Putting my money where my mouth is: NUCCA

Discussion in 'Your Living Room' started by Wino, Jun 27, 2010.

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  1. Wino

    Wino Resident Honey Badger

    I am as imperfect as anyone else in the world, but I generally consider myself to be a very fair and open-minded person. I have participated in many recent debates over the benefits -- or lack thereof -- of NUCCA therapy, and it seems that NUCCA proponents always circle back to the idea of, "You can't dismiss it until you've tried it." So, in the spirit of fairness, I am offering the board this real-time account of my NUCCA experience, which started on Friday. I am going to update this thread on each visit to not only track my progress, but so that we can have a non-revisionist written record of the progress. I have no idea where this journey will take me. Maybe I will be proven wrong, and I will gladly eat my words when my MM disappears. Maybe, on the other hand, I am out a few bucks and it makes no difference. That's the beauty of this experiment, that I have no control at all over the outcome other than making sure I follow through with the recommendations.

    So here is the backdrop history first, and I'll bring the board up to speed on my current status. It will be relevant for determining my particular baseline, and how NUCCA will or won't affect me.

    I've written before about my MM history. I developed left-sided MM in my late teens, but was not diagnosed until the age of 25 after the process had already burned out. Before burning out, I suffered fluctuating left-sided hearing loss, fullness and occasional drop attacks of vertigo that usually lasted 6-8 hours at a time. The vertigo would happen on average every 2 months. I have not had an attack like that in 13 years or so. I can hear sounds in my left ear, but I have profound hearing loss across all frequencies there. Basically, I have no functional left-sided hearing. I am 37 years old now.

    In late 2008/early 2009 or so, I started having some fluctuating hearing loss in the right ear. I went to see a ENT immediately as I am very protective of the hearing I have left in my "good" ear." I was diagnosed as having gone bilateral (some 12 years later), and treated with oral prednisone. The pred worked and I regained all my hearing. 4 months later, it happened again. Again the pred worked. 4 months after that (9/09) I had another episode. The regular ENT I see was out and his partner called in a medrol dose-pack. It did nothing for me, but the hearing resolved spontaneously a week later.

    In January of 2010 I had another episode. This time, the oral pred only partly restored my hearing, so I had two dex injections about 5 days apart. The problems resolved once again. Mind you, I have not been getting any vertigo during these episodes, only aural fullness and fluctuating hearing loss.

    For the purposes of my experiment, I am going to cut off the introductory post here, and in the second post I will get to the details of where I have been for the last few months and what my staus is like going into the NUCCA treatment (the first adjustment of which is tomorrow).
  2. Wino

    Wino Resident Honey Badger

    So, let's get ot the nitty-gritty of where I am now:

    Starting some time in March or so -- 2 months after my last episode of hearing loss had resolved with dex shots -- I decided to start a watered-down version of JOH to see if I could pro-actively stave off a future attack. I posted about it before, but I was bascally taking 3,000 mg of L-lysine daily, along with 3,000 mg of vitamin C (Ester-C brand). A few weeks into it, I felt that "sizzling" sensation in my right ear and started developing slight fullness, and then it went away in a day or two. I took this as a sign that the L-lysine might be working. I kept up my regimen.

    In the first week of June, I was on vacation with my wife and 3-year old daughter in Disney World. While there, I strated getting another ecurrence of hearing distortion, hearing loss and aural fullness. As soon as I got back on June 11, I went to the ENT and got a prescription for a tapering dose of oral prednisone. 5 days into the course, my hearing was completely unaffected and I became concerned at my lack of response. So by the 16th, I added the bio-flavonoids and vinpocetine to my regimen, in addition to niacin and a diuretic. Also, I started acupuncture on the 16th. The acupuncturist gave me some sub-lingual bovine adrenal extract to take to stimulate my body's adrenal response. Within 2 hours if the acupuncture visit -- after a week on steroids that did nothing -- my hearing retunred to 100%.

