Neurology asked me to come off HRT

[101trees]

I have had chronic migraine without aura since I was a teenager. Predominantly menstrual migraines.

I'm on 100mg evorel + 200mg daily utrogestan. I'm only 40, but have strong family history of early menopause + osteoporosis.

Initially HRT + Rimegepant really stabilised my migraines, so Neurology passed my care back to GP 9 months ago.

6 months ago I migraines worsened again, I started to get way more hot flushes and night sweats, so I increased the patches to 75mg, then 100mg. I've been on 100mg patch almost 10 weeks.

Since going up to 100mg patch, I've had significantly more flushes and night sweats, and a few more migraines. They seem to keep getting worse.

My migraines are out of control, almost daily, GP hasn't been able to help so asked me to go back to Neurology to email and ask. They advised to come off HRT. Experience tells me if I don't do this, they will not help until I've tried it.

I'm concerned I'll be much worse if I come off HRT.

Is it possible increasing estrogen can cause more hot flushes and symptoms? They are getting significantly worse, but I'm not sure if it is just natural progression of peri, or the HRT causing it.

I get flushes a lot, but much more in the week before my period (which seems to be getting later and heavier).

I'm reluctant to come off HRT also because of osteo risk.

Any advice much appreciated!

I don't know sorry but I wonder if it's worth the one off consult fee with a HRT specialist such as Sarah Gray at St Erme Medical or Louise Newsom group?

I had dreadful migraines on the pill so wouldn't be surprised if HRT was a factor.
Could you trial three months without HRT and monitor the difference?

Can you try a different type of hrt, Oestrogel or sandrena instead of the patch? If you hot flushes are getting worse, it doesn’t sound as if you’re absorbing it. Not everyone gets on with every type, worth trying something else first.

The patch didn’t work for me and my migraines (which had generally occurred monthly with my period) became 3-day blinding-pain vomit-fests during perimenopause. HRT did help when I found the right type and dosage (Sandrena gel and lots of it) but I also started on a daily migraine preventer tablet which has been life-changing.
I got the best HRT advice from Newson Clinic which was expensive and the best migraine help from a neurologist from The National Migraine Centre which is a charity and so you pay what you can. You can also self-refer.
The National Migraine Centre has an excellent podcast called The Heads Up Podcast with episodes devoted to topics like menstrual migraine, preventative medication and menopause. It really helped me advocate for myself and learn how to deploy my meds to best effect.

Thank you for the replies. Very much appreciated.

I have had advice from a private menopause specialist, but then moved onto my GP who prescribes. I will go back to the specialist.

I think if I came off the HRT now it would cause massive migraine issues because they flare up when I change something hormonal. So it would be a very long slow painful process and I'm reluctant to do that unless I actually believe it would help.

The increase in hot flushes really confuses me. They're low estrogen symptoms I thought? And the fact they get worse the week before my period makes me think its not enough estrogen, rather than too much...

Sandrena is estrogen gel ? Switching seems preferable to stopping. At least I'm not a crazy anxious lady fearing for my sanity anymore. I'd prefer to wake up hot than anxious !

This is really helpful, thank you. I will try the National Migraine Centre. Do you mind if I ask what the preventative was which worked?

I've had various things over the years, but found the menstrual migraines really resistant to treatment.

