Putting my money where my mouth is: NUCCA

Hank you can live ontop of a mountain!

 

I live about 1400 feet above sea level. And I'm in a Georgia foothill. Most of those Tennessee mountains seem high up, but that's just because the valleys are so low!

 

First a quick update. Then I'll write up a review. I have been overdue for a post on this thread, but have been really busy with work and family obligations the last few weeks. In any event:

According to the chiro, my atlas is pretty much in place and the treatments are holding between sessions. I have completed the 3 times/week course, and will complete the 2 times/week course next week. I will then be reduced to the 1 time/week course next week. I have had updated x-rays and they have "confirmed" the proper alignment of the atlas laterally (though he still thinks I need to be adjusted rotationally from time to time).

So how has that corresponded with my symptoms? Well, in short, it hasn't. For the first 3 weeks or so of July I had felt close to normal in terms of hearing and fullness, though not back to 100%. Two weeks ago today, I received a call from my ENT on a Friday evening simply because he hadn't heard from me in a few weeks and he wanted to see how I was doing (he's a really, really good doctor). I told him that I had basically been fine up until the day before where I felt the fullness was getting a little stronger and my hearing felt slightly low. But since I had been doing well for a few weeks I wanted to see how the weekend went before scheduling a follow-up. We agreed that I would call back on Monday morning with an update.

Well, that weekend went poorly for me. My hearing took another hit and I was having trouble with conversations. I went in on Monday (August 2nd) and the audiogram confirmed that my low frequency hearing was back down in the dumps. We decided to do a dex injection. Oddly, my hearing was even worse the day after the injection. On the bright side, it went back to semi-normal by Wednesday (August 4th). I went to The Vitamin Shoppe on the way home and purchased lemon bioflavanoids -- specifically -- and started taking 3 of those pills per day since then.

I remained functional for the rest of the week, but by the weekend I was starting to feel my hearing trend downwards again. I went in for a follow-up visit on Monday (August 9th) and the audiogram again showed that my hearing dropped. I told the doctor about the wierd way the dex injection affected me last time, but we agreed to try again. Once again, the next day my hearing was even worse but improved two days later.

I then went down to the University of Miami yesterday to have genetic testing. That visit was disastrous on a number of levels, but sort of irrelevant to this discussion. Needless to say I wasted the entire day down there, and at the end of the visit I was told to take dyazide for the next 3 months. I'll do as told, but I doubt it will do anything.

On the bright side, in the last 2 days my hearing has really started trending back upwards again. I can hear the TV like a normal human being again and I can talk on the phone. It's not 100% back to what it was before this current attack, but it's been getting progressively closer to normal.

 

Here is another thing to try, Wino. Cranial Osteopathy. The plates of the skull move differentiallý to each other. This treatment seeks to loosen the plates, creating some flexibility between them. The reason I surmise that this therapy might be beneficial is that the vestibular aqueduct is housed inside bony tissue of the skull. If the skull bones move differentially to one another then that tract housing the aqueduct might seal off or at least squeeze down. Something accounts for aural fullness. Impeding the flow of endolymph along this tiny aqueduct may be a reason. Also, it occurs to me that debris might occlude this duct, the crystals of calcium carbonate that supposedly cause BPPV. If one of those crystals gets caught in the aqueduct, well the result would be obvious.

Songbird reported success with osteopathy. Shortly after a treatment, her fullness, present for several years, released. It subsequently came back. And I do not know what the status is presently. But the mere fact that after years of fullness it went away after an osteopathic treatment should give folks pause to consider that the boney tissue of the skull might be factor leading to certain cases of aural fullness. I have recently been looking into this. It might give you another treatment to consider. Never stop trying.

 

Wino,

I might have some names for you, if this is under consideration.

 

So, here's my final assessment on NUCCA as it pertains to the treatment of MM. And I am going to put in my disclaimer here that this is simply my opinion on it based on my understanding of medicine, anatomy, science and personal experience having undergone the therapy for 2 months now. Furthermore, in the spirit of even-handedness I think it's only fair if write about both the good and the bad from my perspective. As some of you who have read my posts may know, I was a skeptic about NUCCA for the treatment of MM. However, I entered into the treatment regimen with an open mind and had no expectations one way or the other as to what, if anything, it would do for me. I was also intent on following all of the chiro’s instructions, so that I wouldn’t skew my results. At the end, I will list my personal conclusions about this experiment.

