I also fit perfectly into that category…hormonal migraines with and without aura when i was younger…then just odd ones here and there in my 30s then BAM vestibular migraine aged 49 a few months into menopause. My nana had migraines and my mam has epliepsy brought on when she reached menopause so a lot of neurological issues down our female route.
Thats what makes me think…could HRT patch help maybe?
Jo xx
I’ve had MAV 15 yrs and I don’t think there is ‘normal’ for MAV generally. Every person is affected differently. What’s ‘normal’ for me, wouldn’t be for you. It varies. Also it can change for each individual. We say it ‘morphs’.
Have you actually been told it’s probably MAV. I know you said you have CI but is the MAV confirmed. From exp I’d doubt it. Doesn’t seem to take much by way of complications for doctors to get confused I’ve found. And CI and MAV hv overlapping symptoms so must be difficult. The neuro-otologist I saw was insistent that one had to have had vertigo to have MAV but other medics apparently don’t agree. You say you have never had vertigo??
I managed to work between acute attacks for a decade with episodic MAV and 90% on it on screens. Mine would go away completely between attacks so it wasn’t a problem. Wasn’t in employment anyway when it went chronic. Know I couldn’t have worked at all (over 3 years+ now) since it went chronic. Many months couldn’t look at any screen at all. In UK would imagine it would be very difficult to obtain benefits with MAV but you’ll have to give it a try I guess. Good luck. I’d guess you’d need a letter from the specialist, might help.
Presumably you have specs with prisms for yr CI. Don’t wear sunglasses indoors what ever you do. Makes you more light sensitivity. You can obtain FL71 rose tinted specs to help with screens if symptoms are produced by light sensitivity. Theraspecs are US ~based. Coloured lens wouldn’t help with CI. presumably you’ve been tested for Irlen Syndrome?
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Jo, it is my understanding per my Neuro that HRT can help women who are getting migraine or MAV that is triggered by menopause. However, in some women it can worsen things. That was my experience a few yrs ago. Now that I believe I am probably postmenopausal, I may ask about trying them again. It sure would be easier to experiment with this if I was not working…
I agree…ive taken some leave from work all next week as im struggling with Nortriptyline. Not that much is going to change in a week but its better than nothing. Im still not going to rule out an HRT patch…i’ll try ANYTHING!!!
Jo xx
Good luck! I couldn’t tolerate the Nort, but I’ve heard it’s very effective. I take propranolol, but only 40mg normally. The Dr wants me at 80mg, but I feel like a half dead slug. I am pretty strict with diet- I avoid msg, nitrates, onion, chocolate, and red wine. Those seem to be my worst triggers, but they are dose dependent. I also take magnesium and vit D. I feel like they help. If at all possible to keep exercising, that helps too.
Did the Nort increase your dizziness also? Plus its giving a terrible upset stomach…i also take low dose Gabapentin 300mg Magnesium 400mg and ive had 1 lot of Botox treatment…li tried Propamolol 4 years ago and cant remember it helping but i was not taking a high enough dose i think. I wouldnt mind giving it another try. I didnt give Pizotifen or Flunazirine a fair trial either…im useless☹
Jo x
By the way…my headache specialist has never once mentioned any type of food or drink restrictions…
Jo x
Jo, yes, the Nort made my dizziness worse. It was very difficult to walk unassisted while on it. That’s why I stopped it. My Neuro recommended that I stop it for several days, then restart it again. She said that for some, this can stop the dizzy side effect. I didn’t try that as I had enough!
My Neuro also did not say anything specifically about diet. But she did say to keep a headache journal to try to discover triggers. I also had read the Heal your Headache book by Buccholz (very good and not just “headache”). I discovered that certain foods set me off within 24hrs. Hormone symptoms, lack of sleep and weather as well.
It was quite difficult to find “trigger” foods when I felt so awful. I was already at a 9 on the pain / discomfort scale, if it went to 10 it was pretty hard to tell that was a clear trigger.
But I did notice over time that if I adhered to a strict low tyramine diet, my symptoms would become much more consistent over a few days and then week over week I was able to see very slight improvements. So I was never able to pinpoint specific foods very well.
