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Really need help...desperate


#1

Hello,

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-

  1. 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.

  2. 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.

  3. 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 .

  4. 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 don’t take Meclizine daily.

i am very concerned with such long term use of Meclizine. My neurologist says its just like benadryl so don’t worry. The Meclizine does not make me sleepy at all. So that’s 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 don’t want to take due to possible side effects.

Can someone offer some advice?


#2

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 ‘homeopathic’ lol) which helped me towards getting rid of dizziness and I’m also almost free of vertigo. It’s hard to say if this was spontaneous or if the meds helped, but i suspect a bit of both. The side effects weren’t too bad given the amount of relief Ami gave me. Highly recommended as a trial. See my old post on Ami:

I’m 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


#3

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 don’t 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 shouldn’t harm me but I am not so sure about that. Also i am worried that meclizine is only masking the real problem.


#4

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 don’t 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. It’s an extremely well tolerated medicine and has a long history so low risk. But sure, you can’t expect to be side effect free, unfortunately. However, it’s 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 don’t miss the constipation but respect the drug for what it did for me.


#5

Thanks. I am going to see my neurologist in 2 months. Will definitely talk to her about Amy. She also suggested Topomax.

Does anyone know anything about long term side effects of Meclizine? Searched online but didn’t find any.


#6

Amy? Whose Amy? :wink:

Topomax is a different beast and one that has more of a niche audience, it’s a bit more ‘hard core’. It definitely helps some people loads, but is quite tough to take on. I’d say try Ami first.

Check out the results of our Big Med Poll

Good luck with your consultation! :four_leaf_clover:


#7

Sorry was typing too fast…lol
I will. Thanks.


#8

Welcome to the forum. A lot of great advice and support here!


#9

I don’t think Meclizine really has any long-term side effects. It’s sold over the counter in the U.S. for motion sickness. I think it’s a pretty mild drug (as drugs go).

For people who have vertigo due to an inner ear problem, I’ve read that taking it basically negates the ear (balance system) signals to the brain, so the brain never gets a chance to compensate. (By “compensate,” I mean that the brain learns how to work around the bad signals it’s receiving from the ear.) But since your dizziness (like mine) is most likely due to a neurological problem, and not an ear problem, I don’t think the brain will ever compensate. (At least in my case it hasn’t; I’ve had dizzy spells for 23 years.)

So I wouldn’t worry about taking the Meclizine, especially at the low dose that you’re 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.


#10

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?


#11

I have seen I think 5 doctors before I got diagnosed with meniere/Endolymphatic hydrops. I wouldn’t say misdiagnosed, but doctors just don’t know sometimes. Sometimes you have to be your own advocate and this forum is the perfect place.


#12

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 Meniere’s goes, you can find a LOT of information about it here: http://dizziness-and-balance.com/disorders/menieres/menieres.html


#13

If it was Ménière’s disease, you’d have a rapid decline in hearing.

Most of your symptoms you noted I also deal with. I, however, don’t have the head movement vertigo, I started to recover then recently had a bad bad lapse. Taking about 2-3 (guesstimating since it’s 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 I’m recovering again back to baseline but my inner ear fullness (fluid as you think) keeps fluctuating up and down. I’m waiting for it (patiently :smirk:) to stabilize.


#14

But if I have vertigo with head movements then doesn’t it mean BPPV diagnosis?

My neurologist says MAV can have movement related vertigo too. But I haven’t read about it anywhere.

Can BPPV last for 16 years? Also, my vertigo attacks are never brief. They last for hours. Its so confusing :frowning:


#15

I have BPPV and MAV, plus possibly vestibular paroxysmia. Sometimes we have more than one thing going on. And, unfortunately, the science isn’t there yet to tell us what’s 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 didn’t.


#16

Sounds like BPPV for you. I’d avoid those certain head movements like I avoid sleeping on my left side.

What is movement related vertigo? You walk and get vertigo? Are they sure florescent lights or something else is not the trigger?


#17

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?


#18

The clear majority of people on this board have some kind of positional vertigo as demonstrated here.

This sort of suggests it’s a core MAV symptom in general.

As per @flutters unfortunately we don’t know for sure the underlying aetiology of MAV. I have my theories (as do others) and there is a whole category now for this kind of debate.

Suffice to say you could have a very similar issue to the rest of us (but obviously we are in general not qualified to diagnose here, just discuss).

I also agree with @flutters that you should focus on exploring different treatments until you find a protocol that best suits you.