It keeps on morphing

So I thought I’d had all the symptoms. But no!

Tonight’s menu included push-pulling sensation that’s relatively new to me. It’s not quite as bad as the swaying sensation I used to get but it’s still annoying. I’m off meds so I guess I’m getting the full sensation

I thought I’d look it up on here and sure enough, years of push-pull experiences posted! This place is seriously the Wikipedia of MAV. Marvelous!

Shame, I’d had such a good day and no ear leakage for 3 nights running (a local record)

Gotta love this crp

Hugs to all


Ah, yes, I get that from time to time. If I’m driving fast 75 Mph for awhile then come to a stop light I start to get the push-pull feeling. I also get it when I’m feeling really symptomatic and the ground will start to push-pull too. It sucked when I was at the boat launch sitting on a bench with my dog enjoying the ocean view and the grass starts pushing and pulling and feeling my body as if it’s pushing pulling too.

How did it feel for the 3 nights without ear leakage? (That’s progress). Did you not wake up in a vertigo state?

Once again, I’m sorry you’re feeling this, James. I honestly want to know when it will completely resolve itself and not upon death. :frowning:

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Felt good but suspect the pressure has now risen to point where the vertigo kicks in. No vertigo for three nights too.

I’m going to ask my surgeon if diuretics can help relieve the pressure. Seeing him end of month.

Yes me too. Would like if possible to have totally normal days again.

3 nights of tranquility!
What will the diuretics do?

I hope we both are symptom free very soon. My life is flipped upside down from what it once was.

That reminds me!! I have my appt with dr rauch at Manchester eye and ear this Friday and unnoticed there are some supplements I’m not taking I’d like to discuss with him. The B2 - riboflavin helped with my ear pain for sure, magnesium set me off… butterbur and co q are recommended but I haven’t tried them yet. Have you tried any of those?

The pressure is flip flopping here as well… I’m finally feeling the migraine pain symptoms from last night to today-- started to let up for an hour or 2 this early afternoon then came back.
Inner ear feeling is hanging around too and the leaking cooling sensation, but still inner ear feeling. Tinnitus comes and goes, which is surprising. I woke up the other morning without it and was shocked, then it came back on again. I thought I was deaf when I stopped hearing it!!

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Can you describe the ear leakage? I have had a feeling of wetness in my ears… I don’t know how exactly to describe it and my head has been swimming/rocking a bunch!

Well my ‘MAV’ began with a fistula I got from trauma. Every morning since that day for about 2 years I had a feeling of collected fluid in my eustachian tube which drained internally as I righted myself from bed, briefly muffling my hearing for a few seconds. I had severe imbalance for 5 weeks which went away and I became asymptomatic apart from this sensation of fluid every morning. You don’t clearly get any fluid coming out of your ear btw. I suspect this is all happening in the middle ear.

This has decreased in volume and intensity over time and has become more of a minor dripping sensation (it went through a glug glug phase too). Some mornings I don’t get it. And now most of the time this is brought on in the form of head pressure peaks in what you might call attacks. Sometimes it manifests as vertigo in varying intensity. I’m pretty sure vertigo is acting as a fluid pressure release.

From time to time I get a cracking from my ear region when moving my jaw. I’m fairly sure this is the dried fluid residue breaking up as I flex my eustachian tube.

People are known to get secondary hydrops as a complication from fistulas. It occurs as the fistula heals. What this says about MAV is interesting! (I’ve been diagnosed with both separately)

Hopefully keep ear pressure down aborting migraines and reducing the frequency and intensity or preventing vertigo. I’ve already had some success with nettle tea (which is a great diuretic)

The tricyclics (nort/Ami) are just masking the symptoms making them feel less intense. It would be good to have something to more closely address the root cause …

Yep - the gift that keeps on giving!! Hope it soon resolves itself, James.
Be cautious with dietetics - they can also leach out other salts and create another kind of imbalance if not taken with care.
Good luck!

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Yes, will check with doc. Thanks Beth, I’ll stick with Nettle tea for time being. :slight_smile:

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My symptoms have been constantly changing and evolving. And lately, each bad spell I have keeps being the worst one I’ve had. This one I’m going through now is a doozy. Lots of body twitching, not just laying down anymore but sitting up, standing, happens at any time without warning. Then the usual being pulled down feeling with occasional jelly legs or NO feeling in my legs. And this new thing where I feel my eyes squinting when I try to look in a different direction. Has anyone experienced that last one? I have had an eye squint with the blurred vision and light sensitivity, but not with trying to look around. My last bad spell, different from this one except the jelly legs/no sensation in legs, lasted 3 weeks. I’m on day 6 with this new spell. And day 6 has been the worst yet.

Gosh Jess that’s rough. I know the pulling down feeling well. Ugh. I hope they make some progress soon on figuring out the root cause of this rubbish. As you know I think ‘migraine’ is way off. Imho, they need to look at ways of imaging the inner ear in such a way that they can detect tiny issues with its integrity. I think that is coming with latest developments in MRI, but its far from being available to most practitioners. And once they do that they need to figure out ways of fixing the issues at root cause, not just give us drugs to numb us through everything.

Hope your current spell ends very soon and you are back on more of an even keel!

I was really lucky with this last attack. It hit me at 7pm, I was in bed by 7:30pm to chill it out, then by 8am I was up out of bed and uncomfortable until about 9am at which point I almost felt normal. And this without meds.

I assume you are still without medication? Do you follow the diet?

Magnesium - yes - gave me “funny tummy”

Not others may give it a try …

“Leaking cooling” sensation … interesting!

