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(14 Posts)
JaneFoley66 Tue 01-Nov-16 19:58:56

My daughter has severe, disabling, almost constant, migraine. We have tried all sorts of things, the latest is a gynae appointment as her high points (bad times) are definitely pre-menstruation and during ovulation. She has had this for 5 years and is 43. My daughter holds down a supervising professional job as a senior midwife, somehow. We need to know the experience of others and how they cope. She has tried everything - drugs of all kinds are prescribed and then removed later when they don't work. Often these drugs do work but then things slide after 2 or 3 weeks.

JaneFoley66 Tue 01-Nov-16 20:00:21

I really will appreciate any experience any of you can offer. I think she is the bravest person I know

Mumswallet Tue 01-Nov-16 22:47:06

That's truly awful janefoley66. I've suffered for years but yet since being on HRT (oestrogen only) has disappeared to perhaps one every four months. Yes. I have a high pressured job, children, watch my diet (hardly any alcohol, cheese, chocolate...sad) but it works. Perhaps a FSH test. Cannot extol the virtues highly enough. But migraine? The most underrated "illness" when it's so bad...good luck.

JaneFoley66 Wed 02-Nov-16 10:25:43

Thank you Mumswallet I will pass this onto her this morning. She called me today to say she is not coping and is sick of putting on a brave face plus she feels guilty about the children and that all they will remember is her lying in a darkened room - which is not the case of course. She plans to take a month off to recover slightly - if it works. How bad was yours? She has a bad one before during and after a period, and it carries on with only slight improvement to ovulation - after that it eases and she has 1 week to 10 days of slight relief.

pseudonymph Wed 02-Nov-16 10:30:50

Jane - has she tried the national migraine centre in London? They specialise in migraine management, and you can self-refer:

Also, I'm not a medical professional, but if it's clearly hormonal, I would think a gynaecologist is the right step. Would even a hysterectomy be an option? I know it sounds drastic, but migraine is awful.

JaneFoley66 Wed 02-Nov-16 11:31:30

pseudonymph. Yes it is hormonal and she is seeing one on Jan 4th - which is ages away thanks to the waiting list. She could go privately sooner but she wants to wait and see how the month off works so she can assess what happens with no night duties. She hasn't been to the migraine centre in London, which is odd as she's tried everything nearly. I'll pass on what you have said. Thank you

Mandatorymongoose Wed 02-Nov-16 11:55:22

I have horrible hormonal migraines. I've been taking Topiramate for about 18 months (150mg in divided doses) which is the first thing that has actually made a difference to frequency/ severerity.

I do still get them now and again and my management plan is 900mg asprin and two pints of water as soon as I start to notice one starting. Then rest and hoping for the best.

I also got a daith piercing a couple of months ago, which is probably a total placebo but I haven't had a migraine since then grin

I don't think shifts help much. I'm a nurse and I know that long days / nights often make me more vulnerable.

To offer a little reassurance though, my lovely DD is 17 and while she understands and sympathises that I have migraines that make me a bit useless for short periods they are certainly not a major feature of her childhood memories.

pseudonymph Wed 02-Nov-16 14:15:49

Yes - that sounds like a good idea. The migraine clinic also advise you to keep a diary with what you eat, when you sleep, etc so you can pinpoint triggers. It's a hassle, but a good idea. Shifts probably don't help - I think you're meant to try to keep your life as regular as possible - not always easy of course.

Another thing to note is that people respond very differently to migraine meds - all my family suffers from migraine, but the drugs that work perfectly for me (triptans) do nothing for my sister - so it really is worth trying everything.

Wishign her good luck.

JaneFoley66 Wed 02-Nov-16 14:47:27

Thank you. I'll pass on the good wishes

Mumswallet Mon 14-Nov-16 13:12:48

JaneFoley66 if you get over to France buy Migralaine. It's fab. In any old pharmacie. Plus no red wine, cheese, choc and generally rich food. Boring I know but have managed mine for years like this. Never low blood sugar. Ditch coffee. Oh. I sound an inconsiderate dragon but the days of lying in a bed with weeping eyes are over..hormones defo a major factor. Plus if one hasn't a 9-5 type job. The circadian rhythms are up the spout sad good luck. This MN is marvellous and I've learnt so many tips. smile

Starduke Fri 25-Nov-16 08:05:47

She does night shifts? I'd say that definitely doesn't help.

i've tried many many meds with varying success but one thing that both neurologists I've seen have said is to have a routine : so I always get up at (roughly) the same time, I eat at the same time and I go to bed at the same time. I never let my blood sugar go too low (guaranteed migraine if I miss a meal for example)

I was even told that having a lie-in at the weekend and eating your breakfast an hour later than usual can trigger one.

VivienneWestwoodsKnickers Fri 25-Nov-16 08:09:31

Pizotifen helped reduce mine from 3 or more a week to one every six weeks.

Nasal spray dosed Imigran works in 20 mins when I use it, and Buccastem helps with the nausea.

Has she seen a dietitian? I did FODMAP, identified a number of things which caused my IBS, and also discovered I had no migraines during that period either which was very interesting. I haven't identified a migraine trigger yet, but am working on it. It could be a build up of things rather than a single food item.

JaneFoley66 Sun 12-Mar-17 02:51:49

To bring a late update to my story of my daughter's severe migraines, since November she has been on medication to block the function of her ovaries and it has worked It means she is having an early menopause but compared to her migraines it is nothing. So now they have agreed with all the evidence after more than 3 months that she will have her ovaries and fallopian tubes surgically removed . she still gets headaches, and the medication is only a block but after surgery it is hoped even they go away. So thank you all for your interest and help. I will come back and update again when she has settled down after the surgery

JaneFoley66 Sun 12-Mar-17 02:54:14

I should add she still gets headaches as opposed to hideous constant migraine. The medication blocks the function enough to illuminate the migraine. With all hormonal activity gone this should eliminate even the headaches. I just want to clarify that bit.

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