The Good:

To begin with, I understand why people who have been treated by NUCCA chiros rave about their experiences. I can say without qualification that my chiro is a really, really genuine and caring provider. The patient experience is superior to anything I have experienced at traditional medical offices. There was a far lower volume of patients and I felt that this allowed the chiro to spend far more time talking to me and making me feel better about the experience. He was knowledgeable in his field and spoke to me at length about the theories behind what he was doing and what he hoped to accomplish. From a patient experience perspective, I was extremely satisfied.

I can say without qualification that NUCCA had some benefit for me. For example, I had for quite a long time had stiffness and limited range of motion when turning my head to the left. That was fully resolved within one visit and I can turn my head fully in either direction. Additionally, I have far fewer aches and pains in my neck and back than I did before treatment. And yet another benefit is the fact that I no longer get numbness or tingling in my left hand when I use the elliptical trainer.

The doctor counseled me very well on lifestyle changes to make that improved my posture (not sitting cross-legged, using only one pillow at night, etc) and these changes have been incorporated into my life. One day, when I had an upset stomach, he even treated me with some homeopathic drops that knocked my nausea out right away. Overall, I physically feel better than I did before NUCCA. I also greatly appreciated that the chiro never made me a single promise during the process, and in fact told me up front he wasn’t sure if his treatments would help me. He was extremely candid at all times.

The Bad:

There is nothing about my experience that has changed my perspective that the philosophy behind NUCCA as it pertains to MM symptoms seems to make no sense. The chiro explained to me repeatedly about the theories of “compression” of the brain stem and cranial nerves, but this still makes no real sense when the facts of the human anatomy are considered.

One of the primary tools to assess for atlas displacement is leg length discrepancy. Having been assessed in this manner dozens of times over the last 2 months, I believe that it is extremely unreliable. Basically, leg length discrepancies are a subjective observation that can be impacted by any number of factors. Essentially, if a person were lying down in a way that their hip was even a tiny bit uneven, then the leg lengths are going to appear uneven. Further, a lot of this was simply eye-balling by the chiro. I know that in his heart the chiro believes he is able to assess this stuff accurately, but in my estimation it is impossible. Plus, chiros are not immune to the power of suggestion. For example, I noticed that on days where I had fullness and told the chiro that up front, he always found that I had a leg length discrepancy. By contrast, on one particular visit, he simply forgot to ask me how I was feeling before the treatment since we were engaged in conversation about other topics. My hearing that day was down and I had a great deal of fullness. Yet, that day he told me my legs were the same length and the rest of the examination showed my atlas was in proper alignment.

In my experience, I never had any visit where I felt a measure of relief from my symptoms that I could correlate to the chiro adjustment. Basically, I always left the office feeling exactly the same way as I did when I arrived, as it pertains to my MM symptoms (fullness, decreased hearing, distortion). In other words, if I was having a good day that day, I continued to have a good day. If I was having a bad day, I continued to have a bad day. My neck and back felt more loose, and my atlas has reportedly been realigned, and yet I have had to go back for more dex injections in the last two weeks because my flare-up has gotten bad again.

My Conclusion:

In reading over the experiences of the folks on this board who believe that NUCCA helped their MM symptoms, the common thread I see is these folks almost universally claimed some level of relief from their symptoms almost immediately. I’m not saying they claimed to be cured right away, but rather that they at least felt some almost immediate benefit in the short term that led them to go back for further treatments. I never experienced any such thing. It leads me to the conclusion that if one were to make the decision to try NUCCA, that if they felt no relief or abatement of symptoms within a couple of visits it likely means that NUCCA is not going to work for you.

My personal opinion is that the folks that have benefitted from NUCCA benefitted because of one of, or a combination of, either: 1) they benefitted indirectly from the correction of muscle spasms which in turn made them feel overall better; 2) may not have had actual MM, but rather some musculoskeletal process that mimicked MM; and/or 3) placebo effect. I have noted that in at least some cases, the people that benefitted from NUCCA had multiple health issues going on beyond simple MM. Given that I think we can all agree that stress can cause/contribute to attacks, the easing of some of those other problems through NUCCA created the appearance that NUCCA directly addressed the MM itself. A conclusion that may not be warranted.

