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[Tulip15]

Hi everyone, my first post and I'm feeling a little lost. Does anyone have any suggestions where I can go with this. I think my GP, while helpful, is focusing on the wrong thing and I'm struggling a bit with where to go next.

I am 45 and still have periods.

I started to have hot flushes, anxiety, gynae issues (itching/dryness/zero libido) but worst horrific headaches the week before my period. Only this week of the month, no other times. I started the sequi patches and the headaches increased to every day. After discussing with my GP I switched to oestrogen gel and progesterone tablets. Unfortunately the headaches have continued.

On the advice of my GP I came off HRT and the headaches have got worse. They are now the week before my period, AND the week of ovulation. My thoughts are that this is due to decreased oestrogen but my GP is fixed that it is the progesterone and only wants to get me to have a mirena (which I don't feel is an option I am prepared to consider at the moment).

I am wondering whether to go back to talk about trying vaginal oestrogen, but is there any other option I should consider. I feel so awful all the time, like I'm losing my mind.

[joziel]

Migraines can be caused by hormonal fluctuations, either sudden drops (like before your period) in estrogen or sudden peaks (like at ovulation).

The best solution is to create a state of steady hormones if you can. There are different ways to go about this. One is to take quite a high dose of HRT to override your own fluctuations - so that when you drop out, you don't drop to nothing. You don't say what dose of estrogen you were on, but I would try at least 100 if I were you. (It depends also on how well you absorb it.) You'd need to increase to that gradually of course. Sequi only has 50mcg of estrogen in it, which is nothing really. With the gel, the equivalent is 4 pumps of gel...

The other idea is to add in something which will suppress your own cycle, like desogestrel POP (which is licensed to use for contraception whilst also being on HRT) which should quieten your own ovaries down. You would need to take HRT as well to ensure you have adequate estrogen.

Finally do ask your GP for some sumatryptan or buy it over the counter and try it. These are not headaches, they are migraines...

I get hormonal migraines and they are awful. I started to get them around age 38 and my male GP at the time had zero inkling they were related to anything hormonal. But since increasing my estrogen right up (now around 850pmol) I very rarely get them.

[Tulip15]

Thank you joziel, that is really helpful. I tried to explain to my GP about the fluctuations in oestrogen at certain times of my cycle causing my headaches but she wouldn't hear of anything other than it being the progesterone, which was frustrating. This is the same GP who told me a few years ago that I couldn't be perimonopausal because I was still having periods!

I hadn't clicked that evorel sequi was 50mcg oestrogen. I was on 2 pumps of the gel after that.

I was reluctant to call my headaches migraines, as I don't have aura but they are utterly debilitating. I feel sick and quite spaced out. I work in a particular office one day a week and get headaches every time I am there, I suspect it may be environmental (air con/lighting or something). I end up having to go to bed when I get home as I feel so ill and the only thing that helps is lying in a dark room. Aspirin helps so far, I did get some rivatriptan from an online pharmacy but have managed not to need them so far.

Thank you so much.

[Sophya]

Vaginal estrogen is mostly for local symptoms and won’t help much with systemic issues like headaches. You might want to look into continuous combined HRT (no withdrawal bleed) or even a low-dose contraceptive pill to flatten out those hormone peaks and drops. A referral to a menopause specialist (rather than just your GP) might also be really helpful, they’re often more familiar with the nuanced cases like yours.

[Tulip15]

Thank you Sophya. I've been looking at private appointments but hard to choose a clinic. My GP are trying to help but it is so hard to get an appointment.

Would I be able to take continuous hrt while I am still having periods?

[Mary G]

Tulip15, the headaches you describe are hormonal migraines.  Not everyone has migraine with aura but you mentioned nausea and needing to lie down in a dark room which most definitely points to MwA which I believe is the most common type of migraine.

I started having silent migraines (aura without headache) aged 43 and they were directly linked to the menopause and low oestrogen levels. This type of migraine doesn't improve post menopause in fact they get worse, particularly with high blood pressure, so I will be on HRT for life.  I have to be careful not to overdose on progesterone because it knocks out the positive effects of the oestrogen and triggers migraine auras. 

