Inspired by Helen’s PD I joined up

Helen, I just want to thank you for providing so much detail about your journey. My vestibular migraines started in 2008. I had scans done, but everything was normal and so doctors just kept telling me it was “stress and anxiety.” I had anxiety because I was so dizzy and it scared me. I’m not anxious on non-dizzy days.

My symptoms increased in the spring of 2019 when I started menopause. I was not officially diagnosed with vestibular migraine until January 2020 following an attack that left me in bed for the better part of four weeks. This was the first lengthy migraine cycle I had that would establish a pattern of sorts. It starts with classic migraines (migraine headache with aura). I start with those - and have up to 15 classic migraines in a 4-6 week period. During this time, the vestibular migraine attacks start so that I have both types of migraine occuring simultaneously.

My first cycle, as I said, started in October 2019 and ended early January 2020. I began another cycle in April 2020 and that lasted 4 weeks. Then I began another cycle in October 2020.

On December 15th 2020, I was sat and began having waves of vertigo for about an hour and a half when finally the wave came and never left. I could not walk, my vision had me believing my eyeballs were rolling around in my head, and I had to call my teenage son to come and help me to my room. I became nauseous and there was nothing to stop the vertigo. My husband came home from work and I vomited off and on from about 5pm to 1am, despite an antiemetic. It was about 5 days before I could walk unassisted; a week before I could leave my bedroom; and a week and a half before I could get up and do things around the house for a maximum of 2 hours before I’d have to retreat to my bedroom.

In the early days of the attack, I had to keep a facemask over my eyes due to photophobia; and, it was just awaful lying in a dark room, unable to do anything, having to plan trips to the bathroom around my husband’s work schedule or crawl on all fours. I had some good days and though the cycle and attack were winding down, last week when I ovulated the cyst ruptured. This started things all over again…

While this new bout of vertigo/dizziness is not near as bad as last month, let’s just say I’m spending more time in my bedroom than I would like.

The guilt I feel because my children are without me so much right now is killing me. I have a lot of family and friends who don’t understand and say hurtful things like, “You just need to get outta that bed and go do something,” or, “You’re doing this to yourself!”

Sometimes the symptoms change from what I am used to and that scares me. So I am thankful to read your story because some of those scarier symptoms you describe as having yourself and that really helped me.

I am very sensitive to medications - there is a lot I cannot take due to conflict with other medications/medical conditions, allergy, or intolerance, and all the medications I have seen people taking for this are on that long list of “I can’t take that.” So, I just do what I can: wear blue blocker glasses if I have to do computer work; severely decrease time on the computer and smart phone; take care when looking up, bending down or over; listen to my body. I cannot drive hardly anymore and riding in a car as a passenger has become difficult. I have good days and bad days. I struggle with acceptance as this sometimes feels like a prison sentence.

I am wondering when this current cycle is going to end, and am beginning to wonder if last week was the start of a completely different cycle so close to the end of the first? Anyway, thank you for sharing, helping me with my anxiety about things (because I can get neurotic about it all sometimes swearing I have a tumor or something nefarious).


So pleased all my wittering have been of some use. I sometimes wonder. My father always used to say I talked too much. Vaccinated with a ‘gramophone needle he used to say.

Some of this stuff can be extremely scary especially first time around. After all people kind of expect to be able to stand up and walk once they get out of bed and are past the age of about two. It sort of goes without saying. Similar comments could apply to the tolerance of the daylight and people tend to think there is a human right to negotiate supermarkets without trauma. MAV just throws all this on its head.

We certainly sound not dissimilar. Reading between the lines it doesn’t sound to me as if you are progressing as you should being a young mother and I would respectfully suggest you look again at that “I can’t take that” concept. I know I would never have improved without medication and much as ten years ago I’d have been amazed to learn I was heading towards betablockers it proved necessary. I could never have got as far as I have without some form of medication and there must be something you can take that will help you I. The same direction. There is bound to be. Do try and find it.

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I fixed it & the title you have given is perfect.

I noticed you are from the UK - I could tell by certain spellings, phrases, & etc. (You use s where Americans use zed, for example)

What part are you from? My husband is from Scotland. We met when he was in the Royal Airforce stationed in England. I was on holiday visiting friends in London, and King’s Lynn. We live in North Carolina, USA.


Long way from Scotland. I am in the South West of England.

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Hi Rita,
I just wanted to say that we are glad your here and you have a place to come where everyone can commiserate. We’ve all been in that place in one form or another of not feeling that we are “enough” for our loved ones due to this illness.

Truth is, we are enough. We need to educate ourselves as much as possible, so we can help others understand also. I can only imagine in retrospect how difficult it was for my husband and family to grasp these awful invisible things happening with me… when I couldn’t grasp them either.

I wholeheartedly agree with Helen to please consult with an expert to find a medication that can help get you on the path to wellness. We all are med sensitive… I would venture to say that 98% of us here have actually typed those very words verbatim.

You can do this!

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Wow, that is an amazing post. We welcome you Rita.

@Naejohn is right. Please don’t sell yourself short. You deserve a far better life than you are currently experiencing. You shouldn’t be in prison, you haven’t commit the crime. How’s about ploughing through the results of this Poll James produced. That might give you some clues. Failing all else I can find a paper about an Italian study of people who took Aspirin over 16 weeks as a preventative. That’s one I have toyed with because, Renee is right, we have all had problems with being med sensitive. It’s par for the course. I only need two of the tiniest, 2mg, Valium and I sleep as if under anaesthesia for ten hours straight and that was years before MAV even hit. It all boils down to hypersensitivity. MAVers can prove hypersensitive to pretty much anything and everything.

Medication mention count in User Cards

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