@101treesYes Sandrena is an oestrogen gel (not just my blood type 😀) but I also on a fairly hefty off-licence dose from Newson Health because they identified me as a poor absorber. They have been criticised for prescribing larger doses but I have found great relief from their individualised approach and I always seem to need the maximum dose of any medication. The NHS would offer me Sandrena but not daily amount that Newson recommend for me and which has helped me so much. I did switch to patches for a while because I find waiting for the gel to dry a bit annoying but my symptoms returned on the patches and then quickly went away again after I went back to gel. You’re right that flushes and night-sweats are generally a low oestrogen issue so it’s definitely worth another conversation.
The migraine preventer I am taking now is called Candesartan. It is primarily a blood pressure medication which was found to be effective for migraine prevention. I have had zero side effects. I had previously tried a couple of the antidepressant meds which are used for migraine prevention but I awash so tired that driving felt dangerous and I have to drive a lot day-to-day. They also, I believe, often prescribe a beta blocker for migraine prevention but as an asthma sufferer, I wasn’t eligible for that.
I listened to the podcast about prevention before my appointment so I knew what I thought my preference was and the NMC neurologist agreed that Candesartan would be a sensible option for me to try. No preventer works for every migraine sufferer and it is a process of trial and error. Some of them are very expensive and hard to get from the NHS for that reason but Candesartan is cheap. The NMC neurologist sent me a long letter after our appointment which I took with me to the GP who prescribed Candesartan straight away. I had to start of one 4mg tablet a day and increase the dose slowly over a few weeks. You can take up to 16mg daily but I found relief on 8mg. I have been on it since 2022.
I still use migraine “rescue-meds” once every 6 weeks or so but those meds now work effectively and I don’t have to stress that I am taking too many and may get medication overuse headache. (The Heads Up podcast episode on Medication Overuse Headache is also a must listen).
I have just realised I have been banging on far too long but it is not an exaggeration to say that HRT and Candesartan in particular have changed my life. I lost a lot of 2020-2022 to migraine. I regret not pursuing a prescription for preventers earlier and now am a bit over-passionate about it!

@101trees I am a migraine sufferer but they are very few and far between. I used to get hormonal migraine with headaches just before my period. This still happens sometimes on HRT. I'm using the sequential type - progesterone for 12 days a cycle. I've been on HRT over 15 years through a top gynaecologist.
HRT has never affected my migraines in a negative way.

Are you post menopausal?

Unless your periods have stopped and you are diagnosed with POI you should not be using progesterone daily- you should be on sequential HRT.

To give you my experience, I tried switching to continuous Utrogestan for 3 weeks and it gave me a daily migraine- this is what happens (to me) when the level of it tails off even on a daily dose.

So I went back to sequential.

I think you're right that it's not the estrogen. You using a LOT of Utrogestan which will be to balance the 100mgs patch.

My advice would be swap to Oestrogel (not Sandrena which is in sachets and can be stickier/ more messy than Oestrogel).

Try 2 or 3 pumps a day= to a 50 or 75 mg patch.

Change to sequential Utrogestan- 12 x 200mg per cycle (you can, under medical supervision also extend the cycle to 5 or 6 weeks, or even alternate months if you're progesterone intolerant which means you get more weeks just on estrogen.)

Hope this helps.

Wow thank you for all the advice. I'm in peri, not menopausal yet.

I've done a poor job of explaining the utrogestan...

I have been on cyclical utrogestan - 14 days on/off. I get along well with it, I sometimes think I feel better when I have both than just the estrogen.

But I did identify a while back that I get a bundle of migraines after starting/stopping it. So I guess it does have the same effect as you @JinglingSpringbells, just on a bi-monthly basis rather than daily.

So GP suggested to try utrogestan continuously to avoid some of the migraines.

This is the first month I've continued, but I've actually only been taking it for 19 days so far, my period started yesterday.

This
is the first day I've not had hot flushes / night sweats last night and feel more normal. So I think that does mean low estrogen causing them? Still? Somehow?

The migraines are so predictable on a pattern. Always have been. Day 1, Day 7&8 (2 days after end of cycle), day 18 (after ovulation), every day of week before my period. On a bad month, they sort of blend together, I'm lucky if I get a day or two break between.

I can plot them over a graph showing estrogen dips in a normal cycle. I always thought it was dips in estrogen which causes them, but the fstart/stop utrogestan also caused them.

I'm wondering if I might be better on something which stops ovulation, from a migraine perspective, but I think that depends on whether it's fluctuations causing symptoms, or low estrogen in general. I'm not sure how I'd know that.

I am partly concerned about potentially not getting enough estrogen because I have so much osteoporosis in my family. I've seen what that's done to my mum and her poor mum (who got accused of making it up) before her. I think that's Neurology asking me to come off has freaked me out.

Also because I'm so damn hot all the time. Everyone else is in coats and scarves and I'm sweating in a tshirt getting weird looks.

I'm wondering if I might be better on something which stops ovulation, from a migraine perspective, but I think that depends on whether it's fluctuations causing symptoms, or low estrogen in general. I'm not sure how I'd know that.

