Does anyone get "pressure" head aches?

[Jacqui1968]

I was diagnosed with B12d in April following months of symptoms including weakness fatigue, joint pain, palpitations, vertigo and more. I had loading doses which relieved symptoms for 3 weeks before they started creeping back. At 5wks I went back to GP with painful sores on my scalp and a head ache that felt like I had a brick permanently on the top of my head. She said it was probably shingles and offered me antidepressants. I'm now at wk7 and my symptoms are now at the level they were when I first went to GP and my head sores and pain has not improved. Putting my head on a pillow feels like I'm lying on a brick. And the pain....! I've researched shingles and it says it only affects one side of your head, but this is all over. Does anyone else have this? Is it another symptom or something else? TIA

[aksundell]

I definitely have had bad headaches associated with my B12 deficiency and treatment. They were not as bad as you describe. I’m glad you’ve seen your doctor about it. Rest was always the thing that was most helpful for my headaches.

[Jacqui1968 in reply to aksundell]

Thanks for replying. I went back to docs this afternoon. He thinks it's nerve pain. Given me amitriptyline but I'm really not sure about taking. Many of the side effects I'm already getting 😒 Worried it will just make things worse

[Foggyme Administrator in reply to Jacqui1968]

Hi Jacqui1968. The dose of amytriptyline used for neuropathic pain is well below the therapeutic dose used to treat depression (10-up to 50mg compared to 50-200mg).

There can be side effects (which are often similar to the symptoms being treated) but these can be quite mild and chance of getting them is much lower when on low doses, they do tend to wear off once your body gets used to the drug, and not everyone gets them. (The worst I got was dry eyes/mouth and dreadful constipation - fairly easy to 'fix' 😖).

Amytriptyline can take a while to be effective: when it works, it works like magic, so it’s worth persevering for at least six week, if not longer.

When I originally took them, I remained on them for a year then reduced the dose slowly under medical supervision, and when stopped, remained pain free for a couple of years. Back on them again now due to pain from 'flare' - just hope they’re as effective as last time 😉.

So...the amytriptyline shouldn't make you worse but may well bring improvement.

And just a thought...if you are having neurological symptoms then you're most likely being under-treated for your B12 deficiency. The treatment for those with neurolgical symptoms (following loading doses) is to continue with every other day injections until no further improvement (not many GP's are aware of this). If your symptoms are relieved by B12 injections, return before the next injection is due, then are relieved again when you have the next injection, this is indicative that you are being under-treated and need more injections (in your case, the intensive neurolgical regime).

Details about this can be found in the British National Formulary (BNF) - your GP will have a copy of their desk - but will have to read down to the third paragraph (not many ever get that far - sadly).

Here's a link so you can see the prescribing instruction for yourself:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Note: the prescribing instructions refer to the treatment of pernicious anaemia and your GP may well say...ah ha, but you don't have pernicious anaemia. That's a moot point, since the treatment for pernicious anaemia is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same (whatever the cause).

So...your continued symptoms may be due to under-treated B12 deficiency, in which case more frequent injections may help. Good idea to see your GP and ask them to treat you in accordance with prescribing guidelines for those neurolgical symptoms due to B12 deficiency.

And the amitriptyline may well help the neuropathic pain, so perhaps worth a try.

Hope you begin to feel better soon and please post again if you need further advice or support.

Take care 👍

[Jacqui1968 in reply to Foggyme]

Thankyou. Yes I've done some research because I felt so rough so quickly. I have an appt to see my regular GP in 10 days and am going to have that discussion with him. I did sow the seed on the phone to him yesterday so fingers crossed. If it's a no from him, would you recommend SI? I know I need to do something, as this isn't living

[Foggyme Administrator in reply to Jacqui1968]

Hi Jacqui1968. Many here do turn to self-injection when their GP's will not prescribe frequent enough injections to enable them to get and keep well. If this is a route you decide to go down, we can advise about safe sources for B12, syringes, needles etc.

In your case, you are being under-treated so let’s hope your GP will prescribe in line with current guidelines. Don't know if you've seen the BCSH Diagnostic and Treatment Guidelines for Cobalamin and Folate Deficiencies...here's a link, just in case (your GP should be following these - most have never read them):

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines for the Treatment of Cobalamin and Folate Disorders)

Worth noting that some GP's insist on testing B12 levels after injections have been given and then state that no more is needed because B12 levels are high. This is wrong. B12 levels are high because hugh doses have been injected and all the guidelines state that once treatment has commenced, B12 levels are meaningless in terms of assessing efficacy of treatment: doctors should look at symptoms, not serum B12 levels.

Here's some information about that (just in case), and another couple of things that might be useful:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

Life without sufficient B12 is miserable (intolerable) so all here will know exactly how you feel. And identify with your GP issues. All too common. Sadly.

Very best of luck 👍

[Jacqui1968 in reply to Foggyme]

Thankyou so much. You have no idea how much you've helped and put my mind at rest. No pain so far today so it could be a good day 😁 I will read everything you have suggested and prepare myself for next appt with GP. Thankyou again x

[Foggyme Administrator in reply to Jacqui1968]

No problem Jacqui1968. Good luck and hope that pain stays away 😉

[aksundell]

I was on an antidepressant for my headaches as well, and it really helped. After three or four months I weaned myself off because I was getting better.

[Margomck32]

Hi Jacque don’t know if this will help, but I too had pain sores in my scalp and pressure headaches. (Thought my head was going to explode at times) They get better as time goes on, the more Vit B12 injected the better the syptoms got. Am now about 8 weeks into B12 injections ( now weekly) iron, folic tablets daily. Just started on magnesium as well for severe leg spasm as and cramps. Hopefully your problems will resolve soon. Good luck.

[Jacqui1968 in reply to Margomck32]

Thankyou. I'm not glad you've had this too, but it's good to know it's not just me, if you know what I mean. Do you self inject? I think this may be the route I end up going down but just interested in the extra supplements you take. GP has not told me to take anything. My ferritin is 51, D3 is 65.3, folate is 11.5 and B12 is 870 (5wks after last injection) He also said my red blood cells are on the small side - MCV 77.2 and MCH 23.2

[Margomck32 in reply to Jacqui1968]

I was diagnosed with MS 4 years ago after major symptoms. Had all the Scans and treatments, tests more treatment under the sun, then discovered this site. I had more answers in 3 mins on this site than years with drs and specialist. So I dump all Drs and meds, and decided to wing it on my own with the superb advice from the guys on this site. Bought injections from Germany as was recommended on here. Am now beginning to come out of a MS coma and beginning to slowly get my life back. I know I will never get back to full fitness as Iv had symptoms for over 30 years but I know I will make some progress by flooding my cells with B12 rather than joining the MS society and waiting to die.

[Jacqui1968 in reply to Margomck32]

Wow! All the best to you! It's unbelievable how the doctors deal with this. It's not as if they have the excuse of it being a rare condition 😠 And I agree. So grateful to have found this site x

[Margomck32 in reply to Jacqui1968]

Once you start With B12 injection you need to take iron and folic acid, but keep everyone up to date on what your taking and how your doing, the guys that are experts on here will explain the what to take and what nots.

[KimberinUS]

not to get off topic as b12 deficiency is wicked aweful but... many folks diagnosised with a b12 deficiency are diagnosed with a vitamin D deficiency at the same time. taking vitamin d can induce a magnesium deficiency which can cause fatigue, joint pain and headaches.

[Jacqui1968 in reply to KimberinUS]

I've just replied above with test results. GP didn't advise any other supplements