MAV/migraine and menopause

[Ali1360]

I am convinced that my whole MAV experience has been brought about by my move through peri-menopause and into menopause…but I am at a loss on how to take this any further with the medical profession. The two GPs I see (one male, one female) are both very willing to see me and never make me feel as though I am wasting their time, but have very basic knowledge of migraine and even less of MAV. (I pressed them for a referral to the National Neurological Hospital in Queen Square London to the neurotology clinic in 2007 because they had given up trying to help my dizziness etc etc. It was the hospital who diagnosed MAV).

Since 2007 generally things have got better but still with weeks of not feeling good. My periods had stopped in November 08 and I assumed that I had finally (after 7 years - I’m 49)) reached the menopause. And then, about 3 weeks ago, I started to feel pre-menstrual with all the symptoms of an approaching period. Sure enough one came. I have now been referred to see a gynae because women shouldn’t bleed after a year. Sigh. More prodding and poking…Anyway, it can be no co-incidence that with the arrival of the period I have had a decline - severe decline - in my MAV control. Today I actually had the first visual “reverse zoom dolly” effect for two years and my whole right side feels off kilter, foggy and blocked. I have also had some hideous cold type virus and did think that this may have kicked off the new symptoms but am not convinced. And then I have had a headache that lasted two days - sitting in the back of my head/shoulders or right across the top of my head. Before that I had two days of a pain in the right eye socket…not migrainous exactly in that it didn’t thump…but would not shift. Again, this seems all very familiar to how my initial MAV symptoms started in 2007. Singing tinnitus too in both ears…mild but definitely there.

So my question is…how do I find some help with exploring the hormone thing and the migraine/MAV? Who do I speak to? I’ve exhausted the GPs - they just suggest blood tests which always show that I am “convincingly menopausal” . They have, of course, suggested (regularly) using HRT but I am not convinced that this is going to help. How do they know that I am not oestrogen dominant and would benefit from progesterone? The NHS does not prescribe progesterone as a rule so that would mean going private.

Anybody any similar experiences, thoughts or suggestions??

[Brenda]

Hi Ali

Not sure if any of this will help or not but I’ll share my experience. I’ve had MAV problems for a long time since my late teens but everything took a turn for then worse in my mid forties. The doctors told me it was probably to do with perimenopause and that things would settle down after menopause.

At 54, when I was still having regular periods, after a hysterectomy and oopherectomy I went into surgical menopause. Things most certainly did not improve, quite the opposite I would say. But they did get better somewhat after I started ERT, very reluctantly and out of desperation I might add, some two years after my operation.

I insisted on having my hormone levels checked before I started on the supplemental estrogen. Testing isn’t the be all and end all by any stretch of the imagination but it does help to give you an idea where you might have a hormonal shortfall or excess. And now I monitor my levels against that baseline. You can get levels tested on the NHS. Both estrogen and progesterone. You could also ask for a referral to an NHS menopause clinic.

I often would get a migraine in the days leading up to my period so I always suspected there was a hormone influence at work. And I still do at 58! Best of luck sorting it all out.

Brenda

[Joanmac]

Ali1360: I know exactly what your are talking about. I also started my MAV symptoms at menopause. I was seen by a ENT, a GP, a endocrinologist, a neurologist, an optomitrist, a bio-identical hormone specials and finally a oto-neurologist. The only thing off kilter with me was my hormone levels. One month my levels showed definite menopause, the next month not menopausal yet. So my hormones were yo-yoing all over the place and that was the only thing this could be related to and finally the oto-neurologist told me MAV related to hormonal fluctuations. Some Drs are reluctant do hormone blood test because your hormone levels fluctuate on a daily or even hourly basis. I had a partial hysterectomy at 46 but I do still have my ovaries, so I can tell when my MAV symptoms are worse, my ovaries are bothering and visa versa. I did go on estrogen patch for a few months, a few years ago. But being a breast cancer survivor my oncologist was very against it so I had to stop. It did not really seem to help me very much.
Find a menopause specialist and have them check your hormone levels and you have to decide for yourself if you are comfortable taking hormones. Either synthetic or bio-identical.
Good luck and keep in touch.

Joan

[maryalice]

I’m right there with you! Perimenopausal hormone rollercoaster started this whole thing for me - it’s my primary trigger, though my neurologist informed me that that many of the “sinus” headaches I thought I’d been having for most of my life were actually migraines. I have a high tolerance for pain, so I almost always went to work with those headaches - but the dizziness was another story!

I’ve felt like a detective, piecing all of this together - found out from youngest brother (who was still at home while I was away at college) that Mom went through dizzy spells at exactly the age my dizziness started: she sometimes had to crawl from her bedroom to get to the one bathroom on that floor. I was quite rebellious at that age, so my phone calls to home were infrequent & I never heard about all that - until recently (Mom is deceased) when I told bro I went to urgent care about the dizziness.

I did try unsuccessfully to have children - during one of my in vitro fertilization cycles about 15 years ago (after injections stimulated my ovaries big time), I had a brief episode of colorblindness that really scared me (no dizziness at least) but it ended quickly; went to eye doc who did lots of tests but found nothing wrong. I know now it was an aura, triggered by the hormone wallop.