    I caught a plane for Philadelphia the next day, June 17th, for work purposes. I was fine until that evening when my hearing dropped back down to a very very low level with lots of distortion. I returned home on Friday the 18th and went back to the acupuncturist for another session. This time, it did nothing. On Monday the 21st, I went back to the ENT and he gave me a dex injection. Within an hour, my hearing returned to 100% normal again. It stayed that way until I woke up on the morning of the 24th, and I had terrible hearing again. The only thing I did in the meantime was attend another acupuncture session on the 23rd. I went to the ENT on the 24th for another dex injection, and this time it did nothing. I was frustrated, and on a whim decided to research NUCCA practitioners in my area (I am giving up on the acupuncture after 4 treatments).

    On Friday the 25th, the NUCCA practioner -- 33 years in practice, trained under Dickholtz, and certified in multiple other areas -- agreed to see me for the first somprehensive consultation. I will write about that consult in the next post, as I want to separate it out from the background. Very nice man, it went well. No adjustments yet. But that evening, being very frustrated with my hearing, I put in a call to the ENT and asked for a re-fill of the oral prednisone. He agreed to do it, as we had no other options.

    I took the oral pred (60mg) at about 8:00 PM on the evening of the 25th (Friday) and I woke up with my hearing back to almost normal. I have been close to normal (though not 100% since) with 2 more days left of the pred.

    More to come.
  3. studio34

    studio34 Guest


    This is a very interesting experiment on your part. What is particularly strong about this is the *real-time* reporting to remove bias which occurs to all of us when we report on things that occurred months or years ago –– especially how we felt after a treatment or trying to remember how bad or good we might have felt at any point in time. For that reason I'm glad I've kept a diary to keep things clear when I need to double-check. And given your symptoms, I don't think anyone can second guess an MM dx. It sounds like textbook stuff to me.

    One other thing I note is that you have had excellent results with prednisone and now dex injections. I keep hearing time and again here how medical science has nothing to offer for MM. Not so.

    Look forward to the updates ... Scott
  4. MrMan

    MrMan New Member

    Are you going to refrain from taking predisone and dex during the NUCCA treatments?

    Good luck Wino!
  5. Wino

    Wino Resident Honey Badger

    No, and I realize it might taint results somewhat, though not necessarily fatally. The problem is I have 2 days left on the oral pred and it is my understanding that it should not be stopped abruptly. As to the dex shot, the 3rd and final one is scheduled for tomorrow at 4:00 PM. the NUCCA appointment is at 2:00 PM. If my hearing is still holding up well by the time I get to the ENT, we might forego the third injection (risks vs. benefits and all that jazz).

    But by Tuesday I will be off all other meds, aside from the JOH stuff. And at that, I am not taking quite the full JOH regimen because I haven't needed the anti-vertigo components.
  6. corona

    corona New Member

    Good Luck! I hope it helps resolve/relieve your issues.
  7. Wino

    Wino Resident Honey Badger

    Okay, so here is my recounting (unfortunately 2 days late, but I was out of town this weekend) of my first NUCCA consultation on Friday, June 25th:

    My appointment was at 3:00, but I got there 20 minutes early to fill out paperwork. I filled out a very detailed written medical history questionnaire and laid out all of my prior history and treatments. As soon as I was done (maybe 5 minutes to 3:00), the chiro called me into his office for our first interview. As mentioned above, he is a very, very cordial, friendly and professional man. We sat in his office for a good 45 minutes just talking about my entire medical history and symptoms. I will say he has been more thorough in terms of spending time speaking to me than any medical doctor I have ever been to. We went through every possible instance of head and/or neck trauma that I might have suffered from birth through the present day. We spent ample time speaking about my burned out left ear, and about the newer symptoms on the right. I received a very informative lecture about NUCCA philosophy specifically, and chiro philosophy in general. I will give this doctor (Dr. Gumberich) tremendous credit. He was not "anti-medicine" at all, and was actually very scinetific in his approach. He explained that "pure" NUCCA practitioners believe that adjustments of the atlas alone will result in the full alignment of the spine, but that he prefers to use a "whole spine approach" instead. He has been practicing for 33 years and is extremely passionate about learnign chiro techniques and the science behind it.

