an ER trip, two sphenopalatine nerve blocks, PT, some Rick Simpson Oil, and hyperbaric oxygen therapy

Someday, I'll have to actually stop writing this blog - and not because I'm too frustrated to sit in front of my computer and put one more ounce of energy into thinking about my headache - but because there simply won't be one to write about.

Someday...just not today.

It's been a really tough last few months for me, pain-wise. I'm not sure how else to sum it up, and that in itself is hard for me because I hate feeling like I'm complaining or stuck in a negative place more than anything else. As always, remaining optimistic and hopeful that my headache has an expiration date requires a daily (sometimes hourly) conscious effort. It's more exhausting than I know how to explain, and everyday I think about all of the things I want to (and plan to) put that mental energy into instead. But for now, that's how it needs to be spent.

Despite the ongoing challenge, though, there's been some amazingly positive reason for celebration. During our much-needed vacation back to New England, the one-of-a-kind human who's been by my side through every up and down over the last five years asked me to marry him (to which I of course said, hell yes). If there's one bright light that's come from my all of my pain, it's the unrelenting strength of the relationship that Craig and I have built. I know I've said this before, but it's worth repeating: As anyone who's on this journey can understand, chronic pain is so much more than physical discomfort. It becomes a state of ongoing mental agony, fear, frustration, panic, and isolation. But Craig makes sure I never, ever, ever, feel like I'm in it alone, and that is like a whole different level of love. For so long, getting married was something that we put on the "other side" of my headache. We'd get me out of pain first, and then the wedding. But then we both realized that we couldn't let my headache have more control over life than it already did. So now, I can look down at my beautiful ring and be reminded not only of how strong our love and commitment to each other is, but also that my pain will not win. 

So, here's where my headache is at...

Just when I think my 24/7 headache can't get worse, it has a way of finding a new level of pain (just one reason why the standard 1-10 pain scale is completely worthless to me). I've had a couple of really severe pain spikes that, once subsided, continue to redefine my baseline "normal." In early June, I ended up in the ER after a horrible night of through-the-roof pain that kept me awake and vomiting. (An IV infusion of Toradol, Tylenol, Zofran, and Benzodiazepine got it under control enough to go home after a few hours.)

In an attempt to tackle what we suspect is centralized pain, I've also been experimenting over the last few months with some new strains of medical marijuana, including a few kinds of CBD oil and Rick Simpson Oil. In general, I've had some mixed results with marijuana - sometimes, it seems to take the "edge" off (though not substantially) but it also knocks me out pretty hard, making it impractical to use my vaporizer or ingest the oil orally any other time other than right before bed (and even then, it can negatively impact me the following day). The Rick Simpson Oil is pretty interesting and has gained some attention for its use in alternative cancer treatments. Granted, much of the claims are anecdotal (which is okay in my book given the potential risk-benefit). It may be worth looking into for any readers looking for some non-pharmaceutical pain management options (disclaimer: whoever designed that website was likely stoned). And here's a brief explanation of the difference between CBC oil and Rick Simpson Oil:

For good reasons, CBD and Rick Simpson oil are receiving attention. There is not shortage of studies and anecdotal reports that show the beneficial aspects of cannabis. However, there is some confusion surrounding CBD oil, and how it is related to Rick Simpson oil. While they are similar in many aspects, they are still very different products.

Both oils are made from the same plant: cannabis, respectively hemp. From a botanical perspective, cannabis and hemp belong to the same plant genus - cannabis. However, due to geographical factors and through breeding, the plant has developed into different species and strains, which produce a different harvest: Hemp produces few and small flowers with low cannabinoid content, but in exchange hemp produces high amounts of fibre, which are used in many industrial applications. Cannabis, on the other hand, refers to the recreational and medical plant which produces big and potent cannabinoid-laden flowers, but only small amounts of fibre. Again, they are botanically from the same plant family - just bred into different strains that yield another product. Further, the Rick Simpson oil is almost always made particularly from Cannabis indica strains, which have been shown to be more effective for physical ailments. 

