Chronic Fatigue/POTS/IBD & the Gut-Neck Axis

“I worked with a chiropractor prior to my orthopedic neck surgery. As I described my FM/CFS symptoms, he said, “What did you do to your neck?” I mentioned I’d been in a serious car accident 10 years earlier, sustaining a whiplash injury. He said he had yet to meet a patient with CFS who didn’t have a history of neck trauma. He said there was a theory that any sort of injury to the cervical spinal column either released a component that led to the disease, or allowed one to enter the spinal fluid.”

 

The quote above was lifted from the comments section in a 2007 article on chronic fatigue, which is interesting in its own light, as it discusses a viral hypothesis for CFS/ME. Rather than going into this now, which is plausible to me based on the positive impact of FMT on CFS, considering a healthy microbiota is likely to be inherently anti-viral, I’d rather stick with a discussion of the biomechanical overlap between IBD/CFS-ME/POTS, and then relate that to gut ecology.

I suffer from CFS/ME in addition to ulcerative colitis, asthma, and other inflammatory conditions. I also, as many of you know, have a history of neck trauma, caused in a traffic accident years ago. For me, the neck injury acted as a trigger for most of my health issues, so I have recently suspected vagal nerve damage as a possible root problem. The VN mediates inflammation and immunity in the body, to a large extent, and controls heart rate/BP, hormonal output (adrenals, chief among them), organ function, including gut transport (suggesting constipation, GERD may be related to VN damage), so it’s easy to see where a wide range of symptoms could have this common thread.

I’ve dubbed it the “Gut-Neck Axis” because I’ve found healthy alterations to my gut flora are just as curative (or at the least, beneficial) as achieving proper alignment of my neck! Either will provide relief, whether it’s a glass of home-brewed kefir, a chiropractic adjustment, or a manipulation I can do on my own.

Why would this be? Does an adjustment of my neck release electrical “noise” in my central nervous system, a bottled up energy produced by pathogenic or translocated gut flora (SIBO), or is it simply taking pressure off my vagal nerve, which could allow it to engage more bandwidth in performing its tasks?

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My guess is both are true, because the neck is the physical fuse box between the brain and the enteric nervous system, the “gut brain”.

When hyperadrenergic POTS kicks in for me, my blood pressure and heart rate accelerate, I get obvious tinnitus, a stuffy nose, my gut stops moving, and I get very heat-intolerant. Much to my amazement, in recent days the use of a posture pump will stop all these symptoms, and quickly. Right away, I can feel peristalsis occurring, my nose opens up and I can feel my blood pressure dropping.

If I’m in the car and don’t have access to the device, often times just relaxing my neck, jutting my lower jaw forward a bit, and tilting my head back slightly will do the same. I’ve found it’s important to also try to elongate my neck as much as I can, by using muscles that extend it, whilst I simultaneously try to keep it limber, not stiff. At other times I get relief from just gently pushing in on my lower jaw (while it’s very relaxed), which seems to realign upper cervical vertebrae. There’s a zen to achieving this posture. It has taken practice, but luckily I get instant feedback when I’m doing it right, so I’ve made good progress.

By the way, it should be noted since we’re all different, I’m not recommending anyone try what works for me. This is not medical advice, and anyone reading along should consult their physician before attempting anything described herein.

The third leg of the stool, in this Axis, is active stress reduction. In any situation where I feel a high sympathetic state coming on, calming my mind, paying attention to breathing ( in for a count of 3, out for a count of 4) will act as a brake, and slow things down. For me, CFS/ME feels like a cardiovascular issue. I notice when hyperadrenergic POTS symptoms are flaring, I find it exhausting to stand; with my neck aligned properly I have much more energy.

One theory regarding a trigger for CFS is a vagal nerve infection, and I am not discounting this, but what if it’s also an impinged nerve, a transient impairment, that can be corrected with a spinal adjustment? It’s pretty clear to me my health issues have multiple avenues for healing, and there’s likely to be more than one root cause.