From what you have said your migraines are caused by low oestrogen levels meaning it's vital for you to keep your levels up.  I'm afraid a 50mcg patch is about as much good as a chocolate teapot because you are never going to achieve the high oestrogen levels you need with that dose.  You really need to go to three or four pumps of Oestrogel and try to split the dose by 12 hours.

If you can achieve a high level of oestrogen, you should be able to tolerate a progesterone coil but my advice would be to go for one of the lower dose coils like the Kyleena or the Jaydess rather than the Mirena because that way you should have fewer sides effects.

Frankly, your doctor should know all of this but I would seek help from someone who specialises in the menopause and hormonal migraines.

I hope that helps.

[joziel]

I don't get an aura either Tulip and I've been diagnosed with them as migraines. (Having never had migraines before the age of 38.) The main factors were 1) nausea accompanying them (never had that with normal headaches before) and 2) they don't respond to regular over the counter pain meds like aspirin, ibuprofen etc which people take for headaches.

I have a Cefaly device which is like a TENs machine for migraines. You put it on your forehead, between your eyes and it begins very gently and gets pretty intense. It numbs your entire skull. I find it really does stop the pain whilst it is on, but when removed after finishing the cycle (which lasts about 1hr) the pain does come back. However, it really helps me get to sleep. My migraines only go after I've been to sleep, but the problem is that the pain makes it really hard to go to sleep sometimes - so I get trapped in this awful place where I can't sleep, and the only thing which will get rid of the pain, is sleep....

That's where the Cefaly helps because it gets rid of the pain long enough for me to fall asleep. I often fall asleep with it on.

But as I said, I need it less and less now I've got my estrogen right up. You might find that even 4 pumps of gel or 100 patch isn't enough estrogen (because many of us don't absorb very well). In which case, do go private to a menopause clinic like Newson Health to get approved for the extra. I am now on 6 pumps of gel at night, PLUS 300mcg Estradot patches. That is 4.5x the max licensed dose of estrogen, but my serum levels are around 850pmol. Which is very decent but not blindingly high... because I don't absorb very well. I go to the Newson Clinic.

[Tulip15]

Tulip15, the headaches you describe are hormonal migraines.  Not everyone has migraine with aura but you mentioned nausea and needing to lie down in a dark room which most definitely points to MwA which I believe is the most common type of migraine.

I started having silent migraines (aura without headache) aged 43 and they were directly linked to the menopause and low oestrogen levels. This type of migraine doesn't improve post menopause in fact they get worse, particularly with high blood pressure, so I will be on HRT for life.  I have to be careful not to overdose on progesterone because it knocks out the positive effects of the oestrogen and triggers migraine auras. 

From what you have said your migraines are caused by low oestrogen levels meaning it's vital for you to keep your levels up.  I'm afraid a 50mcg patch is about as much good as a chocolate teapot because you are never going to achieve the high oestrogen levels you need with that dose.  You really need to go to three or four pumps of Oestrogel and try to split the dose by 12 hours.

If you can achieve a high level of oestrogen, you should be able to tolerate a progesterone coil but my advice would be to go for one of the lower dose coils like the Kyleena or the Jaydess rather than the Mirena because that way you should have fewer sides effects.

Frankly, your doctor should know all of this but I would seek help from someone who specialises in the menopause and hormonal migraines.

I hope that helps.

Thank you Mary, that does help, a lot.  I am not one to make a fuss and am never sure of the difference between headaches and migraines, but these are so debilitating.  I am trying to avoid a coil if I can.  I suffer from very low blood pressure so not sure if that makes a difference with HRT too.

I am not sure my doctor is that great, however she is so helpful and I do get where she is coming from - try one thing at a time, see how you get on sort of thing, but that doesn't really help when I am having to miss out on family things because I need to lie down.  I'm not in a rush but this constant try this and see how you get on message isn't helping my anxiety and mental state - I feel like I am losing my mind.

[Tulip15]

I don't get an aura either Tulip and I've been diagnosed with them as migraines. (Having never had migraines before the age of 38.) The main factors were 1) nausea accompanying them (never had that with normal headaches before) and 2) they don't respond to regular over the counter pain meds like aspirin, ibuprofen etc which people take for headaches.

