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Vng and ecog results and need input


#41

Are you sure your test is not ECoG ? That is the one they use for hydrops.


#42

Whatever is the one that they put tiny headphone like in your ear for few mins and you hear clicks. The one that they put a visor like thing over your eyes and you follow the dots came out negative. So did the caloric test. I told the doc i am never ever doing the caloric test again because it was a terrible experience.


#43

yeah, seems several of the tests suck.

I think you need to stop testing at some point (so long as you have covered the major risks including neuroma) and simply focus on finding best treatment plan.

Whatever you have, MAV or SEH, you have to find the best treatment plan. I think the MAV medicines have a better rep than the diuretics though as you may have discovered. Mind you if the Diamox was working, the side effects might have been worth it.

Be very interested to hear if your pressure has gone down.

Have you experienced any improvement with any of your symptoms?


#44

That is exactly what I was thinking. I don’t need futher testing. I can tell you by simply if i feel better or not. But I will go ahead and do this test one last time this weekend.

The side effects i did not mind at all. It seems like the symptoms are morphing or perhaps new symptoms. The rocking and standing in narrow places tend to be little bit stronger nowdays.

I don’t think i have improved at all. The 1st week of diamox was great but maybe i’m thinking maybe that was because ami was taking effect at the time? The time I started diamox was about my 1 month mark with ami. But once I started diamox, i quit ami cold turkey and maybe it finally kicked in and lasted for a week? meh, who knows.


#45

These got worse for me, then after a looooong time, better … I think the ‘condition’ gets worse for a bit then starts to improve … and it all seems to take forever …


#46

I did some researched here on the rocking and seems people felt some relief with rocking on Pizotifen. I might ask my doc what he thinks. I think in the meanwhile after the test, i might go back to ami.


#47

yes, that’s a good plan


#48

Just got a called back. They said the right ear pressure went up from 46% from initial test to 59%. For the 2 months i have been taking diamox, i have only been taking 1 pill (500mg) and they want to make sure i take the recommended 2(1000mg) and retest after 6 weeks. They are going to prescribe me more diamox and potassium chloride. If that doesn’t work, they will offer alternative methods. Something about a injection or surgery. Ahh. I don’t know what to do at this point. Heard some horror stories on this board about the procedure on surgeries.


#49

Yes, surgery and gentamicin injections DO NOT seem to be well worked out.

In the UK Gentamicin injections are now discouraged, though ENTs got excited about them for a while.

Endolymphatic decompression is also not well worked out imho, and is incredibly invasive. The inner ear fluid balance is incredibly subtle and how you could rebalance them with such a coarse procedure I have no idea.

My advice would be to be very conservative with your therapy, do not rush into any injections or surgery without getting MULTIPLE opinions.

If what you are dealing with is Secondary Hydrops it should improve over time. It can get worse for a bit then get better, so being patient is the best plan for now, plus adding meds and following the diet to make yourself as comfortable as possible.


#50

Yes, if you have Meniere’s or Hydrops, you need to give all of the medications a good try. Both Gentamicin and surgery are irreversible so I think it’s better to try everything else possible first.


#51

On more thing … timeline … I injured my ear April 2015, got better, relapsed October 2015, got worse for about 8 months, fluctuated for ages with symptoms, then started to get better very slowly from around June 2017, coming off meds September 2017 and feeling rubbish a lot until about January 2018.

In other words takes a looooooooong time to shake out … do not consider ANYTHING aggressive until you’ve given your body plenty of chance to sort it out itself … I’d say 3 years at least from the date of your first symptom. It may seem a long time to wait but you will thank yourself for being patient when your symptoms start to soften and you start to feel like your old self again whilst not having done anything to compromise your senses and long term prognosis! Does require super human levels of patience though … extremely trying!!!


#52

Agree with others about the conservative plan.

Ask for other diuretics. Tell them you are not comfortable with taking diamox because of side effects. Speak up and advocate for yourself.


#53

And drink LOTS of water or herbal tea … keep those kidneys working to turn over as much fluid as possible.


#54

I don’t think I will do any of those until i exhausted all of the meds out there.

That is most of the consensus i am seeing here.

I’m into 6 months now I think since the 1st fiasco. 3 years? Future looks dim but I am trying to remain positive.

Since I never fully gave a full trial on diamox like the doc said (taking 2 a day), i’ll give it a go. At this point, i have nothing to lose.

I am drinking about 5 16.9 fl oz of water bottles a day plus 3 cups of ginger tea.

I still have whole bunch of ami left. I might give some thought on mixing ami and diamox. Also, I might have to really think about quitting smoking. I don’t believe smoking is going to help with the pressure.


#55

Where do you live? I don’t remember if you’re in the UK, or US, or somewhere else.

Yes, if you smoke you need to quit. Not just for this, but for your overall health. I think most doctors would agree that if you could only do one thing to improve your health, quitting smoking would be at the top of the list. I know it’s a terribly difficult thing to do, though.


#56

I live in the u.s. its on my to do list to quit.


#57

I been watching ufc for a while and never knew dana white had mineires He seems to be cured now by stem injection.


#58

He had a corticosteroid injection i think, which is not destructive but takes down inflammation. It is not destructive like gentamicin.


#59

If it is corticosteroid, doesnt u.s have this? Why did he have to go to germany?


#60

A few points:

  • Seen this, think the injection was a bespoke one not available anywhere else

  • Secondary Hydrops (like MAV in general) can be confused with Meniere’s. It may have related etiology but it’s not the same thing. Meniere’s is almost always progressive. Secondary Hydrops is not. He may have had Secondary Hydrops and simply got better spontaneously.

  • There is no controlled science going on here, it’s anecdotal. I’d like to understand the science behind this injection. The homeostasis in the inner ear is quite complex and involves both the movement of ions and osmosis. Endolymph is a filtrate of Perilymph which is itself fed by spinal fluid. How this treatment speeds up re-balancing is anyones guess, as is how it addresses the driver for loss of fluid balance … if there’s no explanation its no better than sham!

  • Whilst he considered himself ‘cured’ he still has symptoms (he discusses this) (but, heck, good for him!)