So to my broader point: in an attempt to simply feel as good as possible, I’ll continue to do each and every thing I’ve learned is having a positive impact on symptoms, whether it’s biomechanical or more related to gut flora. Since we know it’s a feedback loop, my theory is a neck injury can create a pro-inflammatory state in the gut that discourages the growth of vital gut flora. Stress can, too. Each of these, in turn, creates an inflamed gut that further discourages a healthy microbiome. It’s a vicious cycle. But by adding in cultured foods, probiotics, FMT, perhaps this reduces the electrical “noise” in the CNS, which makes mechanical manipulations less important.

I do know when I’ve done FMT a few times, it’s as if I’ve been seeing a chiropractor regularly. It’s all about relaxation, tilting over into a more parasympathetic-dominant mode, and a happy neck creates a happy gut, creates a happy brain. Furthermore, getting back to CFS, I notice FMT gives me a lot more energy. I can see where in the study cited above they may have had a much higher response rate with CFS/ME if the participants had simply done FMT for a longer period of time, say 6 to 8 weeks, rather than merely two to three days. I’d love to see another FMT study where participants were also given gentle chiropractic adjustments with an activator tool, massage therapy, and participated in guided meditation.

In the comments section I’d appreciate hearing from you. What are your own coping methods for cooling off the gut brain, staying in a more parasympathetic (restful/restorative/digesting) state? Also, if you have identified a neck-related trigger for IBD or CFS, which biomechanical approaches help the most? Have any of you had cervical spinal (neck) surgery? If so, what results have you had? I figure someone out there with IBD (ulcerative colitis or crohn’s) has had cervical spinal surgery and I’m very curious if this may have alleviated or improved the IBD.

 

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Healing from POTS

How did I get here? My symptoms of a stuffy nose and breathing trouble began after a motorcycle accident 22 years ago. At the time, I was more concerned about the rest of my body than my neck. It was stiff and sore for a few weeks, but I shook it off, and moved forward in life. About a month after the accident I began getting asthma attacks that would start with a stuffy nose. Tachycardia was also an issue, cropping up when I was exposed to allergens like house dust. Too bad some doctor back then didn’t order imaging studies of my neck. They probably would have seen the loss of normal curvature (lordosis) of my cervical spine, a condition known as “kyphosis”, which can be caused by traumatic injury.

I saw a neurosurgeon last week, and he felt surgery to open up my cervical spinal channel would improve my symptoms. He couldn’t promise anything — a favorable outcome, reduction or elimination of any specific symptoms, and he cautioned I might come out of the surgery feeling worse. “I can’t predict the future”, he said more than once. He suggested gentle, focused chiropractic, and neck traction, as things to try instead of surgery. Overall, his was an honest assessment, and one I could appreciate. But I’m not ready for someone to cut into my neck yet. And this particular surgeon seemed to know nothing about POTS. I described my symptoms and he referred to them as “vague” or “diffused”. To anyone familiar with dysautonomia, I would consider my description as classic, and typical, of autonomic nerve dysfunction, orthostatic intolerance, but these are not common diagnoses, unfortunately.

So I’m trying to tackle my health issues on a limited budget, and get the most impact I can for the effort. Neurofeedback worked well to deal with the background anxiety of illness. All these symptoms take their toll, and I felt these sessions were soothing me, but the effects only lasted a few days, and they were not cheap.

In the last week I’ve seen a new chiropractor who uses the “activator” method. It’s a precision hand tool that delivers a measured, consistent pulse of pressure to the spine, in a focused, gentle way. Most of the time you barely feel the adjustment, but it does work. I’ve noticed the effect bloom over the course of three or 4 days after. And this chiropractor is working in a very methodical way, starting from my hips and low back, paying attention to leg length, and then testing various neurological responses to find subluxations all the way up to my cervical spine. After 3 visits I can say i’m feeling a noticeable improvement, and I plan to continue treatment as long as I can. Thinking back over the development of my health issues, chiropractic has been one of the most helpful, but also has been damaging, when the wrong approach was applied at the wrong time. I want to stick with rehabilitating my cervical spine as much as possible, since it seems to be the source of so many issues.

