i am glad I found this forum. Since 2001 I have been suffering from vertigo of and on. i know its a loooong time.
I have always had motion sickness since childhood but the episodes came only while travelling by bus or boat. Interestingly, never by a plane.
I have following symptoms over the years-
Vertigo- room spinning sensations. Never nausea or vomiting. When it started, I had to sleep and whenIi got up after 2-3 hours or after a full nights sleep, vertigo was gone. At this point, no medicines were taken.
Afterwards, frequent sensations of unsteadiness, sometimes vertigo from 2005. Was put on Meclizine 12.5 mg as needed. Gave great relief. Almost got my life back.
From 2009, symptoms were bad as i approached menopause. Constant vertigo - especially bad before periods. Tons of mental fog/disconnected feelings. Was told vertigo might be harmonal .
Since 2014, verigo almost everyday. Have been taking 25 mg Meclizine every morning once which helps with daily vertigo.
Vertigo definitely gets worse with lack of sleep, spicy food and stress.
I have done 2 CAT scans, 2 MRIs of brain, numerous ENT specialists over the years, multiple audiometry tests. All normal. Was diagnosed first with allergies, then BPPV. Finally one neurologist in 2015 said this was MAV. Put me on Propanolol 220mg daily. Small doses did not work. The propanolol took away the brain fog completely. But vertigo still comes back if I donāt take Meclizine daily.
i am very concerned with such long term use of Meclizine. My neurologist says its just like benadryl so donāt worry. The Meclizine does not make me sleepy at all. So thatās good. I can do anything basically with that one 25 mg maintenance dose of Meclizine But what about long term side effects?
The neurologist has offered other pills for vertigo but most of them are anti depressants which i donāt want to take due to possible side effects.
Hey Maddy, sorry you are here for this reason, but welcome to the board.
What side effects were you worried about specifically? I took Amitriptyline @only 20mg (a pretty low dose, my psychotherapist called it positively āhomeopathicā lol) which helped me towards getting rid of dizziness and Iām also almost free of vertigo. Itās hard to say if this was spontaneous or if the meds helped, but i suspect a bit of both. The side effects werenāt too bad given the amount of relief Ami gave me. Highly recommended as a trial. See my old post on Ami:
Iām a slightly special case as I have ear trouble from ear trauma, but have also been diagnosed with MAV and have had all the rubbish stuff people on hear have had.
James, Thanks a lot for a quick reply. The Propanolol helps me a lot as it takes care of my tachycardia and also cured the brain fog completely. Plus I donāt have any side effects. But it did not help my 24/7 vertigo. Only meclizine helps that.
I am worried about the side effects like suicidal thoughts and all those scary things they say about anti depressants. How many months have you been taking the Amitriptyline?
My neurologist says people take benadryl lifelong so Meclizine taken for years shouldnāt harm me but I am not so sure about that. Also i am worried that meclizine is only masking the real problem.
Off it now as no longer dizzy, imbalance has gone too and vertigo is almost (almost) under control. I took the plunge last September and donāt regret it. Just tinnitus, minor hearing loss and mild funny ear fluid feelings left.
I took Ami for about 1.5 years. It was a game changer initially and really helped. Itās an extremely well tolerated medicine and has a long history so low risk. But sure, you canāt expect to be side effect free, unfortunately. However, itās about balancing quality of life, and it certainly improved my quality of life by a factor of about 10!
As I improved it eventually served me better to be off it. I donāt miss the constipation but respect the drug for what it did for me.
Topomax is a different beast and one that has more of a niche audience, itās a bit more āhard coreā. It definitely helps some people loads, but is quite tough to take on. Iād say try Ami first.
I donāt think Meclizine really has any long-term side effects. Itās sold over the counter in the U.S. for motion sickness. I think itās a pretty mild drug (as drugs go).
For people who have vertigo due to an inner ear problem, Iāve read that taking it basically negates the ear (balance system) signals to the brain, so the brain never gets a chance to compensate. (By ācompensate,ā I mean that the brain learns how to work around the bad signals itās receiving from the ear.) But since your dizziness (like mine) is most likely due to a neurological problem, and not an ear problem, I donāt think the brain will ever compensate. (At least in my case it hasnāt; Iāve had dizzy spells for 23 years.)
So I wouldnāt worry about taking the Meclizine, especially at the low dose that youāre taking. 25mg once a day is a small dose and if it really helps you that much, why quit? The benefits in your case outweigh the risks.
Thanks Space_cadet. Manatee, thank you. Your reply made me feel a lot better.
Another question- so right now my symptoms are- vertigo when I look up, bend down, turn my head, mild pain in both ears, sometimes fluid in ears,constant ringing in ears, visual snow, shimmering lights/patches in vision if sleep deprived(go away eventually when I get enough sleep)
Symptoms worse on cloudy days, before periods, with stress and with spicy food also.
My eyes have also been checked and everything is normal. Seen many ENT doctors who say my ears and hearing is perfect.
So my question is- do above symptoms say this is MAV ? One of the ENT doctors suspected Meriners disese.
How do I know for sure this is MAV as there is no test for MAV? My vertigo is lot of times movement related. What if its BPPV?
My neurologist is sure this is MAV. But people do get misdiagnosed sometimes. Right?
I have seen I think 5 doctors before I got diagnosed with meniere/Endolymphatic hydrops. I wouldnāt say misdiagnosed, but doctors just donāt know sometimes. Sometimes you have to be your own advocate and this forum is the perfect place.
MAV is diagnosed by exclusion - they try to rule everything else out. Your doctor most likely checked you for BPPV (mine did) and ruled that out. As far as Meniereās goes, you can find a LOT of information about it here: Meniere's Disease
Most of your symptoms you noted I also deal with. I, however, donāt have the head movement vertigo, I started to recover then recently had a bad bad lapse. Taking about 2-3 (guesstimating since itās been a week and half since my lapse) weeks to get back to baseline.
Looking to my left has been making me feel off but Iām recovering again back to baseline but my inner ear fullness (fluid as you think) keeps fluctuating up and down. Iām waiting for it (patiently ) to stabilize.
I have BPPV and MAV, plus possibly vestibular paroxysmia. Sometimes we have more than one thing going on. And, unfortunately, the science isnāt there yet to tell us whatās really going on with any of us. We treat the symptoms and hope to find what works with the most acceptable side effects. No one thing works for all of us and nobody can say why a particular thing worked or didnāt.
When I have a vertigo attack, the room is spinning. Spinning is aggravated by my head movements. When I roll over in bed, it is sometimes to left side or sometimes right side.
It has been triggered by things like patterns, very hot shower, immediately after eating very spicy food, being exposed to severe cold, cloudy weather etc. Never by fluorescent lights.
The spinning stops or gets lot better if I get 3-4 hours of peaceful sleep.
Does this sound more like BPPV or MAV?
) to stabilize.