Migraines - How on earth do I keep going like this?

[MigraineMama88]

Suffered with menstrual migraines the last 3+ years and now they’re just getting worse and worse. It’s ruining everyday life as I just cannot do anything. I’ve recently moved in with my partner and between us we have 4 young children. It’s obviously a very busy and often stressful household, and when I feel like I do I just cannot cope. I haven’t been able to give my children the fun packed summer holiday we envisioned. It’s making me so depressed as I just cannot see any light at the end of the tunnel right now. I’m sick of feeling so awful every single day and I wonder constantly how I can even carry on anymore Anyone else suffering or can offer advice?

I went private with my work cover and now have injections in the nerve in the back of my head that now prevent them. I realise that this isn't always possible for everybody, but after 15 years of being ignored and told to put up with it by the NHS, it felt the only way.

This is my doctor: farooqmaniyar.com/newer-treatment-opions

I'd recommend finding a migraine specialist near you and seeing what their payment options are, or if they do any NHS surgeries.

I bought one of these. I used it twice a day as a preventative and after a few weeks it sorted mine. I'd had menstrual migraines for nearly 30 years.

It wasn't cheap but you can have it on a trial and then if it doesn't work get nearly a full refund.

I feel so much more clear headed and now pain free.

www.cefaly.com/en

How old are you? I guess with young children you may not be peri-menopausal? I recently went on HRT hideous headaches but they have only started in the last six months and doctor believed it was caused by my cycle - one month on the HRT and not one single headache.

You need to see your GP there’s lots that can be done. They can prescribe preventatives and medications that work better than over the counter medications.

I was getting 15-18 migraines a month and have had 5 lots of Botox on the NHS. It does work quite well but isn’t permanent but there’s strict criteria. The thing that’s worked best for me is acupuncture. My migraines are now much less frequent and less severe

I have been receiving treatment since they started, I’m on preventatives and have triptan for pain relief when they come. But I’m not supposed to take more than two a week and most days I’m taking two a day :( I can’t think straight and although my doctors are trying different things to sort it out none of it is working and I’m just really struggling. I have heard about Botox for migraines but wasn’t sure I’d qualify as mine are strictly menstrual related? I’m almost 30 so I guess peri-menopause isn’t completely out of the realm of possibility? I guess I was just looking for an outlet and a bit of support from other ladies x

I am a huge huge fan of acupuncture too...it has cured all sorts for me. Maybe give that a go?

I’d honestly give anything a go right now!

Can you try a different preventative?

The amitriptyline work normally, I think it’s the pill making them worse :( they’re going to try me on the non hormonal coil and keep my meds the same. X

My neurologist told me that for many people migraines are triggered by food or chemical intolerances . I was having chronic migraines, but cut our gluten and stopped using any frangranced/anti bacterial cleaning products, and my migraines reduced to from two per week to once every couple of months. I hope that you find what works for you, it is so debilitating.

It has been awful. I’ve come off the pill and after a few days they’ve finally stopped. After 3.5 years of them there’s no doubt in anyone’s mind that it’s hormonal. I just have to find the right balance of meds I think and keep away from hormonal contraceptives. Thanks everyone for your replies

DD has chronic migraines (a recent mri scan showed substantial scarring on her brain )

We found the National Migraine Trust helpful - you pay what you can afford and her GP was happy to continue prescribing what they had recommended privately.

She is going to see a specialist optician next week as things like light flicker trigger her migraines

lookafteryoureyes.org/about-us/college-news/conditions-illnesses/dont-let-migraines-get/

Unfortunately she has several other triggers - hormones, stress, dehydration and tiredness.

to anyone who suffers with this.

My sympathies- I have chronic migraines and have been working with my neurologist trying out new treatments. I have Botox every 3 months and have been using the cefaly both as a preventative and during migraines. I also use a cold pack on the back of my neck. Classical music on headphones helps (even with the kids around). I have dark glasses that I wear in stores when I feel like a migraine is close. DD tells me I look like I have a hangover . We're now trying daily preventatives. I tried flunarazine which caused me to gain weight and sleep most of the day/night. Now on nortriptlyline, which leaves me with milder migraines. Could increase the dose but it makes me mentally fuzzy. Could you increase your amitriptiline (obv ask Dr)?

I have ibuprophen, tramadol & ondansetron to use during a migraine. Can't use triptans. Trying not to use too much ibuprophen due to rebound headache. Sometimes can get by with just nausea relief. I hate meds.

I do .

