I’ve been thinking a lot about what the next 10 years will look like for me as we are contemplating a move and a change of job. Contemplating only. My job now is very understanding so it’s a big deal.
I read a lot of posts on here stating that their vestibular issues began at perimenopause or after menopause.
What about people like me where it’s all started wayyy too early. What should I expect in peri? I’m 39 and as I tip toe into the 40s next year, I’m wildly cautious of living with worse symptoms.
So my question is… has anyone that has been diagnosed with VM in their 30s managed to journey through peri without constant relapses? Has it been better than expected? Or am I dreaming!
Mine started when I was 38, I’m now 46 so have had VM for 8 years. Whilst stress was at play when it very first started I do believe hormones have been playing a big part for most of this time too. I have had periods over this time when VM has been fairly under control and even some months of feeling 90% back in 2020. However, I have needed to take many medications over the years and at no point been completely off meds. To be candid my most recent relapse was more severe but I am slowly getting some control back over recent weeks. It would be interesting to hear what others say and if there is any kind of pattern. I guess so much is down the individual and their response to diet/meds/stress etc. I am holding out hope that there will be a huge improvement come menopause, whenever that will be!
Thanks for your reply. How many relapses have you had in that time and were they severe enough to keep you from working?
I am not looking forward AT ALL to peri! God if it’s here already I can’t imagine what that will be like.
Some days I am really grateful to be older as I can still joke I never suffered peri menopause because it hadn’t yet been invented! At least where I live I never came across the term until I’d entered menopause and probably some time later than that indeed. New terms obviously take longer to root in my part of the U.K. I think sometimes ignorance is bliss. I never expected any problems pre menopause and never went looking for any. In that respect I consider myself lucky. Recently there’s been such an explosion of information it’s hard for women not to be more wary.
My wise old Grandmother used to be very fond of saying ‘Jump your stiles when you get to them’ and that’s good advice. There’s no point worrying about what’s to come. As you already know deep down the future is uncertain and there’s nothing you can do about it anyway. Enjoy what is enjoyable now and try not to think about it would be my best advice. There are lots of other references on site to it but far as I know consensus is the vast majority of cases that start during fertile years ease up if not cease altogether at or post menopause. As you already know mine (appeared to) start at menopause however looking back it didn’t really. Mine started with menarche then, for some mysterious reason which stunned the neurologist I consulted at The Migraine Trust, stopped throughout my fertile years and resurfaced at menopause. She had no explanation for this, presumably unusual phenomenon, but told me I should just be grateful that I had had all those trouble free years which I am. Personally I’d think you very unlucky if yours continued ‘for ever’ but I certainly would not over concern yourself with it because 10/15 years from now medicine may well be so advanced there’s a one off cure-for-migraine pill available in the supermarket. Sometimes things in medicine can move that fast. The neurologist at the Migraine Trust didn’t expect mine to last ‘for ever’. She was convinced it always fades eventually for everybody. Let’s hope she’s correct.
Helen is right. We can’t know what will happen. I think that you won’t find anyone still posting here who has sailed through pre or post menopause without MAV raising its head. Generally, once people are better they stop posting and mostly only return if things get bad again.
Also, Peri might be a long way off, I’m 58 and it is only this year that my periods have spaced out (after a few years of coming closer together). I’m not counting my chickens…(I know women in their 80’s still having hot flushes). I suspect that although my first MAV symptoms (treated as Menieres) started at 32 that actually I’ve had migraine tendencies since childhood when I think I had what they now call CVS but was put down to a sensitive tummy and constant " food bugs" that didn’t affect the rest of the family back in the 70’s. So, for me although I do get hormonal headaches they aren’t the only driver of my MAV.
You are doing the right thing getting all the best treatments available such as Ajovy which is rare as hen’s teeth here in Blighty. You might be one of the Success Stories! My consultant says that if you get MAV treatment quickly and stick with it till you are well then you are less likely to suffer a recurrence than people like me who were misdiagnosed and went untreated (though managing fine) for decades as I was constantly irritating my brainstem.Having treatment gives it a rest and time to heal(like a sticking plaster)and you are doing just that.
My VM started over 2 and a half years ago - officially. But I think I was being triggered by hormones regularly before that without realising what it was. I just thought dizziness and nausea was the norm for periods. I’m going through a pretty rough patch at the moment (really struggling if I’m honest) which was triggered by covid back in September but, as usual, symptoms are much worse at certain times of the month. I believe I have been perimenopausal for years although gynae says not - too young etc - despite family history saying it was probable. My periods are now shorter and lighter than they have ever been, completely irregular and my VM is the worse it’s been since I was hospitalised in 2019. Hard to say if directly impacted by hormones/perimenopause but I strongly believe there is a connection.
This has crossed my mind too - just hit 30 and I know it’s miles away but yes I have had the same thoughts as you. One thing I can tell you is that we are not promised tomorrow and so in that I think we just have no choice but to live day by day, accepting what will be will be seems the only way forward.
Recently lost my dad age 56 and his life was full of stress and anxiety and for what? It never amounted to anything other than making himself sick. It’s really made me think intently about how my conditions stress me out so much and that if it’s going to get bad it’s going to regardless or whether I worry about it or not.
Of course I hope we all live to a ripe old age with little if any issues but no one can tell us for certain so we just have to roll with it I guess. I hope this doesn’t sound like I’m being pessimistic, I’m actually just living in a constant reality these days and living life because in a flash it could be taken away from us.
Live your life as best as you can don’t think too far ahead.
find joy in something everyday regardless.
Yes of course all this is true! I totally get it… and also believe this to be true.
I think I’m thinking about life ahead because of this potential move and don’t want to make a decision that I’ll regret. But I might regret not going too so I get it.
I think a lot of us have. Yes it’s best not to think that far ahead, but honestly to be frank - the beast of peri and menopause is hard to hide from an anxious mind. Many ponder this very thing.
I was chatting to a friend last night who I haven’t seen for years. She was telling me that she has VM too and saw the same neurologist as me. She’s on Emgality and said it’s all gone. I have daily symptoms - manageable but definitely there. Even the akinetopsia is unsettling. Quite surprising really. Hoping for more improvement. Hate comparing myself but it’s human nature.
You know what, I may be. But still a ways to go in my mind. I’m definitely not a success story when it comes to anxiety that’s for damn sure.
Here’s to a smooth ride ahead
Hi - I did make a bit life change during peri with VM (although I didn’t know then that’s what it was - just knew it was vertigo and dizziness). I think my desire for the change helped me through it. I moved to a different location and different job etc. I won’t say it was all a piece of cake but that was also because moving at 41 isn’t ! When I got diagnosed with cancer a few years later I had occupational health but actually what I needed it for was managing my dizzies. And that helped, so I went very part time (15 hours a week with one day a week in the office). It was the cancer though that swayed my employer even though it was for symptoms of VM. I have a supportive husband and working from home has been a godsend. I think you’ll know yourself when you want to take that step. I did when my desire for the move outweighed the fears. I’m now 55 and 2 years since my last period and my VM is definitely better than it was and I’m taking a step forward to start a Masters which involves a day’s travelling once a term. I’m scared but again I really want to do it and going to try. I’ve had also had years of therapy which has helped - started off as trying to manage my anxiety over vertigo but actually unpacked a lot of other triggers that underlied it. I hope my long answer has helped? I wish you good luck with your decision
Thanks for your response. I hope your cancer scare is all in the past. Good to hear things have slowly improved for you