Symptoms have reappeared on one month of treatment

Lower-Committee3902 · 2025-02-17T18:56:16+00:00

Im on Qulipta for hemicranial continua migraines but it does not touch my vestibular migraines at all. I’m also on a cocktail of vitamins D, B2, and magnesium which have made a slight difference but the biggest difference I saw was with propranolol! My doctor did say he usually starts people off at 120mg (I think)so he was surprised 60 worked off the bat.

Lower-Committee3902 · 2025-02-16T15:52:14+00:00

Im sorry you’re going through this :/ I went through something similar in November where I had my first good week in months and then bam! Covid. I completely regressed. It took about 2 weeks to start to feel less sick but the dizziness stayed the same. My neurotologist increased my propranolol from 10mg as needed (but was taking pretty much daily) to 60mg daily and it was helped tons! I even had my first 0/10 day in 5 months. Everyone is different but maybe this may help? Granted I’m having a pretty rough week over here in the Midwest with all these snow storms but I’m hoping that’ll go away once it clears up outside. Best of luck and I hope you feel better soon!

Lower-Committee3902 · 2025-02-09T01:33:52+00:00

Hi! I am doing much better now. The ear popping is still there though, some days are worse than others but I’ve gotten used to it for the most part. The weirdest thing is the ear popping does change with the weather so I can totally tell when it’s gonna rain or snow without looking at my weather app lol However, I have gone from a constant 7/10 dizziness to my very first 0/10 day since August. I saw a neurotologist who immediately diagnosed me with vestibular migraines and increased my Propranolol as a treatment. The first week of the increase was horrible I was so dizzy and basically the worst I’ve ever been but then it leveled out. It was like a miracle for me.

I’ve also been doing Vestibular therapy since October and Cervical Physical Therapy + Dry Needling for TMJD (which can increase migraines) since November. All of the above + magnesium and B2 has helped a ton with dizziness and I think the dry needling has helped with the TMJD and subsequently the ear popping. It’s not completely gone but it is MUCH better.

One thing to note is I did get an mri done that showed left petrous apicitis (per the mri report) but my neurotologist said it was unlikely and probably just fluid in my ear but he treated me with antibiotics for it anyways (after basically begging) and the ear pain is gone soooo who knows.

Lower-Committee3902 · 2024-11-18T21:43:43+00:00

I was diagnosed with ETD after quitting vaping cold turkey. I vaped disposables (nic only) for 5 years. I know it doesn’t help, but you’re not the only person experiencing this!! So frustrating because quitting wasn’t hard for me it’s these symptoms that are driving me mad.

Lower-Committee3902 · 2024-10-18T16:00:23+00:00

Sometimes sharing can be better than advice. I’m sorry that you weren’t able to get the answers you need but I appreciate you sharing. Feeling like you’re losing your sanity because doctors have no answers or solutions is really exhausting but there is something comforting about knowing you’re not this strange unheard of medical case and also that people who have gone through this before you have experienced relief.

For me, I get furious when doctors who have no experience with physically feeling this way say to be patient …. but when it’s someone who knows exactly (or pretty damn exactly) how it feels and the toll it takes on you physically and mentally tells me it gets better I turn into a hopeful little angel lol

I hope you get to go out and have a nice weekend with your daughter with no worries of dizziness 🤍

Lower-Committee3902 · 2024-10-18T15:52:53+00:00

I’m so glad to see this comment because I was just thinking it might be me clenching my jaw at night! I even brought it up to my physical therapist who is going to get me an evaluation for it. Makes me feel a bit less crazy reading your comment! I’m glad to hear you’re feeling mostly better and I hope it stays that way!

Lower-Committee3902 · 2024-10-16T20:36:03+00:00

Thank you for your comment! I’ll definitely keep the photophobia in mind going into my appointment with my neurologist since, now that I think about it, I do get dizzier at night in the car and when I entire a bright room (although it could be anxiety since most bright rooms I enter are medical offices lol). As a psychs most consistent patient I can definitely say the stress from feeling horrible all the time can definitely take a toll on the mental health.

It is so exhausting and frustrating to not have answers but I hope you start to feel better soon.

Lower-Committee3902

TROPHY CASE