My experience with Nucca chiropractic for neck pain

Hi everyone,

I have seen a couple posts about nucca (National Upper Cervical Chiropractic Association) on this forum and wanted to add in my experience in case it helps anyone. For those who don't know, nucca is a chiropractic adjustment style that does not involve cracking or quick movements. It's very gentle and my chiro explained it as using the positioning of the body/head to create somewhat of a trigger system which helps guide the atlas bone (C1) back in place.

Some background on my journey: I suspect, as does my integrative MD, that bartonella may be my only infection, but we don't have confirmation yet. I know most folks here also have lyme (and I mean, I might) but I thought this would be helpful since I know it can eat away at connective tissue and of course for those with bart/mcas. I had some elevated mold and candida levels on an OAT, and have Mast Cell Activation Syndrome (or some type of inappropriate mast cell activity) based on symptoms and excellent response to mast cell stabilizers (cromolyn sodium, quercetin). We are currently trying to stabilize my mast cell issues further, addressing candida, and I am on binders for mold. Only been on Welchol for about 1.5 months now and honestly haven't noticed a difference, but I know these things take a lot of time. I can't do cholestyramine for various reasons.

I have shown symptoms of infection/mcas since childhood, but it wasn't until about 5 years ago that my health took a deep downward turn, and I have been mostly house bound since two years ago. I won't go into detail there because it would be a novel, but neck pain was one of my first clues, looking back, that something wasn't right. First it would happen when I would go into the city (I was living on a farm for a short time) or travel in any way, but I'm not sure if it was because of the stress of travel or because I happened to take CBD on those days too. Then it started happening with PMS. Then from exercise. Then just all the time. These are clues for me that it might be problems with my connective tissue as it relates to mast cell activation (reactions to CBD, exercise, and hormonal fluctuation are not unusual). I do not have EDS, but I know mcas is related to other connective tissue problems and I often wonder about how it might contribute to laxity, since when my mcas went out of control, all the joints in my body started popping. I also know that bartonella has been implicated in mimicking hEDS, proving its contribution to joint laxity, and is highly linked to MCAS.

So, for whatever reason, I likely have cervical instability. When I started seeing my integrative doctor last April, she suggested I give nucca a try to see if it provided some relief. At this point, my neck pain kept me in bed most days if I did anything physical whatsoever - walking around the block triggered it. This is what kept me bed bound. I read up on it, read the differing opinions, and went into it with a massive grain of salt and skepticism as my self protection mechanism. I also had a chiro adjust my neck in the past without my consent and I did NOT want harsh adjustments. However, with all things chronic infection related I also tried to keep an open mind otherwise I'd get nowhere, as you all know. I started in April of 2021. It's all a bit fuzzy now but I think for the first couple months I didn't notice too much either way, maybe slight improvement. I think with all things we go in hoping it will be a sudden immediate improvement but it ends up being a slow process. I wish I had kept a diary so I can tell you what I noticed, but suffice to say that I kept going and I wouldn't have done so if I didn't notice at least a hint of improvement. I did leave almost every appointment with a small voice in my head wondering...is this a scam? Then one day I went in feeling particularly bad, and noticed pretty immediate relief. Not 100%, but very noticeably better. I've kept going, and I realized the other day that somewhere along the line I stopped being in so much pain. I have been going out with friends for a few hours and not thinking solely about how much my neck hurts. I have been able to go to my university class and mostly focus on the material. I have been able to walk to the grocery store and not be in complete debilitating pain the next day (not all the time, but much more often than before). I can now feel when I've gone out of alignment. It's hard to describe because it's subtle but then the pain comes back and it's the same. Nucca, I feel, is absolutely helping me to have less pain.

I do want folks to know is that I started this process at the same time I started getting on cromolyn sodium, which took April-Oct to get to a full dose. While CS is shown to mostly stabilize the mast cells in the GI tract, for me it has absolutely had systemic impact and I think it's because they're pretty interconnected. Less inflammation in the gut likely means less inflammation elsewhere. Anyway, so my improvement is probably partly attributable to more stable mast cells (nowhere near perfect though), which allow me to hold my alignment better. This is my own personal opinion though.

So nucca and addressing mcas has brought me from house/bed bound to somewhat able to participate in life. No where near normal, of course. I still feel like crap most of the time from other symptoms, but my neck pain is SO much better. I honestly forget most of 2020 because I was just so uncomfortable from the pain and misalignment. I work from home, but I am able to go to school for my two classes and go out for a short time with friends without the constant awareness that my body was in deep deep discomfort. I know that it's kind of a band-aid, since I still go out of alignment from many activities, but if we can reduce at least one source of pain it can make life more bearable.

The NUCCA has been a part of my life for over 30 years.

I was on maintenance (going every couple of months ) and overtime I was going less and less until I just stopped.

Then many years later I came home from work (very busy office job) and was resting on the couch - when all of a sudden I woke with a very sharp pain shooting from the bottom of my head down my neck and left arm. My arm was limp.
The pain was so bad my husband took me to the ER.
I got heavy pain killers.
Over the next few months the pain lessened and I went back to work.
And then it hit the fan… The pain came back and I was getting new symptoms weekly.

A year later I was diagnosed with Lyme.

I currently see my NUCCA chiro every two months for a tuneup.

I don’t know if the Lyme is related to my cervical spine issues or not.

Interestingly - my chiro asked how I was feeling during my last adjustment. I said I had some pain in an unrelated area - my left shoulder blade area.
He pressed his thumb in that spot and it hurt like heck.
He said it was my 4th rib was out.
He scolded me and said I had waited too long for the adjustment.
(I should be going every two months but I had waited 3-4 months.)

The appts are $55

No worries about your skepticism !!

I have a maintenance, what I call “straightness check “ coming up soon and I have not been there in three months.

Personally I think that was kind a long time, but the Nucca chiro said it would be a good test of holding.

I’ve been beating myself to death at the gym more than ever and shoveling snow every other day which is a lopsided event itself, so if my neck is still straight , that will be a miracle.

Thanks for sharing, astroman. I'm so glad this has worked well for you too, and happy to hear other success stories.

I agree regarding the body shifting to a new state of normal, but the person I spoke to felt very strongly that nucca unfortunately brought on scary symptoms that they did not feel was safe to push through to see if they got better. Not for me to say whether or not it is something they should have stuck with. I don't think that's most people's experience, but I wanted to share because I think it's deeply important for people to listen to their bodies and to know that it's okay to stop something if you feel unsafe. And that healing modalities are complex - what works for one person may not for another!

Yes, three months certainly is a good test of holding! I always find it so interesting that my maintenance check-ins have so far also been pretty spot on for how long I will be able to hold, I often lose my alignment within a week before that appointment.

Thanks for sharing all of you! As I’ve said before on this forum, my newest docs suspect I have cci/chiari and I’m in the middle of getting a neurosurgeon to look at my scans.

The thing is my neck doesn’t feel tight or hurt. I’ve developed his bumpy rash on the back of one side though. I did a traction trial and it mostly just made me worse. I have started bpc 157 in hopes that if it is the problem it might help some. We are still thinking of going to an atlas chiro, but just not yet since my current doc doesn’t want me going yet.

Thanks for sharing though!