Putting my money where my mouth is: NUCCA

So here's a bit of a nightly update, now that I just completed another cardio work-out:

First off, I developed a bit of a new symtpom today I have never had before. This is a persistent, low-level tinnitus in my left ear. It sounds almost like a dial-tone for the telephone when you first put the receiver up to your ear. I noticed it while at work, but assumed it was just some sort of mechanical hum from my office fridge or the a/c unit. But once i got home I realized I was still hearing it. It's just an odd, odd sound and it's non-stop. Not debilitating or anything, just way different from anything I have experienced before, and only in the left ear (which is burnt out).

In terms of the right ear, I developed fullness right around lunchtime for about an hour. Then it went away. I got it again for about 15 minutes when I got home from work, but then it went away again. My hearing has been fairly crappy all day today and I was really struggling to participate in conversations. I just finished my cardio work-out, and just like every other night my hearing is slighlty improved right now. The improvement is not as good as it was last night, but it's still better than before I started the cardio work-out.

I will now ice my neck for a little while and maybe pop an Advil before bed in the hopes that I can prolong the feeling of relief. I'll see the NUCCA guy tomorrow afternoon for another adjustment. I will also have my screening CT scan tomorrow to make sure that there's not some other process going on.

 

First of all Henry, moving my post out of someone else’s thread is pretty rude and arrogant if you are not the moderator IMO. Who are you to judge whether a post is appropriate in one thread or another when it is not your thread. If you don’t like where I put it don’t read it or ask me to move my post to another thread. I thought it appropriate to post in Wino’s thread for a couple of reasons, I agree with Wino’s tactic whether intentional or not to try different treatments at the same time. I also felt it was appropriate because of his title,” Putting money where my mouth is: NUCCA”. I felt the title would be appropriate for you and wanted to express my thoughts on the matter.

I will post a response to your post later when I have time.

 

Nwspin,

I did not move your post, I moved mine. I have no ability to move yours, nor would I had I that ability. I should have authority over where I make my own posts, should I not? Wino made it clear that this was a blow by blow account of his experiences having undertaken NUCCA treatments. Whether you think it germane to take this thread the way it did, I do not argue, but my response to yours, in my mind, did nothing but take this thread to a place it was not designed to go. Therefore I placed it into another thread. I thought it to be the courteous thing for me to do, not arrogant, courteous. If you want to respond, and do it here, or there, or in another thread of your choosing, you have that lattitude. I will not call you arrogant for doing what you think is best regarding the OP's intentions.

Regarding your thoughts on the matter, those thoughts drifted into blaming me for your past decisions, the most crucial of which occurred before I even joined the forum. You said it; it sounded bitter. I accept that you are not. I am glad to speak to all that, but again, this I do not believe is the place for such a response. I therefore placed mine elsewhere, under a thread of my own, where that topic has already been taken up, and dealt with, and now dealt with again.

Hank

 

The left ear tinnitus is very interesting, Wino. I assume that you have had no hearing in that ear for a while? While I had these symptoms, the low level tinnitus always associated with my inner ear area. Whenever I began to feel fullness coming on, it was always accompanied by that low level, almost digital tinnitis. Since this is new for you, I expect that it is a result of the NUCCA treatment. Something has reopened a channel to the left inner ear, which if it is burned out, could only be sending corrupted signals, which might be what you are detecting.

Unlike that sound, my residual tinnitus, from before Meniere's symptoms and after, is a high pitched hissing sound. And as long as I remain in adjustment, it is almost undetectable. Perhaps interesting, I went for an adjustment myself on Tuesday. I had been feeling a little out so I went. Sure enough I was and got an adjustment. I felt fine afterward. That afternoon, at a job, I picked up a ladder and carried it a few steps. I tripped over a pile of crap and went down like a house of cards. There went my adjustment, and ever since, the hissing has been at a very detectable level, and in both ears. And of course, my chiropractor is out until the 8th. So I am stuck with it. It is incidents like that though, that have pointed me to understand that this high-level hissing noise is directly from the brain stem area. If I press on my head, or torque my neck, I can momentarily intensify this hissing. Others have reported the same phenomenon. So I expect this is the case.

The cardio work you do, low impact or running? A few years ago, when Winde's trigeminal neuralgia began flaring up, we were runners. And many times, her face pain would begin to flare up while we would be at the track. We figured that it was the cold weather that triggered it. Not so. As it turns out, it was the impact of her feet on the track, working up through her spine, that was working on a herniated C-6/7 disc in her neck that was the culprit, this I understood years later though. For over a decade, the source of her pain remained a mystery. So something that you are doing with your workout is having an effect on your symptoms, or at least seems so. That is worth pondering.

Is the CT scan before or after NUCCA? I ask because someone I know recently had a CT of her skull, the positioning of which for the scan threw her adjustment way out. She is new to NUCCA as well. So just a word for the wise.

Thanks for the updates.

