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Renee’s MAV journey

Thanks so much for your reply. It definitely gives me hope. I’m on 25mg and only about 15-20% better compared to the worst days before I started medicating. Very frustrating. I need to persuade my doctor to increase my dose but she doesn’t seem to be familiar with the protocol used in the UK and US.

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Hi everyone, just wanted to come to my diary and give an update. I am on day 10 of nortriptyline. Amitriptyline has been a life saver for me and I truly think it crushed an average of 80% of my symptoms. However, the weight gain really started making me sad. Seemed no mater that I did to counteract it, it still piled on.
My Dr switched me to Nort after I mentioned the toll the weight gain was taking. Switching from Ami to Nort was an even exchange (mg/mg) and I felt no different, so NO BAD affects whatsoever. Now here’s the bonus that I did not see coming: my headaches on day one and for the past 10 days have been reduced incredibly! I am one of the MAVers that lived with chronic head pain on top of all the other horrible symptoms of MAV.
I cannot tell you what a game changer not having what feels like a vice on my cranium is!!!
I still have the occasional “bad day” but those are not even bad… just I am “off kilter” more so than most.
I am just thrilled guys and wanted to give you that update… just look how far I’ve come! My wish for you is that you find hope in this and it helps you to keep fighting!

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Ah Renee I am absolutely thrilled for you, congratulations for getting this beast of an illness into a headlock- it takes nerves of steel and pure grit to keep going with meds not knowing what the side effects will be and whether they will give you the result you are desperately seeking so hats off to you for your perseverance and endurance. It gives hope to us all…thanks so much for being on this forum and for sharing your experiences so that we can all learn from them.
Best wishes
Mav

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So nice Karen!! :sparkling_heart: You know, that’s exactly why I wrote the post the other day about everyone here being so amazing. We are so much stronger than we know or ever knew we could be, this MAV business sets the bar so high and I’ve never been much of a hurdler! :blush: MAV is humbling and has reminded me to be grateful for every single tiny good thing in my life. We all get complacent in life, I think it’s part of being human… this past year and half has made me stronger and even more grateful.
I count you and everyone here as one of the many blessings I have, since without all of you… I just don’t know where I’d be :purple_heart:

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Let me how is nortriptyline on weight gain. If it’s not bad I will swap with Amitriptyline.

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Will do @GetBetter, Dr Goebel did mention in an article that he prefers Nort for this reason so I am hopeful!

A Personal Spin on Migraine-Associated Vertigo Treatments: With few formal guidelines, otolaryngologists use trial and error - ENTtoday

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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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