I cannot say that NUCCA has “no” benefit. It clearly helped me with my neck stiffness and many of the minor aches and pains that I never even realized I had seem to have gone away. I feel “looser” and healthier than before. However, if a person here has limited financial means and/or no insurance, I cannot recommend that they use whatever limited means they have to pursue NUCCA therapy to any significant degree for the MM. My experiences have led me to the conclusion that NUCCA is not the panacea that it has been made out to be for MM.

As always, I stand by my primary principle: If it works for you, then it IS the cure for you. I don’t care whether it be NUCCA, acupuncture, yoga, magnets or any other thing in the world that has brought a person relief from their symptoms. But I would say that if someone is considering NUCCA to address the MM, I would go into it with very muted expectations and I would not agree to undergo therapy for months on end if there were no signs that it was working within a visit or two.

Now, this post got a hell of a lot longer than I expected it to, and I still didn’t even write out all of my thoughts. As such, I will be happy to take any questions or comments from anyone who has suffered through my ramblings so that I can address anything that I have left out in my summarization.

 

While I certainly appreciate it -- and I don't want to offend here -- there is no chance of me doing cranio-sacral therapy. The leading voice of CST in the United States (Dr. Upledger) is located less than 5 miles from my home, and even this is not enough to inspire me to do it.

 

My comment was regarding Osteopaths. I doubt anyone is offended.

Do you have an idea of what you will try next?

 

No problem. I just wasn't sure if you were recommending cranio-sacral therapy, and I didn't want to offend you if you felt it helped you out.

As to what I will try next....well, I agreed to take the dyazide for 3 months. I had taken it before, but always quit after a week or so because I felt it was useless. The neurotologist in Miami convinced me to give it more time.

In the meantime, I am doing the JOH regimen (minus the vertigo component, since I don't have vertigo). In addition to the JOH recommendations, I have added Co-Q 10 and quercetine to the supplements I take. Since I added lemon bioflavanoids specifically 2 weeks ago -- and have been taking 3 per day -- I have finally in the last couple of days been feeling like this flare-up is getting under control. It's the closest I've been back to normal in over 2 months now. If things keep trending this way I will stay on JOH for the foreseeable future. Also, about 2 months ago I started drinking 3 cups of green tea per day. I can't explain it exactly, but I find when I drink the tea I feel a slight relief from the fullness I've been getting. And it's not just because the tea is hot, since I don't get the same feeling from coffee.

Finally -- and the key part to the "Wino regimen" -- I engage in a minimum of 30 minutes of intense cardio exercise every day (I took tonight off, but it's my first break in weeks). I find that the exercise makes a demonstrable difference in both restoring my hearing and reducing the fullness for the hours after a vigorous workout. My hope is that the combination of the JOH supplements (desgined to increase blood flow in the ear, reduce inflammation and suppress herpes replication) coupled with the mechanical increase of blood flow through the ear byt way of exercise will finally get me over the hump and back to my normal self.

 

I find it odd people dismiss the diuretic treatment so quickly and easily because it doesn't seem to work in "a week or so" but they will hang on to other treatments for many weeks or months hoping for relief.

 

In my case, when I tried the diuretic before I was actually feeling more pressure in my ear than in any episode of fullness I ever had before. My ear became painful, which is something that never occurred during prior episodes when I wasn't taking the diuretic. I asked the ENT about it, and neither of us could figure out whether this was just a coincidence or whether it was somehow a result of the dyazide. So he told me to quit taking the dyazide and see what happens. The fullness and pain went away the day after I quit the dyazide, so I quit taking it altogether.

Now, both my ENT and I acknowledge that there isn't any obvious reason that the dyazide -- due to the way it works -- should have caused any increase in symptoms. But, since I felt better when I quit taking it we decided to let sleeping dogs lie. The neurotologist thinks I need to take it for a minimum of 3 months before I know whether or not it will work. Since I don't have fullness and pain right now, I'm willing to give it another shot. I started taking the pills yesterday.

 

Maybe you are sensitive to the type of diurectic you were taking. I actually tried a couple of them before I settled on Dyazide. Even with Dyazide it took about a month before my body got used to it.

 

Wino, have you tried challenging your diet with some food elimination? No grains or dairy for 2 weeks to start.
Have you considered consulting with a different NeuroT to get a different perspective on your case?
Have you eliminated the chiropractor from your treatment? You do know there is a true Nucca practitioner
20 minutes from your house, right?
Are you absolutely, positively sure there is no autoimmune, allergy, stealth infections going on? Any tick, horsefly bites? Any exposure to toxins, insecticides, pesticides, viruses other than the normal flu? Have any rashes, fatigue, swollen glands, low grade fevers, night sweats? Glandular health, thyroid, adrenals, testosterone?

