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[Mary G]

Hello, I'm new on here but I have been a regular reader for some time.  I have a slightly tricky problem and wondered if anyone else had experienced anything similar.  I have silent migraines (aura without headache) that seem to be caused by my oestrogen levels falling too low and they started when I approached the menopause in 2004.  I had a few episodes before my periods started and then nothing for 30 years (I believe this is called the hormone gateway) and then they started up again.  I had a Mirena coil at the time for contraceptive purposes which meant I was able to use the patches (75mg) which worked OK for a while.  The coil then expired and I had it removed and instantly felt much better so I was reluctant to get another one fitted and decided to opt for Angeliq instead.  This worked well for a while but sure enough, the migraines came back again so the menopause specialist suggested Estrogel (3 measures every day) and 7 days of Norethisterone.  Again, it worked well for a few months and then I started getting migraines while taking it - this was a bad one, Norethisterone seemed to stay in my system for a long time and I got a migraine and a normal period the following month without even taking any.  She then suggested that I try Estrogel (3 measures every day) and Utrogestan 100mg every day (continuous combined) and, yet again, this was OK for a couple of months but then the migraines came back again - I felt as though the Utrogestan was building up in my system.  By this time, I was getting desperate so I had a consultation with a leading specialist in London who recommended Estrogel (3 measures) and Utrogestan 100mg for only 7 days every month.  This worked fairly well but I had heavy periods so I tried it with 2 measures of Estrogel but I felt "creaky" and not particularly well if that makes sense!  I told the specialist and he suggested I consider having a hysterectomy which does seem a little drastic. 

I feel wonderful when I am only taking 3 measures of Estrogel but the progestin comes along and spoils the party.  I got so fed up at one point I stopped taking the progestins altogether but I still had normal periods only longer and more drawn out - I seem to shed naturally.  I have to keep up fairly high levels of oestrogen to keep the migraines away but of course it causes heavy periods.  The strange thing is, I never had any migraine, period or PMS problems while I was still producing my own progesterone, it only seems to happen while taking synthetic progestins - the Mirena coil did not cause migraines until my natural oestrogen/progesterone levels dropped.  I have never been pregnant so I don't know if this would have kicked off then.

The specialist is brilliant but not a migraine expert and the migraine specialist is not a hormone expert and nobody is sure whether it is the progestin intolerance or low levels of oestrogen that are causing the migraines.  It is a difficult one and I was wondering if anyone else has had this problem.  I don't have any other underlying health issues (thyroid all OK etc.) and have regular blood tests, internal ultrasound and there is no build up on the lining.

Any input would be greatly appreciated - I would like to give it one last try before opting for a hysterectomy.  Sorry to ramble on, many thanks in advance.

[Dancinggirl]

Hi and welcome to MM Mary G
Headaches/migraine often emerge or get worse when you become peri meno.  It is quite common to get a headache before the withdrawal bleed and progesterone can sometimes lead to more headaches. It's interesting to hear that you stopped using progesterone and continued to use quite a high amount of oestrogen but still got regular bleeds!!!
Reading your story it appears your episodes of migraines have a pattern.  You go through a phase with no headaches and then they emerge again.  You are linking this to hormones but there could be other factors at play. You tell us you approached menopause in 2004 so ten years on you should be post meno by now?  Perhaps a break from HRT completely might be a good step to see how you feel. This may sound scary but sometimes we need to go back to the start to assess why exactly we use HRT. 
I am 59, I had a premature meno that started in my mid 30s.  One of my early meno symptoms were constant headaches with long erratic periods. I was put on HRT and got more headaches and when I was reassessed at 40 they took me off everything for a month and then started me on just one pump of oestrogel  per day - which seemed to be just right.  Like you, the progesterone did give me headaches but they were manageable in comparison to all the nasty meno symptoms without HRT. I had a break from HRt at age 57 for a year and decided to go back on HRT to get some decent sleep and gain some energy back so I can continue to work. During my year out from HRT my headaches were quite bad so I know it isn't the progesterone giving me problems - I simply get headaches.
I think we sometimes hope that hormones are going to do the trick but sadly they can't solve everything.
I hope someone will be along with some better thoughts and advice.   DG x

[Mary G]

Thanks Dancinggirl, that is very helpful and it sounds as though you have experienced similar problems.  I never actually get headaches with migraines, they are silent migraines (also called scintillating scotoma) which means I get visual problems for about 25 minutes with no headache, I just feel a bit spaced out afterwards.  The interesting thing is, I never get silent migraines or conventional headaches (quite rare, I don't get many headaches) unless I take progestins - it never happens while on oestrogen only. 