    After the lengthy consultation I was taken to an examination room. The first thing he did was palpate my neck. He indicated that he could feel spasm and swelling at the level of C-7, C-5 and at C-2. He suspected an atlas (C-1) subluxation based on these findings, but was quick to point out that such a diagnosis could not be made by physical examination alone. He also took my own fingers to place them on the spasm area, and let me compare it to a "normal" area so I could appreaciate what he was talking about.

    Next, he took out a contraption that looks like a big stopwatch with two metal rods that stick out from the top (about an inch and a half apart). I forget the name of the instrument, but it's basically a form of thermometer. The idea is that the the two rods have leads at the top that measure the surface temperature on either side of your c-spine at the same time. In a "normal" spine, the temperature on the right should be equal to the temperature on the left (or at least have a very minor difference). If the temperature is hotter on one side, it is indicative if injury to that area. Using this gauge, he determined that at the level of C-7, I had temperature 5 degrees higher on the left than on the right, and this was consistent with subluxation and/or other injury. Same at C-5. Most importantly, he felt I had an 8-degree difference at C-2 on the RIGHT, which he was very concerned about as it was clinical evidence of a misaligned atlas.

    The next step was to watch as I did active range of motion with my neck. I had full range if motion turning my head to the right. However, he observed that my range of motion was limited to about 3/4 when turning my head left. Again, indicative in his view of misalignment and spine injury.

    Finally, we get to the x-rays. For those familiar with some of Hank's posts, they do that specialized x-ray series from 3 different angles to evaluate the angulation of the atlas. It was an interesting process. The first thing they do is take some bird-shot (little BB pellets). They tape on BB to each ear, one just at the very top of your nose (right between the eyes), and one on either side of the temporal bones. Basically, this is a low-tech way of creating reference points on your x-ray because the bird shot will show up opaque on the x-ray films. They use these reference points to draw the various lines through, and it is on the basis of these measurements that they determine: 1) whether you have a misalignment of the atlas; and 2) if so, by what degree. They can't do any adjustments until these films are develoed and all of the gemometric measurements are completed. So, in that regard, it was the end of the visit. He is evlauating those films now and will determine the proper technique to use with me on my first adjustment tomorrow.

    The final thing he did was he gave me one of those frozen jelly packs to take home. Since he noted spasm and swelling in my spine, he wanted me to apply the pack (wrapped in a towel) at frequent intervals at home over the weekend. Maybe every other hour for 20 minutes at a time. He felt any reduction in swelling and spasm would make a potential adjustment easier.

    Soup to nuts, the first visit cost $200. Tomorrow's vist will cost $60 for the adjustment.

    I will update you all on how it went tomorrow evening when I get home from my appointments.
  8. studio34

    studio34 Guest

    The next step was to watch as I did active range of motion with my neck. I had full range if motion turning my head to the right. However, he observed that my range of motion was limited to about 3/4 when turning my head left. Again, indicative in his view of misalignment and spine injury.

    My physio did the same thing to me and I had limited motion turning to the left as well 3 weeks back (maybe because I am right-handed and there is more muscle use on that side?). Anyway, after a session with her of palpating various vertabrae and muscle massage in spasmed areas, I had full motion again and have ever since -- she eliminated my daily crushing headaches. Interesting the chiro interpreted this as evidence of "misalignment and spine injury".

  9. vikx

    vikx New Member

    Thanks Wino! Great info here, I appreciate it. VK
  10. Funshine

    Funshine New Member

    Yes, Wino, this is excellent and I appreciate the time that you are investing in conveying this information on this board.