I go to Migraine.com for support when I'm feeling exhausted good article

When my kids were little and I had a migraine, I'd go to a safe place (fenced back yard, living room) where they could play without needing too much supervision. They understood when I told them I wasn't well. Now they look after me.

Be patient and kind to yourself. One of the treatments will work. Try not to focus on what you can't do (fun filled summer) as that's out of your control - reward yourself for what you can do, and try to take some time for yourself if your partner can give you a break. Remove the word "should" from your vocabulary.

Sorry if this doesn't make a whole lot of sense. I'm drug fuzzy and don't even want to think about the brain scarring I may have (thank you, pp, for putting that into my thoughts for today!)

I take topiramate twice daily as a preventative for mine now. I have numerous triggers some avoidable some not, hormones is one. The topiramate has reduced the incidence and severity when I get them, and I also have imigran for when I do get one. The combination of both has really controlled them.

Oh god I know just how you feel. It’s awful when you’re locked in a cycle of them and they just won’t bloody stop. They will though. It feels like the end of your life right now but they will stop and you will get some rest. I found the National Migraine Centre hugely helpful. I tried so many different preventative treatments before I found one that works. You have to persevere and tough it out but it’s worth it. My advice would be to make an appointment with GP or National Migraine Centre (because your current treatment plan is NOT working, don’t let them fob you off) and in the meantime be very, very kind to yourself. Do whatever you need to do to feel as well as you can right now

I have taken the beta blocker propranolol twice a day for prevention it's the only thing that has helped break the cycle for me.

Ive noticed mine appear to be hormonal too and like you amitryptiline appeared to control mine well for about three years, then all of a sudden. Nope! I think you should see your GP again, see if they will prescribe something else or refer you to a neurologist. I saw a neurologist last summer after trying about 4 different preventatives - following the amitryptiline stopping working. My neurologist said that migraines can change, it’s part of the condition, so what worked previously for you can stop working. He adjusted my medication and I can honestly say - it has changed my life! I take a small dose twice a day. Since last July I have had maybe half a dozen migraines and more importantly only had 2 days off work. I’ve gone from being on a formal warning because of sickness to no concern about it whatsoever and like anyone else really.

You may need to see a neurologist because as much as the GP can try to help, they really are not the ones with the specialist knowledge. They put me on topiramate to begin with, but they had the dose wrong and did not tell me to take it twice a day, for example so I continued to experience a lot of attacks. Honestly OP see your GP and ask to be referred if they’re trying several things and they are not working, in fact insist on it.

It's all so personal, but after much trial and error, the key thing I have found that lessens the likelihood of the migraines and then if I get one, lessens the severity, is having regular back / neck / shoulder massage. I mean, once every two weeks or once a month minimum, from a really, really good professional therapeutic masseur who basically unlocks my shoulders for me.

Gosh thank you everyone for all your support and lovely kind words. I am currently awaiting the coil (next week) and then we will go from there. It’s non hormonal so am hoping my hormones will balance out again once I’m on a regular cycle again. I have to say though that I feel a million times better since coming off the pill. I have less ‘down’ days and have had only headaches instead of debilitating migraines, which has been an absolute godsend. I do however think I could do with upping my dose of amitriptyline, as they used to work brilliantly and help me sleep too. Now I’m back to insomnia again. Thanks again ladies , you’ve all helped more than you know

I know this is going way back but I'm going to bump anyhow, @MigraineMama88 If you are still having migraines,

Have a look at this Drs website - he does a free ecourse you get all the info you need, www.severe-headache-expert.com/ - buying the book is optional, he gives all info for free. The book is what would do if had a billionaire budget.

I fully recommend him as he is the consultant I see myself on the NHS - I have a rare type of migraine and he has been a solid support over the last decade and continues to be.

Hope things have continued to improvesince Sept post

Thanks for bumping - chance to say that the National Migraine Clinic in London may be worth contacting. You can self-refer and for each consultation you pay what you can afford. No-one is turned away.

www.nationalmigrainecentre.org.uk

Evening, everyone. Hope you don't mind, OP, but we're going to move this over to General Health where we think you might get more responses. We can see the thread has been bumped recently so hopefully you've had more luck finding treatments now, but if not we think you might get a few interesting responses over in general health.

Best of luck with it all and to everyone suffering with migraines.

Bumping

Accupuncture works well for me. I get a course of 8 treatments and it lasts for about a year.

Amitriptylene 35mg, yoga stretches for neck, pop contraception and GF.

Took me over a year to get diagnosed with chronic daily migraine - good luck op I know how horrific it can make you feel especially with young children!