Younger women like you are sometimes prescribed the CCP Zoely or Qlaira. These have a more natural estrogen like HRT and stop ovulation. They will also help protect your bones.

You have to ask your GP to send you for a DEXA scan to see how your bones are now. With a family history of early menopause and osteo, you are eligible for monitoring. These scans should be done ideally every 2 -3 years although the NHS will usually only do them every 5 years. But have 1 to start and see what that shows. if your GP refuses you can have them privately.

If you don't want the Pill it might be worth going back to the beginning- swap to gel as you can adjust the dose. Go back to 14 days a month Utrogestan and see how that feels. At the moment is all sounds a bit of a muddle and you need to give any new regimen 3 months to see what happens.

Have you considered a Mirena coil for your progesterone? Lowest amount of progesterone and no fluctuations. With your migraine history you are probably progesterone sensitive. At the least I'd try the Utrogestan vaginally if you haven't already.

I'd also suggest going back to your menopause specialist. I found I had a migraine every time I had a hot flush. I only absorb one type of patch - which then had a shortage - and am now happy on Lenzotto spray.

I doubt you would get anyone to prescribe you the combined pill - I thought I didn't get aura for decades. Turns out I do now. However I could tolerate the progesterone only pill and no hormonal cycle stopped my hormonal migraines. Of course there were still all the other migraines but it was a big win.

Hrt has been banded about by some as a cure all, it’s not and you have to balance risks and benefits. If you go to a private specialist they will prescribe, just like if you go to a private adhd specialist they will diagnose … this I have from a gp friend who is local health area panel, very senior and they are concerned that private doctors simply give what you ask for. For some women hrt is useful at least short term but if it’s giving you terrible migraines I think you know the answer, stop, at least temporarily, see what happens. Hrt is not essential, I’ve done the research and won’t be taking the risk associated with it

Slightly different but I have had the implant for about 8 months and found it terrible for my moods etc so had it removed two weeks ago. The ONLY positive I found with it was the muscle tension in my shoulders and neck and the associated migraines (with aura) had gone. Now its out they're back. So I can only presume the progesterone in the implant had a positive effect on this.

I don't think it's fair to say all private HRT clinics will prescribe. But some certainly will - mine was keen to tell me she 'didn't do Newsom' and my GP also was fed up with Newsom.

It depends where you go.

I have found cyclical hrt a huge help for migraine. My Dr said patches were a good way of doing the estrogen part as you get a more steady release, as it's fluctuations, rather than estrogen per se, that causes some women's migraine.

I've never got on with the various migraine drugs but a lot of people I know who used them found eventually they were causing more headaches than they were preventing. I think I'd want to rule that possibility out before giving up on hrt.

It is unlikely the neurologist has a good understanding of the health risks of early menopause in terms of not just bone health but the increased cardiovascular, cognitive and metabolic risks.

Nor may they be aware that transdermal estradiol and micronised progesterone do not carry the same risk of stroke that usually makes them want women off the pill or tablet HRT.

Personally I would continue to advocate for appropriate treatment of both conditions.

However it may be worth looking into a non- cyclic HRT regime, because as with natural menstrual cycles, the seesawing up and down of hormones can exacerbate migraines in some, whereas the stability of consistent hormone levels can be beneficial.

Placemarking

Thank you for all the considered replies. It's really nice to feel there are people who would take the time to try and help ! Especially in the context of it being so hard to access NHS services.

To just respond to a few specific points.

I increased the HRT in response to increased migraines.

Pre-HRT I had 16-18 migraines a month.

Starting HRT (50mg patch, cyclical utrogestan) dramatically decreased the migraines and menopause symptoms. I only had 5 migraines in 3 months. The only thing which has ever reduced migraines in my adult life.

When the migraines & menopause symptoms both started to get worse, I increased the patch (twice). This hasn't worked and both the flashes and migraines have continued to get worse.

But my current migraines (16-18 days a month) is actually just back to my previous baseline.

So HRT hasn't caused my chronic migraine. I know it does for some people, but mine was a pre-existing condition.

I think that's why I'm so grumpy about Neurology's request.

Are you on HRT for peri /meno symptoms or to try to control your migraines?
It's sometimes hard to see the wood for the trees.

