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Newly diagnosed, hormones playing havoc!

Hi All, I’m newly diagnosed with vestibular migraines after being hospitalised whilst on holiday over the Summer with severe vomiting and weight loss. I wasn’t “dizzy” at all then, that all came when we got home and things went from bad to worse. 3 months off work, plus 3 months phased return. Many tests, doctors, consultants and rehab later and my specialist thinks that I had a bad case of labrynthitis on holiday and that the vestibular migraines basically stopped me from recovering fully. He also thinks I have been having them for years without really realising (but makes sense when I look back at various health issues) and the cyclical nausea and dizziness I had always put down to PMT was in fact VM. Who knew! Not me or any of the doctors I’ve seen over the years that’s for sure. I have been taking Betahistine since October and 10mg Amitriptyline for 3 months. The Amitriptyline worked brilliantly initially, the last month or so I’ve felt I’ve gone backwards again - ear pressure building again, problems with vision, brain fog, nausea, general “swimmy” feeling etc. My specialist has now asked me to wean off the Amitriptyline and Betahistine and see how I get on. So nervously, I’m a week into weaning and already feeling pretty rubbish. My hormones are definitely a trigger and this is something I need to look into more and work out how I can get on top of. I’m so much better than I was, but that’s not enough for me! I want to feel like my old, normal self if that makes any sense. I’m feeling pretty all over the place emotionally and physically these past few weeks - I’ve been reading this forum for a while now without registering but felt now was a good time to go for it and speak to you all. Thanks for listening x

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Welcome to the board! Sorry you are suffering but nice to see that you are improving.

Did you fly to your holiday destination?

Thanks so much for replying! Yes, we flew - I’d felt dizzy for a couple of months beforehand, on and off, but I often got that so didn’t think too much of it. Then I felt really nauseous for the week before we went away, but again, didn’t think too much of it as my daughter had had a sickness bug and I assumed it was that. I was then ill at the airport, felt very sick and dizzy, and had a nasty tummy, they nearly didn’t let me get on the plane. But although I still felt rough when we got there, it didn’t get any worse so I figured it was a strange version of my daughter’s bug. Then three days into our holiday I started being violently sick and didn’t stop for 48 hours. I lost a stone in 5 days and ended up in hospital for the rest of our holiday!!

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Ah, that was red flag for the coming storm. That happened to me. During the summer before the MAV brick wall hit me in the face I had a couple of times when I was stressed when I became momentarily very dizzy. So doesn’t sound like the flight did it, as you clearly had the signs beforehand.

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Hi, and welcome. You say hormones playing havoc. Rude question - age? Or rather more politely could you possibly be approaching menopause or is it a question of links to menstruation what is termed Catamenial Migraine stuff. Either way the Search facility should furnish plenty of relevant info. Future options vary accordingly. Did the specialist give any indication of his reasoning for you to come off so soon such as plans for the future maybe.

Thanks for sharing. Your story resonates, after an acute episode that turned chronic and subsequent diagnosis I too look back and realise years of what I thought was bad PMT (headaches, nausea, dizziness) was probably always mild VM. Diagnoised in February 2020 (early 40s, in Australia, which I mention because we seem to have quite a different medication regime to the USA) have been on 10mg of (about to go to 20mg) Amitriptyline for two weeks, after side effects of Sandomigran (pitizofen) were too much and currently in a bit of between medicines trough. My neurologist said there is quite a bit of evidence of the Mirena IUD helping hormonal migraines, in case you want to ask your doctors about it.

I think so, I remember being at work at the beginning of July, sitting on the floor reading to some children, and I felt as if I was going to pass out. Felt sick and as if I was moving. Such a strange feeling! So sorry you are suffering too, this is such a strange condition!

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Thanks so much for your message. I’m 43, have felt as if I’ve been perimenopausal for the past 4 years but gynae disagrees, says I’m too young etc etc. I’ll have a look into the catamenial migraine stuff, thank you. I had a strange year of dizziness in my early twenties - got so bad I had to have a brain scan, they thought I had MS (definitely didn’t!), no nausea or other symptoms and it just strangely went away. I’ve always had dizziness but in a different way to now, it’s just got worse as I’ve got older and then it’s just been horrendous since the Summer. Specialist felt that I had two options - either increase the meds (which I wasn’t keen on doing, barely took a paracetamol before all this!) or they coming off them completely and see what happens. Feeling a bit like a guinea pig, but given we’re in lockdown here in the UK like so many others, he felt there wasn’t really a better time to try given how much slower my life is at the moment. I feel as if there are other triggers for me though, not just hormones - chocolate, MSG, tiredness, stress, red chillies (strangely!), standing in the sun (but can walk in the sun, all very odd) - just things I’m noticing at the moment. Not feeling great weaning off the amitriptyline though, ears are aching and have huge pressure in my head and ears, plus nausea and “swimmy” feeling is back. Plus I get really heavy, yet shaky legs. Why is that!! Guess we will see what happens.

