New symptom (hypersensitive ear) after Cyanocobalamine shot

[Heidiv]

Hi all, I'm new to B12-deficiency/Pernicious Anaemia, but have been having symptoms for many years. Lately, after moving to a tropical climate (Singapore), things got way worse all at the same time. The worst symptom is the fatigue/constant exhaustion. I also got really bad muscle weakness and overall body aches, balance issues, to the point that I was afraid that I would get crippled. I've always had problemes with body temperature regulation, cold hands and feet, psychiatric symptoms (diagnosed Bipolar 1 ten years ago), and recently got electric like shocks in feet, my vision went suddenly downhill spectacularly and lots of other things I can't remember.

No Gp/specialist could ever figure out what was wrong with me, until I recently saw a Dutch haematologist specialised in B12-deficiency. He prescribed me 2 B12-shots of 1000 mcg of Hydrocobalamine/week, changed later to 1 shot/week. The issue is that I am staying in Belgium right now, where the shots are done with Cyanocobalamine. After my first shot I got a real worsening of symptoms, my back pain was much worse than before the shot and I felt like I had a bad flu/fever as if my immune system was fighting something. The 2nd shot was Hydrocobalamine and I actually started improving/even getting rid of my back pain about a week after that. Unfortunately, I forgot to bring the Hydro on my 3rd appointment and the dr. was rushing around (leaving next day on holiday) so he gave me again a Cyanocobalamine shot. The same night, I felt like I had a blocked (right) ear and ringing (which went away the following day even before I went to see my usual Gp who said my ear wasn't blocked (I've often had wax build-up in my ears in the past). So I was reassured. But the same evening, I seemed to have some kind of sound (but not ringing) when watching the TV. I'm feeling flu-like again (enlarged gland under my chin right side, cold chills during the night and feeling run over by a truck). I couldn't find anyone's testimonial with a similar experience. I'm worried that the Cyanocobalamine is doing damage to my body/giving me adverse reactions. I am aware that things often tend to get worse before getting better and that it's still very early days (4 shots) in my case, but it's really hard to persist especially as I also have bad anxiety/OCD and I'm alone most of the time worrying (I fled Singapore but my husband is still there as we'd only moved there 11 months ago).

I do think I have B12-deficiency because of absorption problems (I haven gluten intolerance and IBS) and that the little B12 I had got depleted by the tough climate in Singapore. I just would like to know it will get better.

[Nackapan]

If possible try and get the hydroxocobalamin again if you felt it suited you better.

Some of the symptoms you describe like the feeling of being run over by a truck and flu like I've had. Your swollen glands I would get checked out. As some of your symptoms could be the result of an infection.

I hope you feel better soon.

[Heidiv in reply to Nackapan]

Hi,

Thank you so much for your reply! It's reassuring to read others went through the same thing, although I don't wish it on anybody. I've had symptoms for over 20 years or longer (I have been misdiagnosed I don't know how many times) so I know that it will take time (my haematologist also warned me about this).

I hope you're doing good.

[15beansoup]

I am new here but not new to PA well diagnosed 2yrs now. I too have a problem I get flu-like symptoms for 3 days of getting the B12 injection I also can't move my arm for 3 days. Pins and needles I have every day all day long so that hasn't changed. I have started to notice that it's not as severe as it was but still there. So the flu-like symptoms are getting better not as severe as before my throat never swelled but felt like it was swollen if that makes sense. You do feel like you've been hit by a truck. One thing I 've noticed on here no matter your numbers or your symptoms we all have them to different degrees were not crazy or hypochondriacs we are very sick and it should have never gotten to this level. We have got to find a way to educate these Dr.s and nurses because they spend more time with a patient than the dr.s do and can report, Houston we got a problem. It seems so elementary to me. I tell every person I meet to have your B12 checked regularly. Glad your here Heidiv maybe we can learn together.

[Gunj_redjem in reply to 15beansoup]

How better do u feel after 2yrs is there improvement in ur memory?