I still cook all my low-tyramine meals on Sunday and then instantly freeze them for freshness. Even my Naturopath thinks I’m obsessive compulsive about my food and she’s right, but it does work for me and I got used to it. I don’t intend to stay like this forever, but at least until I can get much more recovered.
Can’t win, can you. If it works for you, who’s to knock it. Guess if you are food sensitive you need to be active in yr approach to control/avoidance. Half hearted wouldn’t work. Might be complete waste of time altogether, I was amazed to read medics saying some drugs don’t work because people don’t ‘bother’ to remember to take them regularly. Because of such non-compliance medics try not to prescribe pills you have to take several times a day. This applied to alot of drugs and not necessarily MAVers. I’m amazed. I subscribe to the lady I read somewhere who said she’d wear a chicken on her head if it stopped the dizziness. How hard can it be to swallow a few pills?
Yr low tryamine diet is interesting. I wonder if I’m the same. I’ve been trying it out to some extent and feel it could help. And being much more careful to eat fresh where possible and avoid ‘leftovers’. Avoid a couple of known food triggers completely which helps but alot of mine I’m convinced is the dreaded ‘hormones’ or lack of them and certain light situations a main trigger.
Neither neurologist I saw mentioned diet, not even caffeine restriction. I emailed the migraine specialist neurologist much later after reading alot about diet on the internet specifically to ask. She said no need to restrict at all. In consultant thinking about it she did query my diet and said a well balanced diet was required. That was all. Dr Silver wrote somewhere that one of the main reasons for failure of preventatives to work after dose and time allowance was caffeine consumption which I keep in mind for future.
Jojo
Well that’s interesting. With @napagirl that makes three of us in the same pattern, give or take very little. It’s a genetic predisposition and those dratted hormones to blame. Sorry to hear about your mum developing epilepsy. My mum developed bipolar in her late 30’s after my brother was born. I read there are similarities/possible connections to epilepsy with bipolar. I’ve wondered. I read tons of stuff about treating hormones for MAV but don’t remember any positive outcomes but you have to remember there are probably lots of females out there took HRT for some else and never got a wiff of MAV in the first place so they’d be success stories without ever knowing it!
It’s amazing when people get ‘talking’ the similarities. Pity medical research doesn’t take note of more things. Might help for the future. All that ‘wasted’ info. Knowledge is power as they say. Don’t think doctors even think about causes of many conditions. Just treat symptoms or try to. Not that I’d want it but nobody’s ever suggested a link between my MAV and menopause. In fact it was many years before I thought of it myself. Helen
Helen…i might go for it and try an HRT patch…what have we go to lose!!..ZILCH
Jo x
Haha, yeah, I’ve thought that exact same thing. I am splitting my Verapamil pills into 5 doses through the day and its easy for me, never forgot even one dose and never late.
I’m 3 times daily for over 2 years now. Late maybe 6 times, but like you never forgot or not bothered. If they cant bother, I’d say they cant be that ill. I can understand people afraid to take pills for fear of side effects but just not to bother. Silly.
Yes! My sister who’s 2yrs younger than me (48) has had no migraine issues whatsoever, even with our family genetics for migraine. But she’s also been on birth control pills consistently for around 30yrs! She has never had a hot flash or any other premenopausal symptoms!!
Could we all be missing out here guys??? Im going to make an appointment with my GP and discuss it.
Jo x
Worth a discussion for sure. For me, HRT made me worse. But it can help some…
In what way do it make you worse? Im not sure i can risk feeling more il
Jox
Hi Jo, I’m now 10 weeks on venlaflaxine still at 27.5mg and now seeing improvement in pain and dizziness (imbalance, steadiness) will still need to go upvto full tab but taking my time. The reason I’m reaching out is that before venf I tried hrt for 7 months, I was advised to go the transdermal route for estrogen and oral tablets for progesterone, I’ve no regrets about trying it initially I got some relief with estrogen in terms of my daily head pain and first three months were positive however monthly progesterone brought challenges and eventually the build up of estrogen made my balance worse. If like me you’ll give anything a shot then get the name of a few experts in hrt with migraine so that they get you on the right path. I still struggle with hormones they are my biggest trigger but the venf is helping so grateful and still optimistic the next dosage will assist me further. Time will tell. Best of luck x
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