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A year living with MAV and still rocking life!

Summary

First acute balance issues : 10 years ago I had spinning vertigo for like a week and then never again. This last time started Jan 2018, was pumping and starting getting dizzy. It was not all the time, and then I entered the chronic phase 24/7 rocking plus other symptoms (from headache, to space out feeling, ears clogged, etc)
Number & duration of acute phase(s) : I would say I am still on it so 16 months.
Any suspicious physical event/trauma leading up to dizziness : Nop, it was 4-5 months postpartum, coincided with my period coming back
Start of chronic phase : Feb 2018
Age at chronic onset : 37
Started medication : venlafaxine on May first (I tried zoloft for a month, bad decision, led me to a major anxiety attack). I also had a 5 day steroid pack to break migraine cycle (I think it contributed to the anxiety attack)
Stopped medication : Still on venlafaxine, 150 mg
Number & type of consultants seen to date: Internal medicine, neurologist (who diagnosed me), otoneurologist (confirmed diagnosis), and psychiatrist/ psychotherapist to manage anxiety / depression
Diagnoses received (one I’m “running with” first): migraine associated dizziness
Medications used successfully for MAV: Venlafaxine
**Failed medications for MAV:**Zoloft
Non-pharmalogical treatment tried which helped : Not sure if helped migraine but helped my mental health, accupuncture, cbd oil, physical/visual and vestibular therapy
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified : none really
Any hearing loss in either ear : nop
Persistent or intermittent tinnitus and character : intermittent, high pitch on right ear, and white noise on left ear (this started during pregnancy)
Other chronic conditions I’m suffering from : nop
Medication I’m taking for other conditions : none
Any personal history of migraines :just that vertigo episode
Any family history of migraines :parents, siblings, brother has it with spinning vertigo
Any history of ear problems :nop
How did friends, family, and doctors react to your symptoms? : Mhhh good question. My neurologist and psychologist were the best, validating my symptoms and feelings. Psychiatrist I think thought I was getting crazy. My husband was mad at me at the beginning, then very very caring and now seems that we have adopted my dizziness as part of the family and he keeps encouraging me everyday in every aspect of our life. My extended family were very judgmental about me taking an antidepressant and I had to really ignored them in the peak of my crisis. Now they are judging me for gaining weight! I keep trying to ignore them. Now that I think about it, I am furious that they don’t realize how much I have suffered with this condition and that they only judge what they can see. Ok, vent over. :slight_smile:

Today a year ago I felt dizzy for the first time, after pumping. I thought it was the lack of sleep and food (which for sure contributed), but a few weeks later the rocking sensation stayed as part of my life 24/7.
After going through a lot of symptoms, pain, anxiety and depression, alongside other personal and professional challenges, and two meds, I can say that I am living happy and almost symptoms free. Venlafaxine has helped a lot with everything. Currently I am at 150 mg, I think I will stay there at least for 6 months more before I try to titrate down a bit. I might need to take the med for a long time so would like to be on a lower dose. I am still rocking but not all the time and not so intensively. I am pretty much doing all I want to do, I even had a glass of red wine on Christams Eve! And we hosted dinner and I shopped and cooked for all the guests. It is not always comfortable but it is not paralizing me. I try everyday that this condition does not define me, and rather, I am trying to be positive about life so that even if I don’t get back to my 100%, I am not dreading it anymore.
For all of you in the middle of the recovery, please know that it takes time. @flutters said it correctly the other day, it takes as much time as a concussion or brain injury. My vestibular rehab told me that all my symptoms were similar to a concussion, so be patient and kind with you. Don’t think on the things you’ve lost, but on the opportunities this condition provides. I have become more humble, compasionate, thankful, thoughtful, easy going, less stressed, mindful, etc. I enjoy my son and being a mom, and enjoy sleeping. I love eating and taking long showers. I like teaching and hate admin tasks hehe. I’ve gained 10 pounds after loosing 18 pounds due to not being able to eat. So, a normal human being. Thanks to all my friends here that have helped me through the process, particularly @Onandon03, @turnitaround, @flutters, @GetBetter, @ander454.

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This is so positive and hopeful. So happy for you. Really wish you all the best. Well done too x

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This is so great to hear. Thank you for the positive story! And thank you also for your encouragement dating back to my first time on this site. Congratulations and wishing you even further recovery and even more happiness and contentment.

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So glad your still doing well and thank you for your advice on Venlafaxine when i first started it and needed some assurance. Like you its helping me a lot…im still about 70% better.
Keep it up
Jo

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So glad to hear your positive story. They help! I too had a few bouts of vertigo over a few years, starting in 2013. And then in the fall of 2016, it went to 24/7. I couldn’t make it upstairs to the bathroom, couldn’t walk more than half a block, and also lost 30 lbs over 3 months from not being able to eat. And with the help of meds and diet changes (plus no elevators and try to stay off computers) I am mostly back to normal. No red wine for me, and not too much dark chocolate, but other than that, I am okay. My weird med cocktail is little bits of all the best meds: 37.5mg of Venlafaxine at noon, 15mg of Amitriptyline (9pm), 25mg of trazadone and 25 of klonopin at 10pm. They also help with my anxiety disorder which is a first. I’ve been trying to white-knuckle it all my life, but now I’m just accepting that my life is better on meds. Good luck everybody! You will find a way!