 

Wino-

My chiro stated he just wanted me walking until I hold my adjustments better. I am going to ask him about yoga. I know exercise is very important when one has Meniere's. Just wanted to share another thought.

Love your posts.............
KT

 

Which raises a point. Wino, did you clear your exercise routine through the NUCCA doc? Many times when folks begin, the docs would prefer rest and cold packs, certainly for a while.

 

Hank,

A couple of responses:

My left ear burned out in the sense that I get no fluctuations, fullness or vertigo attacks. What I have been left with on the left side as a baseline is essentially profound hearing loss across all frequencies and tinnitus. I do, however, have residual hearing in the air. It just isn't functional on its own. Interestingly, the newest ENT I saw told me that I would benefit from a hearing aid on the left as he feels that with today's hearing aid technology the ear can be made functional. So to an extent the left inner ear channel has always been "open," it's just making a different sound now

With respect to the cardio work-out, I have a low-impact elliptical trainer at home. I don't do road running because it bothers my knees. With the elliptical trainer I get the cardio work-out without the associated impact, plus I get the added benefit of using my arms with the machine. It's really been great for my overall health.

As for the CT scan, I am doing it after the NUCCA appointment. It was the only time I could get in, and I'm more concerned about getting the test done at this point than I am about anything else. I need the films so that I can take them to my ENT appointment set for 8/12 to be evaluated for a possible genetic cause for my hearing loss.

 

I ran it by the chiro and he told me he was absolutely supportive of using the elliptical trainer (he uses one himself). He thinks it's better for me because it's low-impact and it will get my blood flowing through my muscles better therefore strengthening my body's ability to hold adjustments.

 

Wino,

Oddly enough the chiro I used to see was against yoga if you can believe it. He thought the whole thing was "bad" for the body. I can agree that some positions might cause more trouble if executed incorrectly but to poo-poo the whole practice I thought was yet another example of throwing the baby out with the bath water and his crazy ideas.

I really like the sound of the elliptical trainer. There's a guy over at mvertigo who claims he cleaned up his migraine problem substantially by using this machine. For one, it gives the brain a balance workout and second, the body a physical workout. He said he at first felt much worse (no suprise) but now feels he has tamed the dizzy beast.

Scott

 

Today's (7/2/10) update:

When I went to bed last night my hearing was "slightly" better than it had been all day, but still well below par. I woke up this morning and felt my hearing was actually improved over the night before (unusual, because mornings tend to be worse). So, to keep the momentum going, I jumped on the elliptical trainer for about 15 minutes right after rolling out of bed just to get my blood pumping. By the time I took my shower and headed downstairs for breakfast, my hearing seemed to improve a little more even.

As the day progressed, my hearing just kept getting clearer and clearer to the point that by the time I got to the chiro at 1:00 I was "almost" normal. I had no fullness, though still had some of that new tinnitus. At the NUCCA chiro today, he adjusted the atlas again briefly and we discussed my symptoms over the last 2 days since the last visit. I told him how I actually had my worst day on Wednesday and still had a pretty bad day Thursday, but had woken up better and was getting progressively better as the day wore on. I told him about the new tinnitus in the left ear, and he was as stumped as I was about why that happened. He then measured my leg lengths again and told me that they were basically even and that this was good.

After the adjustment, I was put on the muscle stimulator again for 15 minutes. I had some tightness in my neck and trapezius muscles after the acupuncture session on Wednesday. He put some Biofreeze on the area after the muscle stim. At that point, he offered me a second adjustment to my lower cervical spine. He used the Gonstadt (sp?) technique and basically adjusted the levels of C6-C7. There was definitely the cracking sound this time. I don't know if it made me feel any better, but it didn't make anything worse, either.

My hearing has been very, very close to normal all day today. I keep taking the L-lysine (3,000 mg), vitamin C (1,000 mg), vinpocetine (30 mg), Co-Q 10 (100 mg), quercetine (can't recall the dosage, but 3 pills/day) and the B-complex bioflavonoids. I picked up the anti-virals today but decided not to take them yet because my symtpoms have been negligible today. As I sit here right now, I feel a sort of "sizzling" sound in my ear. But there is no distortion at all and I can hear people just fine both in person and on the TV/phone. I went to dinner with my wife and daughter, and despite the restaurant being packed and loud I didn't get any of the recruitment or hyperacusis that I had been getting for the last couple of weeks.

I also had my CT scan today. They gave me the films on a CD to take to the doctor, but I have no idea what they show yet.

 

That is all very good news, Wino. Thanks for the update.

 

Hey, folks. Looks like I haven't nurtured this thread in awhile. I'll bring things up to speed:

When I woke up on Friday (July 2), I actually woke up feeling better from most of my symptoms. Since getting my blood moving seems to have such a direct, positive effect on me I immediately took my doses of L-lysine and vitamin C for the morning and jumped on the elliptical trainer for 15 minutes or so for just a quick pre-work session. Although I felt like there was a droplet in my inner ear when I first woke up, that feeling went away after the elliptical trainer.

