Chronic migraine

[Wrexham16]

I suffered badly with migraine in my 40s - 3 days of pain with vomiting and diarrhoea. The cause turned out to be SSRIs and I had some very good years with just a couple of migraine days a month. I am now 69. a couple of years ago I was diagnosed with hypnic headache which is under control but I started getting migraines more and more frequently. I am now being treated for chronic migraine. Nothing helps and I am on a waiting list for Botox. I wake up every day with varying degrees of pain but however bad it is and regardless of whether I have taken medication or not it improves during the day so that by the evening I just feel exhausted and battered. But the next day I wake up in pain. The pain feels like migraine but this pattern is not like anything I've experienced before. Does anyone recognise this? Is it even migraine?

[Gambit62]

My migraines tend to wake me up in the morning. They can then ease as the day goes on.You said SSRIs were the cause of the initial migraines - this makes me wonder if they were related to folate (B9) deficiency and if the return is an indication of B12/B9 absorption problems - serum folate is a relatively easy test to interpret - B12 is much more difficult.

B12 and /or B9 deficiency would also be consistent with feeling exhausted in the evenings.

Link to symptoms of B12 deficiency (as it tends to come on very slowly - over years)

pernicious-anaemia-society....

folate deficiency comes on much more suddenly as the body doesn't store folate in the way it stores B12.

[Francesca21]

Hi , this sounds awfulAnd I really hope you find an answer. Ive been hoping Id “grow” out of migraines. And im ten years younger than you so maybe not. Like you I had episodic when younger and preventative meds worked well for ten years. Then failed and I now have chronic migraine/ new daily persistent headache with facial tingling and nausea and been light and noise resistant geting slowly worse for 15 years. Botox and cgrp ajovy and greater occipital nerve block have all failed to help me. I hope the botox helps you. I find i have to constantly have some hope of whats next to try. Ive tried hrt and indomethacin both of which made it worse but you have to try. I have accupuncture and peppermint oil to temples, a guy on here suggested an anti histamine every day so i do that also. No painkillers touch it at all . Just started candesarten so once again im hopeful- also take magnesium but 18 months on and 4,500 pounds on private neuro due to covid referrals being denied. Ive only mentioned the things ive tried in case there is anything in the list you havnt tried yet. Good luck with the botox. I also get throu it by swimming most days as creates endorphins. I walk but somehow that raises my pain score but it comes down again an hour after im back. Obvious things like lots of fluid sleep n exercise. Feel my lifes been stolen these last 18 months but im grateful for the days i can do odd enjoyable things. Stress defs playing a massive part. Professor Anne Macgregor told me the headache drives the stress and anxiety and the stress and anxiety drive the headache, which comes first chicken or egg? She says the stress and anxiety is youre worried you are going to be like this for the rest of your life. Other people my age tell me they have more anxiety with age. Is it age or the modern world? But they dont have permanent headpain? I also read this is more prevalent in people with history of severe emotional life events and I certainly fit into that bracket. Once again I hope you get some relief soon. Good luck

[Wrexham16 in reply to Francesca21]

Your situation sounds really awful. I am so sorry. Most things you read suggest that women stop suffering after around 65, though obviously this is not my experience, but I hope that will happen for you. I have tried almost everything except Topirimate - because everything I read about the side effects of that terrify me. My neurologist was very keen for me to have that next so I am grateful that he has put me on the list for Botox though it is NHS and he can't tell me how soon it will be since they are still operating on reduced lists. I hope candesartan works for you. It stopped working for me but I had a couple of good months with no side effects so I was grateful for that. I am now going to look into B vitamins suggested in another post. good luck to you

[Loulou1922 in reply to Wrexham16]

I tried topiramate, it wasn’t a horrific experience - it made me tearful, a little bit of pins and needles in my arm, (nothing major), and a little more hair strands coming out when I washed my hair, (nothing noticeable on my head, no balding) ….but what I’m trying to say is, the side effects weren’t some horrific event for me, just felt sad and so they took me off them for that reason and I was back to normal…..I think as we are already so ill we dread side effects and they’re usually not as bad as we fear, hope that helps x

[Wrexham16 in reply to Loulou1922]

Thank you. I have a long history of depression and don't want to risk exacerbating a pre disposition to feeling sad. I've also read about people who have permanent memory loss. we're all different but I don't want to take the risk

[Francesca21 in reply to Wrexham16]

Yes my neuro mentioned topiromate and i was unwilling to try it as who wants to risk low mood when life is already bad enough? I paid for 2 lost of botox at 750 a time . And paid for the ajovy x 3 at 300Per shot. Id sell

My house to be rid of this pain. Thats not good that candesarten only helped u for a few months. Gp has started menon lowest 2 mg and says have to wait 3 wks to give it chance before increasing the dose. What dose did you have? Have u tried nortriptyline and or propranolol?

[Wrexham16 in reply to Francesca21]

HiI am still taking 16mg of candesartan since my consultant says I might be worse without it and it is at least something until I get the Botox. I do know someone who is doubling the dose of candesartan every 2 weeks under medical supervision but every consultant is different. Propranalol made me feel so exhausted that I couldn't get out of a chair and when I did it felt like I was ploughing through mud the whole time . It may have helped but I didn't have any life while I can do more things now even though I am in pain. I did try nortiptyline because I could not bear the side effects of amitriptyline (which did help actually) but then the consultant decided to switch me to candesartan so I can't say whether it was effective. Not many side effects though. I do agree about topirimate. It is depressing enough being in this pain without risking making it worse. I do hope candesartan works for you.

[Francesca21 in reply to Wrexham16]

Ah sorry ive just realised ive had a convo with u before about much same topics 😝

[houston8 in reply to Francesca21]

have u had an mri - maybe it’s something else!?? This response is for anyone

[Francesca21 in reply to houston8]

Hi yes ive had 3 mri and a ct scan and full blood tests every 6 months and a venogram. About to see neuro again and beg for more tests but dont know that there is any more tests to have. I do know that people with a history of severe emotional life events tend to be unresponsive to treatments and I fit that category. Only things i know of that ive not tried yet is cold water sea swimming and implant. I swim every day at a pool in england and in the sea a lot in greece. I cant think of anything worse than sea swimming in england in winter. A friend is trying to bully me into trying. Thanku tho for thinking of me. Ive had the cgrp inhibitors and botox and gonb etc . Have a lovely evening.

[Bed--Head]

My symptoms get better at the end of day also that's all i can add!