Hi everybody, my name is Diana, I’m 30, from the US, have 2 kids (which makes this even harder) and I’m now part of this rocky ship.
Here’s the background:
-i was diagnosed with migraines with no aura in 2014, they are the typical “pain on one side of head that get better with imitrex” type of migraines and usually only get them during or right before my period.
-early 2016 I started having this weird swaying feeling only when I stayed too still, went to the dr, all test came back normal and by the time my dr thought of sending me to a specialist the feeling has gone away so nothing wa done.
-August 2017 started having ringing in my ears sometimes accompanied with clogged feeling, was prescribed nasal allergy spray but that didn’t do much
-December 2017 the swaying, rocking feeling came back and was sent to the ent, as soon as I said I had migraines she got fixed on the fact that it was my migraines causing it and told me to find a neurologist, in the mean time sent me to vestibular rehabilitation which helped and the swaying feeling went away
-February 2018 stablished care with a neurologist who ordered MRI which came back clear of any abnormalities, he didn’t seem too concerned about my migraines since they seemed to be hormonal but still started me on prevention medicine (trokendi) …it gave me bad acid reflux so I stopped it
-rest of 2018 went normal when it came to migraines and balance problems but was diagnosed with severe endometriosis after emergency surgery (telling this cause is kinda relevant) and in July 2018 I got the mirena iud, after the mirena I started getting more migraines but they assured me it was my body getting used to it and since it started working so well for the endometriosis issues I’ve stuck with it.
-December 2018 the swaying rocking sensation comes back, this time it’s not only when I stay still, I can feel constantly through the day no matter what I’m doing and the only thing that seems to help is driving (weird) …I go back to the ent and she order a VNG, hearing test and more vestibular therapy.
Thw hearing test showed no loss, The VNG results were very confusing or at least the way that she explained them to me was, she said I showed problems in two variations (I swear this is how she explained it) and that one of them was mostly because of my migraines and the other variation was because of inner ear problems, my mistake was getting scared and not scaring for clarification.
So here’s the current problem, the migraines are only getting worse to the point of going to the ER 5 times back in February-March because of the unmanageable pain, I had a ct scan done, blood work and even a spinal tap and everything came back normal, my neurologist started me on aimovig injection but it’s only being 3 weeks so I cant tell yet if it’s going to work, I have an appt at the end of April with my Gyno and I’m gonna ask her to get the mirena out, BUT the balance problem hasn’t resolved since December, I’m always swaying and rocking, sometimes it feels worse than others but the feeling is ALWAYS there. Last week I went back to the see the ENT cause now I’m having ringing in my ears again and since those bad migraine episodes in March I’ve been feeling pressure in my ears and she told me it could be a variation of Menieres and again told me about the variations that the VNG showed but didn’t go into detail, told me to start Valtrex to see if that helped but only gave me 20 pills and for what I’ve seen here I would need way more than that.
I’m more confused than ever after that last visit, I did some research since I don’t feel like she’s the dr for me and now I have an appt at the Tampa bay hearing and balance center which has really good reviews but as of right now I’m just so scared, my mom hasn’t Menieres and I’ve seen her suffer, I’m always so anxious waiting for the bad vertigo attacks like the ones she gets but to be honest the only time I was spinning was when I had the VNG done and they put the hot air in my ears (I knock on wood and hope to never be as dizzy as that thing made me) …
I lost track of everything I wrote . I don’t even know what my question is, but what do you guys think, with your experience does this sound like a “variation of Menieres” like she said or does this sound more like MAV.