Prof MacGregor

[KatherineM_PBC]

Has anyone seen Professor Anne MacGregor in her London clinic in relation to women's health and how migraines are affected by our hormones? If so, was she able to help you?

[Moon_Struck]

Hi KM

I haven't seen Professor MacGregor although I would very much like to.

My migraines returned with a vengeance when my periods stopped.

Useful information on these links:

thebms.org.uk/2017/11/migra...

womens-health-concern.org/h...

I also remember reading somewhere that she recommends Frovatriptan.

Are you planning to book an appointment?

[KatherineM_PBC in reply to Moon_Struck]

Hi yes I am only 30 mins from London so have made an appt to see her on 13th June. Thanks you for the attachments, I will read them and also look up Frovatriptan, although I've had a bad experience with Sumpatriptan and Rizatriptan (nasal spray).

As I have a Mirena coil I don't have a cycle, but so many of my friends who have had migraines with their menopause they are urging me to get this checked again. I had previously seen a Gynae consultant who prescribed oestrogen gel, but the Neuro consultant said I shouldn't use it as I was more susceptible to stroke as I had migraine with aura - I have since read that it is not a problem.

Prof MacGregor will hopefully be able to tie up a few ends for me.

[LesleyBuck67]

Hi Katherine, I saw Prof MacGregor last June and I am so pleased that I did. I have suffered with hormonal migraines for 15 years and had tried everything. When I went to see her I had been put on topiramate by my GP which had horrendous side effects leaving me unable to work. Prof Macgregor was brilliant and immediately instructed my GP to stop the Topiramate and replace it with an individual medication plan for me. My migraines have decreased dramatically and the ones I do get are less severe. A year on and Prof MacGregor is still in touch constantly and amends my medication as needed by speaking to my GP. Visiting her was the best thing I have ever done. I hope she helps you as much as she helped me. Good luck.

[Alexa49 in reply to LesleyBuck67]

What medications did Prof MacGregor prescribe for you that helped to stop the migraines?

[LesleyBuck67 in reply to Alexa49]

She put me on a high dose of Desogestrel (progestogen) and after a couple of months added oestrogen patches which didn’t work so she changed them to oestrogen gel (I cant take oestrogen orally due to the history of cancer in my family). I had years of various medications from my GP all of which had awful side effects and didn’t help my migraines at all but her medications have no side effects and really helped my migraines. After your appointment with her she continues to monitor your progress and is always there to help and amend the medication if needed. The plan she puts in place is specific to you unlike the GPs . After years of being told by my GP that there was nothing they could do and I would “just have to live with it” Prof MacGregor was like a breath of air who gave me my life back.

[Kathybishop in reply to LesleyBuck67]

I often wondered if progesterone would help me as its suppose to be the calming hormone . When I have menopausal migraines it’s like having PMT and I think cortisol takes over the body causing tight muscles , anxiety and migraines. ( I could be wrong). Whereas progesterone calms. From the day I started my periods I got headaches. When I was pregnant they disappeared . Unfortunately menopause made my headaches/ migraines 10 times worse and it’s been hell for 6 years. I wish I had heard of Prof McGregor at the start of my problems because as you say GPS and neurologists just ply us with damaging drugs! Really hoping mine are easing off as I come out of the menopause.

[KatherineM_PBC in reply to LesleyBuck67]

Thankyou for that post, I'm feeling really positive. For you, was it 100% conclusive your migraines were hormonal, ie, just relevant to that time of the month or were you having chronic spells too? I'm thinking, how can migraines can be related to menopause if they happen daily?

I was never even a 'headachy' person until 2 years ago when the migraines started, episodic at first, then chronic. I have Mirena coil and have been told they cannot tell if I'm in menopause because I display no other symptoms like hot sweats, my constant irritability is about not having much life anymore!!!

[LesleyBuck67 in reply to KatherineM_PBC]

I started with hormonal migraines 15 years ago when I was approaching 40. For one week before my period every month I would be in bed with a migraine. I didn’t realise that it was because it was the perimenopause (which I had never heard of until Prof MacGregor told me). When I reached 50 the migraines became almost daily as the menopause started. This is when I went to see Prof MacGregor and she decided that the best option was to shut down my overies which would stop the migraines. She said that all the GPs and consultants I had seen over the years were just treating my migraines instead of addressing my hormones which were the cause of the migraine.

[KatherineM_PBC in reply to LesleyBuck67]

😩😩 that’s how I feel! All the Consultants I have seen, and that’s many NHS and private have just wanted to give me triptans and preventatives. A Gynae Consultant recommended oestrogen gel last year but she was very “airy fairy” in her diagnosis, saying it “might be” hormones and I wasn’t confident in her treatment- when the Neuro Consultant told me I shouldn’t use the gel it stayed in the drawer☹️ Perhaps if I’d tried it last year I’d know?! I’m looking forward to seeing Prof MacGregor more now, she seems very thorough.