Haha about your hearing - don’t blame you, this stuff is enough to make you paranoid permanently! :worried:

@turnitaround Thank you for your concern, yes I hope my current spell gets better soon too. I’m on day 7 and it has gotten worse in the past almost 48 hrs. I can hardly walk/stand without feeling like I’m going to fall over. The twitching is almost constant, it takes me about 3 hours to fall asleep/for the twitching to stop and allow me to sleep. I can barely move to the bathroom, let alone get things for myself. I’ve never been this bad for so long.

I really don’t know what to do. Yes, still no meds besides the Xanax. The Xanax doesn’t even seem to help the twitching or the swaying/imbalance at all. Usually the Xanax helps most of my symptoms at least some and temporarily. My now former neurologist wanted me to stop doing med trials because I was so sensitive to them & she thought they were doing more harm than good. I told her as scared as I’ve gotten to try them I still don’t think I’m going to get better without one at this point. I need to find a new neurologist but haven’t found one to line up yet. My psychiatrist has been prescribing the meds anyway and can still prescribe ones to try. I was working with a therapist for a little while on my fear of starting the meds. It seemed like the therapy was going to help at first. She mainly does exposure therapy but told me it wouldn’t be necessary for my treatment, but then after the 6th visit she said she didn’t know how to help me other than spinning me around in a chair to make me dizzier & do other exposures like that. NO THANK YOU!!! All I would need would be for that chair spinning to trigger another vertigo attack, since it’s been 2 years since my last full blown vertigo attack & I’m still recovering/suffering from it.

No, I don’t follow the diet, but there are foods I have found that trigger things that I have eliminated.

I know for my medication anxiety I can’t try another one until this horrible spell subsides, but I don’t see how it’s going to subside other than time. I’ve never been this dizzy and incapacitated. And the twitching is nasty and has never lasted so long.

I’m glad your last attack was fairly short lived and you felt normal the next day. I hope you’re still able to continue off the meds, but it would be certainly understandable if you went back on the Amitriptyline.

Do not agree to this … you don’t need it. Yes, its very good to be as active as possible as I believe the brain can do a lot of compensation (a surprising amount) with the right ‘material’, but you shouldn’t do any undue exercise and definitely none aimed at bringing on the worst symptoms, whats the point? Minor symptoms like imbalance or a bit of dizziness is ok, but violent stuff is just going to bring on spinning, that helps no-one! Once you spin, there is all sorts of fallout and it sustains the illness imho. If you have a choice to avoid the spinning, do it!

yes, but it would unfortunately give me a sense of failure. Dropping meds has given me a renewed understanding of my symptoms, a respect for the diet and has been a great milestone to reflect on and believe that I’m headed in the right direction towards complete remission.

@turnitaround No worries, other than the rotary chair test I got done at Johns Hopkins I am NEVER agreeing to be spun around in a chair again! And, I should have clarified, it was supposed to be an exposure technique to get me so I’m not as anxious when I get dizzier than my “baseline” dizziness. I kept telling her she doesn’t have to provoke dizziness in me as it’s always there. I don’t even get nervous about the dizziness itself anymore, except when it does new things like this 7 day stretch of twitching, unable to lay still, etc.

If you feel like you’re doing the right thing by staying off the Amitriptyline then that’s good! How long were you on it in total? I’ve read on this forum that it seems like most doctors prefer to keep their patients on the preventative meds at least 1-2 years, just in case they’re taken off too early. I’ve read some patients who have symptoms return, they try to get back on their med, and it no longer helps them like it once did. But I don’t think you’re in that category, luckily! :slight_smile:

I took it for a year and a half. The main reason I feel it’s time to be off is whilst I have fluctuating imbalance, I am no longer ‘dizzy’, no longer have that marshmallow floor feeling and no longer have significant eye issues. Most of the other symptoms that I still get Ami never helped with, for example ear pressure. And whilst it dampened vertigo it did not eliminate it or reduce its frequency. So without it I don’t lose much and gain a lack of side effects. And this way I can maximise the pace of any compensation.

Funny tummy ? I’m presuming diarrhea, cause I had that then the extreme vertigo came around the same time (and then a very nauseous feeling in my stomach for a good couple hours while the attack happened.)

leaking cooling sensation - best explained by imagining someone blowing cool air in your ear. That’s the feeling I get when it’s relieving pressure. I don’t ever get the bubbling sensation you have spoken of.


And that can only be a good thing! I think its something to do with my (presumed) fistula.

Does this make you unsteady at the time its happening, how does it compare to vertigo?

It doesn’t compare to vertigo at all. It just feels like a relief valve has been turned on, cause when that feeling occurs my inner ear fullness starts to reduce sometimes. It doesn’t cause any dizzy action.

It’s happening tonight cause I had a lot of spices and it caused a big inner ear fullness feeling. I’m guessing it’s from the salt/sodium from the spices that is causing the inner ear fullness feeling more so, since the weather is absolutely crystal clear.

That’s just my guess!

I think that sounds about right. My theory about vertigo is that when this ‘softer’ version you describe doesn’t happen pressure builds up much more and vertigo is simply a much faster pressure release that then gives you the sensation of movement or spinning out because the additional velocity of the fluid stimulates the senses. I have no problem with this sensation either except when so violent it causes nausea but that’s extremely rare for me. (Only twice in two years)

The bigger problem is when the leak is large enough it leaves you with imbalance for a day or days. imbalance is by far the most annoying and disruptive symptom. I suspect it’s easier to get used to the other symptoms even the tinnitus. But feeling like you can’t walk confidently and comfortable is never going to be pleasant or convenient!

My better days are always after a no leak or little leak night, I can be almost symptom free now. However, vertigo can leave my balance messed up until the following evening and sometimes for days. And so it goes on…

I wonder if lowering your salt intake can lower the risk of the big vertigo spells? … Surely lowering the big spikes can only be a good thing?