Good afternoon everyone!
Iāve had vertigo type symptoms for the last 2 years. It started in the spring of 2017. Since then Iāve had what I consider constant vertigo/disequilibrium type feelings. Some months are better than others, but when Iām in a bad spell, it lasts at least 6-8 weeks until I can get back to my new ānormalā which is functioning at about 85%.
Like many of you, Iāve been to numerous specialists (neurologists, ENT, neuro-otologist) the latest diagnosis is MAV.
Iām 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 itās getting progressively worseš¢
I also have some symptoms that donāt seem to match up. Can you get lightheaded (feeling faint) from MAV too? Some Drs think itās the same as vertigo but itās not.
Also, My right ear also always feel full and pops. Doesnāt that mean thereās something wrong with my ear?
Iāve had about every test imaginable done- MRI, CT,VNG, bloodwork. I recently just got bloodwork again. Everything was normal except Iām hypothyroid so they started me on synthroid 2 weeks ago. I immediately got a headache when starting that so Iāve been slowly increasing my dosage from 25mcg to 37.5, Iām 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 Iām getting worse, Iām getting scared that this isnāt something ābenignā and that theyāve somehow missed something.
Thank you all for your support!
Hi, and welcome
Sorry to read your problems. We are only a support group so cannot offer diagnosis. If you doubt your diagnosis Iād suggest you see a migraine specialist neurologist or a neuro-otologist and if you are concerned itās something more sinister Iām sure they will arrange MRI and necessary tests to rule that out. Vestibular migraine isnāt 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. Iāll 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. Iāve had both.
MAV does change. We say it āmorphsā 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 theyāve 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 didnāt think of āprogressive worseningā in terms of ādegenerativeā rather is meaning symptoms became more severe as time passed untreated. Thatās 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 itās 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!
Iām 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. Iād 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 āspinā (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!