Jrey’s Vestibular Migraine story/questions

Hello all, I am new to this community/platform. I was recently diagnosed with vestibular migraine but have been dealing with rocking dizziness and migraines since February. Driving is the only thing thatmakes the dizziness go away. I also experience ear pain, pressure, and tinnitus in both ears… I am a musician so I think the tinnitus was possibly from loud noise exposure but I’m not too sure. It was never loud enough to be noticeable at all until recently. I tried nortriptyline and it put me over the edge causing the tinnitus to be worse and now noticeable in both ears. Before, I only notice tinnitus in the left ear. Nortriptyline also made my symptoms as far as dizziness, like I was on a boat much worse. I couldn’t continue with the medication so I had to stop unfortuantely. I am sensitivite to medication and I am on my fourth session of VRT but haven’t noticed any difference yet. I also haven’t noticed any food triggers. I do suffer from environmental allergies, sleep apnea, and chronic back pain. Curious if anyone has experienced relief or success with VRT? Any medications that worked better than others? supplements? I saw a naturopathic doctor who thinks I could be suffering due to a gut problem? Leaky Gut possibly… I was so confused when he mentioned this and nothing actually related to vestibular problems. I have changed my diet and am avoiding all food allergies but haven’t noticed any difference yet. I don’t have any added dizziness looking at screens, reading, or typing but getting up out of bed or sitting up from the couch after being there awhile makes my dizziness extremely noticeable. It’s like I have to focus really hard on other things not to let the dizziness give me a random panic attack. Being indoors, in enclosed areas also makes my dizziness much more noticeable.

Hi and welcome. An interesting story yours. Tinnitus is very common generally so I would be unsure if a musical connection but maybe. With conditions of this sort more often than not it’s impossible to ever establish a definite cause or connection. I am not a medical person just a fellow sufferer but I have read many examples that indicate the tricyclic antidepressants, Nortriptyline being none, often cause increased tinnitus so your comment was no surprise. When it comes to VRT please do use the Search facility where there is much information and many many related threads. Please pick up one of those rather than start afresh. General consensus with VRT is that it makes MAVers far worse so should only be attempted once the condition is well controlled with drugs and other lifestyle changes is diet etc details of which you will find in the Wiki Section of this site. If you use the Search facility you will find by inserting any key word, for example Leaky Gut, supplements etc a wealth of existing information. To start a new discussion contribute to an existing thread and that will bring it to top if the pile under ‘Latest’ and you should receive comments. Have a read around using the Search (magnifying glass). In fact test it out with on a boat and you will find you are far from alone. Helen

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Welcome!

I am a musician and no amount of noise gave me tinnitus. I remember being in so many loud rehearsals. Tinnitus for 2 days after sometimes. But nothing chronic.

Whatever MAV is, it certainly brought the chronic tinnitus!

But then again we’ve had a constant user of loud headphones develop MAV on here before, so there is an outside chance it’s related. Who’s to know?

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You can find all these answers in the archive. Take a look at the Big Med Poll. There is one for Supplements too.

yeah I agree. It’s hard to tell… I’m going to physical therapy and they think it might not even be related or caused by vestibular problems. They’re skeptical of what the root cause of my vestibular problem, migraines, and tinnitus is from. They said “inflammation” but they can’t figure out what is the root cause because I have many inflammed areas: neck, back, hips, pelvis, jaw, etc.

Welcome Jrey! You have found a good place here :slight_smile: I totally agree that driving makes the dizziness go away and I’d love to know exactly why that is. People on this site have various theories. Friends and family who know I have this dizziness problem always look worried when I say “I’m not feeling good so I think I’ll go. I’ll be much better when I’m in the car.” They feel they need to offer to drive me!
Be kind to yourself and try and get extra sleep. That ‘focussing really hard to not let dizziness give me a random panic attack’ takes a lot of brain energy. It’s all very tiring. I find sleep helps a lot. A phrase said to me by an ENT specialist has always stuck in my mind “a disequilibrium of the vestibular system reset by sleep”.
Things WILL get better for you over time as you find the strategies that work for you.

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I am also a musician and loud music is very well known and well researched as a cause of tinnitus.

Sure, but also a cause of chronic vestibular problems? The inner ear is one organ. The combination of vestibular and auditory symptoms suggests a common aetiology, even more so if they came on at roughly the same time.

yeah I imagine they’re related. When I got a hearing test my hearing was actually pretty good according to the ENT I saw. I also got a VNG and my ears are ok on that end. The ENT mentioned that wisdom teeth or TMJ could cause tinnitus as well due to inflammation. Any medications that have helped you and your dizziness? Rocking dizziness and tinnitus are both 24/7 for me. I tried Nortriptyline but it actually made things a lot worse and I couldn’t get passed one week of the side effects. My doc wants to put me on Effexor but I’m a little worried about the side effects as I am sensitive to meds in general. May I ask how your symptoms started?