So I met up with a new doctor

In any case it will probably heal but the plumbing gets upset and things are under fluid pressure so it takes longer. And the fluid is not blood so it doesn’t clot so easily.

As of right now, I can’t even make my right ear move by either swallowing or burp. It just feels numb but occasionally I would burp and make it move a little and it feels like it’s dull and feels like it won’t pop. I have a feeling that if it does pop, it would hurt really bad.

Sorry just to add: getting a spontaneous migraine problem from nowhere doesn’t make sense either. And one showing specifically vestibular symptoms. The ear is WAY more exposed and delicate than the brain. It’s not the brain.

Do not put it under any stress. Just let it resolve naturally. Slowly. You risk injuring it further if you do any blowing etc

Gotcha. I would purposely swallow harder to make it buldge but I’ll stop doing that. Forgot to add, I believe maybe before I started ami, Either laying on the side would sometimes make the right ear little itchy and felt a sensation something was leaking out. I would put my finger in and see if there was any fluid but there wasn’t.

That leak could be middle ear. Just like mine is. That’s a fistula most likely. They heal. But take ages to. You definitely need to be checked for otitis media though.

There is soooooo much dogma at moment especially by neurologist that fistula don’t exist. It’s BS. DONT BELIEVE THEM. Seek more opinions if they can’t explain the fluid. Conservative therapy is best approach though as surgery effectiveness is iffy

What kind of test are done to check the middle ear? Will vng testing and ecog show that? Now that I think about it, I did use those metal ear picks to dig at my ear for like 20 years or so and sometimes twice daily everyday. Maybe that can be the cause.

Only visual check of ear drum (otitis media) to see if there is something behind or exploratory surgery to look for fistula. Imho worth doing the meds and waiting a year to see if symptoms steadily improve over time. Then rinse and repeat.

1 Like

It could well be related. As per above my doctor said that secondary issues can show up up to 10 years after an initial insult to inner ear.

Your knowledge and theories are always appreciative James. Doc was explaining something about the ear with potassium and sodium and how if it’s not balanced, it can cause problems. He did mention something about sodium and there are meds out there to treat it. I’m thinking maybe it’s diuretic meds? He seemed to be put off by ami though where he said that’s just for antidepressant. Good news is he prescribed more ami for the time being.

That’s correct. Perilymph (75% Sodium salt) and endolymph (75% Potassium salt) are either side of the Reissner membrane. If you suffer a leak of perilymph the endolymph region can distend and this leads to pressure as the body attempts to restore the perilymph volume. The complete system of homeostasis as it’s called is not fully understood yet.

Amitriptyline is not just an old antidepressant it has at least two really useful properties that make it very helpful to patients suffering dizziness and vertigo. It’s a vestibular suppressant which can reduce the sensation of dizziness and reduce the discomfort of motion. It is also has anticholinergic properties so can help eliminate feelings of nausea. If you’ve ever had chronic nausea you know how much help this can be.

More on this page:

https://www.dizziness-and-balance.com/treatment/drug/drugrx.html

I think in terms of treatment SEH and VM can be little different.

  1. With SEH there is sensory fallout and could cause migraines. Migraine meds eliminate the migraine but the underlying SEH will cause flareups and you will have the attacks. The migraine meds have 0 impact on the vestibular attacks. Dr.Hain clearly states mecilizine will not work for VM and hence i think it can be diagnostic. I actually think if meclizine works for someone then they have a ear problem. You will never feel close to 95% untill the SEH settles down or starts settling down and meds wont touch this.

  2. With VM/MAV one needs to keep the med trails going untill they get to 95% or close. I have interacted with many in this forum who have got their life back by switching meds and mixing meds. There is a facebook group called “vestibular migraine professional” founded by scott again. There is overwhelming eveidence of folks who got better by finding the right med. I just dont want folks to get distracted from their med trails which can be grueling.

Personally for me Ami has given my life back to a large extent but I am in this limbo land where i am not able to identify triggers with precision and vacillating between SEH and VM. I am going to try the diuretic and see if it helps me to rule out the SEH. I do find a salty meal sets me off but it takes anywhere between 3 to 4 hours for this to happen. I checked with my doc and she agrees that this is about the right time for one to feel the effects from salt. Will start the diuretic soon and see what happens :slight_smile: Will post my updates.

Happy healing everyone

I certainly would not dispute that meds can help tremendously. That doesn’t say a lot about the root cause though. I don’t know about you but I don’t want to be on meds for the rest of my life. I want doctors to work out the root cause and optimise the treatment plan to resolve the issue for good so we can all get on with our lives withiut chronic medication.

I’m doing pretty good without meds but I’m far from 100%

2 Likes

I don’t want to be on meds lifelong, no one does :).

The doctors I wish can give a pin pointed diagnosis, they take an educated guess at best :slight_smile:

If you see a slow steady progress I am sure there is healing happening from some form of trauma. Mine is progress but hampered by some bad setbacks.

I wonder healing takes how many years (idea for next poll :slight_smile:

Would be good to have med poll as well( propranolol. Ami, nort, effexor. Verapamil, topomax, ) to see where folks had max relief.

Yes, more polls! :slight_smile:

Where are you seeing this on Dr. Hain’s site? I couldn’t find it.

Thank you!

I remember seeing it in this PDF from Dr.Hain

Another useful PDF for Migraine
http://www.livingwater.com.tw/headache/slides/110724headache/Migraine%20and%20Vertigo.pdf

Hi Manatee,

Here you go

@GetBetter, Ahh, thank you so much for these. I have read a LOT of Dr. Hain’s site but I missed that PowerPoint presentation. The other presentation looks good, too, and I’ll read it tomorrow. Thank you!

Manatee