Is anyone like me? Menstrual Migraine + Chronic Headache / Migraine related to Neck / Shoulders

I have had migraines all my life, but the last year they have gone turbo. I am lucky if i have one headache free day a month, with migraine attacks up to 4 a month. If i wanted too i couldnt hold down a job.

I have been on most drugs like gabapentin, frovatriptan, topiramate, naproxen etc and no real impact. My problem is that i have at least two types of haeadaches / migraines:

1) Menstrual Migraine - the pattern of having regular migraines around my cycle has become increasingly stronger. This left me with a nagging sometime chronic headache which lasts around 15 days. I visited the NMC in January and they have prescribed me the estrogen gel to take 2 days before and for 5 days during. I have taken it once so far, and it seemed to help however............

2) Severe Neck / Shoulder Pain - despite accupuncture, oesteo, physio etc i still suffer with a permanent stiff neck and shoulder pain. Its getting worse to the point i cant sleep. All the neurologists dismiss this and say it is the effect of the Mentrual migraine. Doing light exercise and stretching seems to help, but not always. Nothing i take seems to have an impact. I am considering Botox in the shoulders to try and get some form of relief.

Does anybody suffer the same? It seems the two interact to me, but i am desperate to get a break from feeling terrible all the time.

Appreciate any advice

;-)

21 Replies

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  • Oh you poor thing! I had what I'm sure were menstrual migraines, so I was put on Cerazette with no gaps to stop me having periods & ovulating. That helped for a while, but gradually the migraines got worse again. I then tried Propranolol, Topiramate (worst drug in the world in my opinion!) and more recently Amitriptyline. I'm off all of them now as none of them worked & I got awful side-effects. Before taking anything, and when I was having periods, I would have a huge migraine with throwing up every 20 minutes for 12 hours the day before my period and the same again at ovulation. Cerazette stopped that pattern but I was still getting about 3-4 serious migraines a month where I just couldn't leave my bed, with daily horrible headaches on the other days. I had hardly any days where I felt well. Since November, I've been having acupuncture, plus I've started taking 500mg magnesium, 400mg Vitamin B2 and 300mg Co-enzyme Q10 a day. I haven't thrown up with a migraine since before Christmas (a miracle) and I've had about one kind of normal "headache" a week which is nowhere near as bad as a proper migraine. I had wondered about the oestrogen gel as Cerazette is progesterone only, but as things are at the moment, I'll carry on with what I'm doing for now. I did take Soya Isoflavones for 6-9 months a couple of years ago and they were amazing. I was really bad with severe migraines before starting them and within a couple of weeks my migraines completely stopped, not only that, I actually felt really really well and full of energy, it was like waking up as someone else! For three months I had no migraines and was full of beans, but gradually the migraines came back. I cried as I couldn't believe how ill I'd been before as it was only feeling so completely well that made me realise how bad I was. The owner of the health food shop I bought them from had warned me that they can stop working. If my migraines start to get worse again I will go back on them, especially to get me through the summer as we're going on holiday and I do worry about flying and getting a severe migraine. Soya Isoflavones are really made for helping with the menopause & levelling out hormones, so it's worth a try. A friend of mine on Facebook said she started getting awful migraines last year & her doctor put her on HRT which has completely stopped them. We're both 45 years old, so I guess it's our age. I've heard of so many women who say they get terrible migraines in their 40's, how can there not be a definitive medication that can help without giving us side-effects?! I hope some of this gives you some ideas of what else you could try. I've also heard that the Bowen Technique, reflexology and cranial osteopathy can help, but I've not tried any of these. Hang in there & just remember you're not on your own. These forums are great places to share stories and realise that other people suffer too (not that you want them to, but it does help to know it's not just you)!!! xx

  • I looked at soya isoflavones but they are really expensive. My migraine are related to mentruation and ovulation even though I am post menopausal! They suck big time! I take a almotriptan and naproxen together which kills the pain but makes me sleepy! How much were you paying for yours?

  • I get my Soya Isoflavones from Healthspan & now have an automatic monthly order that arrives. They are about £13 for a packet of 120, which I've found to be the cheapest good quality. I definitely found they made a big difference to me.