And since my last post, I've continued my weekly physical therapy treatments. My range of motion, strength, and just movement in general have really improved, so these sessions have been focused primarily on manual modalities like dry needling, laser, and other soft-tissue work in an attempt to get the spasm through my neck muscles and traps under control (with the ultimate goal of affecting the pain that the spasm is undoubtedly causing, or at the very least, contributing to.) Most recently, I've added a few extra sessions per week, incorporating some needling work further down my spine and into my hips (desperately just trying to get my whole body in better condition so everything on top has a better chance of following). Excuse my white ass.

I've also been seeing a new pain doctor, Dr. Townes, for a series of sphenopalatine nerve blocks. The procedure basically consists of getting a very thin plastic tube stuck up your nose to insert numbing medication in and around the sphenopalatine ganglion (SPG), which is a group of nerve cells that's linked to the trigeminal nerve (the main nerve involved in headache). Like other nerve blocks I've had, the procedure is diagnostic - so IF it helped, the next step would likely be an ablation (similar to the dorsal root ganglion ablation I had a few years ago). Dr. Townes wanted me to do a series of 2-3 blocks, but didn't think it would be worth doing the third if I hadn't felt any relief after the second. I've had two now and haven't felt any change.

I do go back to see him this Thursday though to figure out where to go from here. My physical therapist (and Craig and I) really think that I could have some irritation with my spinal accessory nerve, so a block to that nerve is a potential next step to pursue. The accessory nerve (AKA cranial nerve XI) supplies the sternocleidomastoid and trapezius muscles, both of which are completely locked up for me. A functional convergence of sensorimotor fibers in the spinal accessory nerve and upper cervical nerve roots ultimately converge with the descending tract of the trigeminal nerve and might also be responsible for the referral of cervical pain to the head

There's one final treatment worth telling you about: Hyperbaric Oxygen Therapy (HBOT), which I started last week at Hyperbaric Oxygen Therapy of Arizona. Here's the gist (from their site)...

HBOT delivers 100% oxygen at a pressure greater than sea level atmospheric pressure while the patient is enclosed within a certified pressurized chamber. The patient breathes 100% oxygen while covered under a hood, or while wearing a mask.

When red blood cells deliver only a limited supply of oxygen to tissue cells, negative physiological changes occur. Injuries, infections and diseases can cause a drop in tissue oxygen level to almost zero. World wide research confirms that breathing 100% oxygen under pressure forces the oxygen to reach those tissues and body systems affected by injury, infection, or disease and accelerates the body's healing process. Statistics from Hyperbaric Oxygenation demonstrate tremendous improvements in hundreds of conditions such as slow healing wounds, migraines, brain injuries, chronic fatigue, spider bites, and even Cerebral Palsy.

Benefits of Hyperbaric Oxygen Therapy:

• Increases neuronal energy metabolism in the brain
• Can create sustained cognitive improvement
• Wakes up sleeping (idling) brain cells that are metabolizing enough to stay alive but are not actively "firing"
• Enhances the body's ability to fight bacterial and viral infections
• Deactivates toxins and poisons (e.g. side effects from some chemotherapy, spider bites, air pollution, etc.)
• Enhances wound healing by stimulating the growth of new capillaries into the injured area
• Creates an immediate aerobic state
• Removes free radicals
• Reduces tissue swelling
• Acts as an anti-inflammatory

Each session is 90 minutes long. I have my fourth one this afternoon, and will do at least 10 before I decide whether to continue with more. So far, I haven't felt any changes in my headache but it could very well take even more than 10 sessions (a recent fibromyalgia study, which resulted in drastic reduction and resolution of pain, required 40 HBOT sessions). If you're interested in learning more about HBOT for chronic pain and/or headaches, here're some helpful research I'd recommend checking out...

Hyperbaric Oxygen Therapy: A New Treatment for Chronic Pain?

Hyperbaric oxygen could provide relief of chronic pain

So, that's where I'm at. From a pain management perspective, working out (including trying to spend more time back on my bike, when possible) continues to be the most effective way for me to keep my blood flowing, endorphins up, and sanity in full (or at least partial) supply. Hopefully I'll have some next steps mapped out after my pain doc appointment later this week. 

Thanks for reading! xo