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So happy for you! They just started me on venlafaxine and I was nervous but all your posts helped!!!

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Quick update. I developed hives and my neuro thinks it could be the venlafaxine. I am going to change to brand name and try for a month, and if I don’t get relief with my hives, I might need to slowly taper and stop it.
She also asked me if I could
come to speak to his medical students about living/ experiencing MAV. I am happy to do so! :slight_smile:

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Sorry to hear about the hives. Don’t lose heart Dr.Hain thinks 75mg Venlaflaxine is good enough for MAV control. Also you can add a second med if needed. I use a brand called “Teva” for Effexor. Good luck.

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yes, my neuro said that we can lower the dose and see if hives go away. Will see, I am ok though, I feel much in control now, so I can handle this a little better :slight_smile:

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Sorry to hear about the hives, maybe they will settle when you switch brand. Even to taper down to a lower dose might be sufficient. I’m two weeks on 112mg and have noticed a little reflux activity resurfacing… So will observe for a bit and talk to neuro if it persists at visit in Feb.
Worst case I’ll drop back carefully to 75mg as its great for my pain and research what to add to try nail my remaining vest symptoms mainly my ears and wobbly walking sensation. Great opportunity to talk to the med students, I’d love to do this also.
Keep us posted on how you do, best of luck :crossed_fingers::crossed_fingers:

A final question, I’ve been getting increased night sweats (had them at time of month) pre meds but they have increased a lot now, wondering if its meds, as its a common side effect. Do you get them on this med? It could be peri meno for me, I am 46 :thinking:. Thanks!!

I think you’ll find Dr Hain mentions Effexor as best for menopausal women because it helps with hot flushes. Check his site. I’ve noticed if drugs can relieve a symptoms usually they can also cause it. Of course could just be natural progession of the Big M. That morphs, like MAV. I thought over the years it thrown every surprise it could at me. Wrong! After fifteen years of Hot Flushes the day before yesterday I experienced my first Cold Flush. Never knew such things existed, but they do. Quite rare. Well, aren’t I the lucky one, eh.

Same thing I‘ve increasingly discovered. Clear ears = no wobbly walking sensation. I reckon it’s last symptom to quit. These days if my head and ears are clear, I’m good. Ears = balance even more than I ever thought. Helen

http://dizziness-and-balance.com/disorders/central/migraine/menopause.html

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I guessed as much when you first mentioned it. Such a shame. Another brand might help. Probably depends whether it’s the drug or the coating causing it. It’s amazing how brands vary in their other components. Helen

Hi Helen, thanks so much for replying and for the link. It’s true between the big m and mav there are days I just don’t know what’s causing what. If the reflux settles down I’ll stick at this dose for 3 months (only 2wks on it) and see will it help ears and wobbly walking sensation. I’ll ask neuro how long it’ll take for these symptoms to settle but I suspect he’ll say… No idea… I know there are no black and white answers with mav. My ears are super sensitive to noise since early December… Even throwing a few knives and forks into drawers hurts my ears… The joys…
Cold flush… Never heard of it but can imagine anythings possible with meno… Hope you got warmed up anyways. Thanks again

thanks, my main concern right now is that the brand name costs $400 dollars, versus the generic that is like $40. Will see.
re night sweats, i definitively had them at the beginning, for a few weeks. I dont have them anymore. I do sweat a lot during my period though (i am almost 38).
I am hopeful all go well :slight_smile:

Gosh that’s a massive price difference to pay, appreciate the dilemma there. Helps to hear you’ve experienced the sweats on this tablet too and hormonally at periods. Hoping it’ll settle, I’m washing too many pyjamas :joy:… Have a good evening.

That is Brilliant. Spread the word, I will never understand why more of this isn’t done particularly with conditions like MAV where the medics may not ever still anybody truly chronic with the condition because they are housebound. Be nice to think a synopsis could be published on line or wherever for students in other places, but that’s probably too much to ask. Helen

Yes, I am very happy about coming to talk to students @Onandon03

On an update, I started the venlafaxine ER TABLET (not capsule) today, 150mg, to see if hives get under control.

Also, my neuro last week told me that she doesn’t need to see me soon, unless I need to. Same with my psych. So I am discharged I guess, after being on doctors for a year almost.

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Well, that’s good news for you. Here’s hoping the tablet does the trick. Of course different manufacturers products do vary in composition so other brands may not cause hives. I have always stayed with tablet Propranolol taken three times daily because the extended release ones are all capsules, and I don’t do capsules. There’s something in the plasticy outer coating gel that triggers reflux in me, really badly. Best I found was spreading the three doses equally over the 24hoirs as near as possible despite instructions to take before meals. I’ve felt much better since I tried that, less peak and trkugh I guess. Helen

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My friend gets terrible skin outbreaks from brand Effexor (she’s on over 200mg). I’m not sure which type. She’s got PTSD, not MAV. MAV should be an opportunity (?) to keep the doseage low on these things, but I guess that doesn’t work for everyone.

yeah, doctor suggested to stay one more month at this dose, and if hives don’t get better, to go down on dose and re-evaluate. I am still not symptoms free, but they are controlled, so I wouldn’t mind going down to see what happens.

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