  • Oh and I have also been doing Slimming World for the last 18 months. I lost 3 stone (put just over a stone of it back on at the moment as I have had to concentrate on trying to stop the migraines for the last few months). But anyway, I looked into artificial sweeteners earlier this year and decided to stop having them, especially Aspartame, so no Muller Light yoghurts for me anymore! It sounds mad, but I had withdrawal symptoms for 2 weeks, but since the end of January, I've had no migraines! It's worth looking at the chemicals that are in the foods we eat. Monosodium Glutamate (artificial flavouring) is bad too.

  • hi

    i used to get bad hormonal migraines every month until i went through the menopause , i have had a lot of hot flushes etc and tried HRT but the migraines were worse , so now i manage without HRT and rarely have migraines and if i do they are a lot milder lasting a day instead of 3 - 5 days as before

    Sorry i don't know your age but maybe hope for the future

    take care J

  • What a nightmare for you. I would certainly go back to the NMC for a review and see what they say. I'm no expert and below is just my experience.

    I have hormone related migraines that came on with menopause. I find a more continous hormone such as the pill helped me - but would have hell on the break so would take 3 packets and then oestrogen during the break. I'm now on a 3 month cycle HRT (tridestra) - not perfect, but better.

    Most important thing Is make sure you don't have medication overuse. I can only use triptans on two occasions in a month or I'm at risk of it. I don't take anything else except sometimes domperidone if I'm very nauseous.

    I also get a terrible stiff neck and shoulders. This is worse if I'm stressed. NMC put me on a combination of Nortryptilline and Citalopram - again not perfect but reduced the intensity of the headaches so I didn't need to treat and so could avoid medication overuse. They also dealt with the fact that I'd got a bit down (who wouldn't be after 4 years of headaches). Best thing was I could keep working as they didn't make me drowsy or affect my driving or ability to think. I have dropped a day though.

    The most useful thing has been mindfulness meditation - I started with this: amazon.co.uk/Mindfulness-pr... - but you have to be willing to pu 6 weeks work in before getting any real results. I have also learnt to accept that I have a disability and am limited in what I can do, and to enjoy those things that I can do. This book helped hugely with that: amazon.co.uk/How-Sick-Buddh...

    Chasing a cure didn't work for me. Accepting who I was and working out what was most important to me did. I was headache free for most of last month, but I had a bad patch before that because things got hectic and I dropped my mindfulness practice.

    Also - helps hugely to have a hobby where you get out in the fresh air. I took up horse riding again after a 25 year break. I can't travel on holiday anymore, but I can go horse riding, which I think I prefer.

  • Glamourpusss, I am the same as you, I start having a bad migriane with my period and it lasts 2 or 3 weeks, it's endless. I have tried everything, inlcuding Yasmin without a break but it made things worse. A while ago the septicalist suggested I try Cerazette continuously, which I didn't as I had such a bad experience with Yasmin I was put off. A few months later though as I have tried everything else I wanted to give it a go but after reading what Linda says I probably won't. You have to keep trying, don't give up, I know how you feel, when there are so many things that cause your migraines and they are out of control.

    LInda I am tempted to try the vitamins, I have just started trying Vitamin D3. Yes soya is very good for menopause, but there are so many things that are supposed to help. I am tempted to try this as well, I wil end up with so many pils to take every day!

  • PS: I tried magnesium, it helped for a while.

  • Deepest sympathy! I've had headaches and migraines since just after my 20th birthday (42 years ago). At first they were infrequent and with no apparent pattern. I was in my final year of teacher training and shortly after they began I met the man I've been married to for 40 years (he's so relieved I started the migraines before I met him so he doesn't feel he's to blame!) Luckily, he has had occasional migraines so knows what it's like and doesn't make light of my sufferings. I never thought my migraines were associated with hormones because there was no identifiable pattern, but I didn't have any while pregnant (though I only tried that cure twice) and since the menopause I have ceased to have the "throwing up every 20 minutes for 12 hours" sort that I used to get several times a month. I just have a more or less constant headache with occasional spells of a few days off.

    I think they call what I get now "transformed migraines" and my neurologist thinks I'll always be a migraineur. I control them with far too many triptans (15 in a good month), plus paracetamol if I think it's "just" a headache. Sudafed helps if there's any element of sinus problems and sometimes Gaviscon helps with a slightly dodgy tummy. I also get severe neck pain and immobility on the left side, curiously the same side I used to get my worst migraines, and I usually try a heated wheat bag and/or ibuprofen to ease this. I have an electric blanket which has made bedtime less of an ordeal to face as the overall warmth seems to help other aches and pains. I've had surgery for sub-acromial impingement which is similar to frozen shoulder - perhaps you should check that's not what's causing your neck and shoulder pain?