POTS, be it hyperadrenergic like I seem to have (diagnosis pending), or the more conventional hypotension form, can also have an autoimmune component. The last few blood pressure spikes I’ve had didn’t seem overly related to head position, neck movement, etc. Sometimes my neck and head just starts to get hot, and I can feel my pulse and BP rising, usually after exercise or eating a meal. Both activities can release histamines, which in turn can activate mast cells. MCAD, or mast cell activation disorder, is a theoretical cause of POTS according to some researchers. They’ve found for certain patients an antihistamine will control symptoms just as well as more conventional approaches like beta blockers or blood pressure medications.

Diet is something I’ve been tinkering with for about a decade, and it has consistently yielded good results. Not necessarily linear progress, but the overall trend has been favorable. Two days ago I decided to give up dairy products altogether, and this was after a dairy holiday of two days reduced or eliminated many of my symptoms. Things like tinnitus — now nearly gone after a weekend of being dairy free. The fullness in my ears, congestion in my sinuses and nasal passages, slowly getting better now. My overall mood seems more stable, less anxious, less brain fog and fatigue. This blogger here has a very interesting theory about casein allergy and how improperly digested casein can affect neurotransmitters, even months after stopping dairy consumption. Basically, they are suggesting casein peptides can “lock up” certain receptors in the brain and create a wide range of neurological symptoms, including insomnia.

Sleep, for me, is the final frontier. Just as I thought I was sorting it out, last night I had another episode where I went past the 11pm tipping point, and was soon staring at a clock reading 1:45AM, with pulse pounding. In moments like this, I’ve decided to just take half a Klonopin, which for me is half the lowest .5MG dose, and go to sleep. It works. And sleep is too precious to miss, especially since going without for a night makes the POTS symptoms much worse.

The ultimate goal, of course, is to sleep well without any pharmaceutical aid whatsoever. I’m hoping with diet, chiropractic, and things like consistent exercise and meditation, I can achieve this in the near future.

I always seem to wrap up with a thought about the worms. My helminthic therapy has been paused by the use of Levaquin antibiotic, but the hookworm and whipworm should be back “online”, laying their eggs, in another 6 to 7 weeks (October 15th). I’m hoping by that time I’ll start to experience their longer term benefits, which could include a reduction of most, if not all, allergic symptoms. Can these worms “cure” my POTS? Well, during my bounce back in April, 2011, all my various aches and pains disappeared. I’d settle for feeling a fraction of that relief now, and have high hopes helminthic therapy will compliment all the other measures I’m taking.

Biomechanics.

I’m not sure how typical or unusual this is, but I found out last summer the hypoglycemic symptoms I’d been having, and also the electrical jolts in my extremities, the hair falling out, numbness in my face, the dimming vision and tinnitus — I found out this wasn’t early stages of MS, as I had feared, or any other major medical situation. Instead, I was referred to a great chiropractor, he adjusted me for the first time in my life, and this treatment alleviated all these seemingly disparate symptoms.

His explanation was pretty simple: the neck can slip out of alignment from bad posture in front of a computer, this compresses key nerves that send impulses to every organ of the body. An adjustment will “reboot” the nervous system, and reestablish these important connections. Realignment of “subluxations” can also improve blood flow to the scalp and brain. It took a few sessions for the benefit to stay consistent, and for the last few months I’ve been feeling pretty good.

Don’t ask me why I didn’t just go back to the chiropractor when things went haywire a week ago. Today I did, and I’m feeling much better. Not 100% yet, but much improved.

The question remains, why did the helminthic therapy effects seem to disappear, and once my neck and spine are behaving again will I suddenly feel that “worm high” coming back? Time will tell. Today I was noticing their characteristic GI disturbance again, this after many days of a normal gut, so I know my “old friends” are still with me. For now I’m just trying to focus on the big three: adequate sleep, a good diet, and consistent exercise.

