Happy New Year! Well almost. I exclaim this as a hope to all my fellow MM sufferers rather than as a fact. I've posted little here, read a bunch. As I travel my MM journey, I spend much time researching causes for my symptoms and my diagnosis. I cite them separately as the symptoms are fact, the diagnosis is opinion. Another fact is that 2 plus months on JOH have kept the worst of my symptoms at bay for almost 5 weeks. While the news is great, the cyclical nature of my symptoms give pause to my claim of success with JOH. I found an interesting link to a site discussing upper cervical misalignment as a cause. I find this interesting as I have such misalignment which causes various symptoms like numbness in my right arm, neck pain, etc. I fell down the basement stairs 7 years ago, saw a conventional MD, then saw a chiropractor for a year with no abatement and made the decision to suck it up as I was unwilling to consider surgery. Now I wonder if the MM symptoms could be related to this injury. The only contrary data point is the decades of periodic vertigo prior to the tumble. Vertigo that was induced by crawling under my car, or working on plumbing under the sink. This issue first appeared over 10 years ago, long before my tumble down the stairs. At the time my Dr diagnosed inner ear damage with no resolution. The link I found discussing the connection to upper cervical injury is below. Have any of my fellow MM sufferers ever heard of such a possibility?? I guess I thought the nerves associated with MM do not travel the spine. http://blairchiropractic.com/Menieres-disease K
Personally I believe that there could be a cervical connection for many. Not all - since with this thing there is nothing that is the same for everyone. I started NUCCA over four years ago. While I didn't experience immediate relief for vertigo, it did eliminate my ongoing headaches, neck tension and left over limp from torn ACL. At that time though I still had major stress in my life - and stress is a huge trigger for me. To date, I still go to NUCCA. Nucca/Blair/Upper Cervical there are many names with similar treatment. From my perspective, if you have a dr near you trained for this treatment, I personally don't see a reason why "not" to give it a try. That is my perspective, a personal one. Good luck.
Thanks for the input/encouragement nicmger. I have located an experienced Blair resource in Springfield, Il, It's a bit of a drive , but I consider it as a good non-surgical option. I already know my past injuries make me a good candidate. Not in a hurry right now as I am celebrating 6 weeks of no symptoms (except tinnitus) while on low sodium and JOH. I am a bit hesitant to go as I had a not so great Chiro. experience after my last upper cerv. injury. Feeling symptom free, DW and I are planning to hike the Buffalo River wilderness in Arkansas. Gotta enjoy the moment and get ready for the next flare. exercise actually relieves symptoms for me. Stress is a trigger for me as well. I am knocking at 59 and each year I experience reduced work related capability/adaptability. I'm striving to hang in there until 62. After that, I plan to catch up on 20 years of missed fly fishing. K
I got my answer about JOH, or at least a significant input. Another flare decided to pay me a visit yesterday. The howl/distortion returned along with light pressure, no vertigo or dizzy spells. If this is as bad as it gets, this will be a positive change. Today I see my general Dr. for blood work and physical. I plan to have the anti viral discussion with him. I also found a NUCCA Chiro close to work. I hope to schedule an appointment in the next few weeks. My original hope to visit a Blair office in Springfield is unrealistic as they want you in twice a week. The drive makes such a schedule difficult unless I quit my job. Happy New Year!
Had a good visit with my general Dr. today. We spent about 45 minutes talking about this past year, my MM diagnosis which he was unaware of. He agreed with my path as he believes surgery is only after all other less invasive options get exhausted. He agreed to support me and prescribe when I am ready to try valacyclovir. He believes the antivirals are safe as they have been used for years for herpes treatment. I told him I wanted to give JOH a few more months before moving to larger caliber weapons. I also advised him I plan to visit an NUUCA in the next few weeks. Again, he agreed that it is worth a try. Blood work will include heavy metal toxicity this time around. They sucked me dry from both arms. I guess the visit went pretty good. I can't remember the last time I spent 45 minutes with a Dr. K
That's great he's open to antivirals. But I wouldn't wait. Hit this thing with JOH and valacyclovir at the same time. Also, make sure you're not getting Mylan brand generics.
Congrats! It is AWESOME that you have an open minded doctor (most are not!). If it was me, I would jump on the anti-virals immediately rather than waiting. You can take JOH at the same time. I have had success with the Northstar generic - but the Mylan generic was worthless for me anyway. For Nucca (at least my dr) the goal is to get you to stay in alignment so while the initial treatment plan may be 2x week depending on how your body adjusts it should reduce from there. At my prior dr before I moved across country, I was holding alignment for 3-4 months! Now I go in 1x month - I don't think the new Nucca dr is as good but I don't have any other options. I will share again - if it was me, I would start the antivirals immediately following the standard protocol. 3x, then 2x then tapered to 1x. Good luck!!
I take it you guys don't think low sodium and JOH is likely to be a solution? Even short term? I have a 7YO mri showing C5/C6 issues. I planned to focus on the NUCCA next. Neck pain tells me it's time to do something anyway and there is a potential interaction with MM symptoms. Especially if Atlas and Axis (C1/C2) are now involved. This weeks flare is backing off a bit. Back down to moderate Tinnitus, no dizzy spells/vertigo. I chose to pursue NUCCA before the AV's as I am not ingesting anything when exploring the alignment issue.
For me, and from what I have read for most, low sodium and dieurtics rarely have any impact at all. It is a doctor that isn't offering any true solution...in my opinion. As it pertains to JOH, many have experienced some relief but believe even JOH agrees that attacking with antivirals as well is not a bad idea. Not sure why it would be a problem for you to try antivirals while trying Nucca? The two are not exclusive. In my opinion you could have both Menieres and a cervical issue going on why not go at it hard? That is my opinion is to not let it get a foothold. If it is Meniere's the sooner antivirals are started the better it will be to prevent further destruction of your ear and hearing.
That's why I think antivirals should be the very first script for anyone who thinks they might have Menieres. Because if it works, it protects from hearing loss and going bilateral. Using it as a last resort before surgery is far less optimal.
It's been 3 months of JOH and reduced sodium. I am celebrating as the flares are growing shorter and of lessor intensity. I have started PT for my upper cervical issues as it was locally available and provided by work. The process is proving painful with a hope of improvement. I will evaluate after a month of treatment. I did experience one strange phenom for the 1st time ever. I was driving and felt like the bottom fell out underneath me for about 30 seconds. I best describe it as zero gravity. It faded away and I attributed it to low blood sugar. No dizziness, just zero G. Without recurrence, I am just chalking it up to another gift of God. I plan to continue the current path in hopes to be ready for hiking the buffalo river wilderness with W the end of May. Gonna do some SM Bass fisshin to boot.