Going to Germany- Orthokine

Agreed recentlydizzy. I don't think you go from having "daily attacks" to "superman" from placebo, and have it last as long as it apparently has for Dana (although who knows- anyone read Mind over Medicine by Dr. Rankin?). My guess was inflammation from the fight he was in, as I've said. Additionally, although it's anecdotal, the Dr. there did say they have an 80% success rate with treating MM. Who knows, maybe most on this forum are just in the 20%, which is why we're all here.

Frankly though, I shouldn't be speculating- who knows why something works for one person and not for another. I'm just going to stick to my own experiences, which also are anecdotal, but at least I know them to be true for me, and can recount them accurately for everyone for what it's worth.

 

I think success rates are so personal. What you are experiencing right now may be successful compared to what you were experiencing before and who really knows what DW's symptoms actually were. Unless the guy comes here and details it all, it's kinda hard to tell.

I am still hoping something changes for you and the remaining symptoms subside.

 

That's a very good point, Intrepid. What is "success"? Dana is a f!&#ing bad ass- he was still working 12 hours a day and flying around the world with DAILY vertigo. I get slightly dizzy and take 9 zanax, 3 meclizine, and call it a day. lol So I wouldn't be surprised to find out that Dana still has some symptoms but has just seen enough improvement to go about his life.

But one thing struck me- in one of his interviews he said "the music at the gym hurt...I couldn't even work out...now I'm [back to] working out like a madman." So it seems it helped more than just the vertigo- clearly there was an improvement in the hyperacusis. Believe me, I've listened to every Dana video and torn it apart word for word to try to figure out what his improvement was, what his baseline was, etc. But is sure would be nice to have him on here (or anywhere) giving a more detailed description of his experience, but it seems he's moving on with his life (which in and of itself says something, right?).

 

Yes it does say something. BUT, it is possible (like I said elsewhere) that his "success" is the result of accumulated treatments and also, the nature of the beast in his personal case.

This is a spectrum disorder and no two people are in the exact same place in terms of frequency and intensity so it is only natural to assume that healing is a spectrum result too.

I say track your success according to your experience. It can get very distracting and depressing to want to be like DW. Plus, you may continue on this same trajectory while he may relapse (I really hope not!) in 4 months. We just don't know.

 

I am so grateful for you sharing your experience so openly, and yes I loved the breakfast pics!! I am so very hopeful that you will not be disappointed with the treatment. I mean that is a shit load of money to come up with. If it was the magic bullet treatment that Dana had me convinced it was I'd be over there too somehow. Well I had the money a month ago but ya know. Just keep us informed on if you are able to make that second shot or if you decide against it.

 

Agreed with all of that. Sadly, your last comment pretty much sums it up.

@recentlydizzy

Yeah, I could definitely think of much better $10,000+ week long vacations, but I couldn't not do it given my condition (and that they take Visa ). If nothing else I needed an excuse to get out of the country for a little bit. I used to travel all over the world for work, and haven't been on any trip since I got MM. More updates to follow....

 

No matter how it turns out ... I think it was worth it just to know if it will help you or not.

A nice trip to Germany would have been in the $3000 + range anyway

We can't live in 'What if's' when we have the opportunity to find out

 

Amen to that! If one has the means, then why die wondering?

 

We can't live in 'What if's' when we have the opportunity to find out .

Caroline, love this!!

 

I totally agree,,, if you can afford it then try it all if you believe it might help.

Im a skeptical person by nature but I am wary of it causing me fear too not try things. But I believe everything should be tried before going down the surgical route.

 

Thanks for keeping us posted gfsound - we're all rooting for the Orthokine to eventually help. You've been great to document your experience in such detail and no matter how it turns out, we'll be here to support you. I really think a cure for this disease will happen in the next 10-15 years, so hang in there...!

 

how you doing buddy?

 

I'm doing much better now- back to work, functioning, living. But I attribute this to normal ebb and flow of the affliction. As usual, I can always feel the beast kind of lurking around back in there, threatening. That attack I had after Germany was for sure one of the worst, with nearly 2 weeks of misery. However, I will say that I didn't get vertigo (just dizzy), but at times the other symptoms (fog, ringing, pressure, hearing loss) were so bad I was almost hoping for a vertigo attack just to get it over it (I clear up quickly after vertigo).

