are going to fall alien.
Retraining your brain hard work but possible.
Hope it's a warning and you can work on it.
As new yesrs day had you drunk any alcohol?
To get better I didn't/ couldnt drink alcohol for over 3 years.
Lots I couldnt do.
Also coffee made me feel very sick so stopped that too.
Almonds live yoghurt and other foods I read at the time helped.
Also keeping blood sugars steady .
Regular little meals.
Felt alot worse otherwise.
Keep hydrated .
Hope it's less severe and you manage to get over it okay.
Thank you Nackapan. I'm so sorry to hear this and as you probably know, unless you've experienced this yourself, you can't comprehend how horrific it is. I remember thinking "what is this new hell" when I woke up with the room spinning. I had had a couple of glasses of fizz but haven't been able to stomach the thought of alcohol or caffeine since. I SI weekly usually. Initially I was told it was a probable cerebellar stroke but head MRI has ruled that out thankfully.
GP not very sympathetic and has said I should be okay after 3 weeks. I'm so sorry to hear that you have had to cope with it for so long, I can't imagine how hard it must be.
Thank you again for your advice and tips, I have been feeling very alone 😞
I am pleased cerebellar stroke has been ruled out. I know things are difficult now. Several of us have been bed-bound for months from this hideous illness. We are here to support you.
I am just saying hello and you know that you are thought of. I am aware that things are pretty rubbish for you and just the simplest tasks are very difficult. Anyway, I hope your vision is not affected too badly. I find nature amazing as is the human body, hence the image.
Sorry, I was naughty and did not message you yesterday. How are you ? I mean migraine, vestibular neuritis wise. It may take sometime and are you stuck indoors, lying down lots to manage it ? I did take some pics of nature yesterday which maybe you would like. The reflection of the moon on water.
Hi Narwhal10, ah thank you for thinking of me 😊 I had a really good day yesterday and then a really bad night and feeling terrible again today. I am going to try going to work tomorrow and hoping it will be a good day. I'd love to see those thank you 🥰
Oh I’m pleased you had a good day but I am so sorry to read of your night. I wish you all the best for tomorrow. I won’t check because you might be completely and utterly frazzled. Even making a cuppa is like climbing Everest. 🥰
Ah that's beautiful. Do you live by the coast? I am feeling a bit anxious about going back but I have lovely supportive colleagues. Thank you so much for checking in on me Narwhal10, I can't tell you how much it means ❤️
My doctor wanted me to come see him when the room was spinning. But I was too dizzy to even walk the 10 feet to the bathroom without puking. Gravol helped. I also did some balance training with a physio (after most of the spinning calmed down).
I think the physio helped, although it could have just been that things got better with time. It was balancing exercises. The more advanced ones were with my eyes closed. It is harder to balance if you close your eyes. I was dizzy for months after my initial bout. The dizziness that made it impossible to get out of bed only lasted a couple of days.
Last Friday I had a savage attack of dizziness that literally floored me for two hours. I've since researched vestibular migraine which seems to fit the symptoms. I've had migraines in all its forms since I was 10. That first one was brought on by pre 11+ stress!! Last week I had three traumas in four days. And I was floored. Needless to say, I'm injecting EOD as usual. It could be an ear infection or virus but as, like many, I'm left to self-diagnose how do we really know? Now I feel as if I have a brain injury. I rest and wait for my poor body to recover.
Although I have suffered from migraines in the past, I've never had anything like this before. I have practically been in bed for 3 weeks. I'm so sorry to hear that you are feeling so unwell too. Hope we both feel better soon ❤️
Sorry about your migraines. I get severe migraines, very debilitating. My vision is blurry sensitivity to light and sound. I was diagnosed with Subacute combined degeneration in my neck especially. I have a lot of vision and dizziness problems. Failed the rombergs test. The migraines are almost every day. I use an ice pack and that really helps with my headaches a lot. You can buy a migraine headache ice pack it's a ring that goes around your head and velcros on. it's very convenient and helps me very very much. I have more ice packs than food in my freezer. 😬
I've never had anything like the severity of that last attack. And I have found that migraine forms change over the years, or rather, they have for me. I wonder if, once the predisposition is there, there is the vulnerability in the right circumstances for something unexpected and migrainous to happen. It was so bad I did the stroke tests which I passed, I'm glad to say.
Hello, Vertigo was a major symptom of mine with pernicious anemia. I inject everyday and my symptoms have gone away. I still get dizzy and I still have Vision issues but the debilitating vertigo has gone away. I had it for many many years and the B12 daily injections finally got rid of it. I got vertigo so bad I would throw up and was in bed for a week at a time. I get dizzy watching the news ticker tape scroll across the screen. I got dizzy watching the tread on a tractor tire in front of me while I was driving, spin around. I had to pull over. The daily injections are definitely helping with that. Sometimes I inject twice a day. It sounds to me like you might need more B12, especially if your symptoms are coming back before your next injection. You might want to go to once a week or even twice a week or even every day if you need to. Good luck.