So many similarities in your story Cassia! I too am early 40’s - based in the UK. My gynae hasn’t been keen to give me anything to help hormonally, I’ll have a look into the Mirena coil, thank you. I do feel if I could get on top of my hormones I would have a more balanced life. Then may be I can work out what else is triggering my symptoms for the rest of the month. I’ve just ordered the Dizzy Cook cookbook, interested to see if that can help. Good luck with the amitriptyline, I felt so much better after 2 weeks being on it, although did start to feel worse again after 2 and a half months. The way I feel at the moment I suspect I’ll be back on it again before too long!

You sound so much like me. I am 44 and all of my severe and chronic symptoms started when I was 41. Like you, I had some symptoms that I presumed were PMS during my teens and twenties. They do actually say that if you suffered with PMS symptoms that you are possibly more likely to suffer quite badly during peri menopause (great!) Although most of the doctors I have seen say that I am too young to be menopausal, I disagree and know that it is. My periods are all over the place and both my mum and grandma went through an early menopause. I now suffer from chronic headaches with a migraine variant which includes head pain and pressure, terrible left sided neck pain, lightheadedness and dizziness, visual issues and these don’t even scratch the surface of the symptoms that I have had and continue to have! I have been to countless specialists and was also tested for MS a couple of times. My Neurologist put me on nortriptyline which I have been on for nearly 3 years at varying dosages, currently at 45mg, as if I go down any further the head pain and pressure seems to get a lot worse. I have also tried many other migraine meds, but this one seems to work the best and also helps me sleep. The only specialist that I haven’t seen yet is a Endocrinologist, and I do wish that I had seen one sooner, but all of the doctors and specialists that I have seen (predominantly male by the way) have said that this could not be hormones as I am too young to be menopausal! I am seeing an Endo on 1st July and will possibly try HRT, though I believe because of my migraines I may not be able to have estrogen?? Anyway, thanks for sharing your story, you are definitely not alone :slight_smile:

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Sometimes I do despair. Not very flexible in their thinking these doctors are they. What’s in all this talk of people being ‘too young’ for menopause. One of my work colleagues did totally natural menopause at thirty six! So maybe unusual but obviously not impossible. Lots of medics seem to want to deny a hormone/MAV connection. They did with me but, by timing, otherwise would be too much of a coincidence. This denial is only annoying if it interferes with treatment. I understand for some HRT does help but it has to be started within a certain time frame and of course here in UK can only continue five years post menopause. For those who are in that bracket well worth further research.

I actually cried reading your post @jennywren - so many similarities. I don’t get head pain thankfully but it made me very emotional reading your message and basically just saying YES the whole way through! My Nana was 41 when she had her menopause, Mum was 43. Gynae (male and older!) also says I am too young despite the family history. I’m sure I’m going through similar, I think we too will look at the endocrinologist route. Thanks so much, it means a lot.

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I agree! Totally inflexible. Especially if you don’t tick all the boxes or fit into the stereotype they’re expecting. So frustrating!! Possibly a silly question, but if hormones are a factor, does this mean VM will ease post menopause? Not really something I’ve looked into as yet.

Well if I am anything to go by, No. My MAV actually started as I hit menopause in fact within about four months of what turned out to be my last ever menstrual period. From all the research I’ve done and all the medical papers I have read, and there have been many, straight classic migraine provided it is linked to period times and starts at or about menarche does nearly always stop with menopause. Not seen any papers relating to such as mine. In fact a migraine specialist neuro told me very recently my migraine history is completely backwards for it to be hormone related. Another hormone related type which occurs is the one that starts post partum. I know a lot of those from this site and one in person whose classic migraines started when she was 24 and within days of giving birth to her first child. They continued throughout her fertile years but she has never had another since her periods stopped. She is now over 80 so that’s pretty conclusive to me. I doubt any research much has been carried out into attacks beyond menopause I have read however that migraine attacks tend to occur much less often in later life.

Menopause and VM - so much to look forward to then :joy: and to think this was something I hadn’t even heard of.

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‘Ignorance is bliss’ as the saying goes. Btw dizziness and balance clinics are packed full of menopausal and perimenopausal women. Must be a reason for that you know!

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