Upping oestrogen patch? (Headaches and hormonal migraines)

[faial]

I tried to get advice from the GP on this today but have been given a phone appt in 2 weeks.

I was on HRT for a few years and in the last year of it was switched to Utrogestan continuously (previously on 2 x desogestrel as the progesterone part) and in that year I had only one or two migraines . So I thought that maybe Utrogestan was keeping them away (had been on Evorel 50 then 75 for 3 years prior so probably not that as had migraines throughout)

I stopped HRT last August for various reasons, but started getting migraines again, just one or two a month initially but had 9 in December including one that went on for 4 days, possibly due to triptan overuse. I decided to restart both Evorel (half a 75 patch) and utrogestan about 6 weeks ago in an effort to prevent the migraines. Since then I've had 3 migraines (better than 9!) and quite a lot of headaches (not better than none) so I'm wondering whether I need to up the oestrogen patch to 3/4 or a whole one or just stay on the half patch and wait for the GP and have loads more headaches.

I'm not sure whether the headaches will stop when my body readjusts to the HRT, or are to do with oestrogen not being high enough. Any thoughts?

I find any change to estrogen (starting or increasing) stirs up my migraines and it takes quite a long time for them to settle down again. More like 12 weeks than 6...

It is usually the estrogen rather than the utrogestan which helps migraine, although I also found sequential utrogestan made them worse and continuous utrogestan made them better.

A side effect of both estrogen and utrogestan is headache when starting. Perhaps this means it hasn't settled yet ?

I think I'd maybe let it settle a bit more first? I've learnt to be really slow and cautious with changes in hormones because migraine is so sensitive to changing levels.

Have you tried Rimegepant for migraine? It's a form of anti-CGRP available in the UK. You can use it as an acute or preventative medication (but I think it is easier to get as acute only). It has the significant advantage of not causing rebound headaches. I've found it not as reliably effective as a triptan, but most of the time it works and you can use a triptan on top if it fails. I'm yet to have a migraine which has outlasted both those two together, but I've had ones which failed a triptan or Rimegepant alone.

@101trees thanks that's very helpful. I think I had better wait to see what the GP says. I haven't tried rimgepant because gepants need a neurologist initially I was told. I'm still in PIFU with neurology at the local hospital but they said that whilst I'd be eligible for the newer medications they couldn't prescribe them and referred me on to a headache clinic at a larger hospital however the wait for that is around a year.

Do you find Rimgepant tolerable in terms of side effects?

I normally take triptan (currently naratriptan) + naproxen (plus metaclopromide and omeprazole) which usually works but makes me feel awful for a couple of days, but I'm due to have a second course of ESWT for a hamstring problem and you're not allowed NSAIDs for about 8 weeks which is partly why I went back on HRT. I was post ESWT in Dec and didn't take naproxen for the first migraine as still in the 8 week period and I suspect that might be why it came back.

Can you take ibuprofen instead of naproxen? My neurologist told me to take ibuprofen and omeprazole with the triptan as it improves effectiveness of the triptan.

I was prescribed the Rimegepant under a specialist headache clinic at a hospital, but my GP took over prescribing, sorry to dangle it in front of you, I'd forgotten it came from the headache clinic initially.

The side effects are less than a triptan, it makes me very sleepy, which is not always a bad thing with a migraine and I feel a little odd, like driving wouldn't be a good idea, but I feel horrible with triptans sometimes and it's less horrible than that. I've always found the side effects of triptans and Rimegepant wear off after a nap though.

I use it as a preventative as well as acute. I take one every other night before sleeping.

Sorry I'm not sure what EWST stands for.

Have you done the old- try at least 3 preventative medications for a minimum of 3 months and had them fail malarkey before your headache clinic appt comes though? They're absolutely diligent about following the guidelines there, it would be worth making sure you've met all that criteria before your appointment.

My headache clinic offered me botox or cgrp injections. I had botox which I hated, never tried the cgrp injections but was put on a Rimegepant trial whilst waiting for Atogepant to be approved - I hear atogepant works better than Rimegepant so if you have the choice might be better to go for that.

I didn't fancy the constipation risk with injectable cgrps so settled on Rimegepant.

You can buy Rimegepant privately I think. It is expensive, but if its a short term couple of boxes to see you through until your clinic appt comes up then might be worth it? You'd know then if it worked or not rather than having to do a 3 month trial of it to find out it didn't work...

PS - They will want you to stabilize your HRT before they treat you at the clinic too.

