The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page



ha ha English is my second language, so you can imagine what happens to me… when I teach is the worst! I think my reviews this semester are not going to be the best. What to do… keep going!


Exactly, keep living your life. I do a lot of public speaking. Sometimes when my thresholds are low I just come clean and give my audience a really short description of MAV. Sometimes I stumble and make a joke out of it. Sometimes I’m brilliant.

Ignore the reviews. You are still working. That’s a Herculean task on its own. You get best marks from me!


Thanks, that is so sweet. I think keep on living our lives is the best we can do. I have shared with some colleagues my diagnosis so they don’t think I am drunk or crazy, because I have sometimes to close my eyes or take more time to think things through. You are my inspiration @flutters Your posts remind me of still enjoy life despite this condition.


And that was really sweet of you. I’ve had to learn to be honest about what’s going on with me. It’s hard, because I used to be a superstar. Now, well, sometimes I can’t remember how to spell or say my name. I laugh when I can. I remind myself that God doesn’t give these big challenges to the rookies. And I LOVE as much as possible. MAV gave me the gifts of vulnerability, flexibility, humility, empathy and so much more. Plus all my wonderful MAVerick friends!


Sorry? Not quite with you there. Apart from the hot flushes, and MAV (which I’m sure is hormonal), menopause hasn’t bothered me at all. Unfortunate for me it brought the MAV backwhich I hadn’t had since puberty but yours is post partum so MAV may stop at menopause if it doesn’t go long before that is. Helen


it was a joke/ sarcasm… my mom suffered a lot during her menoupause so i am afraid once i am done with this episode, hopefully before menopause, menopause is going to bring it back…


… i got it …

I no longer own the requisite parts besides ovaries. I’m not sure how I’ll tell the difference between menopause and just MAV.


I use theraspecs or a blue light blocker whenever the lights bother me.


Plus f.lux. Anna showed us that one. I love it.


I should own stock in electrical tape! Just like you, @dizzy3 I black out all of the appliance lighting… I giggle to myself sometimes when I think why on earth my toaster, vacuum, televisions, washing machine, dryer, dishwasher, refrigerator need LED lighting… it’s like the new “fashion” for appliances! :joy:


hahaha funny, the things we have to deal with


I did wonder but it seemed so unlike you. From what I’ve read people who develop post partum MAV generally lose it completely after menopause so you should be OK. I’ve personally known several women who had classic migraine which only started post-partum and who have never had an another attack once their periods ceased. Take heart, and just to be sure I’ll wave my magic wand in your direction. Helen


That’s easy. If the flushing doesn’t cause you to feel hot, it’s MAV… If it does, it’s menopause. Still, don’t suppose it matters either way over much. I spent years wondering why all the fuss about menopause. Why take HRT. Natural process. Been going on for ever. All I ever got was hot flushes. It was some years before I realised there might be connection with MAV. If there is, and in my case I’m virtually certain now there is, that’s the only other menopause symptom I’m aware of having. Helen


Well, it’s really a pity I don’t always heed my own advice. Actually I think I’d moved on from such intense hypersensitivity. Think I have really. It’s just this time of year with exceptionally low light level, and ‘That Sky’ the featureless, colourless dull winter sky that is the only outside light source - gets me much less often than It used to but still ‘gets’ me at times. This very morning, baking a savoury pie, moving around my kitchen without interior lights on, I have to move from natural window light passed chunk of solid wall (pretty dark) and then another lot of window light every time I cross from kitchen sink to cooker and worktops. I was feeling fine, balance spot on. Through the light complex, and suddenly almost had to grab the worktop to stay upright, my stomach turned over like on a rollercoaster, and within a few seconds, rear head pressure arrived. Guess I’m stuck like this now until I’ve slept over night. That’s the way it goes. All because I hadn’t foreseen the necessity to put the interior lights on which meant it was slightly darker indoors than outside. Contrast Sensitivity it’s called accordingly to my friendly local optician. I’ve alot of far less polite terms for it. It’s what rules out restaurant meals for me that’s for sure. It was following a pre-Christmas meal in a restaurant lit by everything but central brightness that tipped my MAV over into becoming chronic 24/7 four years ago next week or so. Helen


Sorry to hear of this Helen. Mav is the weirdest illness ever! I hope you feel better when you wake tmrw!


I most probably wouldn’t have posted this at all except for the timing. I thought it would illustrate to you, you’re not the only one. It all just shows how closely our eyes and balance system are linked. Ultimately the light sensitivity can/will knock one’s balance out completely. The reaction I described previously used to happen to me n times daily when I was first chronic and really increase the dizziness. Last winter I don’t remember it so much but it did occur sometimes. Today it took me by surprise although I don’t suppose it shoukd because It’s been a bad week balance-wise and I did feel I reacted couple of times in similar circumstances back along. It’s all gone bit hyper again I suppose for some reason. Odd really as I’ve been continually noticing more little improvements here and there. My ears are clear nearly all the time now and my neck turns to the right as far as to the left for first time in years. MAV doesn’t seem logical sometimes. Helen


thanks dear @Onandon03 Helen, my sense of humor is great, it had been buried under this MAV :slight_smile:
sending you love your way too!


totally agree with MAV changing us at a deeper human level. And I love having you all as friends as well.


Sorry your having a bad patch, hopefully it will calm again soon! I can’t wait for the day my ears don’t feel full anymore! This is a rollercoaster. I’ve been on pizotifen about 9 weeks now shall I give it longer?Lol x


Well, they reckon 10 weeks minimum. I assume Pizotifen is doing something to help you? You’ve noticed some improvements. I think you spoke to @janb about her timeline. She’s done so well on it but still struggles with her ears. Must admit my ears have only really dramatically improved over last few weeks so lagging months behind some other symptoms but everyone is different. Has yr medic, GP?, whoever mentioned what they suggest to add in next? @Amylouise is on Pizotifen. How does yr progress compare? Virtually all other preventatives take up to four months accordingly to the experts. However, some seem to see some success with Amitriptyline in about a month. That doesn’t mean it’s fixed though. I’ve had alot of success with Propranolol but I am where I am, and I’ve been taking it at higher dose 18 months so far. It took eight months to really kick in with me. Helen