Can this really be MAV?

Good afternoon everyone!
Iā€™ve had vertigo type symptoms for the last 2 years. It started in the spring of 2017. Since then Iā€™ve had what I consider constant vertigo/disequilibrium type feelings. Some months are better than others, but when Iā€™m in a bad spell, it lasts at least 6-8 weeks until I can get back to my new ā€œnormalā€ which is functioning at about 85%.
Like many of you, Iā€™ve been to numerous specialists (neurologists, ENT, neuro-otologist) the latest diagnosis is MAV.
Iā€™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 itā€™s getting progressively worsešŸ˜¢
I also have some symptoms that donā€™t seem to match up. Can you get lightheaded (feeling faint) from MAV too? Some Drs think itā€™s the same as vertigo but itā€™s not.
Also, My right ear also always feel full and pops. Doesnā€™t that mean thereā€™s something wrong with my ear?
Iā€™ve had about every test imaginable done- MRI, CT,VNG, bloodwork. I recently just got bloodwork again. Everything was normal except Iā€™m hypothyroid so they started me on synthroid 2 weeks ago. I immediately got a headache when starting that so Iā€™ve been slowly increasing my dosage from 25mcg to 37.5, Iā€™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 Iā€™m getting worse, Iā€™m getting scared that this isnā€™t something ā€œbenignā€ and that theyā€™ve somehow missed something.
Thank you all for your support!

2 Likes

Hi, and welcome

Sorry to read your problems. We are only a support group so cannot offer diagnosis. If you doubt your diagnosis Iā€™d suggest you see a migraine specialist neurologist or a neuro-otologist and if you are concerned itā€™s something more sinister Iā€™m sure they will arrange MRI and necessary tests to rule that out. Vestibular migraine isnā€™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. Iā€™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. Iā€™ve had both.

MAV does change. We say it ā€˜morphsā€™ 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

1 Like

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 theyā€™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.

2 Likes

Oh I didnā€™t think of ā€˜progressive worseningā€™ in terms of ā€˜degenerativeā€™ rather is meaning symptoms became more severe as time passed untreated. Thatā€™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 itā€™s not a degenerative condition. Helen

3 Likes

Thank god for that!!! X

4 Likes

Thank you all for your replies!
Knowing that it can get worse but not be degenerative is a relief!
Iā€™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!

1 Like

Hi Sarah, so sorry your struggling. Iā€™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 ā€œspinā€ (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!

1 Like