Going to Germany- Orthokine

i hope he updates us soon...i also wonder about Dana White, how he's doing....

 

No vertigo is great! but I do understand completely you do not want to lose any more hearing. I wish you the best on SS's treatment and hope it gives you the improvement you want and so rightly deserve.

 

Hey Geoff, welcome to the SSTP club. I have had 5 weeks of vaccine now. My symptoms were in a reasonably good place before I started, helped by AVs, I think, but then went down on one of MD's fluctuations on Mar 10,11, 12,13, then I started the vaccine (on the 13th) and symptoms stayed down until March 22 when they improved and have been steady with a slight improvement since then. I am feeling quite positive about my start on the SSTP.

I think it is unusual to see improvement so quickly so I haven't ruled out that this could just be another fluctuation.

Stephen emphasizes that it is not a quick fix.

 

Can you describe your symptoms pre-treatment, on AV's, and on the vaccine?

 

Well, as you know this thing fluctuates. But I do a hearing test every day and plot it on Excel. The hearing test graphs things but I put that back into numbers. 17 would be perfect. The test does 6 different frequencies in each ear. My good ear would be, from lowest to highest frequency 14,16,16,16,11,12 - since SSTP, it has actually occasionally gone to 15,16,16,16,11,12.

My bad ear, on AVs, at its best would be 11 (a few 12s), 16,16,16,10,11. When I am in a trough, it would be 5,6,7,10,8,10 and that is what it was on Mar 14th. At that time the lowest frequencies wouldn't really be a tone, just a feeling of pressure or vibration. I would also have a pretty much totally blocked or full, or dead ear. Sometimes I might have a slight dizzy spell and/or the sweats.

My ear recovered to its peak, as compared to trough about 10 days after I started the vaccine on the 13th. On the 24th, the readings were 11,16,16,15,10,11 (bad ear) . This morning, they were 12,17,17,16,11,12 bad ear and 15,16,16,16,12,12 good ear.

I have tinnitus which I rate on a scale of 1 to 4 and it is currently 3 and has been for a long time. I rate my ear fullness and when I started and the hearing was bad, I rated it a 3 but now I rate it a 1. It could actually be 0 at some times but I don't want to jinx it .

 

Hey Domamo, what are you using to test your hearing?

Thanks

 

I use uHear https://itunes.apple.com/gb/app/uhear/id309811822?mt=8 - the sensitivity portion. I use the older style ear buds, one generation ago, and keep a couple of pairs just for that purpose.

 

This may sound odd, but I took a hearing test from an app on my iPhone a few months ago and having ear buds in my ears and taking the hearing test cause my tinnitus to act up badly.
But tomorrow I go to my audiologist for my yearly hearing test, I am anxious to see how my hearing compares to last year, although my hearing loss is not due to MM (midtones).

 

Geoff you have my best wishes as always. May good things come your way with the new venture.

 

Thank you. I'll find my way, one way or another. At least Orthokine gave me a good excuse to take a vacation, even if it was just to Germany. Anyone know of any new experimental MM treatments in Fiji or Tahiti? I'll volunteer to take one for the team again!!

 

I'm in for Fiji or Tahiti even without experimental treatments ;D Just being there would heal me of all ills!

 

how are you feeling so far?

 

LOL fair enough! How about we just relocate MM sufferer's to Tahiti- we can have our own little MM colony. Somehow I think my symptoms wouldn't matter as much being there. It really is an amazing place- I got to experience 10 glorious days there pre meniere's.

 

That is an excellent idea! We'll load up on Meclizine, Dramamine, Lysine, Valium, vaccines, hearing aids, CIs, low sodium snacks, non-alcoholic drinks and I say we're all good to go

 

^^^^^ non alcoholic drinks??? Gross

 

Well, I haven't started SS yet. I only today got (some of) my blood work done, so I still feel the same way. I still have continuing hearing loss and tinnitus, which keeps getting worse. I am infinitely thankful that I haven't had any vertigo since returning, but as I said, I don't think that all of a sudden I'm going to be "cured", like DW seems to have been. I'm happy for him and his success, and I do really think that they are onto something there, but it just hasn't worked for me thus far, and I'm not willing to sit around and wait.

Anyway, it'll probably be a little time before I get my vaccine and start, but I wanted to end the Orthokine thread since my results will soon be skewed. So unless I all of sudden "get better" in between now and the time I get going on SS, I have to say that it wasn't a success for me. Doesn't mean it wouldn't/hasn't/can't work for someone else- maybe I'm just too messed up (or messed up in the wrong way).

 

HAHA! Agreed! Sorry Intrepid, but there will have to be booze for those of us who can drink without any effect on our symptoms. We'll keep virgin drinks on hand for you, though. Hope you can compromise.

 

The Irish in you protests? ;D

 

Water for me. I just don't drink and not for religious or MM reasons either I think I haven't (YET) met a drink that screams my name. Maybe Fiji will change that and turn me into a raging connoisseur of booze.

 

Well yes of course it does, why wouldnt it?? Life without wine would kill me I think.