Today I have decided to start the New Year with telling my story as it might benefit others.
I suffered with migraines all my life, as a child , then a great deal less as an adult female ( for some reason during my life doctors decided on odd occasions during my life to give me ‘ vitamin injections, never telling my parents or myself why ) Then when I went into menopause then it crescendoed. 3 days out of 10 I spend in bed in a dark room on my left side with a bucket next to me. I was on heavy medication which made everything worse not better. One day I had enough, told my husband if he didn’t take all the pills away, I would take the lot... was referred to a Neurologist, I had stopped taking any medication apart from paracetamol and ibuprofen, that was hard. After CT scan and MRI scan, lots of blood tests it turned out to be deficiencies in ordinary vitamins B12 , B9, D and also in magnesium. Being physically sick soooo much everything I did manage to hold down wasn’t enough to sustain me.
It took quite a long time, but I have my life back. Hardly any migraines now and if I do get the odd one they don’t last more then the day , I don’t have to lie down in a dark room either. I do feel very tired and nauseous however very much reduced pain which I control with paracetamol(2x500mg+ ibuprofen(1 Nurofen 684 mg ) . This was recommended by Nurse practitioner at A&E hospital department. I now have regular Hydroxocobalamin injections, more then the 3 monthly recommended now on NHS. To stop fighting my GP, he overruled my neurologist, I went private and get them that way and in the mean time I was shown how to do this myself. I certainly recommend everyone to try, it isn’t a cure but it is worth a try. Migraines were the first of my neurological symptoms to improve after a few weeks of regular loading injections. It must be said that the balance with all vitamin B’s are extremely important as is magnesium and potassium and of course vitamin D+K2 I have read up about all this quite a lot and still do. Also adhering to a healthy diet, no readymade stuff for me and regular exercise (minimum of 30min a day). I learned I wasn’t the only one who benefits from this. There isn’t a lot of money to be made from prescribing vitamin injections so might be the reason why it isn’t being tried more often.
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I too like you had horrendous migraines and was then diagnosed with vit B12 deficiency and I can gladly say since treatment I don't suffer anymore. more people should get their vitamins checked but the GPs don't check vitamins routinely and I feel they should. I started a campaign on change.org but it is a new concept that vitamin def can cause so many symptoms.
When I asked to have my vitamins checked , I got told they don’t check vitamin D. 😏They wanted to check B12 and I refused to have that done....they will just use that result , it being high with regular top ups to stop the injections like we hear from other people on this site.
I get my bloods done privately with medicheck. They send you the kit and you can prick your finger or book an appointment with a nhs clinic that does their work near you, or have a nurse visit.
I was very interested to read your post, I had a similar history started with migrainges around age 4. Mine increased with my hormones, 3 weeks out of every4. Had to be in a darkened room with a bowl ( now my constant friend), nothing seemed to work for long. I have been going through the menapause for the last 15 years ish. Now on HRT. I have had to leave work 4 years ago due to abdominal pain and my migraines have reduced, I worked as a nurse and had little time to eat meals so no proper diet. I am now eating regular home made meals. I wonder if I was lacking in vitamins due to poor diet. I was anaemic for many years which they put down to the menapause.
I would give it a go. My first surgery was keen to offer the injections to other migraine sufferers. Since I moved ( twice now) I got involved in battle with condescending GP. I gave up in the end. Then moved and now have a better surgery but still not getting what was prescribed by the neurologist. So I do things privately and that doctor has taught me how to inject hygienically and safe. So I am in control again.
Thank you so much for your story! I’m with you ! very similar! Menopause sent me over the edge. I’ve always been resistant to taking drugs . My neurologist prescribed Triptans and Naproxen and I must admit they worked and I felt better after 1 hour but hated taking them. I’m now on plant based, super healthy, vitamin , mineral packed diet and supplement with magnesium, vitamins B12, D and I have B6 which I haven’t started using yet . I’m better! I managed to cure tight shoulders sore heads with strong coffee and ice baths in October ( no drugs) had to take drugs in November and only took one Triptan in December. Today I have sore shoulders neck a bit of nausea but may have strong coffee later. I’m better !! I’m guessing it’s the diet and vitamins- it could be I’m coming out of the menopause but I don’t know for sure. It’s great to hear from similar people with similar stories X So grateful!