You are right, I am 53 and post menopause, I went through it at high speed and was post meno by 2006.  I did come off HRT completely about 5 years ago and did not feel good at all so I went back on it after a few months and immediately felt transformed - until I got to the dreaded progestin stage!  The problem I have (and many others on here I suspect) is that I feel very, very good on high levels of oestrogen only and very bad once the progestin is introduced.  By the way, I forgot to mention that I also take testosterone every day as recommended by the specialist. 

[Hurdity]

Hi MaryG

 

Sorry to hear about your headaches and migraines - I can sympathise as I get them too. I get the other type - the classic ones - never had aura. I just get the aversion to light and sound as one is coming on, then I get the headache and feel nauseous and an incredible feeling of exhaustion lethargy, heavy head, stiff neck etc It usually lasts for 2-3 days and wakes me at the night when the painkillers have worn off. I only started getting these during what I imagine was peri-menopause although I didn't know it at the time because my periods were still regular. They occurred pre-menstrually then - so could have been due to the progesterone withdrawal or the oestrogen dip.

However when I started on HRT, I first of all started getting them on the progesterone withdrawal phase - couldn't have been an oestrogen dip then because oestrogen is constant on most types of HRT. Then I began to get them sometimes on the progesterone phase itself - but not always! The one I've just had ( finally disappeared around lunch time today) was during the prog phase (Utrogestan). Sometimes now I even get them during the oestrogen phase too - so I really don't know why they appear and not at the same time/hormone combination each month. Alchohol can bring them on - by that I mean a very small amount eg a small glass of wine if I have it say after 9 pm - but not always. I didn't have one at all over Christmas and had lots to drink then 

The levels of even natural progesterone that we have to take in order that systemic concentrations are sufficient to keep the endometrium thin means we are taking more than we would produce naturally to do the same job - which gives rise to the side effects.

I think externally given hormones can have different effects from our own endogenous hormones, so even natural progesterone (like Utrogestan) can cause a headache (like it can do to me) when one never experienced symptoms from taking it during our fertile years. This must be what is happening with you as you never had PMS problems but reacted to Utrogestan? I never suffered from progesterone intolerance - just the normal pmt that most women experience for a few days just before the period as the prog crashed (and the oestrogen dipped!). 

Also apart from the first 3 months of HRT (and 12 dyas of norethisterone last summer to "strip my lining" I have never had synthetic progestogens either.

My GP told me that drop in oestrogen levels can cause headaches and equally, externally given oestrogen as with HRT can cause headaches if the level rises too quickly even though this doesn't happen in our normal cycles when fertile.

So it's no wonder we can't work it out!

Re your bleeding even without progestogens - did you have the lining measured at any point? The bleeding may have been due to oestrogen breakthrough bleeding which can occur if the lining gets too thick so not especially a good sign! I imagine as you are with a specialist your lining is being monitored? I expect you're seeing someone like Studd or Panay by the sound of things?

I agree a hysterectomy is somewhat drastic and me I just put up with the headaches - but I am on a longer cycle. I take progesterone (Utrogestan) vaginally 12 days every 5-8 weeks so this does limit the exposure and side effects. Perhaps 8 weeks would be too long for 3 measures of gel - but maybe you could manage norethisterone for say 10 days in 8 weeks or something - if the specialist agrees? I know that longer cycles are sometimes recommended by private gynaes for women such as yourself, when they can give you regular ultrasound uterus scans. I know some specialists are not that keen on longer cycles but I would have thought this would be preferable to a hysterectomy which has its own problems, if you can cope with the side effects for a few days every few weeks?

I am not on as high an oestrogen dose as I would like for that very reason - I don't want to take progesterone for longer and nor do I want a shorter cycle!

Oops this has been a bit of a ramble and thinking aloud while telling you my situation so hope some of it is helpful!

Hurdity x

[Mary G]

Thanks Hurdity, that is very helpful and it sounds like you have come across this many times before and had a similar experience yourself.  I agree that it would appear that the synthetic progestins are not the same as the ones we produce ourselves (including Utrogestan) which is why we are getting these symptoms and also why the specialist recommended a hysterectomy in my case. 