    I took a synthetic HRT (Tibolone?) during the menopause for a couple of years which helped with the hot flushes, but may possibly have triggered ovarian cancer (which is 5 years ago now and all well). I'd be wary of advising anyone to use HRT, but know of people who've had good results all round with soya. I take magnesium and calcium and have tried just about every therapy or preventative over the years and none have worked. The latest is GON injection which doesn't seem to have done anything at all really. I was never able to progress in my teaching career and spent my final 10 years of work working from home using a computer, which probably wasn't ideal, though at least I could crash out when needed and that still seems to be the key now I'm retired. Try not to fight it, crash out for a while and sometimes it just goes away. More often than not though it's another tiny tablet from the Zomig store. I've been told Topirimate is next to try then maybe Botox. I'm not keen on either prospect. I hope you find some relief and that you keep in touch as I'm finding it helps a lot not to feel so alone.

  • Your experience sounds so like mine. I have been a migraine sufferer for over 40 years and also take about 12 zomig each month. I have found that they are much less effective than they were when I first started taking them about 15 years ago. I have had a hysterectomy and wonder if that has had some bearing on the increased frequency and recurrence. Will give soya a try and see if it helps.

  • I also have a pattern of having migraines around the time of my period, but it's not strong enough for it to be a proper menstrual migraine. I also have other problems relating to my period - horrible PMT, for which I've been on anti-depressants for about 4 years, and severe cramps. I've tried going on the pill but it just gives me headaches, and anyway I can't take the combined pill because I get migraines with aura. My GP has suggested I try the Mirena coil, which she said releases only a small amount of hormone - enough to stop periods in most women who use it, but not enough to cause the problems I've had with other hormonal-based contraception. I haven't had it fitted yet so I don't know if it will work...but given the problems I've had with my periods, finding something that stops them feels like the holy grail right now. Anyway, I thought I'd mention this in case it's not something you'd thought of before.

  • Pattipan, try not to go on Topiramate if you can. I was on it for a month and have never felt so awful in my life. I felt dizzy all the time, really sick and couldn't eat, my eyes went funny and I thought I was getting an eye infection, but a friend who's a pharmacist came round & said I needed to phone the doctor and get off the Topiramate. I know not everyone gets the side-effects but it's not a nice drug (are there any?!). Although I continued having migraines after starting Cerazette (although they improved for a while), I would not come off it now. I used to get bad periods, lots of spotting & pains and all that has gone, I don't have periods at all now. The doctor said that in Europe it's very normal to take the pill continuously and they think nothing of it, as I was a bit concerned about this. Have a look at this website about the vitamin supplements. I am about 80% better than I was before Christmas since starting on this and also having acupuncture.. migrainetrust.org/assets/x/... It's hard as we're all different, but if we share ideas, there's bound to be something that someone will suggest that will help another sufferer. I'm just very grateful that I haven't been sick for nearly three months now and I used to be sick about once a week! I wouldn't say I'm cured at all, but just loads better than before. I hope they don't get worse again and I hope that all of you find something to help too. Don't give up. Try the vitamins, they shouldn't have any side-effects (speak to a good health food shop owner first) and may just provide some relief. x

  • That's awful. I have migraines related to neck & shoulder problems, and have also tried the usual run of acupuncture / osteopathy / TENS machine etc. Physio has been helpful in managing chronic neck & shoulder pain (in fact, I am off to try it again tomorrow). Osteopathy made it much worse for me, to the point of actually getting migraines just after the treatment.

    I now have botox injected into trigger points in my shoulder, and forehead / scalp. This is really for the chronic pain, but it has the side effect of reducing the migraine headache. My migraines have gone from several a month to less. The botox doesn't stop the non-headache symptoms, but that's OK for now. Yesterday i had one - flashing lights, a bit of nausea, rotten headache starting up, and I got rid of it within an hour with ibuprofen & was able to carry on normally. Sometimes I can feel a bit unwell with a dull pain in my head but it's not even worth getting the tablets out becuase it goes. The botox has transformed things dramatically. I know it doesn't suit everyone. but I would give it a go if you can.

