Trying to decipher symptoms

[Nackapan]

Hello. Since seeing second neurologist I'm trying to distinguish what symptoms belong to which problem. The first neurologist thoughts were demyelination of nerves from b12 deficiency the second thinks post concussion syndrome. Or could be both??So current symptoms are light sensitivity.

Noise sensitivity (got worse)

and headaches went into migrains last week and Silent migrains. (I'd not heard of before)

Vibrations in my nose when talking especially on the phone.

Tight feeling around skull and sizzling in my head.

Had a B12 injection today and am now trying weekly .I didn't want to jump to 2 monthly as last time stopped symptoms returned. So pleased this was agreed.

Has anyone had any of these symptoms from b12 defiency or from frequent injections?

Although amytriptyline has been prescribed amongst others I've not taken it. But on Sunday on advise from out of hours doctor took a dose as couldn't keep pain in control on paracetamol from migrain. I dont think it had gone from worst ever headache/migrain from Thursday night. All set off by lights. I thought the waiting room for neurology would be dimmed lighting and whale music. However it was outside m+ s in a busy area like a railway station with a high screen! ! I've not been well since. I've an 'emergency ' drug now sumatripan just incase an awful one hits again. Never had this medication before as migraines new to me as are silent ones.

Any information if anyone had these symptoms appreciated. Thank you.

[Ajane]

If it were me, with so many symptoms, I wouldn’t reduce the injections at all.

I think Amitriptyline needs to be taken regularly to build up in the system to see any benefit with pain, but I agree with you, personally, due to the side effects of the drug, I’d have to be desperate to take it.

I wish you all the best in your ongoing quest for good health.

[Nackapan in reply to Ajane]

Thankyou.

[Hidden]

I am on amitriptilyne prescribed by my Neurologist. You need to take it for several weeks for it to work. I can tell you that I was injecting every day for weeks and my symptoms did not improve. I got significant relief with amitriptyline. It is clinically proven and has been prescribed for your problem and my suggestion is you try it first and see what happens. As I say I do not like it but it works.

[Nackapan in reply to Hidden]

Yes I resisted for 4 months. I'm now on amytriptyline prescribed by 2 different neurologists and 2 gps. I'm 4 days in . I don't like it either but my head is numb and it makes you rest more. Like you say it has been trialed off label for neuropathic pain and post concussion headaches. I don't know what symotoms are from what but covers it.

Thanks. Glad it working for you. The alternate day injections did work for so many symptoms but then got stuck with present ones. The B12 injections are set at once a week at the surgery so I will go with that for a few weeks. If Old symptoms appear I will have to negotiate with doctor again!!

[Hidden in reply to Nackapan]

Yes like you most of my symptoms went with self injecting every other day but I’m stuck with upper back pain and shoulder pain! I only got it after being diagnosed with PA so I’m sure that must be the link. I’m doing every day injections now for 6 weeks to see if it helps but tried it before and it didn’t work. This is such an odd disease!

[Nackapan in reply to Hidden]

So you still on amytriptyline as well? Yes it is odd. Frozen shoulders give that pain and its all nerves isn't it. I've not got a PA diagnosis but b12 defiency....but who knows as the tests arnt accurate . I will trial amytriptyline on lowest dose not happy about it but must try and get a life back! And resisted for over 4 months. Have seen glasses you can buy that blocks out blue light so will try those too. Hope you get rid of the pain as horrid.