Hi all, it’s been a while since I’ve been on this site. I wanted to check back and say that I have gone from a miserable 10% functioning about a year ago to 80-90% on my best days now! I’ve made a Youtube video chronicling my entire story because I felt it was waay too long to post here, and I also wanted to reach others who don’t know about this forum. I tried to make it one of the most comprehensive out there, including what lead up to my condition beginning, tests I had done, EVERY symptom I had in the book, preventatives that worked and didn’t work for me, acute treatments that worked and didn’t work for me, my struggles and how miserable this condition is at it’s worst, but also my triumphs and tips for getting through it, including finding the right doctor and many other things. Please give it a watch, I wanted to come back and share this with you all because I remembered when I was at my worst and on this forum the posts that helped me the most were the positive ones and success stories and I want to encourage people to come back some day and share their story as well WHEN they all recover! Thanks!
Thanks for posting this video. Sounds truly horrible what you went through. I’m glad you’re feeling better.
How is your tinnitus these days? I’m struggling with the prescribed medications because they all seem to spike my tinnitus badly.
Thanks I appreciate it. My tinnitus is pretty much gone, I only notice it sometimes at night if I’ve had a day where I listened to a lot of music or talked a lot on the phone. Can I ask which meds make it worse for you?
Thank you so much for sharing this story with us. I have one question, did you have head pressure at the back of the head ? And if yes, did any of the medication help you with that?
I’ve tried these:
- Venlafaxine, Cymbalta, Lexapro
I’m about to try a CGRP medication next week. I had similar symptoms to yours (certainly, not as bad though, and I don’t have vibration dizziness as you described it), but my tinnitus is pre-existing from genetic high frequency deafness.
I appreciate it. Yes I did, it felt like someone pressing down in the back of my head at the base of my skull, all the way to the top of my head. I wanna say that Venlafaxine helped about 50% with this and a Topamax/Botox combo did the rest. I do still get this feeling occasionally though, triggered by changes in weather.
Thank you! Im on amitriptyline now, i guess ill try topamax too since it helped you a lot!
I know a lot of meds can worsen symptoms when you first start taking them, and from my own experience Amitryptyline worsened my tinnitus SO much that I had to stop it. Mine seemed to fade away when I began Venlafaxine. I’m curious, what CGRP med will you be trying? I have 3 doses of Aimovig sitting in my fridge that I never got around to trying because I didn’t feel like I needed them
Yea I think that’s a good plan it really it was one the most successful preventatives! Just have a plan with your doc about titrating up because it takes a while to get to 100mg and once you get there be patient, it still took about 3-4 months for me to start feeling relief
Hey @Jumpmax23, what an inspiration you are!
Thank you @Naejohn! I remember you were one of the first ones to comment back on my posts and help me through some of my symptoms almost a year ago so it means a lot and now trying to do the same for others, hope you’re doing well too!
Oh Max! this made me smile so big! I’m incredibly humbled to be part of your healing process… you’ve grown so much, learned so much and come so far I am well too! I just got on a bicycle for the first time in 2 1/2 years and didn’t fall over or crash! Keep doing what your doing and giving hope to others… it feels great to give back. Take good care!
2 posts were merged into an existing topic: Emgality for Vestibular Migraine
Please don’t get off Topic guys. Discuss that elsewhere.
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This is so amazing to see! I had my very first Vestibular migraine a little over a year ago after the birth my daughter. It lasted about a month with vertigo and dizziness. Ended up getting a lot of tests done (mri ent and all that) and it all came back clean. Was okay for a bit (although I always had a off balance feeling) but unfortunately since April of this year I have been having awful symptoms. Vertigo spells, dizzy 24/7, sensitivity to light and just having a hard time functioning . It’s been awful. I will be starting medication and pray for relief soon. So this video is just what I needed to see. Thank you for sharing your journey!