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Mav update- topamax

#1

Hi guys,

I thought I would update as I have not been on in a while…

Well it’s been around a year and half since I’ve had chronic MAV, my symptoms have been- rocking boat dizziness, ping pong ball sensation in head, woozy head, derealisation, chronic ear fullness/pressure, blurry vision, visual auras- bright lights, zig zags, light sensitivity, less frequent headache in forehead and nausea.

I had all the ear tests and mri done and it was ruled that I have Vestibular Migraine. This was hard to accept at the start as I could not believe a migraine was causing these symptoms 24/7

Today I can report I have accepted this diagnosis and have made some good progress with my VM.

I no longer need to lean against the sink to brush my teeth, I no longer need to wear sunglasses at night when I am driving because the car lights hurting my eyes. I can now go for a walk/run. I can now sit outside on the beach. I have gone on holiday, caught 5 flights. I am working full-time.

I believe topamax 100mg a day has given me some of my quality of life back and my attitude to fight for my life and also the acceptance that I do have a different life now and my ability to adapt around this condition.

This illness isn’t what I envisioned my life to be but it has sure taught me some strength and humility that I wouldn’t have attained from any where else.

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#2

Great to read! Sound so like so much progress, and so much strength getting through this.
How symptomatic would you say you’re now? How’s the dizziness?

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#3

Thanks Lucy! Yes looking back I would say I’ve made huge progress. I was bed bound for many months.
My dizziness has changed- before I was like a drunk 24/7 it was so hard to walk or even stand upright, or actually even lying down. Now I get more of a woozy head and derealiastion and then I do have moments where I don’t feel anything. These symptoms normally come late morning, afternoon and night time, when I am tired… I believe the topamax has changed the dizziness to these new symptoms and I would say its a much better feeling… I may increase topamax one more time in a couple weeks after a surgery I am getting and see if it can have anymore positive effects on my symptoms.

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#4

Hi @123isall! This is great to hear! Ive just recently had a relapse and am back to the uncomfortable stage with more persistant migraine I would say since starting Botox.

It is encouraging that you’ve come through this and are now managing better! Do you have tips for the rest of us? (She says sat in the hospital with sunglasses on) :see_no_evil:

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#5

Interesting, that’s about where I am at the moment with my Topomax/MAV.

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#6

Perhaps it’s a step change in the right direction for you. Helen

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#7

hope so xo

#8

yeah it’s funny how it gradually changes from the wonky drunk on boat dizziness to the derealisation… Id take this over that yuck on boat of balance any day though…

#9

Keep persisting and get on a preventative now… or a couple! When this thing becomes chronic you can not just airy fairy hope it will go away, because it is highly likely it will not… Get on one of the meds now x

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#10

Hi Analoo… indeed I am currently on 20mg of Ami and have botox injections. Im having better days it appears!! :grin::grin: this Will be my 4th med now… going upto 30mg soon! I am at the uncomfortable stage atm :expressionless: x

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#11

That;s a horrible stage. I know exactly how you feel! Hope it kicks in soon!! Try add something else if it’s not giving you much results. ami should work more quickly than other preventatives. I took it and it helped the next day lol but I had horrible side effects so couldn’t stay on…

#12

Do you feel like your head and eyes are in a bubble Analoo? My head and vision feels floaty and spacey! My eyes feel physically strange not sure if the gabapentin causing that

#13

I really think this is example of what happens once meds are working, I’ve found similar myself.

Yep, wholeheartedly agree. Once it goes chronic it’s an entirely new ballgame and one needs to jump on it hard. Helen

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#14

yes had all types of visual problems, whirlpool, visual field moving, floating, auras- zigzags colourful spots… horrible… lots have cleared up on topamax now

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