I'm nearly at the month mark where I'll report back to the Dr.'s. Otherwise, it's a hurry up and wait game. As of yet, I obviously cannot say the treatment was a success. I will need to see some significant sustained relief from my symptoms before I am willing to go out on that limb. Of course I'll keep this thread updated, until such time that I choose a different treatment modality (i.e. SS), at which point there can be no objective assessment of the efficacy of Orthokine FOR ME. While the Dr.'s said it might take three months to see results, I may not be willing to wait those three months if I know other treatment options are available that could possibly alleviate my symptoms. The only guilt I have over that route is my allegiance and (self imposed) obligation to the forum and to the medicine; to see this treatment protocol through and be able to give it a fair shake. Moving on quickly and trying multiple modalities at the same time-as I have so often done in my relatively short tenure with Meniere's- has been the norm for me, rather than the exception. However, when I balance the possibility of saving my hearing and/or relieving myself of further suffering vs. completing a personal objective assessment of every possible treatment program, the former will have to take precedence. The only regret I'll have is that when I get better (which I will), I may not be able to definitively share what treatment(s) should get credit. I do hope the good members of this forum will forgive me this transgression.

 

We forgive you

You have to do what is best for you. You are one of the people pioneering these treatments which we really appreciate. No one wants you to suffer longer than you have to.

 

Geoff,

You have to do what is best for you.I've been thinking that perhaps it is the MAV with you as you got better on mav meds. It will be interesting for me if you do SS and you qualify,ie have the immune markers.There is that other thread where I posted a link on the commonality of people with MM who also have migraine having auto immune components.I am aware that auto and immune imbalance are probably 2 different things.But have been wondering if SS has any opinions on this in regards to migraine involvment.

 

Quick question for you...do you usually feel crappy after a flight? Were your ears clogged during/after your long flight? did you ever have eustachian tube problems? what happens when you try the valsalva maneuver?

 

Did the migraine meds work for a spell, or was it again the natural course of the disease because symptoms came right back with a vengeance? Did the meds just stop working? I've been on meds to control migraines several times, and the most recent was topamax and diclofenac (Cambia- a migraine abortive), which did nothing. So I'm still unsure, and would be interested to see the results of whatever blood work is involved with SS.


"Quick question for you...do you usually feel crappy after a flight? Were your ears clogged during/after your long flight? did you ever have eustachian tube problems? what happens when you try the valsalva maneuver?"

Flights never bother me at all- flew all the way home from Germany drinking wine, eating whatever I wanted, talking to the guy next to me who had just done Orthokine for his knees. Earlier in the year I went to Maryland, and was fine for a week there after the flight, and after getting back (and I indulged there as well). Vasalva frustratingly never does anything for me. I have looked into (and had my Dr.'s look into) ETD very early on- sadly, it was ruled out. Food, altitudes, weather, barometer, phases of the moon, Mercury in retrograde, etc. never seem to affect my symptoms.

 

You got to do whats right for you at the end of the day as that is all that really matters.

Regards

 

not so fast...in-flight is not the problem, after the flight descent is when the pressure starts to build up could be for days...if you look at flight patterns, do your issues usually appear within 2 weeks after flying? When you say "vasalva doesn't do anything for me" that might be a good thing..normal eustachian tube will easily feel airflow with Valsalva, if it doesn't do anything, it might be blocked. Do you generally feel crappier in the mornings?

 

Well, I've had MM for about 19 months now, and only flown 3-4 times in that period. When you ask if my symptoms appear within 2 weeks after flying, I would say my symptoms rarely if ever ABATE for 2 weeks, so it would be hard to say if it can be correlated with flying. My several big vertigo attacks have happened at night, so if I had to choose mornings or evenings I'd say the latter.

However, if we work on the assumption that you are correct, what measures/treatments would you suggest I take? I'm all ears (ugh, I hate that pun). Thanks for the thoughts bubbagump!