Increase in attacks with aura

Hi all,

Hope everyone is ok.

I've had migraine with aura since I was 7, some years worse than others. I get pain all across the front of my head it's rarely one sided, though the aura usually starts in the left eye (I hate this part the most!) and get quite sick with them too.

I know some people get them weekly or even daily, so I know I'm better off than most, but my frequency has increased and now getting one almost every month and I just don't understand what's changed or what I can do.

I'm currently on 75mg aspirin in the morning and evening, take B2 with Q10 and magnesium in the recommended doses, but still no joy.

I think I will go for an eye test as it's been a while since I had one, I also wonder if exercise is a factor, in 2012 I used to run most weekends and only had 2 that year. 2015 I had 9, and can't pinpoint any changes. I have been to the migraine clinic in London years back but nothing really changed even with their recommendations. I drink plenty of water etc, but think mine probably has to do with tiredness and also maybe my neck isn't as smooth in movement as it could be.

Anyone have any tips or ideas? I thought about the daith but don't know if it'll be beneficial for my kind of migraine.. thoughts?

thanks guys.. gets me down as they just appear from nowhere without warning and I'm completely debilitated.

xGem

21 Replies

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  • Hi GemT.... have you had your hormone levels checked? My aura got worse and migraines more severe at the same time every month, unable to function on any level for 4 to 7 days. Hope you get them back under control, just no fun.

  • Hi Cally, No I haven't actually... and they do seem to fall in or around that time of month.. but not always so I didn't really link them, but I guess things can change.

    Can I get that done at the docs? thinking of booking in with the GP to revisit options.

    Thank you.. I know the postdromal feeling just also wipes me out..

    cheers will try and sort that

  • Hey GemT.. yip they can check your hormones at docs but make sure your in day 3 of your cycle. You don't get a proper reading otherwise. I made that mistake 3 times and only a private gynea appt advised me of it... i have a hormone and TMD factor in my mygraines which is causing pain in my head, behind my eye's down both sides of my neck and shoulders. (Feel like i can't relax my shoulders). Daily headache with migraine like pain....have another specialist at the end of Jan, spent thousands, determined to get my life back!! Good luck 😀 hope you get results 😀.

  • Hi Gem. The structure of my migraines changed throughout the years of my life too. No idea why. I also have problems with my neck which I know triggers my migraines. The muscles in my neck seem to go really hard and tense. I went to a massage therapist last week and advised me to start yoga as my spine and neck need stretching. I had the daith piercing 3 months ago and the migraines have not been as frequent or as severe. I was getting them almost daily. Over new year I actually had 2 whole weeks pain free. Whoooop felt a different person. Just had a 4 day cluster but not agony like they used to be. Good luck

  • Hi Babs,

    my doctor has told me for years to go to yoga, I like exercise etc, but am not the most supple of humans, and I find it so boring when I've tried it before, but never actually done a class so maybe I should finally take one up.

    Glad it's helping you, did you have the daith piercing on both sides or just one?.. the pain worries me, hear people have a lot of problems with it, but again.. maybe time for me to just go for it!

    Do you get aura? the blind spot etc?

    Hope you're having a nice Sunday!

  • No I don't get auras any more ( change of structure) just pain left side of neck and over my left eye. Usually starts about 5am and lasts most of the day. I always know when I get one I will have a cluster of about 4 ...I haven't started the yoga yet but intend to do my first clas this week..like you I am not at all supple, so should be fun...NOT...another thing I've been told to do is swimming. Couldn't think of anything worse. But hey ho got to give it ago ( when it gets warmer maybe) the daith piercing is not painfull, certainly not as painfull as a migraine but make sure the piercer knows about daith piercing for migraine. It needs to be in the righ place. Good luck I hope you go for it and it works..ill let you know how the yoga goes...kill or cure methinks

    X

  • 2 whole weeks without migraine oaft!! I wish 😭 Mine kicked off Xmas day and haven't stopped yet. I have chiropractor physio and acupuncture on the go and have been doing it for 5 months now. Migraines calmed for a week but taking a step backwards they say!! Sumatriptan injections daily just to function. I was rubbish at the yoga so i bought a machine you strap yourself in and hang upside down (inversion table) takes a while to trust it but oh boy you do feel/ hear all your spine pop back in line. It's not eased my migraines but i feel straighter!! Thinking about pilates!! Hope your doing well 😀😀

  • Hi if you're a woman which I'm sort of assuming, sorry.. Anyhow menopause was my big issue, still is. I get a lot of aura migraines, had one yesterday.