I have a Cefaly device which is like a TENs machine for migraines. You put it on your forehead, between your eyes and it begins very gently and gets pretty intense. It numbs your entire skull. I find it really does stop the pain whilst it is on, but when removed after finishing the cycle (which lasts about 1hr) the pain does come back. However, it really helps me get to sleep. My migraines only go after I've been to sleep, but the problem is that the pain makes it really hard to go to sleep sometimes - so I get trapped in this awful place where I can't sleep, and the only thing which will get rid of the pain, is sleep....

That's where the Cefaly helps because it gets rid of the pain long enough for me to fall asleep. I often fall asleep with it on.

But as I said, I need it less and less now I've got my estrogen right up. You might find that even 4 pumps of gel or 100 patch isn't enough estrogen (because many of us don't absorb very well). In which case, do go private to a menopause clinic like Newson Health to get approved for the extra. I am now on 6 pumps of gel at night, PLUS 300mcg Estradot patches. That is 4.5x the max licensed dose of estrogen, but my serum levels are around 850pmol. Which is very decent but not blindingly high... because I don't absorb very well. I go to the Newson Clinic.

This is exactly it Josiel, thank you for validating my experience.  I feel quite emotional - thank you to all of you for getting it.

Paracetamol and even migraine nurofen do nothing.  Aspirin works sometimes but is hit and miss.   I have just started acupuncture in the hope of something/anything helping!  I will have a look at the Cefaly - very interesting and could get me through at work.

I have been looking at the newson clinic as it is probably my nearest but am not sure how it works - please could you tell me?  I think I'm worried I'd be back at square one, having to have more blood tests that I've already had three times.  Try this and see how you get on like my current GP is, and while she is helpful and supportive it does feel a bit like suck it and see sometimes, and a bit like she is reading from a fact sheet.  I'm not sure if it would be out of the frying pan into the fire.  Like if I tried something, do I have to have another private appointment to change it, or is there more flexibility?

[joziel]

You can be a Newson clinic patient online because they offer online appointments - that's how I see them. I see Dr Jane Robertson there and would really recommend her. Your meds will arrive in the post a couple of days later, via CloudRX pharmacy.

They will accept any bloods that have been done including by your GP (as long as they are within the last 6 months I think). You can use NHS bloods or Medichecks.com bloods (as long as you get the venous test) and I will report back on this, but I think they are going to accept the Randox Tasso device (which takes a home blood draw from your arm, where you usually get injections). The only tests they won't work with, are finger prick tests - because they are not reliable.

They will write a letter to your GP afterwards and tell the GP what they have prescribed and ask the GP to continue that prescription on the NHS - so you don't have to pay for meds. The GP is not obliged to follow that advice, but I'd think if you have a helpful and cooperative GP, they hopefully will. Then you will get the meds for free. That's what I do, and my GP provides it all even though my estrogen is high dose. (I do think she is a bit suspicious about whether I need that dose but she has cooperated so far!)

Then you need an annual appointment with Newson to stay registered with them - and they will update your GP each year. Give them a call and ask any questions you have, they are v helpful. The annual appointment is £240 (I think).

In terms of - if you try something and you don't like it etc... Newson will often be more flexible in terms of what they prescribe, to allow you to experiment more than your GP would. For eg when I first started, they told me to begin on 25 patches for a few weeks, then increase to 50, for a few weeks and if I still had symptoms to increase to 75. So they equip you with more than just one dose.

But if you do need to completely change product then you have to have a 10 min phone consult to get that approved which is £100. I had to do that with Sandrena - I asked to switch to that because I was on 12 pumps of Oestrogel(!) and not absorbing more than 6 pumps (levels had not gone up). I switched to Sandrena at my annual review but then I couldnt' absorb the Sandrena at all and it was awful, I had a return of everything really quickly. So I had to pay for another phone consult and they put me onto a combo of gel and Estradot patches which is now working well. But basically you will get what you want, fast.

I think it is worth paying to find out what works for you, and hopefully with your NHS GP then continuing it with free meds on the NHS. I also like having a fallback should the NHS be out of stock of something. They have been out of stock of Oestrogel, utrogestan and now Estradot patches - and every time, Newson and CloudRX have come through for me and I've been able to get what I need that way. It shouldn't be like this, but it is...

[Tulip15]

Migraines can be caused by hormonal fluctuations, either sudden drops (like before your period) in estrogen or sudden peaks (like at ovulation).

