Confused

[Nackapan]

Since my last b12 injection 10 days ago I've been really poorly. A shift or decline in symptoms .

I've never been symptom free . I've been in a constant. headache/migrain/skull pain.ive had another look at vitamin s I take . Drinking g loads of water. What was scary as its happened four times now is I suddenly feel ill cant move head really tight . Tinnitus on speed. Then it all eventually calms down. One afternoon I was stuck like that for 4 hours and my left arm was painful to my hand. . Then a headache started in the early hours. Ongoing nerve fragility head shoulders and neck?? Inner vibrations and pains running up the back of my head. I've been discharged by 2 neurologists now!! Last opinion was chronic ongoing tension headaches. The other variant migraines and concussion . Noone has any idea about the severe light and noise sensitivity. I'm on 2 weekly I jectuons. Have been for 10 months after initially being on 3 a week then once a week. Tried 3 weekly a couple of times

I went around the block as so achey in my body. I was surprised my body felt quite strong and wasnt weak . Unusual when injection due in 3 days. Feel like I've just fallen over. Also waves of anxiety. That I haven't had foe over a year.

All very odd and unsettling. I hope it's my brain recalerbrating. Or is this familiar to anyone ??

Oh I also tried pysio to release tense neck muscles in the hope of a better blood supply to my brain. Still waiting for the NHS one as there cancelled 3 times. I paid and went to an experienced one

He was good and e ercises were very gentle. I had to cancel because head pain too bad and coukd move or talk. When I was able to contact (appt had been cancelled for me) he said not to go back u till headaches settle. So discharged??

Sorry so long but really not sure what to do next. Gp wants me ri take b12 tablets. I have to show willing as had them. She obviously wants ne ti get the Injections further apart. Thars why I'm playing ball.

Any thoughts appreciated listed. So frustrating

[buster_uk]

I hope you find an answer Nackapan. I too am on a bit of a relapse... new pains all over.. breathlessness has come back.

It certainly is not straight forward.

[Nackapan in reply to buster_uk]

Oh sorry to hear that. I'm quite frankly on a low at the moment. Its what relentless pain does though.

Every time I try and do something simple like a food shop or a walk I seem to really pay. I looked in my diary and although it didnt feel like it I was better last September. I certainly got pain free periods .

Hope you pick up soon too. Good to hear from you. T c

[Sasical]

Hi Nackapan

Have you looked at other options other than B12 defficiency? Are you female? Thinking of hormones here

[Nackapan in reply to Sasical]

I'm post menopausal .I'm 58. Very familiar with hormones . It's what I believe caused low stomach acid and caused the b12 deficiency. My body just didnt work the same and I pushed too hard as trying to help others

This isnt hormonal. Thank you for your thoughts.

I seem to be locked in some sort of vestibular disturbance . I'm trying g very hard to put right but failing g at present.

[Hidden in reply to Nackapan]

Sorry you are not feeling well, Nackapan. I was wondering if maybe a Ear, nose and Throat/ ENT specialist, would be worth a try, or having an MRI of your cervical spine. Hope someone finds the answers.

[Nackapan in reply to Hidden]

Thankyou.

I had an mri last September but for some reason it was brain and upper spine . That okay 'normal wear and tear

I asked for an Ent at the start bit refused one as didnt take the medication for vertigo. It was for sickness

I wasnt sick??

I will ask again as something being missed . I have however got a referral to a neuro ophthalmololgist

I hope they can answer the light sensitivity and unable to read A5 or larger. This last 5 days has definitely been some sort of migraine . I've had to avoid lights completely and movement sets it off again.

Thanks for reply. Hope you ate doing okay.

[natcap1]

Hi Nackapan,

It’s so hard for you I can see. I empathise with your situation and it can feel hopeless can’t it because it is like we have a forgotten illness. I don’t feel like I would get any help at all from the medical system if I get worse. But we have to keep trying.

You do seem to have some horrible persistent systems. I do have some similar ones to you. It is difficult when we don’t have description of what a path to recovery might look like, or what point we can expect to get to. All I know is that some of my neurological symptoms are worse since being on the B12, but it comes and goes and can only assume like you that this is part of the healing process that could take many years. I was doing really well and my all over tingling had nearly gone, then one evening just before bed I felt really agitated, I felt fizzing/tightening in my head, then there was a flashing like lightening when I closed my eyes and my tingling started up and my skin crawled. After this my tingling has been worse than before starting on the B12. The next night I had the waves of anxiety that I also hadn’t had since before the B12 injections. Also have the jitters and high level of anxiety since, that went when I moved to 2 SI a week a while back. I’m now having B12 almost everyday now. Only 2 weeks on do I feel slightly better again but in that time I upped my B12 intake to every day.

So it could be recalibration but I guess we will never get an answer to that, due to the ignorance around the impacts of long term deficiency. I will be telling my neurologist about this but I can guarantee that he will just try and get rid of me because he just doesn’t know what’s going on either. He is nice enough but I can see his tactic.

So where does that leave us? Well I wouldn’t risk your B12 levels dropping again and given how ill you are you will need to get that across to the GP. Can anyone go with you to the appointments to emphasise how bad this is for you?

Also things are likely to get a bit better again, so hang in there. One thing I have learnt in all this is that just as you get used to how you are, everything changes again.

Don’t feel alone.

[Nackapan in reply to natcap1]

Thank you very much for that much needed reply.

It all sounds all so familiar.

I am in a dip.

Am usually positive but all this month anything I try and do seems to backfire.

I'm not talking a train ride or decent walk I'm taliki g about one trip to town door to door 1hr 20 . 2 shops with a hat and dark glasses on

On the bed all afternoon even though restless ans have been ill since . That was over a week ago.

Thses last 5 days like you I've revisited anxiety I had at the start. In awful head pain. Nuchel muscles contracting and skull face neck so tight as tiuve described. A migraine of sorts.

The neurologist has discharged me!!

The Go a nice woman but totally out of her depth. She admits it and its trial and error.

Once I get a break from pain I'm sure I will pick up again.

My last b12 appeared not to help but I'm sure it must've done so.thing. a definite shift but like you say worse before a bit better again.

Hope your daily b12 gives improvements very soon for you. Take care