    I'd had some when younger, usually with my period, but they got worse and more frequent with menopause. HRT definitely helps, but it can never be as good as natural hormones.

    Worth getting checked out, even if you're younger, I was only late 30s when it started ☹️

  • Hi there,

    Yes a woman.. right assumption :) eeek.. always think too young for that just yet but if yours started in your late 30s that's worrying.. that's my age.

    I was told they usually ease with menopause.. sorry to hear that :(

    thanks for the advice!

    Gem

  • Yes they say it eases with menopause but I've found a lot of women start getting them then. Mine got much worse. I think it might be that for some it's a drop in oestrogen that triggers them.

    I've had two this weekend. I know how you feel it is depressing. I seem to get clusters of a few days then have a gap for a bit..

  • Yes I'd be thinking hormones changing. I had lots of migraines through my teens then they eased off with the odd one now and then maybe 2 a year until my late 30's. Then they started to come back. At 43 I had a really nasty one and ended up in the Stoke clinic. Lots of tests later, migraine was the cause. I'm on 75mg aspirin daily for TIA prevention just in case. From that on they changed in nature and got way more frequent. Had bloods done and finished up being referred into HRT clinic. My hormones were suggesting I was through the menopause even though at that stage I wasn't. Started on HRT and migraines were worse as guess what hormones then showing I was normal so both ovaries were firing and my oestrogen was so high it was like early days of pregnancy with smells and sickness. Stopped HRT,. That was 2 years ago. Migraines got really nasty for a 18th months. Fingers crossed past 6 months seem to be tailing off again. I also am now suspecting that I might finally have reached full menopause age 48.

  • That's interesting to read, I wonder if I should think of coming off HRT as it helped a lot, but maybe now it's backfiring. Although my bloods were post menopause about ten years ago now..

  • Mine started off with hormone changes ( had my first migraine the week before my first period) I had a break for years then I started just getting auras no pain. It was well post menapausal that these cluster headaches started. Same age as my mother started with them. I just hope like her I will ' grow out of them'

  • Hi xGem, firsly I can empathise, it doesn't matter how frequent these things are it is that constant fear of having one...it ruins your life or at least your quality of one...that's what people don't understand..they have no idea why one minute you're ok, the next you can't see or speak and want to throw up etc...it makes no sense to a none sufferer.... The worst they keep asking you questions, expecting I don't know what!!

    Anyway, mine are unfortunately much more frequent than yours so the meds I would suggest probably would not be prescribed to you. However I would definitely suggest you go for that eye test, start running or\and exercise as it definitely does help..for me anyway...then look at what your triggers are... A major culprit is MSG and there is of course The usual Suspects - coffee, chocolate especially dark chocolate and most additives.

    I hope that helps a little and things get better for you

  • Hi,

    Thanks so much for this

    Kick starting the exercise again this year.. Already do brisk walks of 20 mins 4 times a day (my walk from station to work and back to civilisation for lunch and repeat)

    Had the eye test so thorough and my eyes are perfect.. I almost wanted them to say I need something you know?

    I don't drink coffee and don't eat much chocolate and never dark Urgh I stand headache with that little one!.. But msg I've looked into more recently and definitely avoiding..!

    Oh my god totally which is why when it was less understood I'd think people thought I was faking it as yes completely fine one minute then bang! Vision messed up.. Nausea and that horrific pain we all know so well

    Not to mention the postdrome phase!!

    Thanks for the reply.. I'm determined to make that the only one I have this year! Positive thinking etc

    Cheers x

  • Hi GemT

    I have been suffering eith cluster headaches and migraine with aura for over a decade now. Despite the doctors best efforts they can do nothing to help me apart from dose me up on drugs that dont en help. And so i have taken some control over my migraines by regular exercise, yoga, meditation and neck & back massage. Believe me when this lifestyle has improved my migraines and pain management 10 fold! I can now have as little as one round of migraines every 3 months and sometimes just with aura and no pain (which has never happened in my life) and i used to suffer sometimes with 1-3 a day for upto 2 weeks.