Anyway, I’ve had tunnel vision episodes this year (no more colorblindness - the symptoms seem to morph!) and my dizzy spells did cause me to miss work & even, as I mentioned, go to an urgent care center (in the US that’s a step down from an emergency room, for non-life-threatening stuff). I tracked my periods (& long gaps in between) & PMS symptoms, & came to the conclusion that it was probably the fluctuations that cause me the most problems. I can’t speak for anyone else, but I think for me it will get better when menopause is finally finished (as it apparently was for my Mom - her dizzy spells seem to have ended, because it wasn’t an issue in later years).

I went on Topamax, which has worked very well for me - went from daily symptoms that could range from mild to severe, to occasional symptoms that stay mostly in the mild range, with maybe a mild-moderate episode or two. EXCEPT that very recently I went to GYN for help with a female issue that the usual over-the-counter things (to prevent discomfort during intimate moments) wasn’t helping with. Doc said I needed a tiny bit of local estrogen that’s hardly absorbed at all into the bloodstream.

But, as Scott put it in his recent post about what migraine is, “hardly at all” might be fine if my brain wasn’t like a “diva” or a “thoroughbred.” I started having daily dizziness again - fortunately almost always mild - and my tinnitus came back (that had gone away completely - like yours, it wasn’t loud, but it’s still unwelcome), as did the occasional fullness in one ear. I found some graphs online of hormone levels for women taking what I was on - it’s expensive to do frequent hormone levels, but these were done for research - and sure enough there were those fluctuations, and I just can’t handle that.

So plan B is what the “V Book” I read said, and even my neurologist recommended (for a different reason - he said it was good for migraineurs in general): husband will just have to put up with more frequent sex to keep things in working order.

Bottom line - one year is the “official” length of time they say you need to go without a period to be considered menopausal. But give or take a few weeks & I don’t think what happened to you is a huge surprise, though it’s good that they did poke & prod (you don’t want to have bleeding due to something bad get overlooked because they assumed it was “just” a period). I went 7 months once - it’s about that now, but I’m not counting on that being the end since Mom was older than I am now before she was finally done! And I’m a few years older than you. But we’re all different - adding hormones might help some, but for me it only made things worse. My plan: migraine preventive medication & more sex.

[Ali1360]

Some really good responses here…many thanks. I will ask my GP if there are any local menopause clinics I could be referred to. This is also the third Christmas when I have felt rubbish - which is odd - I’m not stressed out - well certainly not as I’m aware - but December seems to be a really rubbish month for me.
Will give maryalice’s suggestion a try - I am sure that will also go down well with my other half!!!

[Joanmac]

Ali: I have to say my symptoms are not as intense as they were 3 years ago when this first started. I guess I have just accepted this as normal for now and hoping in the next couple of years it will disappear. Two of my sisters (I have 5) have also experienced mentral migraines but not the dizziness … just headache pain. I don’t have pain just dizziness. Also 2 of my sisters have had their periods stop for 18 months and then have one big flood lasting weeks. So hormonal fluctuations are in my genes I guess. There are lots of supplements out there that claim to help the hormonal imbalance of menopause, but I am “chicken” and have not tried any of them. Being a breast cancer survivor I am very hesitant to put anything in my body. At the beginning of all of this 3 years ago my GP wanted me to try Lexapro. One dose made me extremely nauseous and unfocused, it was not for me. I have not tried anything else since then.
Joan

[marie_johanne]

I really think there’s a hormone factor for me, as well. Mine began a couple of months after the birth of my third son. And though tests still show that I’m still cycling (I’ve had my uterus parbroiled to stop incessant bleeding about 5 years back), I’m thinking that perimenopause is enough to rattle my vertiginous cage!

[Onandon03]

Never come across this particular thread before. Very interesting and it’s unfortunate how eleven years on nothing much more has come to light by way of research. Retrospectively I attribute my MAV to hormones although the migraine specialist neuro I saw categorically denied it could be saying I was totally the wrong way around (presumably she meant by timing) for that to be the case. Seemed more than coincidence to me I had sick headaches up to and around menarche then nothing at all migraine-like until five months after my last ever period decades later. I’m as sure as can be it must have been hormones and not the fact I stopped chocolate for ever at about thirteen.

The unfortunate thing with hormones is they tend to go on fluctuating for years, decades even, and I suspect the MAV will continue likewise. I was lucky in that I never experienced Catamenial migraines. Doesn’t make me any less sure of a link somewhere there that must surely be the main MAV driver. Now heavily medicated and under quite good control I can see such a strong link between increased symptoms and hot flushes. Obvious.

[Diphthong]

I am having migraines too but not so often. Is it okay if i just take pain reliever?

[jess38]

I’m not menopausal yet, but there is a definite link between hormonal shifts and flare up of MAV for me.

[CB2006]

Same for me! I feel as if I may be perimenopausal although all the doctors I’ve seen disagree, too young etc.