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Looking for some stories of hope!

Recently diagnosed with MAV after the birth of my first child. I am really struggling to care for her…as many of you know, sometimes the hardest movement is head tilts and looking down…which is basically every time I dress her or change a diaper. I’ve noticed some changes in my symptoms but not one day without them…this feels like it will never end. I am trying to still work, but it is a struggle. I long for a day with no dizziness…is it possible??

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Yes, absolutely. It can be a long road, but it’s doable.

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Welcome to the board Nicole. Sorry to hear you are suffering.

The short answer, I believe, is YES! The rub is it can take some significant time to settle down, but with the right treatment things can super improve!

Have you seen an oto-neurologist yet?

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Yes, I have. I was diagnosed with VM and went through VRT for 7 weeks. Now my vestibular testing seems normal, so he acts confused as to why I am still dizzy. But I know I am still in the midst of migraine…I can feel it. Shaky legs, twitchy, thumping in my head (whichout actual headache) and tons of head heaviness. He tried to put my on topamax, but I just kept losing weight so now I am waiting for an appt with a neurologist at the end of the month.

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So like most people who’ve hit this, it’s a trial and error job to find the right protocol.

My personal opinion is pay attention to the 6C’s diet, especially chocolate and caffeine and look at the anti-depressants if Topomax doesn’t work out.

You’ve got to do everything to get those migraines under control.

Consider yourself a soldier in battle … it will get easier, but you have to really fight this with all your being.

There are loads of people on here with good advice.

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Thanks James. So strange how I have never had a migraine and then BOOM.

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I had the same experience but for a different reason. Something physiologically has changed … I don’t think science can tell you what yet.

But given it was your birth of your child, it sounds like it’s a matter of recovery from a one-off hopefully! We’ve had quite a few post-partum MAVers on here and I’m sure they will be more than happy to share their experience.

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It’s not uncommon for VM/MAV or classic migraine to start post partum. Quite a definite pattern actually. I’ve a friend now over 80 who started classic straight migraine after the birth of her first child. She’d never had one before. She never tried preventative meds, hers continued and stopped totally as soon as she hit menopause which infers a strong hormonal link. Her daughter is currently repeating the pattern. Helen

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hey! i am a fellow postpartum mom. Never had this until 4 months after the birth of my son. Its been over a year now that I started venlafaxine (now 150mg). I still feel the rocking sensation when sitting still or lay down. Dont feel it otherwise so I am hoping that it will slowly die down. Talk with your neuro about a preventive other that topomax. And if you need to talk about patience with a little one, just pm me! It is hard and it takes a lot of will to be strong. Things I did was:
trained baby to sleep at least 8 hours at 5 months old
magnesium
exercise
accupuncture
psychotherapy
and just keep going
I think venlafaxine calm down things for me, but you can start with conservative approaches.
Sending healing thoughts

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I don’t have a hopeful story YET but as a newbie to this rocking/spinning world I know how I feel. My youngest is 5 and somehow that makes me a little lucky since she’s more independent now but still.

Im glad you find this forum, it’ll make you feel less alone, the people here is amazing and their experience and stories give out hope.

I pray we all find whatever it is that’s going to work for us and hopefully one day we can go back to having a normal life

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Hi and welcome to the forum. Like you I became dizzy for the first time post-partum. (I recovered but became dizzy again four years later after some surgery).
I haven’t got a success story to tell yet as I’ve only started medication in January but I wanted to tell you how much I sympathise, I remember how tough it was to look after my baby when I was dizzy… be gentle with yourself, rest when you can and ask for help from people around you.
regarding topomax I have read several times it’s not the easiest of migraine preventives to tolerate, maybe ask the neurologist to try an antidepressant preventive like Amitriptyline or nortriptyline.

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Welcome to the forum.

If there one must read post for newbies this will be it
https://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244

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Hello, @NMB. I see that you’re in Missouri. @Naejohn is in St. Louis and found a doctor that she really likes. She can tell you more about him if you’re on that side of the state.

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I am in St. Louis! and would LOVE his/her name. I am not the biggest fan of my doc right now!

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@Manatee, Anna! Thank you so much for tagging me!
Nicole, welcome to the forum! So sorry you’ve been struggling, it truly is a horrendous disorder / disease!
I am so happy your here and that I can share my Dr info with you. We have all been in your shoes to varying degrees, so you aren’t alone in this fight. I may just have an uncanny “hero worship” view of my dr since he was the one and only (after a year of pure hell) to diagnose what was really going on with me. I had been to countless Drs, with intense testing of every sort, brain MRIs, EKGs, Caloric, VRT and VNG and the list goes on.
Dr Goebel is the director of the Dizzy and Balance Center at Wash U and Barnes. He’s also a Professor and who has published many papers, books, articles all over the world with his research of Vestibular Disorders (specifically Vestibular Migraine).
I could not have found a better man to be my advocate, I feel blessed to be in his care. Here is his contact information: Joel Goebel
Also, since I’m here and you need to hear some positivity… I began my “healing journey” almost one year to the day that MAV stole my joy, my independence, my hope, my world. It has now been 5 months since I first met Dr Goebel and am consistently 80%-85% better! I even have 90% days! I have some “off days” that aren’t great, but those are pretty rare. I have some “off moments” on my great days, it those are brief moments. I can do just about everything that I could do pre-MAV! I know where your at and know the helpless, lonely, defeated feeling all too well. There is hope, I am walking living proof of that! It’s slow progress and doesn’t happen overnight but as we all know with this MAV journey, we have a different perspective of time. We know healing comes slow, but it absolutely can come! Hang in there and keep us updated. Feel free to message me anytime if I can help! Renee’

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"Consider yourself a soldier in battle … " is a great way to describe this journey.

I do hope that your neuro-otologist can help you. Meanwhile, ask anything and share what you want to here - there is a lot of experience and knowledge that you can tap into on this forum.

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I can sympathise as, although a mum of a 17 1/2yr old and had MAV for the last 4yrs, i’m in the time of my life where we want a baby and it scares the hell out of me to come off my meds to get pregnant and not know how my MAV will be during and after birth.
After trying the diet restrictions which I believe did get rid of the worst for me, and did get me back to work. I’ve been on the Nortriptyline for a yr & a half now and has been increased gradually from 10mgs to 125mgs. It wasn’t until I started taking Gabapentin that they worked and my symptoms are almost gone. I’d say it’s definitely a combination worth a try.
I wish you all the best Helen x

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