[15beansoup in reply to Gunj_redjem]

I have permanent brain damage I was 15 yrs before diagnosed it was so severe I was just like stage 5 Alzheimer patient. It has gotten better but some things are still bad my memory is shot I have an attention span of a nat 8 sec I think it was anyway still getting better each day is a new day.

[Gunj_redjem in reply to 15beansoup]

How do u know u hav permanent brain damage? Hav u got an mri done?

[15beansoup in reply to Gunj_redjem]

II have had 5 in 2 yrs seen 2 neurologists neurosurgeons and in oct go and see another one for testing let's just say I didn't do too well on my testing it scares me I told them Bill Clinton was president and I lived in mo. but I don't not too well on all the other parts either but I hold out hope that I can still get it back. I couldn't speak properly with words Example my neck is broken when I was trying to say I have a lot of pain in my neck. and the ball was a banana and that's just tip f the iceberg. I will get this back I am going to see if they will increase my shots.

[Gunj_redjem in reply to 15beansoup]

Why don’t u take frequent injections?

[15beansoup in reply to Gunj_redjem]

I have developed a new thing on top of this when they give me my shots I pass out and was sent out in an ambulance for respiratory arrest so they won't let me give them to myself and insurance will only pay for every 2 weeks

[Gunj_redjem in reply to 15beansoup]

Do u take every 2weeks now?

[15beansoup in reply to Gunj_redjem]

no but I need to with y memory I forgot to go and get my shots x 2 mo. I got one last week my dr said they would have to start calling me to come in because I fall in my numbers very quickly and it shows in my body also. I've got sticky notes calenders phone reminders and still can't seem to keep on top of it

[Gunj_redjem in reply to 15beansoup]

Wat do u do

[15beansoup in reply to Gunj_redjem]

what do you mean with health, a living, ???

[Gunj_redjem in reply to 15beansoup]

Living

[15beansoup in reply to Gunj_redjem]

I am disabled

[Gunj_redjem in reply to 15beansoup]

Oh even I’m in the same boat dependent on my parents😟

[Gunj_redjem in reply to Gunj_redjem]

Generally asking because I’m in the same boat any plans for marriage?

[15beansoup in reply to Gunj_redjem]

no way cant imagine that

[Gunj_redjem in reply to 15beansoup]

Then

[15beansoup in reply to Gunj_redjem]

lost what does that mean ??

[Heidiv in reply to 15beansoup]

Hi, sorry to hear about your brain damage. I also have memory loss and forgetfulness (that's how I forgot to take the Hydrocobalamine to my Gp and he ended up injecting me with Cyanocobalamine although he knows I get adverse reactions from it but he was in a hurry and doesn't believe me). My "brain fog" is not nearly as bad as yours, but still frightening when I can't find words/names. It's terrible that drs. aren't more educated so permanent damage could be avoided. Such a shame. I read Sally Pacholok's book. So much potential lost. I hope that you keep improving though!

[Heidiv in reply to Heidiv]

It's exhausting when you have brain damage but at the same time you have to "fight" with drs. all the time and educate them! At least my psychiatrist who diagnosed me with Bipolar 1 ten years ago admitted that even though he's medically trained "he doesn't know everything" and that B12 deficiency could be causing my "somatic symptoms" (he'd been calling them "psychosomatic" for years). Wow. Shame he didn't believe they were not "psychosomatic" before.

[15beansoup in reply to Heidiv]

some people do need other medications and treatment, There are soo many that mimic each other. sometimes it's one thing going on that makes the connection to the Dr.s these days dr.s want to automatically say its all in your head. Because they can't figure it out, you then become a problem, it makes you question your own insanity.

[Gunj_redjem in reply to Heidiv]

Have you checked your levels...do u feel better after few shots?

[15beansoup in reply to Heidiv]

Thank you so much and I hope you continue to heal sorry about your reaction I don't think I know the difference in this is it the same medication?