The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

Hormone related MAV

Hi all,

For any ladies who, like me, have been hoping to get help with hormone related MAV through treating hormone imbalance instead of taking migraine preventatives, I just want to share the discussion I have had with my doc today…

First, a quick summary of why I came here at all! In November last year I had my first ever ‘attack’ of vertigo. One month later, same again. Then again in Jan and Feb, a little milder each month. March passed almost unnoticed. Then, the night before last BAM! same as November, incapacitated all day yesterday, bad still today. So, I have just been to see my GP.

I explained that this has been happening in a monthly cycle, that along with it come some other PMS type smptoms. I told him that I used to get monthly migraines - either just aura, or headache or both. I thought I was over them, but now I’m getting this. Initially he didn’t think it was actual vertigo, but a quick check where he held my head still and had me follow his finger with my eyes and he said oh, yes… it’s vertigo. So, he agrees that it’s hormone related, and migrainous. But my attempts to get help with hormone balancing were unsuccessful. He explained that it’s very difficult to treat hormone issues, as they fluctuate naturally and it’s never going to be easy to know when to introduce either estrogen or progesterone or both. The progesterone only pill (mini pill) is a possiblity, but as this made me vile and murderous the last time I took it he agreed it wouldn’t be a good idea! It is possible to take progesterone for just a week or a few days each month, but again - balancing hormones is incredibly difficult and levels change so much over time. So, I have been prescribed pizotifen.

I am writing this because I have spent HOURS and HOURS searching google for some little shred of information that tells me it IS better to treat the hormone imbalance (which is the cause of my migraines) rather than the migraines themselves. I now, finally, believe that it is going to be much quicker, and much easier to take the migraine preventative.

I hope this drug helps, and doesn’t make me too fat :wink:

Can I just add that I actually feel quite lucky that these attacks only happen on a monthly basis - it sounds like so many of you guys are suffering a great deal more than me. I wish you all good luck in finding some relief.

1 Like

Thanks for posting… I’m pretty sure my MAV hit at the same time perimenopause hit last spring. Can’t possibly be a coincidence. I can tell my MAV definitely cycles, though I feel lousy 24/7. There are days that are less bad and more bad depending on the time of the month. I tried talking to a new gyn about it, but she seemed a bit clueless. I did find that taking a natural progesterone supplement helped with some of the symptoms, just had a hard time figuring out how much to take and how often. I actually have an appt. this week with a gyn who specializes in hormonal stuff (a regular MD who also uses natural hormones, so the best of both worlds). I’m hoping maybe if we can tackle the MAV from that angle, maybe something positive could come of it. We’ll see… (It’s interesting to read up on the two and see how many of the symptoms are the same!)

Good luck with the pizotifen! Let us know how it goes!!

My MAV journey started with menopause for me. I just saw a 2nd neuro last week and he told me my hormonal changes weren’t causing my problems, but I totally disagree.

I have been on about 5 drugs so far and none of them have helped. I have more visual and motion related dizziness instead of regular vertigo.

Wow - great post! My MAV started in November of 2010. It started gradually in about August and then turned to daily chronic migraine with the dizziness. I was off work for approximately 4 months trying to figure the whole thing out. I’ve tried quite a few preventatives but finally after about a year, Cipralex (10mg) and 20 mg of nortryptaline seem to work the best for me. I’m not 100 percent mind you, about 80%, but I’ll take it. I’m defintely the worst just before my period, during and then again at ovulation time. The neurologist that I’m seeing now figures perimenopause is the cause - I’m 47. He wants me to try botox but I’m not quite there mentally yet - I’m scared of the stuff to be honest. He also said that HRT is not advised because I get migraine with aura and the HRT could increase stroke risk. Anyway, know that you’re not alone. Sometimes being a female totally sucks!!

MAV is definitely hormone related for me, although it’s a fairly constant (not monthly) thing. My vertigo started a couple months after I went on the pill (started as BPPV, then over a few months became MAV). I went off the pill for a little while, didn’t get any better (but was also having hyperthyroidism at the time), so I didn’t really think the pill was the culprit. I went off of it again a couple years later to start fertility treatments (I also have PCOS…I’m just a hormone mess), and that’s when I started feeling better. I felt even better while pregnant, but then crashed again a few weeks postpartum. Now, my son is 13 months and most days I feel ok (not great, but manageable). I’m trying to wean him though and I’m nervous about how that will affect MAV. I’m due for an obgyn appointment in June, so hopefully DS will be weaned by then and I can start a treatment plan (I’m never going on the pill again though, that’s for sure).

2nd generation perimenopausal MAV’er. Dizziness hit me at the exact same age as it hit Mom.

I postponed a mammogram for the first time ever - because I was so swollen I thought I could be nursing a baby (in my 50’s!!), and I figured squishing 'em was the last thing I needed.

:shock:

A couple weeks later, as the swelling was coming down, BAM. First dizzy spell, tunnel vision aura too. I’m sure it was an estrogen spike followed by a plummeting hormone level that set it off. A lot of people think perimenopause is a time of estrogen only going down, but that’s not true - it goes on a wild rollercoaster ride, with some wacky high levels. Which are then followed by some low levels, and if the hormone level changes happen fast, look out, migraine brain.