I can only speak for myself here but I do not get any problems at all while only on the oestrogen gel only and have never experienced any ill-effects from upping the dose suddenly so I think my problems are only linked to oestrogen drops - this is why I was told that I need a constant steady dose of oestrogen.  The synthetic progestins seem to have a very, very long half life and stay in my system for a long time and the Noretheisterone stayed in my system for so long I actually had breast pain, migraine and a proper period the following month without taking any.  I can't take Noretheisterone under any circumstances, I had five episodes of scintillating scotoma in one day while taking it once and I can't put up with that at all.  By the way, I don't get headaches, I have silient migraines which is the aura without the following headache or pain.

I have seen Professor Studd but I get a yearly uterine ultrasound carried out at a clinic so I do know that my lining is all OK because I had it checked in January.  I also have a mammogram every two years and breast scan every year.

It sounds like you have found a regime that you can live with and I am going to take your advice (without the suggested Norethisterone) and try the 10 days of Utrogestan (vaginally) every 8 weeks and see how I get on.  As long as I don't take too much Utrogestan, I should be OK - just.  How many measure of gel do you take?

You may be interested in know that I was on the pill for 10 years (Eugynon 30) and didn't have migraines but I did have other problems namely, a constant nasal drip, depression, weight gain and growing hairs in unmentionable places!  Fortunately most of the symptoms went away when I came off the pill and the hairs fell out once I was in my mid-30's.  Did you ever have problems with the pill?  I think there could be a link there.

Thanks again for your advice, it is much appreciated.  I hope you are feeling better now. 

[Hurdity]

I'm just like that too Stellajane re sometimes being OK. I don't get a migraine every time I take it (Utro), and sometimes I get a migraine on the oestrogen phase - but I don't think it's anything to do with the oestrogen! On the utro I tend always to get bladder irritation and night waking, as well as lots of dreams, and a build up of fatigue and muzzy head every month - but I can live with that!

Mary G I have never used gel and I'm on Estradot 50 mcg which I understand is on average equivalent to 2 pumps of gel - but of course the two gel types are differnet cocnentrations. The sachet one is higher conc. So I'm pretty much on the  same regime as Stellajane.

If you are under the supervision of a clinic and meno specialist then fine to experiment especially as you are having your lining checked annually (which I'm not!). I wouldn't want to suggest that anyone tries to do their own thing ....

I only took the pill for a year and gave up on it due to horrible side effects -mainly tearfulness and moodiness as well as bloating - can't remember it was so long ago, in my early 20's! I've been nil-by-mouth in terms of hormones ever since!

Good luck with trying it this way Mary G and let us know how you get on.

Hurdity x

[dogdoc]

I had continuous migraine aura for almost 6 months at the start of all this. Sometimes would progress to headache sometimes not. A lot of pain behind my eyes and visual changes. Pain at the back of my head. 

There is a specialist in London .. If I was able I'd go see her. She's at the Bart's school of medicine and dentistry. She specializes in hormone related migraine. Might be worth a visit.
I asked her if she'd consult by phone... No go.  Her name is prof Anne mcgregor.

Tara

[Mary G]

Thanks so much everyone, your advice and input is greatly appreciated.  It is comforting to know that offers have had similar experiences and docdog, I will look up the migraine specialist.  Stellajane, that is exactly the same as me i.e. migraine during peri-menopause and now just after the progestin phase but as you say, the best I can hope for is a regime I can live with.  I will let you know how my trial goes!

[Mary G]

A quick update to my previous post, I'm afraid the six week cycle didn't work out and I had a period after four weeks without taking any progestin.  Without going into the gory details, it was the same volume wise but spread over a two week period instead of the usual four to five days but it was a very different experience because I felt completely normal throughout (like I did when I had periods before the menopause) with no breast pain, no cramps and no migraine so I forgot I had a period most of the time - if only they could always be like this!  The good news is I am starting to feel completely normal again because I think the effect of the progestin has finally worn off, it seems to have a very long half life.  I would be interested to hear from anyone else who has experienced something similar. 

I will try to reduce my oestrogen dose to two pumps of gel and see how long I can go this time around and hope I can make the six weeks.