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New here - vestibular migraine sufferer

Hey everyone,
I found this forum and thought it might be helpful, as I find suffering from these issues extremely lonely at times!
As a child I had migraines with aura a few times which dissapeared into my teens. I began long term contraception and wasn’t bothered by migraines until I turned 26 and came off contraception. I then noticed I would get vertigo at certain times of the month lasting three days at a time and I’d pretty much be bedridden.
This carried on for a few, I visited the doctors several times which wasn’t much help, they performed the epley manoeuvre on me and then BPPV was ruled out. I survived by taking travel sickness tablets and living in dread.
Finally I spoke to sympathetic doctor who specialist in dizziness and related disorders and I was diagnosed with vestibular migraines, hormone a being the main trigger. It was nice to have a diagnosis after a few years of wondering what on earth was wrong with me.
I get one to two migraines a month, always lasting a few days to a week and I find it debilitating. A few days before an attack I will feel extreme anxiety and depersonalisation as well as a rapid heart rate and feel very strange, then I will have a few days of dizziness and unsteadiness with nausea and sensitivity to light. These are the days I can’t really get out of bed. After that I will be able to function better but still be a bit rocky.
Sorry for the essay, I just feel I need to get this off my chest and not many people have heard of this type of migraine, let alone understand it.
I have been prescribed propanalol to be taken as a preventative, up until now I’ve been frightened to take it (I’m scared of the side effects) but I’ve recently had an awful attack and am now willing to try in combination with the migraine diet.
Has this helped anyone at all?
I have also tried going back on contraception but this triggered more migraines.
I’m just at a point where I feel totally desperate and that my quality of life has been compromised. I am grateful that I don’t suffer this 24/7 but I simply cannot deal with it anymore!

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Very briefly. Propranolol can stop straight migraine dead in it’s tracks. Well established and proven. MAV takes more controlling I suspect. One of the U.K. NHS top three choices for preventatives, I take it and it stopped me having a vestibular attack for years. Not ‘for ever’. Nothing would but it’s very effective so as it’s been prescribed for you do take it. It’s also one of the preventatives with fewer side effects. Certainly worth a try. Start very low dose and gradually build up. I started 10mg three times a day and increased weekly. Give it a go. You will never know til you try.

I just wanted to say hi and say that I too am heavily triggered by hormones, can totally feel your pain. And the feeling of dread that comes around every month. There are quite a few of us on here triggered by hormones sadly. I take amitriptyline but fretted for ages beforehand about taking it, I now wish I’d started sooner! Anything is worth a try when you feel like this. Definitely give the diet a go and it might be worth looking into supplements as well - I’ve had success with magnesium glycinate. Good luck and do keep hopeful as things will and can get better x

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Hi, I am also triggered by hormones. Please don’t feel alone there. Hard to reconcile that a completely natural thing causes this much problem. Have a go at medication, it may lessen the degree of suffering each month

Thank you all so much for the replies!

Sammie, you can and you will deal with it. Right now you’re in a hole but you’ll pull yourself out. Here on this forum, we’ve been there so know how you are feeling physically and emotionally

I’m like Helen and also on propranolol, 160ng daily. It hugely helped with the migrane component of my condition. I’m chronic and need ajovy plus venlafaxine.

Propranolol is my friend where as venlafaxine is an acquaintance. I have found it gentlier on my whole system and effective. I wasted 2 years uneducated due to medicine anxiety and regret it. I think you should try it now that it’s been prescribed for you. Like Helen, I started super low and went up slowly,paused when I needed to etc…

It also helps with anxiety. The other thing about trying a med is that it places you in the driving seat a little more in managing this condition.

Stay strong Sammie, one day at a time and keep us posted on your decision and progress.

Elaine

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I’ve just been reading that magnesium can prove a success with some menstrual migraine cases just be taking it a specified fifteen days of each cycle. MAV from hormones is a powerful condition to control. Some people find magnesium us sufficient on its own but I suspect many more use it as an adjunct to other prescribed preventatives. (Btw @CB2006 id be interested to hear more details of your success story on a more suitable thread of course).

Thank you Elaine, for such an inspiring reply.
So being chronic, do you have to deal with this everyday?
I have just started the propanalol today, only 10mg but I will work up slowly. You are right it’s worth a try.
Thank you so much