    I do hope that you find some relief; however, it sounds like the steroids have calmed things down a bit.

    I assumed that the steroids are given as first line with sudden sensorineural hearing loss due to the possibility of an autoimmune component; however, from a quick search on line, it appears that SHL, may be idopathic in nature or related to a number of other disorders including a viral etiology.

    So in my mind, here we are again, with that nasty viral component rearing its ugly head.

    Scott, my ENT told me that he would be willing to try anything to help, but in his words, as he shook his head "we just don't know" He went on to convey that the only way TO know would be to dissect my inner ear.

    I really was not up for that, particularly since I felt my innner was still of some use to me.

    I have, at times, felt like sticking a needle in my ear to relieve the pressure, and I can understand the mechanism supporting the local delivery of steroids as opposed to experiencing the effects of systemic use.

    Anything invasive comes with risks, so far, the only risk I see with NUCCA is to your wallet and from radiation exposure (although I am sure slight) with the x-rays.

    Best regards Wino, I enjoy reading your posts....and yours too Scott.
  11. studio34

    studio34 Guest

    Hey Funshine,

    MM really does seem to be like a moving target in the same way MAV is. It's no wonder there is overlap in these conditions. Migraine can make you tear your hair out because one person's miracle drug is another migraineur's poison. And even when one does work it can suddenly burn out and become ineffective as migraine seems to morph -- like a bug that develops resistance. I definitley appreciate that there is not much choice for treating MM and stopping its advance. It's more of Herculean management task it seems doing all you can to avoid attacks.

    Do most with MM get offered prednisone treatment or dex at some stage or is this considered radical and dependent on acute hearing loss?

  12. KTabc

    KTabc Cheese Head Dumbass

    The first drug my ENT put me on when 1st dx was a steriod. It helped tons! I thought is always would. But after 2 1/2 years it quit working. Same with the infusions. Steroids quit working for me. I feel the same with Serc. Miracle drug the first 2-3 months. Now, it is not doing much.

    I am tired.....................and wish I had a partner with health insurance so I could just stay home and sleep :) I have found a new chiropractor--not NUCCA--but he is helping with the headaches/neck aches. He adjusts my jaw and other areas that I didn't know could be adjusted! I feel like he has cut some of the dizziness also.

    Wino, the progress of your MM sounds almost like mine. My first spell was in 1995. But it took forever to get the right dx. No doctor took my complaints seriously (was going thru a divorce in 2003 and they all blamed the stress) Now my right ear is on the decline. I am scared/tried and just want to quit.

    Good luck with the NUCCA--sounds like a good doctor.

  13. Henrysullivan

    Henrysullivan New Member


    Please know from my stand point, that whereas you and I have had pointed discussions about this in the past, I want nothing but for you to have success in this effort, or any other you might undertake. I applaud that you are keeping a record of these events and posting them contemporaneously. We had another member do that two ir three years ago, Steveincolorado. A couple of months ago I retrieved his posts, in order, and reposted them. So this has been done before, however not in a thread separate from mine in the Database. So I think this is a great idea.

    I am stricken when I read stories like yours, of someone who gets diagnosed with Meniere's six or seven years after they begin suffering from Meniere's symptoms, and only after what you and others have termed, "burnout." I have been asked how my ENT could have surmised Meniere's so early in the process. I think the same folks should ask why it should take six or seven yours to surmise in your case. In any event, your tale gives me the impression that you have a distinct possibility of irreparable damage to the tissues of your left inner ear. I sincerely hate that this can happen.