TMJ, by the way!

My helminth express seems to be off the rails for a moment. Allergies are returning, anxiety is back, so are restricted airways, both in my chest and head. My neti pot offers scant relief for this strange congestion, as there appears to be no mucous, only inflamed tissues. You don’t realize how horrid asthma is until it’s been bannished for 60 days, and then suddenly returns.

Since it’s no fun to go from feeling good and carefree to fairly awful, I’ve spent the last few days trying to figure this out. Why did I suddenly start having blood sugar issues again? Was it that one fateful night I had a tiny sip of scotch (no irony, it was only half a shot) with friends, and stayed up way too late? Were my adrenals already hanging by a thread, and that slight nudge was enough to upset the whole apple cart?

Or did this frustrating turn of events happen when my jaw slipped out of joint? Seriously! TMJ,  or temporomandibular joint disorder has cropped up occasionally in the past. It’s annoying because it’s impossible to chew anything without pain, and then there’s the fear of further dislocating the joint. It was about a week ago when my overall health began to backslide, and the TMJ happened first. Is there a connection? Quite possibly, and it’s a strange one.

Apparently, trauma to the nerve near this joint can stimulate the release of “substance P“, which doesn’t get recycled in the body, and has endocryne-like properties. There seems to be no limit to the odd sensations and behaviors provoked by “substance P”, according to one article i read, including itchy skin and an urge to swear. $%@#!! No wonder. What resonates for me in the reading I did tonight are symptoms of tinnitus, and autoimmune issues — specifically, lots of pain and histamines, with acute inflammation. And let’s not forget anxiety and insomnia… or asthma, for that matter.

So is substance P actually the culprit, and is it capable of upstaging the helminth harmony? Or is this combination of factors, like adrenal fatigue from years of prednisone use, inattention to an optimal diet, lack of sleep from too much (half-caf half-decaf!) coffee, and stress from work — did these factors collectively take me off the HT track? Probably “all of the above” and it’s going to be a slow, steady road back. But I would love to think “Hey, man, it wasn’t me — it was the substance P.”

Day 53 — Stability.

Today offered the strongest clues yet that the side effects phase is beginning to resolve. I woke after a fairly sound sleep with decent energy, and only a little of the brain fog and dehydration I’ve come to associate with “worm flu”. My appetite is slowly beginning to emerge again, and I’m able to tolerate the fairly narrow range of foods in my current diet quite well. I’ll test myself with more choices later, once I know I’m not reacting allergically to the helminths anymore.

Exercise is a key barometer — I continue to not only tolerate it, but I am starting to thrive on its effects. Curiously, it really seems to mediate my body’s reaction to the HT. I can feel the strength returning to my legs, as I push myself along at a good clip, searching for fatigue that never seems to come. My breathing is consistently clear and unaffected by temperature, humidity, airborne allergens, etc. By all measures my asthma and upper respiratory complaints are gone.

And it’s also time to celebrate 3 consecutive days of no worm-induced GI disturbances. My gut no longer feels tender, and I’ve started to gain back the weight I lost due to several weeks of compromised digestion — 5 lbs in about 6 days. So I’m now 149 lbs, 11 under my ideal target weight. That’s significant!

Tinnitus is only audible these days when I’m having a reaction to the HT, which came again this afternoon. I was able to deal with the symptoms by taking five 1,000mg tablets of vitamin C. That’s half of what I’ve used in the past, and the attack only lasted 90 minutes — about half the duration of a typical episode. This is one more indication my body  is beginning to submit to the iron will of the worms. The total absence of tinnitus throughout most of the day suggests my adrenal function is normalizing.

I’ll be quite happy if the trend continues, with modest improvement, for the foreseeable future. Obviously, I’d like to start feeling some of the more euphoric moments like I did during the initial “bounce”, post-inoculation, but as my sleep patterns rebalance (I still feel a touch of insomnia), and my diet becomes more varied, I would expect the benefits to start ramping, perhaps even with some synergy.