Hi Katiebischop, yes diet is very important. My triggers we found out are citrus fruits and preservatives and additives used in food preparations, ascorbic acid another( chemical form of vitamin C ) it’s added to a lot of stuff ( fresh bread and meat 😏)even in medicines it triggers my migraines. So I am pretty good now in avoiding these but an odd time it goes wrong and I pay for it with a lousy day. Never in the way it was all those years ago. Also barometric pressure , that can trigger a nasty headache. However I can live with those. I have a life, I can work, I can be relied upon. Keeping me in the right balance with the Injections etc is and will always be the tricky bit. I am so glad to hear you have found your way to reduce your migraines and the severity of them. Coffee is not good for me alas so hardly drink that. Good old English cup of tea does help my way to recovery. Most of us had to start taking charge, in my case the neurologist showed me the way and from there it was up to me. I hope you keep things in balance and can enjoy your life a bit more then before!❤️
I know it is difficult to interpret the current tests for B12 but just want to add a word of caution about jumping into high dose supplementation (500mcg+) without a formal diagnosis of a deficiency or absorption problem. It can make diagnosing a B12 absorption problem much more complicated
Hi Gambit62. Yes I am well aware of this. I was deficient in B12, B9, vitamin D as was looked at by neurologist. She rang me at home a few days after the bloodtest and Ct and MRI were done to tell me to go directly to my GP surgery where she had made arrangements to start the B12 injections. I was baffled that a mere vitamin deficiency could cause me to feel soooo ill. I am just not good taking supplements. You can’t rely on the content of each tablet as most companies don’t give you that guarantee. I can use certain vitamin D drops I get in Germany, ordinary folic acid is a no no as well, I can use the L-methylfolate, or 5-MTHF form . I do try to get most of my vitamins and minerals through my diet first and if a privately done blood test shows me I do need more I will make alterations to my diet and if I still don’t feel better I will try the supplements. I am well aware what medications and supplements can do. 😏 It is good to point this out!!!
I was taught that pretty much everyone in Britain is expected to be deficient in B12 and that is because you cannot get B12 from the food you consume. That is because B12 is found in the soil your food is grown in and because we have overworked the soil with intensive farming for so many years are soil is now hugely lacking in the ability to transmit any to our food and thus to us.
It may be why GP's are so reluctant to test for the B vitamins because they can predict everyone will be deficient anyway.
One solution is to grow as much food in your own gardens/allotments as possible in the hope that soil won't be in such bad way. Working outside would obviously help a Vitamin D deficiency aswell. But of course many of us don't have access to outdoor spaces anymore, so pill form maybe the only option.
The data surrounding Magnesium deficiency in migraineurs is hugely contested, in Britain anyway, the research was done a long time ago and was considered to yield inconclusive results. But I know it is heavily promoted in America, but of course it is a very cheap intervention and they dont have an organization like NICE to get past first so its probably no skin off their nose to prescribe it.
Yes , I have read this as well. I do tell friends, family and who ever wants to know about the importance of vitamins and minerals, how it affect the metabolism . I have had so many benefits from knowing and making the changes, I just wished it came earlier in my life. Now I am making up for it in the way I still can.
Yes we are at the beginning it seems in an age of understanding of how all these things effect us. All this stuff being found out about the significance of our gut bacteria, I think they think Parkinson's originates in the gut now. So you never know maybe other neurological conditions like migraine could be treated through the gut. Trouble is we don't understand nearly enough to benefit from all this yet.
My understanding is that pharmaceutical companies don't make enough money out of migraineurs to justify making new drugs etc and this is why it has taken so long for any migraine specific to have been produced. This partly because R & D that involves the brain is expensive, risky and incredibly complex and takes too much time and money to explore easily. Also pharmaceutical companies profit most from drugs that people have to take everyday like Thyroxine, apparently.
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