    But now, approaching 20 years later, you are experiencing the possible beginning of a repeat of the symptoms, but now in your right ear. This should be very interesting for people to read along with you while you go through these treatments. I am particularly interested because reading these posts for as long as I have, I have formulated a theory (Yes, another one of Hank's theories :) ), that folks who have bilateral, have a better than average chance that something in their neck, as opposed to a virus, is causing their symptoms to develop. Recently, I asked John of Ohio about the incidence of folks who are bilateral and who might have been helped by the regemin. He could not think of any incidence, but also has not collected any data in that regard. But it makes sense to congecture that a virus traveling up the left side 8th cranial nerve, will not have much chance of finding the right cranial nerve by the means that it found the left. Like you have stated a few times in the past, I see nowhere that these nerves can talk to each other. To me, that means that the viral source for damage in your inner ear, while not impossible, is much less likely for folks who develop bilateral symptoms. Think of it this way, if, say, 2% of the population have 'viral' Meniere's in one ear, then statistically only 2% of that 2%, or .04%, of Meniere's sufferers would go bilateral from that kind of pathology. After all, the process that began working on the left ear, independent of that process, would have to also begin working in the right ear. So it makes sense that bilateral sufferers have less of a chance to have a viral source.

    But that is not the case for folks who have an upper cervical cause. That is because whatever the neuroligical mechanism is that initiates the damage that results in these symptoms on one side, by virtue of a similar condition existing on the other side, that mechanism is not ruled out by the statistics, as it would be in the viral case. We make a mistake to assume that, say, a clockwise misalignment might cause Meniere's symptoms on one side, and a counterclockwise misalignment might cause the other. That may be true, but I do not expect it to be true. Both Winde and I had 'clockwise' misalignments, and both of our sets of symptoms were decidedly on our left sides. But the torque and pressure placed on the brain stem is not only dependant on the orientation of the seeming rotation, but really the misalignment itself. Although it looks like it does, say in my x-rays I recently posted, the atlas does not really rotate. It misaligns. And one side might misalign more than the other, leading one to believe that it rotated, but it did not. The one side simply gets shoved back, or forth, further than the other, leaving it tolook rotated. And because the brain stem must pass through two holes, really three, one in the skull, one in the first vertebra, and then in the second, where the spinal cord begins, then the brain stem can be compressed by these bones. So I expect that many bilateral sufferers do so because of upper cervical causes, rather than others. For this reason, I am optimistic for you.

    I am interested to know how you will gauge success or failure of your experiment. Like you wrote, you have not really isolated NUCCA from the other treatments you are undergoing. In the end, I do not care how you improve, as long as you improve. Improvement is the result that you desire, so improvement is the goal, not justifying the improvement by any particular means. But for helping others, which I know is the reason you are posting this, it will help them to have a feel for the component of improvement that might conceiveably come from this treatment as opposed to any injections you receive. So that may require a subjective interpretation on your part. I would never say not to take an injection if you thought the injection might help your symptoms.

    You wrote that you had a discussion with the chiropractor about any upper cervical or head trauma you may have experienced in the past. I wonder if you wouls share that information with us here. I also wonder if you might share your x-rays with us.

    Finally, I am pulling for you, Wino. Whereas we discuss these things with vigor, that does not mean that we are adversaries at all, not at all. I view you as a friend, just as I view Scott. And I believe that we learn from each other's experiences, and thoughts, in these matters. But you can know that outside of any particular discussion that I have, telling what I believe to be true, no matter how it is received and reflected back, I only want for folks to get better, you, Scott, anyone. So I am really in there for, and it is not about NUCCA. It is about you, your family, and especially that 3 year old who recently went to Disney World. That youngster needs all of your attention, so I pray that this is an answer for you.

    Thanks for placing the effort here to help others. No matter how it comes out, I applaud you for creating this thread.

    Best of luck,

  14. KTabc

    KTabc Cheese Head Dumbass

    So, Hank--after reading your reply--it is your belief that those who go bilateral the main cause is misalignment? And that the proper adjustments can stop it from progressing?

    My left ear is in "burn-out" and my right ear has hearing loss now. My new chiro does adjust my atlas and I feel like he is helping. Your post has given me some renewed hope!

  15. Henrysullivan

    Henrysullivan New Member


    I do not know if I believe it, as much as I surmise it, and for the reasons I give. I have no particular experiences to draw from. So yours and Wino's will be the first. I believe that it makes sense.

