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Renee’s MAV journey

I’m watching that, too. Keep us posted.

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So happy for you. Your optimism and cheery attitude sure is refreshing. I look forward to reading your posts as they are always filled with your sunny happy disposition. It never fails to bring a smile to my face.

I hope you don’t mind if I ask a few questions to understand this a bit more.

Do you always feel 20% of the symptoms, but despite these symptoms you are able to function normally? Do you feel like the remainder of the symptoms will eventually go away with more time - is this the expectation? Since there is no REAL guide on how to up titrate the medication this is so confusing. Like for blood pressure medication there is a target goal but in this case kind of seems like anything goes.

(I hope it’s okay to ask questions on personal diaries - Ionno if I’m breaking any rules, sorry)

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Hi @Bebop! Your reply sure made me feel good! Thank you! I am truthfully a happy person by nature… but I will say that for a year, MAV stole that from me. How could I be happy when I truly felt like my life was over, but not over since I’d have to do it all again another day and I didn’t have the strength to go another day. Hard to even describe how much it takes from you.
But! I have endured and I have overcome so much! :raised_hands:t2:

No, actually and surprisingly I don’t always feel 20% of the symptoms. Today for instance: I woke up a tiny bit crummy with a lot of head pressure (weather change day) and then my coffee pot shot craps, :flushed: so my routine was thrown off! I would say until about 11, I was feeling 70% “normal”. After the rain blew through and my head cleared up I spent the rest of the day a solid 90%!

I don’t expect that the remainder will go away. My Dr says “you have migraine brain and will always have migraine brain”. So I know I’ll always have challenges but if this is as good as it gets… I’m honest to God Happy! If I improve further, it would be an unexpected blessing. :sparkling_heart:

I have such high hopes for your mom Bebop! I hope she knows how much we are all pulling for her and that she can one day come here to celebrate her healing with us! :pray:

James will tell us if we are breaking any rules, but I do think your questions are so relevant for all to hear.

Thank you for your comments and questions. I am an open book and want to help as many people as I can… I told my husband that I will be on this forum for the long haul, even after I’m healed. I want to give back in any way I can in hopes of helping anyone with this dreadful disorder. Feel free to message me also any time! :purple_heart:

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This is great news and also interesting because I assumed that Ami and Nort were so similar that they would behave the same for a given person. It’s good to know that one might do more (in your case, reduce headaches) than the other and that it might be worth it for someone to try Ami if Nort doesn’t work, and vice-versa.

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Agreed Anna!
I expected that Nori may be lesser “potent” than Ami and was just hoping I could contain my symptoms and maybe help me out with the weight gain.
I most certainly have been surprised! I feel as though the symptoms are being contained as well and maybe even some more slight improvements over the past 3 weeks.
One thing I wanted to report is that yesterday was the first absolutely headache free day I’ve had in probably a decade! As noted before, I’ve always had headaches (like my daddy), so I just have lived with them so long that yesterday almost felt strange that I didn’t have one! :tipping_hand_woman:t3:

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6 month Dr visit update edited into my diary above :smiling_face_with_three_hearts:

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You’re so awesome! :smiling_face_with_three_hearts:

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Share you sentiment…cheers to a new normal !

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Glad you are doing so well. It just goes to show how MAV can be relatively easily brought under control within about 12 months of medication in a positive thinking person who obtains an early diagnosis and is fortunate enough not to be hypersensitive to the preventative offered. Your detailed write-up will certainly give others some indication of minimum timescale required. I couldn’t imagine anybody accomplishing such progress in much less time than you’ve taken, It must be pretty speedy by MAV standards. Hope it continues for you. Sure it will. You don’t mention it but can we assume you are still on The Diet? Were you given an indication of if or whether you will eventually be able to get off the medication at some stage in the future or has that been left in the air for the time being? Helen

Love you Emily! :sparkling_heart:

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Hi Helen! It’s absolutely amazing to me that I haven’t been in a bad way with the medication. In the “before”… I couldn’t take a child’s dose of antihistamine or drink liquor at all since I was so sensitive to everything it seemed. I just knew I would struggle with the medication! I know so many people with MAV think they can’t do it because they’re also “med sensitive” but in my case anyway, I’ve done incredibly well.