[LesleyBuck67 in reply to KatherineM_PBC]

She has transformed my life and it’s great knowing she is always there whereas before I felt very alone as the doctors couldn’t help and I felt I had nowhere to turn. My GP says she has benefitted so much from having Prof MacGregor involved as by treating me they have learnt so much about hormonal migraine.

[Kathybishop in reply to LesleyBuck67]

Did shutting down your ovaries help? I agree it’s time professionals stopped just treating the symptoms and looked for the cause!!!

[LesleyBuck67 in reply to Kathybishop]

I’m not migraine free but I don’t have them daily either so there is an improvement (3/4 days a month now). Anne is still trying to get my oestrogen levels up so we aren’t there yet but I’m hopeful.

[teg1975]

Hi I saw Anne in London a few years ago. I had a hysterectomy keeping my ovaries at 35 then I had them both removed a year later. As a result my migraines increased from monthly to weekly. Speaking with Anne to sent me back to my GO to get my oestrogen levels checked. When I did she said they were too low & told my GP to put my in hrt. Unfortunately trying various hrts did not work & I am left with having them weekly or sometimes every few days. Anne told me that they would get worse before they get better, however I am 4 years down the line and no improvement.

I’ve contacted Anne again about it but she has said I would need to pay for another appointment to see her, which given the lack of progress I’ve made I’m not willing to do. I am under a local neurologist & trying every medication there is with no luck. I’m now waiting to try aimovig.

Anne did also try to put me on progesterone which my GP called me to say it was £35 a tube & I’d need a least a tube a week so I couldn’t have it. Hopefully you’ll have more success than I did. Good luck!

[KatherineM_PBC in reply to teg1975]

Sorry to hear your story, seems Anne can’t help everyone? If you don’t have reproductive organs you might wonder how the migraines can be related to hormones, the body’s workings are a mystery to me! Very best wishes with you finding what helps you. X

[LesleyBuck67 in reply to teg1975]

I’m sorry that you are no further forward with your treatment I know how frustrating it can be. Thankfully my GP has never questioned Prof MacGregors advice and always arranged the requested blood tests and medication. I really hope that you can find a solution.

[KatherineM_PBC in reply to LesleyBuck67]

I have heard this is a problem with a lot of GPs, in that they have budgets, and if a private GP/Consultant prescribes, they may feel they cannot write a prescription on the NHS. What I would say though is try and speak to your GP again (teg1975) as you have saved the NHS time on making a diagnosis, but assuming you are a UK tax-payer will have certainly contributed thousands in N.I over the years and should be entitled to an NHS prescription.

[Kathybishop in reply to teg1975]

Yes and there lies the problem-the one with the answers want money! And lots of it!!! I am better after looking at diet and only taking drugs if I really can’t stand it any longer. Drugs are not the answer. I take paracetamol or anadin extra about twice a month now. I try really hard not to take sumatriptan and naproxen but I did need them the other day and they worked a treat. That’s the first time in about 4 months so I’m feeling pleased with myself

[KatherineM_PBC in reply to Kathybishop]

This afternoon a headache started and I opted for 3 x soluble aspirin. It certainly has kept the pain at maybe 4/10 but I still feel lightheaded. I only take Naproxen on an empty stomach and will still take paracetamol every 4 hours too. Which do you find works best for you?

[Kathybishop in reply to KatherineM_PBC]

The best concoction for me is to take a sumatriptan with a amiprazole ( to protect the stomach lining) wait 30 minutes and then take a naproxen. That gives the amiprazole time to work. Naproxen can excoriate the stomach lining and cause pain and ulcers so be careful taking it on an empty stomach. After one hour those three drugs usually kill the pain dead! However, I don’t like taking them . So if I can manage I will try to only take paracetamol or aspirin Good luck

[Onthemove1971 in reply to teg1975]

Just curious if you have tried Feverfew? I am 1 step from Botox and am getting great help from Feverfew 3x daily.

Good luck, sorry such a struggle.

[KatherineM_PBC in reply to Onthemove1971]

Hi, thanks for recommending Feverfew. I currently take a migraine supplement called Dolovent, although I have to wonder how much it is helping, if at all! My reservation with Feverfew is being similar to NSAIDs they say it is best best not to take both at the same time, but aspirin and ibuprofen are my go-to pain relief meds. Do you also take painkillers? Perhaps on the Feverfew I would not need so many painkillers, but it suggests it might take months for the Feverfew to become effective?