    I will include you in my prayer for success.
  16. Henrysullivan

    Henrysullivan New Member

    I will add one thing here, Wino, and that comment goes to your title. Your money is going "where your mouth is." Since your mouth has in many ways tried to disprove the possible efficacy of this treatment, then you money, by that title, is toward the same goal. But I do not believe that your intent is to fail. I believe your intent is to exhaust all possibilities, of which this is one. Still, there is that title. Just thought I should make that point.
  17. Wino

    Wino Resident Honey Badger

    A couple of things:

    Truth be told, I have only myself to blame for the delay in diagnosis on the left. At the time I developed a problem, I was young (18-19) and not particularly medically sophisticated. In my mind, I never made any connection at all between hearing loss and dizziness. I only found I had a hard time hearing people on the phone with my left ear. And the vertigo was so sporadic without any obvious trigger that I just assumed I had a strange brain problem. It was not until I finished all of my schooling and started working that I went to an internist for the sole purpose of having a physical and establishing a health baseline. During that visit, the internist went through my whole review of symptoms and I mentioned very much in passing that I had left-sided hearing loss and that I used to get dizzy (though had not been for a couple of years by that point). He's the first one to ever mention MM to me and he referred me to an ENT. I had no idea what any of this was. When I saw that ENT back in 1998, I was asymptomatic from a vertigo standpoint, and my hearing loss had bottomed out. I had tinnitus, but not enough to affect me functionally. At that stage, the ENT told me there wasn't much to do except that I could consider surgery only if the vertigo came back and was disabling. I assumed I would never deal with MM again (other than the, apparently, permanent loss of functional hearing in my left ear).

    As to the second part:

    The first and most obvious thing he wanted to know was how many auto accidents I have been in during my life. I have been in a total of 3, and the most recent one was in 1993. In one of those, I turned left in front of an oncoming car (I was 16 at the time) and had front passenger damage. I was belted and did not feel injured. The second one, a car ran a stop sign and I hit him broadside. Belted again, and not injured. In the third one, a car turned left in front of us, and I was an unbelted passenger in the back seat. I was thrown forward a bit, but did not strike my head.

    Other than auto accidents, I told him about one head injury I had as 5-year-old where I fell off my sister's back during a piggy-back ride and landed on the back of my head on the street. I threw up blood and was taken to the ER. Other than a concussion, I was fine. I also played soccer for 12 years, and practiced martial arts for 5 years. I'm certain I had many instances of jarring during those activities, but I never suffered a direct blow to the head or any type of concussion.
  18. Wino

    Wino Resident Honey Badger

    It wasn't meant in a pejorative way. It was more of a "put up or shut up" challenge I put to myself.
  19. cc635

    cc635 New Member

    Thanks for this post Wino. I will be watching for your results. I hope that something works for you.

    I have symptoms in just one ear right now, but the eCOG shows me as bi-lateral. I did have a head injury and my OTO said that is very likely the cause of my MM, so I have been considering NUCCA as an option. My symptoms are pretty well managed at the moment, so I am not moving forward quite yet. Good Luck!
  20. Wino

    Wino Resident Honey Badger

    Oh, and a final note because it's important for the experiment:

    The thing that made me try NUCCA, specifically, was that I seemed to get full relief from the dex injection I had on Monday, June 21st. My hearing was back to normal. On the Wednesday (23rd) evening, I went to sleep feeling fine, but I woke up with a very sore neck because I slept wrong. My hearing was also completely distorted that morning.

    I re-started the oral prednisone on Friday (25th) evening after the second dex shot (on the 24th) had no effect. My hearing was fine on Saturday and yesterday. This morning, my hearing is on the low side again, though not as profoundly bad as it had been on Friday morning.

    NUCCA visit is at 2:00, and the ENT visit to follow is at 4:00.

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