Really struggling

[TheDukeOfDogs]

I am six months into treatment of quite a severe deficiency (healthunlocked.com/pasoc/po..., and although many of the changes I've observed have been positive, my brain is a trainwreck. I'll explain, but I'll go back in time a bit first for some context:

Maybe 10 years ago I suffered from migraines. Only occasionally, but I had never had any in my life prior to this. Sometimes the nerves in the back part of my brain would be in agony, and other times, the nerves behind my left eye. After a time they stopped. Fast forward a few years and after having my ears syringed at the doctors I was left with a constant ringing in mainly my right ear. I had an MRI which was clear and was diagnosed with mild sensorineural hearing loss in both ears. Also around the same time I began to have trouble visually focusing on things, so I saw an optician and was prescribed glasses.

Fast forward to my treatment and and around February this year I started noticing that my hearing was improving, the nerves in my ear canal itself became more active and the tinnitus began to change, as though it had moved from a noise in my ear to a noise in the back part of my brain. As time has gone on those cranial nerves (one up near the top, the other at the base of the skull) have been hurting periodically - nowhere near as bad as when I would get migraines but painful nonetheless. The nerve near the top often buzzes like a current is going through it and I'll feel it fire to some random part of my body and make it twitch like mad for five seconds. The worst part is I can feel that nerve constantly. Like it feels tight. Sometimes if I move my eyes in a certain way it makes that nerve hurt, like it's pulling on my eyeballs and vice versa. My brain literally throbs and aches and I cannot escape from it. It's really affecting me. Twice in the past month I have gotten up for work and noped out and called in sick for a few days. And those days I just spend curled up in bed eyes closed but not sleeping, just trying to rest my brain. Thank goodness the company I work for are really good about it.

I guess all I can do is pray that all this activity means something positive is going on in there and eventually my brain will be a calm and happy place but I'm struggling to be hopeful right now.

Just needed to vent. Thanks for listening.

[Nackapan]

All very familiar to me unfortunately. Especially your description of eye ball being pulled.

I also suffered with migraines. Tinnitus

Jaw pain ,

I also had vertigo.

Now s vestibular disturbance.

Good news for you is the migraineshavd ceased.

I have constant head tightness .

Back of my head used yo zap painful waves.

I also had a brain mri .

E infact one including thd upper cervical cord.

Some t4 flares and white mask.

But told nothing sinister.

I'm approaching 5 yests in .

Much has improved .

A long slow process though.

How often are you having b12 injections 💉?

Things will improve.

No quick fix I was told by a neurologist

So true

[wedgewood]

Sorry to hear how unwell you feel . That’s really awful for you . What you don’t tell us is what your treatment is . I realise that’s it’s B12 injections , but you don’t say how often you get them . . I guess that’s it’s not more than every 8 weeks . Whatever it us , it may be a good thing to have them much more regularly . Most members on this forum (I dare say all !). are obliged to self-inject to keep well . If you would like to know more about this possibility and how to obtain the B12 ampoules etc , just ask .

It is more than difficult to obtain more than 8 weekly injections from your GP , because of the gross ignorance about PA /b12 deficiency. Best wishes .

[Jillymo]

Hi,

Have you discussed this with your Gp ? Maybe a brain scan is needed to highlight what is going on in that head of yours. It would be wise to rule out the possibility of a vestibular issue.

My brain scan showed I have small blood vessel damage so worth getting checked out.

[daknash]

I started having bad headaches about 4 weeks before I ended up in the ER and was diagnosed with PA. About 1 months later, I had pain at the left side of the base of my skull for about one hour. Then the pain went away for about an hour. Then the same thing happened on the right side and then it never happened again. It was sore when I pushed on it on both sides. I then dealt with burning and stinging inside my brain for about a year until about 6 months after I started self-injecting then it went away. Now my main symptoms are being easily startled by sight and sound, tinnitus and speech, but speech has improved a lot. I hope you get better soon!

[Julie-mumof3]

I have had all the same symptoms which I just tried to deal with for many years as my GP at the time wouldn’t listen. I have since been diagnosed with PA and due to my symptoms I was referred to a neurologist. I had an mri which showed that I had a cyst on my brain however after a follow up mri there was no change so they are leaving it where it is. I still suffer with constant headache which is there 24/7 as well as the visual issues however I also have migraines with auras. I have recently started on a new antibodies treatment where I inject Ajovy injections at home once a month and I’ve just had my 3rd injection on 14th June and already I’ve seen an improvement. I’ve actually had a few days with no pain at all and so far this month no migraines either. I still have visual issues (struggle to focus) and I still have most PA symptoms but thought I’d share