Definitely! I talked with him about that actually. I have eliminated everything on the list he gave me for 9 months without fail (except twice I had yeast rolls at a dinner out… wow we’re they good!!!)
I told him I couldn’t possibly know which food May be a trigger since I’m too scared to try any of them :joy: He said once I have further control on the medication, we could start easing those foods back in. I’m amazed I’ve gained so much weight with the diet limitations I’ve had :blush:

Not really. He did say that if we get good control at the 75mg and stay stable there, we could go back down to 50mg to see if we can maintain symptom control at the lower dose.

He seems very happy with my progress and I am too. I have bad days still but even the bad ones are nothing like the “good” days before… I can still function with relative ease and 99% of the time the next day I am back to good :blush:

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@Naejohn you are such an inspiration …your story has always given me hope :heart::heart:

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It is still such early days to think of reducing meds and reintroducing food triggers I guess. I think this hormonal-linked stuff can prove stubborn to shift. It wouldn’t be worth trying to hurry it. Just wondered if the subject had been mentioned. That’s all. Best to be grateful for what you have which you most obviously are. Helen

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Hello lovely!!!:purple_heart:

So pleased to read this! You are doing so well! I couldn’t be happier for you! You deserve this my friend and I am cheering you on all the way :kissing_heart::two_hearts:
XOXOXOX

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Hi all, thought this abbreviated timeline of my VM experience may help someone:
My personal timeline for sustained relief of symptoms: rotational vertigo / dizziness / photophobia / phonophobia / hyperacusis / tinnitus and a dozen additional awful symptoms.
• 1/9/2018 VM struck (my full 11 month long horror story above)
• 12/4/2018 began titrating Amitriptyline to 50mg
• 3/2019 all symptoms were showing vast improvement although the tinnitus disappeared completely within the first month.
• 5/2019 more improvement for all symptoms to this point. I would call this my new baseline period. Very stable with the majority of days 75%- 80% “normal” with a couple days a week of “not so good” days.
• 6/2019 switched to Nortriptyline 50mg to help alleviate some of the rapid weight gain of Ami. This med change helped tremendously with the lingering headaches.
• 9/2019 increased Nortriptyline to 75mg in hopes of getting more control of the headaches and lingering mild dizziness. This has helped tremendously.
• 10/2019 (Current) very stable / consistent symptom control with only the random day thrown in of unwanted head pressure, headache, ever so slight balance issues. Usually this is due to weather change or overexertion.
Overall, I would say at this point I am living a very normal life. My “new” normal is different than my “old” normal however; I live more cautiously and let me tell you… this new normal is not a bad thing! So I have to be more cautious with how quick I bend over or roll over, I have to remember that spinning in my desk chair like a little kid is not appropriate behavior, I won’t be going on a cruise anytime soon or riding roller-coasters.
We’ve all read here that improvements are so slight and cumulative, in my case that is exactly true. There never was an “aha!” moment that any one symptom improved. I liken it to watching a child grow… you don’t “see” it happening until it happens and in retrospect.
Patience is key.
I also think that if somehow you can find a way to be optimistic during these dark days, you will improve your chances of healing and the time it takes to heal. There is no “pill” for this. You will have to dig deep, find faith and courage. Tell yourself that you will prevail! Mind over matter sounds cliché but I place a lot of faith in “what you believe… you will receive”.
Those are my deep thought moments for today :smiling_face_with_three_hearts:Hope this helps someone else who needs to see proof of a changed person with VM.

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Two year update edited into the main diary post above :raised_hands:t2:

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Great that you could write your Success Story up diary-style. I so wish more people could. It’s the best way to leave a legacy for future comers.

So to recap it’s taken two years to get you somewhere back to previous function and that’s including obtaining prompt treatment from a specialist who recognised your condition, prescribed Amitriptyline, supplements etc all of which you were able to tolerate. That must be considered Fast Tracked for MAV I’d imagine. I know you subsequently switched to Nortriptyline in an attempt to limit weight gain, can I ask just for the record how much you are still taking and whether there is yet any talk of you coming off it in the future. Helen

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This gives me so much hope! Working my way up on nortriptyline and having some rough days. Thanks for the update, I can’t wait until I have updates like this!

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Yay yay yay!!! :heart: So happy for your amazing progress

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Here here! Me, too! So happy for you.

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