Thank you EllaNore, I will try every other day as I already SI once a week. I've been in bed for pretty much 3 weeks now so would really like to be able to function on some level even if it is sub par.
Aww, I'm so sorry you have been in bed for 3 weeks, Ipsofacto01. I spent all of november and half of Dec in bed. Not because of vertigo. That went away 2 years ago. But I crashed for some reason and it took me down pretty hard. That is why I started increasing my injections and here I am 6 weeks later and feeling pretty good. I did nothing else but increase my b12 so that is all I have to give credit to. I sure hope it works for you!
When I did have vertigo so bad that I was flat on the ground and in bed for weeks, it was the B12 increase then as well that helped me. i was only doing 1 a month at that time. That is when I found this forum and I learned to SI. If your vertigo doesn't clear up, you might need to see an ear nose throat doc. I get infections in my ear tubes a lot and the side of my face swells under my ear, so I still have issues with the inner ear but not vertigo anymore. If you are throwing up, they can give you something for that. There are also exercises you can do. oddly enough it has helped at times. Particles of ear wax etc can get into the inner ear and cause vertigo, although, I don't believe that is why we have it. But doing the exercise did help me for some reason. psychosomatics/placebo effect? Maybe. This is the one that helped me in the past. youtu.be/mQR6b7CAiqk
Thank you so much EllaNore, so very kind of you to take the time to share this. I will give it a go and start injecting more. Very much appreciate you taking the time to reply with so much info. ❤️
I have dealt with Pernicious Anemia, vertigo (BPPV), and migraine for the past 20 years. It is only recently that I have thought about how they are related. When I started injecting hydroxo B12 a few years ago, the migraines stopped or were diminished in intensity so that I could function through them. As long as I inject enough B12 to control PA symptoms, I don't get migraines. The vertigo started after using a neti pot, which must have disturbed my ear crystals. It recurs easily so I am careful about head movements especially bending my head back to look up or bending over at the waist to look down. I use the Epley maneuver several times a day when vertigo strikes. When it is persistent and acute, taking meclizine (OTC med for vertigo) and wearing a soft collar to restrict head movement helps. I know that your diagnosis of vestibular neuritis is different, but BPPV is very common as we age so I want to share my experience in case it can help others.
BPPV can be usually be diagnosed and treated at home. Check online for how to determine which ear is affected (and if this is the cause of vertigo) and how to do the Epley maneuver. The first time it struck I was disabled for a month, not able to walk or function, waiting to be seen at a balance clinic. Although it continues to be an issue for me, I know how to control and treat it quickly. Best of luck to you.
Thank you Lin602, I did have the Epley manoeuvre done at the GP at the beginning but it didn't help. BPPV was later ruled out when I attended the AEC Department. I have to say they were amazing. They say my vestibular nerve is inflamed/infected (blood tests helped with diagnosis). It may heal itself in another few weeks or months, or if there is permanent damage, I will have to have physio to retrain the brain. What a way to start the new year. I'm glad you have found a way to control and treat your BPPV, another most unpleasant thing to deal with for you.
I am not a medical professional, but I think your instincts are correct. I expect that the doctor diagnoses all balance-related symptoms as vestibular: "When you hear hoofbeats, think horses, not zebras." How would the doctor distinguish between vestibular and proprioceptive balance symptoms without actual physical balance assessments? Incidentally, I had a range of balance/vertigo symptoms that turned out to be symptoms of Subacute Combined Spinal Cord Degeneration. I am not trained medically, but if it were me, I would increase the frequency of my injections to every other day or even daily for several months to a year, and see if your symptoms decrease in frequency or severity. Incidentally, I have been injecting daily for nearly 2 1/2 years, and with recent physical therapy, I feel my balance symptoms have improved.
Thank you WiscGuy. I love that analogy, thought provoking. I'm going to pass it along to my daughter who is studying Philosophy at uni later 😃 I will try every other day, thank you.
May I ask how your spinal cord degeneration was diagnosed? You are right, so often getting the correct diagnosis is the tricky part. I wonder whether a physio might shed a different light on it for me.
In 2017, due to vertigo symptoms, I called to make an appointment with a neurologist. At that clinic patients seeking to see a neurologist due to balance concerns were required to be tested at a balance clinic. My balance difficulties were said to to be due to brain processing rather to vestibular balance issues. Nothing was mentioned about any possible relationship to B12 deficiency. When I was diagnosed with B12 deficiency in 2021, along with inability to balance with eyes closed, it pointed to spinal cord degeneration, though no formal assessment was deemed necessary.
