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 wasnā€™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 Iā€™d pretty much be bedridden.
This carried on for a few, I visited the doctors several times which wasnā€™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 canā€™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 Iā€™ve been frightened to take it (Iā€™m scared of the side effects) but Iā€™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.
Iā€™m just at a point where I feel totally desperate and that my quality of life has been compromised. I am grateful that I donā€™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 itā€™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 ā€˜for everā€™. Nothing would but itā€™s very effective so as itā€™s been prescribed for you do take it. Itā€™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 Iā€™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 - Iā€™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 donā€™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 youā€™re in a hole but youā€™ll pull yourself out. Here on this forum, weā€™ve been there so know how you are feeling physically and emotionally

Iā€™m like Helen and also on propranolol, 160ng daily. It hugely helped with the migrane component of my condition. Iā€™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 itā€™s been prescribed for you. Like Helen, I started super low and went up slowly,paused when I needed to etcā€¦

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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Iā€™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 itā€™s worth a try.
Thank you so much

May I ask if you had any side effects? Thank you.

What kind of side effects might I expect? Thank you.