The Vestibular Migraine & Secondary Hydrops Community
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Finally have a professional diagnosis and control


#1

I have to share with all of you who suffer from MAV , meunière and Bell’s palsy , THERE IS A WAY TO BE Yourself again! I live in California and been though he’ll like most of you, numbness, Migrane’s, vertigo, being in a boat feeling, partial paralysis , eye problems, photofobia etc… I DID NOT GIVE UP after many doctors , meds etc… I decided to do an extensive research and was able to hear from DR GACEK , at UMassMemorial in Boston who has dedicated the last 20 years of his life to reasearch specifically on this issues. After waiting for 3 months for an appointment I flew all the way to Boston to see him and my life has changed 360 degrees SO HAPPY!:blush:
He is releasing a book with all his findings in Meniere and vestibular problems , he has found that treating his patients with antivirals that penetrate the nerves can control most of the synthomps ! I am a living proof! I am 95% myself again, I encourage you to give it a try it is SO Worth it, you have nothing to loose and much to gain! THERE IS HOPE


#2

That’s awesome, glad to hear it! So did he prescribe things like Valtrex? What dose and how long did it take to start feeling better?


#3

Many are skeptical about such treatment but I wonder if there’s a valid reason for this which doesn’t involve a reduction in direct damage from viruses (because the inner ear is sealed though of course there is blood transit)

You see I’ve noticed an escalation in symptoms during colds. I know this is well recognised in general. But I speculate it’s not related to viruses being activated within my inner ear.

What I suspect is happening is there’s a corresponding increase in mucus production when you have a cold.

I observe and speculate that at least a significant proportion of people already suffering from MAV have issues with the free functioning of their eustachian tube and/or sinuses. I further speculate that this can have both an acute, direct influence on the maintenance and homeostasis within the inner ear and brain and a chronic impact which slowly but surely creates changes within the inner ear fluid concentrations which renders the system less stable.

I wonder if antivirals can reduce inflammation and the bodies response to normal levels of infection and help reduce the impact to susceptible individuals by lowering the risk of tube blockage and maintain an overall more stable system.

Oh and would you believe it?:

“Treatment reduced the severity of rhinorrhea, sneezing, nasal obstruction, sore throat, cough, and headache and reduced nasal mucus production”

Inflammation of the middle ear can cause ear pressure and pain:

I also wonder if ‘fullness’ is the result of the temporary loss of pressure equalisation when things get blocked.


#4

Wow this is amazing!!! How long did it take to feel 95%? Mine all started a few weeks after a terrible virus which left me heavily congested. I am now 8 mths down the line with still having blocked/popping ears, nose blocked every morning,head pressure, spaced out, drunk vision and derealisation. Do you think I should ask my doctor for a prescription to see if it works? What would be a uk version of an antiviral medication?


#5

Tamiflu would be one. Remember much advertised a few winters ago when UK was expecting The Big Flu epidemic linked to Swine Flu I think it was. From what I remember to help reduce flu symptoms timing of start up was critical which is why local stockpiles were created. You had to start it at the very first flu signs. Wonder would that apply with virally linked MAV. No idea.

My understanding of antivirals was that they had to be very specifically targetted to the infection, ie flu virus A or B, HIV, Herpes etc so how would that work with MAV. Which virus is involved.

MAV is obviously caused by something so further investigation is always worth a try. Thinking through timings relating to MAV development may give a few clues. If it came on suddenly following a virus but for many MAV creeps on, quietly bit by bit over years and goes away inbetween. I wouldn’t imagine that’s much like how a virus would work although chickenpox can resurface as shingles it’s true. So maybe. Helen


#6

My present thinking is that MAV comes on gradually from an initial chronic driver … in my case ETD, middle ear inflammation or possibly even a healing PLF (themselves brought on by an initial trauma in my case) … all which would have caused my tubes to clog up and that might impact the inner ear.

It’s just possible the chronic driver is upsetting the inner ear fluid balance just a little and over time this accumulates.

In the case of viruses it might not be one virus (the body fights each one off) but repeated separate colds that might block the Eustachian tube and/or sinuses.

If you are more susceptible to colds impacting that part of your anatomy than others it could mean that you are more likely to get MAV …

Then on top of that we are being told that migraines themselves can cause swelling in this region of the body. This represents a possible viscious cycle, one that once you get into is hard to get out of as the migraine themselves sustain a similar impact …

Just some thoughts … who knows!


#7

Thanks for that info Helen.

I think in my case i find it literally hard to wrap my head around as I have no history of migrane/dizziness etc.

Saying that mav can rear its ugly head at any point in life.

Also I’m currently weaning off sertraline, started ami and on 300 mgs of gab. So not sure what drugs are doing what?

I just can’t see any drug helping with these severely detached feeling :cry: I’m 32 and just want to be living my life like I used too and enjoying my children.

Not feeling like I’m off my face on drugs all the time. I try and stay positive but it’s so hard as you know to function when feeling like you are about to float away.

I have never had ear issues in my life until May 18. I just can’t see this nightmare ever ending or improving. Sorry to be a Debbie downer.


