Tonightās menu included push-pulling sensation thatās relatively new to me. Itās not quite as bad as the swaying sensation I used to get but itās still annoying. Iām off meds so I guess Iām getting the full sensation
I thought Iād look it up on here and sure enough, years of push-pull experiences posted! This place is seriously the Wikipedia of MAV. Marvelous!
Shame, Iād had such a good day and no ear leakage for 3 nights running (a local record)
Ah, yes, I get that from time to time. If Iām 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 Iām 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 itās pushing pulling too.
How did it feel for the 3 nights without ear leakage? (Thatās progress). Did you not wake up in a vertigo state?
Once again, Iām sorry youāre feeling this, James. I honestly want to know when it will completely resolve itself and not upon death.
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 Iām not taking Iād like to discuss with him. The B2 - riboflavin helped with my ear pain for sure, magnesium set me offā¦ butterbur and co q are recommended but I havenāt tried them yet. Have you tried any of those?
The pressure is flip flopping here as wellā¦ Iām 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!!
Can you describe the ear leakage? I have had a feeling of wetness in my earsā¦ I donāt know how exactly to describe it and my head has been swimming/rocking a bunch!
Well my āMAVā 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 donāt 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 donāt 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. Iām 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. Iām 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! (Iāve been diagnosed with both separately)
Hopefully keep ear pressure down aborting migraines and reducing the frequency and intensity or preventing vertigo. Iāve 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 ā¦
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!
My symptoms have been constantly changing and evolving. And lately, each bad spell I have keeps being the worst one Iāve had. This one Iām 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. Iām on day 6 with this new spell. And day 6 has been the worst yet.
Gosh Jess thatās 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 āmigraineā 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?
@turnitaround Thank you for your concern, yes I hope my current spell gets better soon too. Iām on day 7 and it has gotten worse in the past almost 48 hrs. I can hardly walk/stand without feeling like Iām 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. Iāve never been this bad for so long.
I really donāt know what to do. Yes, still no meds besides the Xanax. The Xanax doesnāt 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 Iāve gotten to try them I still donāt think Iām going to get better without one at this point. I need to find a new neurologist but havenāt 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 wouldnāt be necessary for my treatment, but then after the 6th visit she said she didnāt 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 itās been 2 years since my last full blown vertigo attack & Iām still recovering/suffering from it.
No, I donāt follow the diet, but there are foods I have found that trigger things that I have eliminated.
I know for my medication anxiety I canāt try another one until this horrible spell subsides, but I donāt see how itās going to subside other than time. Iāve never been this dizzy and incapacitated. And the twitching is nasty and has never lasted so long.
Iām glad your last attack was fairly short lived and you felt normal the next day. I hope youāre 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 ā¦ you donāt 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 āmaterialā, but you shouldnāt 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 Iām 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 Iām not as anxious when I get dizzier than my ābaselineā dizziness. I kept telling her she doesnāt have to provoke dizziness in me as itās always there. I donāt 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 youāre doing the right thing by staying off the Amitriptyline then thatās good! How long were you on it in total? Iāve 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 theyāre taken off too early. Iāve 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 donāt think youāre in that category, luckily!
I took it for a year and a half. The main reason I feel itās time to be off is whilst I have fluctuating imbalance, I am no longer ādizzyā, 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 donāt lose much and gain a lack of side effects. And this way I can maximise the pace of any compensation.
Funny tummy ? Iām 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. Thatās the feeling I get when itās relieving pressure. I donāt ever get the bubbling sensation you have spoken of.
It doesnāt 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 doesnāt cause any dizzy action.
Itās happening tonight cause I had a lot of spices and it caused a big inner ear fullness feeling. Iām guessing itās from the salt/sodium from the spices that is causing the inner ear fullness feeling more so, since the weather is absolutely crystal clear.
I think that sounds about right. My theory about vertigo is that when this āsofterā version you describe doesnāt 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 thatās 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 itās easier to get used to the other symptoms even the tinnitus. But feeling like you canāt 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 onā¦
I wonder if lowering your salt intake can lower the risk of the big vertigo spells? ā¦ Surely lowering the big spikes can only be a good thing?