As the morning wore on, my hearing was demonstrably better. By the time I saw the chiro on Friday afternoon my hearing was very near normal. Just to be safe, I have refrained from drinking Diet Cokes (I used to drink 6-7 of these per day) and I haven't been drinking alcohol (I usually have my two glasses of red wine with dinner). I can't really explain it, but I feel like my body has been telling me to stay away from the stuff while I heal. In the past several days I have looked at Diet Cokes and felt repulsed. With the booze, I successfully drank a glass of red wine on Sunday night as a test. I didn't want to tempt fate so I stopped at one.

Each day for the last week, I have been following the same routine. I get out of bed, take the L-lysine and vitamin C, and then hit the elliptical for 15 minutes. I do have my one cup of coffee with breakfast, at which point I also take my vinpocetine, quercetine, lipoflavonoids, B-complex bioflavonoids, Co-Q 10 and Niacin. I also take two more doses of L-lysine, vinpocetine, quercetine and vitamin C throughout the day. Instead of Diet Cokes, I now drink about 3 cups of green tea per day. It has just enough caffeine to ward off withdrawal, but also has tons of anti-oxidants and other good stuff. Then at night, after the daughter is put to bed, I jump on the elliptical trainer for another 30-35 minutes. Each time, I have felt better and better.

On Saturday and Sunday I had very brief episodes right around lunch time where I felt some fullness. On both occasions it lasted about an hour, but my hearing was never distorted nor otherwise affected. As of Saturday morning, my hearing has been basically back to normal. I qualify it with "basically" because until I have an audiogram I won't know if I am exactly back at baseline. As most of you folks should know, a 10 dB loss might go unnoticed to the person who suffers it, but it is still measurable. It has now been 5 straight days without any significant hearing problems.

Yesterday, I had to travel from South Florida to Colorado Springs, CO (where I am at as I type this) for work. I was dreading the possibility that the air travel and altitude change might derail my progress. I am pleased to report that it has not done so (at least not yet, fingers crossed). I even had a couple of cocktails last night (vodka and soda, no wine), and felt fine.

My only complaint right now, actually, is that my neck is really sore and tender. On the bright side, I've schedules a massage for myself at the resort I'm staying at and am headed there shortly. I fly back tomorrow early in the morning, so we'll see how things go.

 

If nothing else, you are motivating me to get back exercising! Glad you are well. Enjoy the trip.

When do you go back to NUCCA?

 

Wino,

Glad you stopped drinking so much Diet Coke. The evidence is not there but I would still not feel good about dumping that much aspartame into my body. Stick with the tea. I have never heard a bad thing about the elliptical trainer. When I get back from Canada and the US in July, I MUST start this.

Hank, I'll be driving past your neck of the woods – to Atlanta from Toronto. We should go out for a beer (I'll be drinking water) and continue to thrash out our arguments. LOL

Scott

 

When will you be here? That sounds great.

 

Thanks for the up-date! I have been watching your thread closely. You are really working it hard! I am impressed...........
KT

 

I think it is a very good idea to eliminate the Diet Coke and other likely offenders from the diet. Diet is a huge issue that is sometimes hard to control...but I really think it is a major factor for many people.

 

I have gone on and off caffeine free diet coke and it (aspartame) made no difference at all even in quantities. Caffeine did make a difference to me. The easiest way to ditch the caffeine without headaches for me was to make the coffee as usual every morning except that every 3 days I subbed one tablespoon of decaf for a tablespoon of regular grinds. In little over a week, I was off caffeine with not withdrawal. Unlike the sodium, the caffeine seems to make a difference to me. You probably could go to cf diet coke if you really like the fizz.

 

Actually, there is plenty of evidence that aspartame is associated with all kinds of adverse effects, including migraine: http://www.wnho.net/independent_aspartame_experiments.htm
neuro side effects: http://www.aspartamesafety.com/PR2.htm
sudden cardiac death: http://www.communicationagents.com/sepp/2003/09/26/dropping_like_flies_poisoned_by_aspartame.htm

 

Taximom -- are you going to start telling us that aspartame is evil as well and a conspiracy by the soft drink companies? Yes, it's a migraine trigger but:

http://www.aboutaspartame.com/pdf/Critical_Reviews_evaluation_summary.pdf

• Aspartame’s metabolism is well understood and follows that of other common foods. Aspartame consumption, even at levels much higher than that expected under typical circumstances, has virtually no impact on levels of other blood constituents such as amino acids, methanol or glucose.
  
  Aspartame is a well-studied sweetener whose safety is clearly documented and well established through extensive laboratory testing, animal experiments, epidemiological studies, and human clinical trials.
  
  Controlled and thorough scientific studies confirm aspartame’s safety and find no credible link between consumption of aspartame at levels found in the human diet and conditions related to the nervous system and behavior, nor any other symptom or illness.
  

Hank -- I'm travelling with my father and his wife. I'll have to see what the itinerary looks like when I get to Toronto in 2 weeks.

Scott