Dr Gacek and Cochlear Hydrops

Santa, thanks. I am not familar with that one. My first prescription was Northstar and it worked great for me; then when refill the lab was Mylan and I immediately had a return/increase of my ear pressure and ringing within a couple of days of taking that one. It was my first experience ever where the manufacturer made a difference - I always thought all generics were the same. So keep that in mind if this one works for you and then after a refill you experience issues look at who made the pill before getting too concerned about set back.

Really hope that you are one of the people who find some relief with this. For me within the first month at full dosage (3x day x 1000) my ear pressure was significantly lower and ringing totally gone - which was a first for me in a couple of years. 'Course I still say my prayers each night thanking for a good ear day. Simple things to keep me happy.

 

Santa, yes. I called around to local pharmacies to see which ones carried the Northstar product and what the cash price would be and switched my prescription. I stayed on the 3x/day dose for 2 months (one month longer than initially thought) and am not taking 1 per day (1000mg). Every blue moon if I am feeling a little off I will take a second pill at night.

My refill that I picked up yesterday had been switched to Mylan - but I called and Costco pharmacy said they would order in the Northstar for me and I pick it up on Monday. (My mail order pharmacy thru my insurance won't fill with a specific manufacturer unless the doctor notes it specifically on the script and is prepared to say "why".)

 

Hey thanks rottiesrule for suggesting the idea to take 4 Lemon Bio's per day.

The fullness seems to me to create the container for the other symptoms to exist. This is based upon my first round of prendisone a year ago which cleared the ear, my hearing came back 100% (per an audiolgy test) and the tinnitus and fullness and dizziness all went away too. Since the prendisone no longer does this and my entire body takes a big hit too, upping the Lemon Bio's seems wise. I was taking 2 a day.

About how long did it take with 4 a day for the fullness to clear?

Having a couple bad ear days kicking up the headaches and malaise but now there is hope surrounding it with JOH's Regimen and a week on Acyclovir. I have also been pusing the envelope a bit more just doing things I enjoy in spite of feeling not so good which could be contributing to the flare up but these were happening living in 100% damage control while life is passing me by. My spunk has returned since winning the round at my ENT MD's office 8)

 

It took a few months. The fullness was so bad that if I was lying flat, my ear plugged up and I couldn't clear it. I'd sleep propped up on several pillows. When I'd turn my head, I could actually feel the fluid move. After three months, I was sleeping flat again. I sometimes (although rarely) have an episode where my ear feels like it wants to plug up, so I'll increase the lemon bios to two. And it usually lasts just an hour or so.

I have no dizziness or vertigo, nor does salt, the weather, alcoholic beverages or stress make my symptoms worse. For the most part, I can live life, work and carry on.

 

Thanks for this! Gives me hope. I never can clear my ear. Wonder how you do that? Did/do you have hearing loss too?

 

Hey Thanks Santa!

I tapered way down on caffeine to less than a teaspoon full of black tea mixed into red tea per day also to avoid headaches. Only change is for the worse. I went off of alcohol too but felt worse. Now I find that a couple potato vodka's with Pelligrino and pure cranberry juice (no sugar, not from concentrates attending to my kidneys which get compromised by the AV's) makes the racket go way down and lessens the intensity of the MM symptoms and associative headaches. I have read that alcohol is a contributor to MM and how can that be if it works to lessens symptoms? Any inputs on this mystery??

 

Are you sure you werent judging the no caffeine by the period of withdrawal? Most people do get headaches when they first go off caffeine.

 

I went off two years ago when the migraines showed up. after 4 months, no diff. Then tapered down once diagnosed with MM, no headache, no improvement in MM symptoms actually worse. More puzzled about the alcohol surprise….

 

Alcohol is a central nervous system depressent. Caffeine is a stimulent.

 

Yes June I know this. But more specifically why would alcohol and caffeine be considered contributors of MM symptoms then?? Looking for logic : Have researched ths and haven't read anything that really explains it yet.

 

As for caffeine, i just go with my experience. There is a 100% correlation with a lot of caffeine and a flare up of symptoms for me. Alcohol, i dont know. I dont drink much but when i have a glass of wine it doesnt bother me. No doctor ever suggested it would to me.

But in general some people are more sensitive to these things than others, mm aside.

 

But in theory, it would seem alcohol could suppress symptoms or awareness of symptoms since it is a central nervous system depressant.

 

Thanks for bouncing this around June. I agree but then why is it on the list of things to avoid too? :-X

 

It was not on any list of things to avoid that i was given.

 

How odd. It was on every list I've seen online.