Thanks it sounds like it's worth exploring the gepants and good to hear that they might be less horrible than triptans. I'm hoping that my HRT will be stable by autumn/Dec and possibly the headaches etc. will have gone by then, which would be a nice problem to have.

Haven't tried ibuprofen instead of naproxen but whenever the next course of ESWT happens I won't be allowed that either - NSAIDs interfere with the healing. (ESWT involves a gun that creates a soundwave that promotes tissue healing). So I will just have to wing it with triptans.

I have tried propranolol, amitriptyline, Candesartan and Cefaly and a few others that I can't remember as preventers, none of which worked and have been told I would be eligible for the anti CGRP meds. I don't like the sound of Botox and I would assume the headache clinic would try the gepants first as they're cheaper, I think.

I find my migraine is triggered by low oestrogen and hot flushes in particular so you might need more oestrogen.

I've had Botox and anti CRGP meds, they both work really well. Bonus of the Botox was no frown lines but it didn't hurt and nobody else could see it unless I pointed it out.

Do you mind if I ask which CGRP injections you had, how well they worked and any side effects?

I didn't get on with botox, it caused me problems in my neck which took a lot of physio to correct.

I'm on Aimovig. Has caused very minor constipation and vivid dreams which were the two side effects I was warned about. Can also raise blood pressure - it possibly has done this but since mine is naturally low this has been a bonus.

The dreams are odd, bizarrely centred around people who were famous in the 90s - who I might not have really been interested in, and sometimes quite unpleasant. But they aren't that often and compared to the amazing response I've had to Aimovig they aren't worth complaining about.

The headaches were starting to get a little less frequent (I'm at around the 8 week point now) but the GP advised me to go upto a 50mcg Evorel patch as she feels cutting the 75mcg patch isn't giving me a consistent dose but she says it might be 12 weeks from starting this new patch before things settle.

Unfortunately the new patch has triggered a migraine and I really feel crap (triptan). I'm really struggling with this and feel really despondent and the referral is a long way off. I think the HRT is making my vulvodynia worse but I feel I have to persevere because the unpredictability of migraines and headaches is even worse. The only good thing (sort of) is my ESWT has been delayed indefinitely due to my physio being off sick so at least gives us some time to try and stablilise the headaches before then.

Hormone fluctuations definitely make both vulvodynia and migraine worse - it's commonly accepted about both conditions. I've also had problems with both in the last few years.

Personally I can't stand the stuff, but have you tried amytriptyline?

Both my vulvodynia and migraine stabilised once I was on a high stable dose of HRT (with lots of pelvic floor physio) but the HRT had to be completely stable and continuous. They're not cured but they are stable and less bad, vulvodynia is almost completely gone.

My neurologist told me that found women who have migraines have chronic muscular tension throughout all their muscles than women without. Plus having two nerve problems makes you more susceptible to central nervous system overload. So you're more likely to have muscle and nerve problems like vulvodynia because of the migraines.

If your ESWT has been delayed can you try a naproxen bridge to get you back on track? It helped me when I was on a downward spiral.

Thanks @101trees that's very interesting that vulvodynia is often found in women with migraines, I did not know that. My nervous system is indeed very susceptible to medication changes and stress.

Unfortunately amitriptyline didn't work either as migraine preventer or for the vulvodynia. I'm seeing the gynae again on Monday and I suspect they will want to throw gabapentin at it next (not keen). If you don't mind me asking what dose of oestrogen are you on?

I feel great today - generally do the day after triptan which is at least some compensation for the awfulness of taking them.

I think conditions conditions related to muscular tightness (such as pelvic floor dysfunction) are found in women with migraine, rather than specifically vulvodynia. But additionally, having migraine makes you more susceptible to having other disorders of the nervous system, vulvodynia being one. Hormones have a huge role in all of that - it's basically what has gone wrong in my body - perimenopause.

I'm on a 100mg patch, 200mg utrogestan daily.

I'm due to start testosterone soon, I was interested to find out testosterone has a positive effect on both migraine and vulvodynia. Be worth reading about it.

I also hated gapapentin, pregabalin and amytriptyline and won't take any of them. I opted for physio, HRT & Rimegepant instead. I couldn't cope with feeling drugged on top of being in pain.

Maximum dose of magnesium has been helpful too actually.

I wish I could tell you I'm all fixed, sadly not. But it is all stabilised from high steady doses of hormones and I do feel much better now than a year ago. I'd really recommend a womens health physio for the vulvodynia too.