Sometimes when you fish in the same hole, you just get the same fish. Maybe all this looking in the same place is not where you might find some answers. Put the concentration on your ear aside and give a hard look at your total health.

 

I have not tried any true elimination diets, and to my knowledge I have never had any allergies at all. The only thing I eliminated in earnest was Diet Cokes, and that was only because during my episodes I felt that it was aggravating my symptoms. I haven't had a Diet Coke in months, and I have switched over to green tea for my caffeine needs.

Further, I believe there is a strong genetic component to my case. I am one of 9 children and at last count 5 of us have been experiencing similar issues. My case is the most severe, and it wasn't until I let the family know what was going on that my other siblings came forward to express that they had similar symptoms. We are a very stoic family when it comes to negative events, and complaining is not something we "do." Allergies are not common in my family, either.

I have not eliminated the chiro yet. If the true NUCCA practitioner you are referring to is Dr. Gumberich, well that is the guy I am seeing (20 minutes from my house). I plan to finish out the treatment plan moreso for the side benefits I have experienced, but not for the MM. As I stated above, I don't believe that NUCCA is effective for "true" MM.

Never had any tick bites, horsefly bites, etc. The only time I ever got botten by anything was a bee when I was 6. I rarely, if ever, get sick, even during flu season. I had a brief head cold last year when my daughter brought in a bug from daycare. I don't get rashes, fatigue, sweats or anything like that. My hormone levels are all normal, too.

As for seeing other ENT's, I have consulted with 2 general ENT's and 2 neurotologists. Everyone's perspective thus far has been the same. I tried contacting Dr. Bartels' office in Tampa by e-mail (at the "contact us" link on his site), and nobody ever responded. That's common, though, because those links on web sites seem to go bad frequently. I am planning to set up a consultation with him and see if I am a candidate for anti-virals. I e-mailed him first, though, to see if based on my history anti-virals even sound like a possibility. I don't want to make the 3.5 hour trip to Tampa for nothing.

At this point, I am pursuing the dyazide, JOH, the other supplements I mentioned and an exercise program flor the time being. I woke up today with almost completely normal hearing for the first time in a long while.

 

Wheat intolerance/celiac disease is not an allergy, and many people who have it have NO obvious intestinal symptoms. It is fairly common to have migraines and/or MM symptoms caused by wheat intolerance--and the predisposition is genetic. While once thought to be a childhood disease, characterized by obvious malnutrition and severe gastro symptoms, it is now understood that symptoms can bypass the intestines entirely, presenting instead as neuro, skin, joint, thyroid, etc. disorders.

Many people have found that although they tested negative with blood work, they actually DO have it, and that their symptoms resolved on a gluten-free or wheat-free diet.

As far as the possibility of Lyme disease is concerned, Lymenet reports that over 50% of those diagnosed with Lyme disease do not recall having ever been bitten by a tick, and an even higher number did not have the "bull's-eye" rash. In addition, it can apparently be transmitted in utero, so it's possible (if you are in your 30's or younger) that your mother may have been infected before you were born, and transmitted the spirochete to you and your siblings. I'm not saying that that is likely, merely a remote possibility.

I think a food sensitivity is much more likely, and am very surprised that you haven't looked into this further.

 

Yeah, me neither. I thought giving up wheat/dairy/etc was the dumbest idea I'd ever heard.

 

Wino, I really appreciate you "putting your money etc...". The way you use your words is extremely cohesive. I too have tried NUCCA. Sadly it didn't work for me either. I believe other people when they say it has worked for them but have no opinion on whether or not it is true MM. Just always to happy to see something worked.

I see you have a rather intensive regime going on and am so glad that it's working for you. Like Hank said don't stop what works and keep looking for it if something doesn't. Sounds like sound advice that you've taken to heart even before you decided to try this type of treatment. I'm glad that it does help your health in other ways, it just proves that, NUCCA, works for many people for many things.

Thanks once more for what you've taken on. Oh, and you didn't prattle on - I was hanging on every word =~)

 

Yep, Wino-

It is with posts like yours that we all learn! Thanks so much for all the time it takes to re-tell your experiences!! The chiro has helped me with dizziness and headaches. However, I still have the fullness, hearing loss, etc.........some days are better than others. Nature of the beast.