Maybe you need to separate the two out.
Use the right dose of HRT to control your flushes and deal with the migraine separately. If HRT doesn't make your migraines worse, why would you need to stop it?

However, I don't think upping the dose all the time is helpful anyway and it may be best to go back to a medium dose of 50mcg and see how that goes.
You could also swap from a patch to gel as some women don't absorb well from patches. AND they do gradually run out over the days so you would get a more constant dose from applying gel daily.

Hi @JinglingSpringbells

I'm on HRT for menopause symptoms. It managed these really well initially, but then tanked, they've been increasing ever since.

The reduction in migraines was a massive unexpected bonus.

I was thinking the same. If I separate them then I have

1. Continued uncontrolled chronic migraine
2. An HRT regime which isn't managing the symptoms.

If I look at both together then it seems like Zoley makes sense - to try and stop fluctuations, but Zoley is quite low in estrogen, and hot flushes (which is my main symptom which is getting worse) is a low estrogen symptom. They're particularly bad the week or so before my period, so low estrogen makes sense.

It's too hard to try and fix it altogether, though the underlying cause of both is the same. I'm going to write back to Neurology and say that. The guidance is pretty clear that HRT should not be used to manage migraine anyway, it's for menopause symptoms, so I want to take that out of the migraine equation.

I do have a couple of questions someone might be able to help with...

1. Does Zoley definitively stop ovulation?
2. Would a blood test show if I was absorbing estrogen from the patches or not ?

I had blood tests before starting HRT which showed elevated FSH and low LH. I think estrogen was 220. Are they any use once you've started HRT ?

My mum & Gran went through menopause pretty quick at 40/42. I'd like to know if I'm closer than I think I am. I'd like to understand if the flushes are a symptom of low estrogen overall, or just lots of fluctuations, as I think I'd try zoley if it is fluctuations, but not if it is just overall low.

I've no idea how to find that out without doing it the hard way...

I am on Zoely which I take continuously. It definitely suppresses ovulation and provides a nice stable level of estrogen which is adequate for me, and there's no way I'd accept low estrogen as both my parents have osteoporosis.

It is certainly worth a try, what have you got to lose?

It also comes with all the underrecognised benefits of combined oral contraception - no bleeding (if taken continuously) and reduced risk of endometrial, ovarian and colorectal cancers with long term use.

The only issue is if you have aura with your migraines, the pill was historically considered contraindicated. However this was based on much older pills with high dose synthetic estrogen, taken in the outdated regime which included a hormone free week.

Modern pills especially Zoely with body identical estradiol, taken continuously, can actually reduce migraine burden by eliminating hormone fluctuations.

I agree with most of what @Charliede1182 says.
The newer CCP are made with body-identical estrogen so possibly don't have so much of a clotting risk.

BUT the clotting risk is (as far as I know) more to do with the bypass through the liver and how it affects lipids and clotting, not the type of estrogen.

As far as testing your estrogen- it's a no-no.
With younger women, they test your FSH levels, over 2 months on days 2-5 of a cycle. This can't be done if you're using HRT.

On HRT it's pointless anyway. I have used HRT for over 15 years with a highly respected gynaecologist and have been told the test is not accurate.

Flushes etc are a result of fluctuations in your hormones and possibly also low estrogen. I think they don't actually know what causes them precisely because when women have very low estrogen when they are older, many still have flushes (ie some women into their 80s.)

If you are willing to try something a bit unusual, watch this video:

Ketogenic Therapy for Migraine Management - with Dr. Elena Gross

As a benefit the dietary intervention discussed can also help with symptoms of the menopause by helping to regulate hormone levels. So it is worth considering.

The 17 beta estradiol in Zoely is MUCH less thrombogenic than the ethinylestradiol contained in older pills such as microgynon or marvelon etc (although even these are still very safe and I have been on both in the past with no issues). NOMAC is also a very benign progestin compared to some of its cousins.

However it is correct that all oral estrogen containing products carry a small increased risk of blood clots. In healthy women this amounts to an extra 5 or so per 10,000 over a year.

This is worth knowing about, but keeping in perspective compared to the benefits, and in healthy women the risk can be mitigated by being active, not smoking, keeping hydrated etc.