Thanks for sharing ladies, I’m sorry to hear it’s hitting you so bad :frowning:

It seems so many doctors refuse to consider the impact hormones can have on our general health. My doctor didn’t bat an eyelid - he instantly agreed that hormone fluctuation is causing the migraines, it just happens that my migraines now consist of vertigo and a thick head/milder pain.

I started the bc pill at age 14, and apart from a couple of short breaks I had been either taking a combined pill, had mirena coil or implanon impant right up until I was 37. I then had a hysterectomy (kept ovaries). So, this is the longest I have been ‘natural’ (18 months now). I already knew that I was very sensitive to hormones, I’m glad my doctor didn’t just dismiss me as so many seem to.

When wishing that I had had my ovaries removed as well, I stop and think about how much worse a surgical menopause could be - do I really want to take that risk? It took 5 years to get my mum straight with HRT…

I really feel for you ladies. Don’t be put off by uninformed doctors, it’s CLEAR that hormones are playing a part here.

Good luck to you all xx

Hi there

I too believe my MAV and migraines have gotten worse due to hormone changes - I think I am perimenopausal at 42, my mother didn’t get any symptoms until she was in her mid 50s though! The migraines started to increase in frequency in my mid thirties, leading to chronic bouts then releasing me back to normal life for a few months or so. I am now on month 7 of chronic migraines/mav the longest constant bout I’ve experienced at this severity.

My life was always affected by migraine and vertigo, but never as much as from my mid 30’s. I’ve mentioned hormones to the doctors I’ve seen, they just nod. I think there is an attitude that hormone changes happen to women and you just have to deal with it! I’ve noticed that my monthlies have gotten really bad since my most recent MAV spell - sometimes the pain makes me sick (migraine never does!) and I tend to get an even worse migraine during this phase. I am always dizzy on day 2/3 of my monthly, my head swirls around as if I’m floating in the sea. Things are happening in my body which the MAV and migraine thrive on and I believe therein lies the problem.

I’m sorry to hear we are all sharing the experience, but it is comforting to know that I’m not alone.

Kindest

I was told my MAV had ramped up due to perimenopause and would be better once I’d got through “the change”. Not so. Some years later I went through surgical menopause (lost ovaries) and things didn’t change. I eventually went on ERT and when I was due to increase the dosage, ie estrogen levels were getting too low, my symptoms gradually worsened and then improved somewhat with the slight dose increase. When I was younger I often had pre-menstrual classic migraines and the PIll gave me horrendous, mind blowingly horrific headaches.

Brenda

Suspect many have gone down this road. The seemingly obvious answer is not always the most obtainable one, balancing hormones is easier said than done. However hope springs eternal and since reading this extract I’m tempted to buy the book. Talking about continuing with walking post lockdown it states:

”But did you know it’s been proven to protect against all symptoms that are associated with oestrogen deficiency during peri menopause ?
Just one hour of daily walking reduces the risk of hot flushes, insomnia and weight gain”

Adapted by Alison Roberts from the book “our hormones, our health: how to understand your hormones and transform your life” by Esche-Belke and Kirschner-Brouns, two hormone doctors.

Bit late for me the peri menopausal stuff but If I do buy I trust it contains much more about alternative ways to HRT but we will see. Further parts of the extract in the Daily Mail and on line reviews seem to indicate it might.

Update: bought it. It arrived and is well written and seems from my dip in so far to be comprehensive. Compulsory reading for women 35+ I’d say.

Later, grrr… this reference book doesn’t have an Index …? Not so wonderful.

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

“Our Hormones, Our Health”
More recommended books here

hi all, from the video on vestibular migraines I looked at the video on menstrual migraine, since a lot of us biological women have our migraines associated to our menstrual clocks. It not only touches on migraines associated to menstrual cycle but also about menopause, etc.

1 Like

Oohhh i really wanted to watch this one but I’ve missed the window. Any advice on managing it?? I’m a monthly sufferer!

I’d really recommend you reading the above book. Thoroughly understand the biology behind it and you will have a better idea on treating the root cause. And the beauty of a book is there’s no window of opportunity to close. All you need is a bookmark and perhaps a coffee table.

2 Likes

Without the coffee! :joy::joy::joy::joy:

2 Likes

Definitely. I still get neurological symptoms from drinking too much decaf coffee …

2 Likes

Well I have a inclination as to how this flare up has come about really and it does involve 1 cup of normal tea, stress and using anti acid tablets. I think the combination didn’t work well for me :persevere:

Talk about super sensitive! :coffee:

1 Like

Why do you feel antacids have made it worse?

Inter drug reaction between a preventative and the anti acids. There are lots of drug inter reactions possible.

Hi

I don’t think the anti acids have made it worse. I was taking the pantoprazole at the same time as my Amitriptyline and that’s not ideal as the panto can stop the Amitriptyline from being absorbed fully. Hence lowering the medication level in my system. It’s not being proven but it’s just a theory I think might be partly involved in this flare up.

Ohhhh I see what you mean! Thanks for responding. I’m sorry about the flare up :frowning: I am glad that drug worked for you though. Nothing has worked for me so far, just been taking klonopin and maybe will try birth control. I hope you’re feeling better though. It’s all so rough

1 Like