[Onthemove1971 in reply to KatherineM_PBC]

I have had relief quickly no I don't take pain killers. I use Imitrix injections and it usually stops the pain. I did have a Noco RX and our car was broken into and it was stolen and it is to much of a hassle.. (I dont want to look like a drug addict) so I didn't get it refilled.

The injections really stop all the pain.

I cant take aspirin or ibuprofen.

[Moon_Struck]

Hi

Have you had your estrogen levels checked? Maybe c.2 years ago when the migs started your natural levels dropped.

It could be that the Mirena is stripping out your own natural (declining?) production of estrogen. In my case, the loss of hormone profile - but mainly estrogen - when my periods stopped, the protective threshold decreased allowing mig to take hold.

As we know, low or non-existent estrogen often can be the reason for mig.

We're all so different - I found the (lower dose) patch better than gel and was told for some women, the gel can give fluctuations, the patch is more consistent. Patches can be cut in half/quarters.

I've had mig with aura but only occasionally not consistently - I get a whole range, however HRT was still offered - so I'm wondering why the Neuro Cons didn't recommend gel. I've often had contradictory info though from various Consultants, it's minefield.

I can't take any triptans now as they make palpitations worse, seem to constrict the heart blood vessels, although others take them without effect.

Some women are hyper-sensitive to micro changes / fluctuations of hormones.

teg1975 - sorry to read your story, have you tried a small dose of estrogen, say half (or even quarter) of lowest dose 25 patch. Over the years I've tried a whole range of estrogen, high to low. I'm finding some relief with using just Vagifem estrogen pessaries (for vaginal atrophy) which is a miniscule amount of estrogen. Which HRT did you try, was it recommended by AM or what your GP prescribed? it may be worth experimenting further.

Please would you let us know how you get on at your appointment, KM, hope you find a way forward - there's so much trial and error in all this.

Migraine is often discussed on menopausematters.co.uk - worth looking at if you don't already belong to that forum.

[KatherineM_PBC in reply to Moon_Struck]

You asked if I've ever had my hormones checked? I was told by my GP that is was impossible to tell from 1 test, meaning, if I was tested in Jan and June etc, they could see if there was a drop in levels, otherwise 1 test is not conclusive. I accepted that when the Gynae consultant said she wouldn't test either, but then she did only come to the conclusion that I "might' be in menopause, and I "might" benefit form oestrogen gel.....you can see why I never thought much of her advice!

[Pippwin]

She was my doctor at the City of London Migraine clinic for many years before she left. She was immensely helpful. She has huge knowledge of migraine. I would love to go back to her but I think she is very expensive now she is working privately. If you are going to see her do let us know how you get on. Many thanks and all the best.

Pippa

[KatherineM_PBC]

My first private consultation will be £320. I’m fortunate that I can afford that and anticipate extra charges with tests and possibly prescription s. I’ve “only” had migraine for 2 years compared to some of you, the endless things I have wasted my money on that just didn’t work😩, if Anne can find anything to help me it will be so worth it. Fingers crossed 🤞. I will post again after my visit and share what she suggests incase it can help anyone else. X

[LesleyBuck67 in reply to KatherineM_PBC]

I also paid £320 fee to see her last June and she is still treating me at no extra cost which is remarkable. She arranges all blood tests and prescriptions through your GP so it doesn’t cost you extra. She writes to my GP with instructions but never charges me for her time.

[KatherineM_PBC in reply to LesleyBuck67]

She sounds like a one off and I'm getting more pleased by the day that I have an appt in the diary!

[Moon_Struck]

Hi KM

How are you - and when is your much anticipated appointment with Prof AM, look forward to hearing how it went. Have you heard of the Jaydess, it's lower strength than the Mirena, could be a possibility for a conti regime of hrt if you added in a low dose patch / gel.

[KatherineM_PBC]

Hi all. I went to see Prof MacGregor yesterday, I'm afraid to say I left HUGELY disappointed. She is a lovely lady and obviously knows her stuff that's not the issue, however she does not have any answers for me Having explained my full medical history, and telling her what has happened over the last 2 years, she listened intently. Although I have headaches, fatigue, depression, anxiety and a whole list of things that match menopause symptoms, they could also be caused by by other issues, and Prof says that the main indicators for menopause are hot flushes and night sweats and I don't get those. She therefore says I am not near menopause, and infact thinks that as I approach menopause and my oestrogen levels drop, my headaches will get WORSE. That was hard to hear, but then she says I MAY benefit from oestrogen gel at that time. She approved the Mirena coil (that I have), that's not a problem.