    Good luck

  • Hi. I have menstrual migraines, that also come with neck and shoulder problems. I had an MRI scan some time ago due to tingling in my arms that showed moderate cervical spondylosis (degeneration of the spine in the neck), and some foraminal narrowing. I then decided to try taking supplements to help my joints. I take lots of supplements, including vitamin D and B12 (which I think are key for me) and the neck/shoulder problem is almost gone. I felt like an old lady before, now I feel like me! I also use progesterone cream in the second half of my cycle and have been migraine free for all of 2013 so far (fingers crossed it will continue!). This is pretty amazing after more than 10 years of migraines at least once a month. I did a lot of things together, but something is working for me. I do wonder how many of us are deficient in many vitamins and minerals, and whether this is a cause.

  • Hello, I'm new to this forum. Nothing useful to add apart from that I seem to be following the same patter - menstrual headaches / migraines which are now 'transformed' into a chronic headache (solid one for last 8 weeks) - I'm nearly 44. I have just started on Migrelief and am seeing a cranial osteo (for the neck issues that I also have).

    ejh1 - interested to hear about the progesterone cream. When in your cycle were you previously getting the migraines?

    thanks

  • I can say I feel a portion of what you feel and wish I could help you but the reason why I came to this website is to maybe get some advice myself. I've had migraines ever since birth and gone to some excellent experts in migraines and even then they haven't found why I get such horrible migraines. I don't get migraines ever day but if I were to hit my head accidentally against something or were to be lightly hit in the head I will get a migraine. I usually get migraines about twice a week and can last up to about 5 days and they never cool down to give me a little break. It seems like they're always at the strongest they can be. Right now i've had a migraine for three days straight and thought a good nap would help out so I slept up to 14 hours and I woke up and it helped by bumming it down to only a headache which I really appreciate I usually take pills that shave around 400-500 mg. I've heard that taking 800 mg will have a effect onyouthat will certainly help you out so you might want to take about 2 pills ( that's what I do) and takea napand othat usually does it forme if I have a headache I do the same with a migraine but thatusually won't do it so I take warm or hot showers then I just wait. I've tried every thing as well and have booked an appointment with another expert and let's see if they find anything. I wish technology can be invented at a faster rate it'll really help you and me and whoever is reading this out. :)

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  • I also have migraine which is totally debilitating. My face neck ears shoulders and skull suffer severe pain. I can't find a cure and have been hospitalised many times to to migraine. Sickness ear pain, speach slurring and pain in my arms and hands are only a few if the symptoms. Dies anyone have a cure

  • Sorry to hear how bad ur suffering. I can understand ur symptoms are similar to myself. I suddenly had shoulder n neck pain where i was crying with pain cudnt move my neck it seemed locked to the left! Nerologist dismissed mine too saying its a recent thing n not to do with my sudden severe migraines! Iv tried light neck exercises which have helped n now able to move it but docs where of no help! I use peppermin oil to ease the aches now n still usin gabs n zomig when pain gets too much but sometimes feel docs dont understand how bad we suffer! I try yoga when im pain free! As for botox i was refused! So i guess ill try to self medicate! :/ hope u have better days soon ;)

  • There are lots of great replies & suggestions here. Thank-you everyone.

    I plan to try: Botox, Estoven, vitamin e, b-12 injections, acupuncture and possibly an anti-depressant.

    Until recently my migraines were at least predictable--every four weeks, just around the start of my period, lasting 2-4 days. In the last 6 months they have been coming every 2 weeks. (milder headache, but I'm still feeling exhausted). I have not had a period for two years, so I'm hoping the hormone levels are finally decreasing.

    (I'm always very hopeful). I do yoga to help with the aches, no more heavy exertion like running though, since it just exacerbates the migraine.

    The things that have helped me most: keeping a record of migraines in my calendar, taking it easy & napping when possible & taking Zolmitriptan for the whoppers.

    I would love to hear of other's experiences with the above treatments. I'm 54.

  • I also have been suffering from migraines for years. The things I found to help were low lighting and lavender oil. The only thing is that you should not use it if you have low blood pressure. I even take massage therapy ( physiomed.ca/treatments/mas... ) weekly. Yesterday she worked mainly on my shoulders and neck and it was almost an instant relief and I have no signs of headache or migraine today. It really worked well. If you can manage your time for a weekly massage it will make a difference.