I'm glad B12 injections have helped you so much. My diagnosis literally gave me my life back. I bang on about B12 to anyone I suspect might have a deficiency. So much skepticism out there though!
Hi Wiscguy, my balance issues were just finally diagnosed as SACD as well. Thank you for posting that. And the only treatment is b12, so I increased my injections and it seems to help. Of course we will never be cured. But a proper diagnosis sure goes a long way to mental healing.
When I tilt me head back to look up, Its still pretty bad. Maneuvering in low light or dark, I get dizzy and feel panicked. Headaches, confusion, dizziness, leg weakness, body pain, lung issues, I feel are all related to SACD. And who knows what else. I have kidney issues, bowel and bladder issues big time. Even though I am feeling better than I have in decades, all these things and many more are still an issue. But tolerable. I expect more crashes, but I think I know how to deal with them now. Anyway, thanks for mentioning the SACD. It answered so many of my symptom questions.
Hope you're not buried in Wisconsin snow like I am here in Iowa! Take care US neighbor.
I am far enough north (an hour north of Eau Claire) that the snow all went by to the south. We have a total of about 3 inches lately, plus what little we got a month ago. It has been cold for a week or two, single digits above zero in the daytime and single digits below zero at night. We are in a warming trend now.
I am sorry to hear that you are having so many difficulties related to B12. S
As I mentioned, since no research exists indicating optimal dose and frequency, and since injections of B12 is the only hope, and B12 has no serious side effects at any amount, I opted to inject daily, starting in September of 2021. I also take 10,000 mcg of methylcobalamin in pills daily, in the hope that I might get one or two percent of that in passive absorption.
Good to hear you didn't get too bad of a storm. We got down to -45 wind chill and I have five foot snow drift in my backyard that I don't think I'm going to see my backyard until spring. 🤣 but I can get out of my driveway so I don't have a problem with snow. I actually like winter when it behaves itself.
Yes as of about a month ago I started increasing my injections from every day to twice a day a couple of times a week. I haven't tried taking any methylcobalamin tablets but I think I should try. And somebody else mentioned adenosyl to me but I don't know the benefits of taking that. Maybe it's worth a try too. I don't know exactly why some take it.
I don't know enough to recommend anything, but Technoid has mentioned supplements that are thought to aid in myelin sheath maintenance, and I take several of those. And Technoid also posted links to videos of 2 researchers, one video each, one on fish oil (Omega 3), the other on creatine. I was convinced enough that I now take those, creatine at the level suggested on the label and Omega 3 at a bit under the level suggested by the researcher.
I inject 2 mg every 4 hours during waking hours and set an alarm to inject halfway through the night.
Thinking maybe I will try and ski again this spring if improvement continues.
A year ago I could not swing a golf club with any balance at all.
I work with what I experience in life does not have to be effected by the experience of having been B12 deficient.
I still have a lot of healing to do. It seems to be possible for me if I inject enough B12 often enough. It right now for me is how much can I improve. Symptoms are in my past for the most part.
Hi WIZARD6787, I have been ticking along nicely with weekly injections until this bump (feels like a mountain at the moment) in the road. Glad you are finding improvement and really hope you can ski in Spring! I feel reassured by everyone that upping the injections is the way to go so thank you.
I am about I do not know and no one else does either. I share my I hypothesis(s) and share my experiences.
I specifically reject I will heal if I just wait, that I cannot be B6 deficient and must suffer peripheral nephropathy and should not supplement with P-5-P as some hypothesize that will be harmful.
I also reject that a particular form of B12 causes side effects and consider the negative experiences to be a result of my body healing. I hypothesize that the acute symptoms seen as reversing out to be the result most likely to be related to infrequency.
I hypothesize that B12 injections are effective for healing 4 to 6 hours and design my trials accordingly. I am still working on amounts. I developed that hypothesis after three years of evaluating what was thought to be true about B12 by experts and those that self treat.
I do not find injecting B12 to be benign and each increase in frequency with or without an increase in amount I experience a uptick followed by a period where my body adjusts to having more B12 available for healing over time. It has never been a this is immediately wonderful. I seem to be able to differentiate between a change that is positive and one that is not even if it is not wonderfully positive over time.
I am pleased with the result of my work which has resulted in my healing.
Thank you WIZARD6787, very interesting. It was Dr Chandy who gave me the confidence to SI and at one point would even provide the B12 free of charge through the post. He was very enlightened about B12, but so few other medical people seem to be and therefore this is what we must do. I've been SI for 6 years and still hate SI every time but I know without it, I will be practically bedridden again.
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