So I am really deflated. My diet is good and I take supplements plus a migraine preventative, I just don't know what to do next

[v-e-c-a]

Sorry to hear that Katherine.

[Moon_Struck]

Hi KM - sorry to hear that the appt was disappointing, I'd be gutted!

On menopausematters.co.uk there are women who describe your symptoms - without hot flushes and night sweats and they *are* menopausal - so there is still the possibility you are menopausal - and maybe the reason why you're suffering the debilitating migraines due to the shift in hormone levels.

This thread here:

menopausematters.co.uk/foru...

A member says:

"Hi, am 58..not sure how many years post menopausal as had mirena coils x 3 over a period of 15 years for menorrhagia...only when coil was taken out 4 years ago were the hot flushes 30+ a day and night sweats up to 12 a night unbearable. Oestrogel 1-2 pumps a day and alternate days of vaginal urogestran has made my life brilliant in every dept.!! "

*********

Would you consider having the Mirena removed to see if it eases the migraine - and to see where your body is at re: meno status, blood tests. It could be that you've reached a stage where your biochemistry is not coping so well with the level of progesterone in the Mirena. Maybe the lower dose Jaydess could be considered.

Can't help thinking there's a connection with the Mirena and migraine.

It's trial and error all the way, I've found - trying to find a solution.

Recently saw another Neurologist who is referring me on to a professor at King's College and for a CT scan - in the meantime she has prescribed Migramax - something I haven't used before, Aspirin and anti-nausea med. Aspirin is my painkiller of choice for mig, sometimes work.s

I hope you find a way forward, K.

[KatherineM_PBC]

Hi Moonstuck. I had female hormone FSH tested months ago and my level was normal (7). Prof MacGregor said she would write to my Doc to get her to run the blood test again, but she considers hot flushes and night sweats to be the main symptoms for someone going through menopause, and these would happen whether I had the coil or not. This is my 3rd Mirena coil in 12 years and as the headaches only started 2 years ago it's hard to see a link, my last was replaced in January with no worsening of symptoms.

Yes I'm gutted as I was really pinning my hopes on her saying "of course it's the menopause, have some oestrogen gel" haha, but I will keep on looking for answers.

Thank you all for your concern

[Hidden]

Hi,

Sorry to hear you are struggling and didn’t get the answers from your visit.

Just wanted to let you know about my experience as I think it is fairly unusual and may help.

I’ve had endometriosis and migraines since my teens (endo undiagnosed for 18 years though!) and am now 41. Have tried various hormone treatments for the endo over the last five years and found I am really sensitive to progesterone, it gives me crippling migraines. I am currently trialling a medical menopause to see if I will have a hysterectomy and have had all sorts of issues with the HRT - the oestrogen gel sorts the hot sweats/sleeplessness etc, but you can’t have that on its own (risk of womb cancer) in this endo treatment, but think it’s different if it’s a natural menopause. I can’t take progesterone daily so every three months have to have two weeks of it, which I am currently in. Daily headaches and migraines have kicked in but I know it’s only for two weeks so can live with it. Have tried the mini pill, mirena coil, etc previously all with the same effects!

Sorry for the long post but know this is fairly unusual as my consultant is hugely experienced in endo (wrote the NICE guidance) and hadn’t come across this really before. Just wondered if it maybe worth speaking to your doctor about this. Can you have mirena removed and see how you get on?

Good luck

[KatherineM_PBC in reply to Hidden]

Hi thank you for your reply. I have had a Mirena coil for 13 years (replaced every 6). I only started with the migraine 2 years ago. It does seem hard to make a link. I don't want to have the coil removed and go back to periods, I have fibroids, which don't bother me while the coil is in, but if it were removed, periods would be heavy and painful and as there's no reason to think the headaches are because of the coil I'd rather leave be. It's all so very frustrating!

[Chleo11 in reply to KatherineM_PBC]

Hi Katherine. Just wanted to comment on the concept that hot flushes and night sweat means menopause. I am 53 myself and yes, I do get all of those. However, my mum told me that she never experienced them (or a bit, she said, a few times she did feel very warm for no reasons for a few seconds). My aunt (her non-identical twin sister) did have them very badly. My sister never got them and my cousin did. There you go! Busting another myth in relation to 'daughter like mother'.

[KatherineM_PBC in reply to Chleo11]

My mum tells me she wasn’t aware of the menopause which must mean she had no symptoms like hot flushes or night sweats either. Prof M certainly inferred I would know I was in menopause not just with headaches but the other symptoms too as if they go hand in hand. As yet I have not been able to get an appt for blood test to see if my hormone levels are any different to a year ago so I remain uncertain as to whether there is any link?!