    I encourage you to seek an active lifestyle and especially get involved in regular yoga session. Also what changed my life was a programme called CBT based mindfulness developed by Jon Kabat-Zin. You can actively have a powerful role in de-powering your migraines. Much love Jx

  • Hi Jenn

    Thanks for this.. Sounds really good.

    I'm back in the game re exercise..

    And ensure I go for that 20 min and back again long fast walk at lunch which is also quite pleasant as I work at the Olympic stadium and walk to Westfield for my lunch.

    At the moment I've learnt a few basic stretching out techniques for my neck and breathing which I'm doing every evening until I pluck up the courage to join a yoga class!

    Still hesitant on the daith piercing.. But not ruling it out!

    CBT is a good shout also.. Will look into it thanks.

    I am also thinking about having a monthly massage of neck and shoulders.. Have to find someone good who gets it!

    Thanks for your advice, much appreciated and hope you're good today xG

  • No problem GemT i hope you found something useful in my ramblings!

    Im not sure about the Daith piercing either... ive found the results inconsistant.

    As for the yoga I would recommend trying Hatha to start. But remember its not just about finding a class you like but also a teacher that suits you... so dont be disheartened if your not happy after the first class. You really also have to be practicing at least once a week to get any long term benefit and it doesn't come over night either. If you're lacking confidence then try Yoga with Adriene m.youtube.com/user/yogawith... to start you off... shes great for beginners.. definitely give the '30 day challenge' a go. Plus the CBT stuff is hreat for chronic pain management. Much love Jx

  • No problem GemT i hope you found something useful in my ramblings!

    Im not sure about the Daith piercing either... ive found the results inconsistant.

    As for the yoga I would recommend trying Hatha to start. But remember its not just about finding a class you like but also a teacher that suits you... so dont be disheartened if your not happy after the first class. You really also have to be practicing at least once a week to get any long term benefit and it doesn't come over night either. If you're lacking confidence then try Yoga with Adriene m.youtube.com/user/yogawith... to start you off... shes great for beginners.. definitely give the '30 day challenge' a go. Much love Jx

  • Probably going to repeat what others have said.

    I've had migraines from late teens/early 20s - mine were hormonal but with the double whammy of being triggered by both changes in hormones.

    They got a lot worse in my late 30s/early 40s but improved in intensity and length when I took up running. They then started to get a lot worse around my 50s - which co-incided with a B12 absorption problem really hitting the critical point and starting to get really deficient.

    I'm peri-menopausal at the moment. Was given HRT for a sustained bleed a few months ago which gave me a migraine (and also caused problems with keeping my B12 levels stabilised so didn't use it for any longer than was needed to stop the bleed.

    Had a couple of months without period or migraines and then not sure if a week or so ago it was a migraine or a cold but had really bad head day before a bleed started. Worst thing for me on the migraines is nausea and that has definitely got a lot better in last 6 months - though did have 2 months just before when it was horrendous.

    Problem runs in my family and does seem to stop with the menopause though I know a family friend for whom migraines started at the menopause and continue to be very bad.

    I get aura - with mine - basically end up giving up on the idea of focusing on anything ... but have colour patches before hand. Gut spasms tend to be the worst bit though - head for the loo as everything just comes out simultaneously... that side of it is probably the one that has been worst for me.

    In my late 30s I think I had more days with migraine than without - probably 4 in month. Triptans generally worked for me but these days can be a bit hit and miss (only use small doses so doctors who think you use a full dose each time often haven't realised just how frequent the problem has been.

    I would suggest trying to get your B12 levels monitored as well but the test isn't as good an indicator as most medics think.

    I do find that supplementing with B6 (as well as correcting the B12 problems) helped a lot in the last few years. However, you do need to be careful with B6 as it is possible to overdose on it - although the neurological problems resulting from the overdose tend to go away there are some reported cases where damage hasn't reversed when supplementation stopped. Recommended upper limit is 100mg in US, 50 in Europe and I've seen 12.5 mg quoted in the UK.

  • Have you been tested for Hughes Syndrome/APS? Has any other family member got an autoimmune disease or history of miscarriages, or sudden blood clots? Blood tests: hughes-syndrome.org/about-h...

    and symptoms: hughes-syndrome.org/about-h...

    Best to get tested to rule it out. MaryF

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