The best solution is to create a state of steady hormones if you can. There are different ways to go about this. One is to take quite a high dose of HRT to override your own fluctuations - so that when you drop out, you don't drop to nothing. You don't say what dose of estrogen you were on, but I would try at least 100 if I were you. (It depends also on how well you absorb it.) You'd need to increase to that gradually of course. Sequi only has 50mcg of estrogen in it, which is nothing really. With the gel, the equivalent is 4 pumps of gel...

The other idea is to add in something which will suppress your own cycle, like desogestrel POP (which is licensed to use for contraception whilst also being on HRT) which should quieten your own ovaries down. You would need to take HRT as well to ensure you have adequate estrogen.

Finally do ask your GP for some sumatryptan or buy it over the counter and try it. These are not headaches, they are migraines...

I get hormonal migraines and they are awful. I started to get them around age 38 and my male GP at the time had zero inkling they were related to anything hormonal. But since increasing my estrogen right up (now around 850pmol) I very rarely get them.

just thinking about where to go from here?

Do you think I could increase the dosage? I was taking 2 pumps which was giving me headaches but I think this is down to fluctuations rather than a low oestrogen level. My level was 160 at my last test but I'm not sure what that means in practice.

I spoke to my GP who has given me vaginal oestrogen but is reluctant to do anything else for a while until I've tried that. I feel so awful and I'm so desperate to feel better, I still have two bottles of gel.

[joziel]

I'm really sorry you are receiving such awful care from the National Unhealth Service.

An estrogen level of 160pmol is extremely low. It is not even high enough for bone protection (which begins around 270pmol). Until you are taking optimal HRT, you can't really judge whether it 'works' or 'helps' or whatever. Because you can bathe in estrogen, but if you're not absorbing it, you're not really 'taking' it, are you?

You need to get your estrogen levels into therapeutic levels, which are around 400pmol + for most women. Many women need around 450-650pmol (so say two of the Newson doctors I've seen, in my consultations) to resolve symptoms. With a level of 160, you are basically not on any estrogen at the moment. Regardless of how much you are sticking, rubbing or eating....

If your GP knows your estrogen levels are 160 and is only offering you vaginal estrogen, then you are being failed by the NHS. Like so many women....

GPs received zero education on menopause in their training. Keep that in mind.

So you can either go private to the Newson Clinic or similar and get onto the meds which help you and then with a letter from them, get your GP to continue the prescription - or you can leave the GP you are with and try to find another with better understanding of menopause or HRT. Staying with the GP you are with now, will mean that you stay sick and suffering....

You need to increase to at least 4 pumps of gel, gradually, and then test to see if you are getting up to over 400pmol. If you are not, you will need to see a private menopause clinic anyway, because almost no NHS GP will prescribe over the licensed dose.

[Tulip15]

I'm really sorry you are receiving such awful care from the National Unhealth Service.

An estrogen level of 160pmol is extremely low. It is not even high enough for bone protection (which begins around 270pmol). Until you are taking optimal HRT, you can't really judge whether it 'works' or 'helps' or whatever. Because you can bathe in estrogen, but if you're not absorbing it, you're not really 'taking' it, are you?

You need to get your estrogen levels into therapeutic levels, which are around 400pmol + for most women. Many women need around 450-650pmol (so say two of the Newson doctors I've seen, in my consultations) to resolve symptoms. With a level of 160, you are basically not on any estrogen at the moment. Regardless of how much you are sticking, rubbing or eating....

If your GP knows your estrogen levels are 160 and is only offering you vaginal estrogen, then you are being failed by the NHS. Like so many women....

GPs received zero education on menopause in their training. Keep that in mind.

So you can either go private to the Newson Clinic or similar and get onto the meds which help you and then with a letter from them, get your GP to continue the prescription - or you can leave the GP you are with and try to find another with better understanding of menopause or HRT. Staying with the GP you are with now, will mean that you stay sick and suffering....

You need to increase to at least 4 pumps of gel, gradually, and then test to see if you are getting up to over 400pmol. If you are not, you will need to see a private menopause clinic anyway, because almost no NHS GP will prescribe over the licensed dose.

thank you Joziel. I am really struggling at the moment.

My GP is trying so hard to be helpful, but is obviously from the give it a month and see how you feel approach which I don't think my mental health can bear anymore.

I'm going to have to suck it up and book an appointment at the newson clinic.