Good afternoon everyone!
I’ve had vertigo type symptoms for the last 2 years. It started in the spring of 2017. Since then I’ve had what I consider constant vertigo/disequilibrium type feelings. Some months are better than others, but when I’m in a bad spell, it lasts at least 6-8 weeks until I can get back to my new “normal” which is functioning at about 85%.
Like many of you, I’ve been to numerous specialists (neurologists, ENT, neuro-otologist) the latest diagnosis is MAV.
I’m just having a hard time accepting the diagnosis, I guess. Maybe because the last couple of months have been the worst, and I feel like it’s getting progressively worse😢
I also have some symptoms that don’t seem to match up. Can you get lightheaded (feeling faint) from MAV too? Some Drs think it’s the same as vertigo but it’s not.
Also, My right ear also always feel full and pops. Doesn’t that mean there’s something wrong with my ear?
I’ve had about every test imaginable done- MRI, CT,VNG, bloodwork. I recently just got bloodwork again. Everything was normal except I’m hypothyroid so they started me on synthroid 2 weeks ago. I immediately got a headache when starting that so I’ve been slowly increasing my dosage from 25mcg to 37.5, I’m supposed to get up to 75.
I guess in the end, I have two questions for this group.
-do you think all of my symptoms and progressive worsening can really be MAV?
-anyone have experience or worsening symptoms after starting synthroid? Dr wants to put me on Effexor but said I should give synthroid a chance to work too. I just know I’m getting worse, I’m getting scared that this isn’t something “benign” and that they’ve somehow missed something.
Thank you all for your support!
Good afternoon everyone!
Hi, and welcome
Sorry to read your problems. We are only a support group so cannot offer diagnosis. If you doubt your diagnosis I’d suggest you see a migraine specialist neurologist or a neuro-otologist and if you are concerned it’s something more sinister I’m sure they will arrange MRI and necessary tests to rule that out. Vestibular migraine isn’t uncommon. You should find further info on here under the Wiki section or google a list of symptoms. I do have one bookmarked but cannot locate it at the moment. Seems to have disappeared. I’ll add it in, as and when.
There are alot of symptoms. I doubt anybody matches them all. Full and popping ears is a common MAV symptom. Feeling faint probably much less so but certainly not impossible. I’ve had both.
MAV does change. We say it ‘morphs’ over time. Unmedicated it tends to worsen over time. Mine most certainly did. If you are still in doubt further medical investigations may be in order. Helen
Welcome to the board.
FWIW Yes mine did. It became less episodic and more permanent (quite rapidly).
As Helen says, it morphs. 1.5 years in my condition had a very different profile to 3 months in.
You have MAV if you fit the symptom constellation and they’ve ruled out other conditions.
Is MAV degenerative? I think you have to consider the timeline you are basing this on. For example, I worsened over ~1 year but improved in 4. Different sufferers have different trajectories.
My bet is overall, MAV is not degenerative, but it can be a big struggle for many to climb back out.
Oh I didn’t think of ‘progressive worsening’ in terms of ‘degenerative’ rather is meaning symptoms became more severe as time passed untreated. That’s what happened with me, more than a decade episodic then it gradually became chronic by infilling the clear periods between until it became 24/7. Agreed it’s not a degenerative condition. Helen
Thank god for that!!! X
Thank you all for your replies!
Knowing that it can get worse but not be degenerative is a relief!
I’m sure my anxiety about the whole thing is contributing to it now too.
My neurologist is supposed to call me tomorrow to let me know if I should start Effexor right now. Praying for some relief!
Hi Sarah, so sorry your struggling. I’d say MAV most definitely got worse over time for me. It was almost one year in between onset of MAV and official diagnosis with a preventative. Throughout that year, it was horribly bad with the intense vertigo first, then headaches, then photophobia, then photophobia, then the intense vertigo turned to a constant rocking with periodic vertigo. All of my other symptoms seemed to gain strength over the months. It have since calmed once starting Ami.
I also have felt faint when I have a quick “spin” (vertigo) moment. I get super hot, sweaty and faint. I have not fainted or blacked out however. Hope your call goes well tomorrow with the Dr!
Thank you! And yes, the way you described your faint feeling is exactly what I experienced with it.
I got kind of clammy afterwards, then went back to my usual/regular unsteadiness.
Thanks for the well wishes!