#8

I was told Eustachian tube blockages were about as rare as hens’ teeth but then again I’ve been told alot of rubbish about this condition. Like for years being told it was BPPV wheras anybody who can read can quickly discover on the internet/in a medical textbook BPPV only lasts a few seconds, not days/months/years!

That resonates with me. As it a collection of symptoms MAV rather than a specific condition root causes must vary but I say fluctuating hormones would certainly be a chronic driver.

Rear head pressure and ear fullness always seems like ‘swelling’ to me. Too much material trapped into too small a space I’ve always described it. Helen


#9

Indeed, I was told my ET was fine … my ear drum pressure tests come out fine. I can demostrate equalisation in the office, I can ‘blow’ my ear drums out as I swallow… the thing is things are rarely black and white and you have to wonder if a small impairment might build up over time?

Exactly … and I don’t think anyone gets a straight explanation for this?


#10

James, in more than fifteen years of MAV, I’ve yet to get a ‘straight explanation’ for anything! Believe me. Helen


#11

Who gave you a MAV diagnosis then? What tests have you had. MRI, etc? Neurologists generally take a very detailed history on which to base their findings. Everybody needs a diagnosis that is meaningful to them before they start. You have to be able to believe in it otherwise the anxiety of uncertainty can outweigh any benefits of treatment. Until you can relax with any condition by understanding it and accepting it, IMHO, you ain’t going anywhere forwards anytime soon,

Not a good place to be. Too many changes too soon.

Perhaps you’ve hit the nail here. Weaning off sertraline maybe is very difficult and maybe that is causing some of your worst symptoms. I guess not having sufficient in your system may account for your ongoing anxiety and depression at lack of recovery.

You are obviously very unhappy about where you are with things currently. How’s about a complete rethink. Get to see a specialist, a neurologist maybe. Don’t sit feeling negative and defeated. Take positive steps towards getting some more definite answer. Helen


#12

Natalie I understand how frustrated you feel , this was me 1 month ago, you d=
o not have to have had shingles to have this latent in your body DR GACEK ex=
plained you breath through your nose since you are born many viruses and if y=
ou have a genetic disposition ( by the way it is more in women 4 to 1 )
You can have this later in life. He has invested the las 20 years of his ca=
reer on this because is so hard to diagnose and because results after are so=
amazing! My migraines, vertigo, numbness, Fogg all gone!


#13

Doctor Gacek told me it is a generic thing you inherit a predisposition to h=
old to this virus and body naturally encapsules them so this is why it is so=
hard to diagnose ! When body goes under stress or sick they flair and your b=
ody has to try to control them down again, they are dormant and never go awa=
y, so what we have to do is control them to avoid this to happen. In my case=
since I had couple episodes I will be taking antiviral for life 1 a day and=
increasing to 2 when sick or under stress. I feel so much better knowing wh=
at to do to control it!


#14

t has to be an antiviral that can penetrate deep in the brain and that can c=
ontrol shingles virus, like valtrex, valacyclovir, acyclovir.


#15

I would, sometimes is hard to get your doctors to agree on prescription, but=
at no harm to you and all possible benefits definitely would, just doses ha=
ve to be strong pee dr GACEK recommendations in his study of recurring verti=
go otherwise it will be useless , I was miserable for 6 months then started a=
ntivirals in strong doses and within 3 months It was me again! So happy, but=
I had another episode similar in the past and suspended them it came back, s=
o antivirals do work just need to have them for extended time.


#16

Antivirals help your inmune System to cope with virus while your body heals f=
rom other sickness , this is the reason why they increase antivirals st this=
time, I am a living proof, when I had sinusitis I increase my antiviral to 2=
doses and did not get any of the MAV symptoms!=20


#17

Yes, high dose of Valtrex 3 per day for 3 weeks and then 3 months of 2 per d=
ay and maintenance of 1 a day per life and to be increased to 2 in times of s=
tress or sickness.=20


#18

That’s great news Cecillia. I will definitely mention Valtrex to my doctor and see what they say. Did you ever get eye pressure? Did you feel dreamlike? Also when you say numbness my brain feels numb all the time.


#19

Thanks Helen.

They diagnosed vestibular migrane as I get intense head pressure sometimes and when that goes up so does the pressure in my ears.

Take for instance I have just been bowling with my friends and within 1 hour of being there I got headachy, head pressure increased along with ear pressure and my eyes feel inflated. I found the lights quite intense in there.

Right now I feel like when you have a virusy head and your eyes feel to big for your eye sockets. And you have that fluey vision if that makes sense.

My mri was all clear and when I told the ent about my ears he said they may feel full but they aren’t they are being irritated. Sometimes I can hear my voice inside my ears when they get really full. Occasionally I get the fluttering in my ears and also my ear will go mute then a high pitched beeping for about 5 mins.

I also get visual vertigo when the floor looks like it’s breathing.

I think I just struggle to accept it sometimes as most ppl have migrane history where as I don’t.

I’m sure it is mav just find it hard as progress is so slow that I panic sometimes and feel trapped in my own head.

My brother was diagnosed with labs but he was chronic for 15 mths so doubt it was labs. If he goes to a shopping centre even now he gets dizzy.


#20

Any side effects from valtrex ? Any documented side effects from long term use.