Month: October 2019

I visited my physical therapist today (which is to say that since we were back in the town where we used to live, I scheduled appointments for myself and Spousal Unit). Although I had been seeing my PT for several years, this was Spousal Unit’s first time receiving treatment from her.

While we were there getting treatment, my PT mentioned that she had a new device that was supposed to help reduce inflammation, and offered to let Spousal Unit and me try it, if we were interested.

So after we had completed our other treatments, we each took a turn trying full body red light therapy, which consisted of going into a private room, taking off all of our clothes except our underpants and our socks (because cold floor), and standing between two red light panels for 10 minutes.

The two panels were parallel to each other and set about two foot apart.  One panel was taller than the other.  The larger one was about the size of a narrow full-length mirror, and the other panel was the same width, but about a foot shorter.  I stood between them for ten minutes, switching to face the other panel halfway through (at the five minute mark).

Due to my chronic migraines and attendant light sensitivity, my PT suggested I wear my dark sunglasses during the light therapy. I began by facing the shorter panel. The light was bright even through my sunglasses that block 97% of light, but it was tolerable.

Initially, I felt discomfort in my digestive system as the light therapy began. It intensified to the point that I wondered if I could endure the full session, but then the discomfort dissipated. I also felt pain in my left elbow, which also intensified and then dissipated. After that, I didn’t have any more pain or discomfort.

I *did* feel warmth to the point that I nearly began to sweat, even though red light therapy is not intended to be particularly heating, as compared to an infra-red sauna, which is intended to be very warm.

After five minutes, I turned around so that I was facing the taller panel. The light on my eyes was more intense, since the top of the panel was directly at eye level, but it was tolerable with my very dark sunglasses on and my eyes closed.

After I completed my full body red light therapy session, I put my clothes back on and went back to the waiting area while Spousal Unit had a turn.

I experienced the following effects after full body red light therapy: I noticed that my lower back was less stiff when I was getting re-dressed than it had been prior to the red light therapy. I felt temporarily nauseated for less than five minutes while I was waiting in the waiting area afterward, but then it passed. I was also very thirsty, but I am typically thirsty after PT, so it’s hard to say whether my thirst was intensified by the red light therapy or not. So most of my symptoms were minor and (very) short term. However, I did feel muscle weakness for about two hours afterward.  Spousal Unit reported feeling warm, but no other effects.

My PT did not charge anything additional for us to try this new therapy, although I did notice that her rates had increased by $5 since my previous visit approximately 6 months ago.

After I got back to our camper, I did some research into full body red light therapy, and so far, it is considered experimental and likely safe.  Like many other health products, it claims to treat many different ailments.  Based on my research, the strongest scientifically-supported claims seem to be for reducing inflammation and stiffness.  Since I have chronic inflammation, it is possible that I might find some relief from using red light full body therapy.  If you are considering using this therapy, please do your own diligence in investigating the strength of the claims for your particular condition.  Given that red light therapy is still experimental, also consider whether the cost is worth it to you – there may be other, proven, therapies that might benefit you more.

If you decide to try it, consider taking a pair of sunglasses, and consider that your hair will need to be up out of the way so that the light can reach as much of your skin as possible.  My PT said that many patients read their phones while receiving red light therapy, but I didn’t since I wanted to expose as much of my skin as possible and because my very dark sunglasses are not prescription, so I wouldn’t have been able to read my phone anyway.

My PT had a Joovv brand red light therapy device, but there are other manufacturers of red light therapy devices, both for commercial and at-home applications.

CAUTION: IT IS POSSIBLE TO BURN YOURSELF OR CAUSE DAMAGE TO YOUR EYES with at-home red light therapy devices if you are not careful.  *Please follow all manufacturers’ instructions.*

For more detailed information about red light therapy, see this c|net article or this medical journal article or this extensive article from Healthy But Smart.

NOTE: Red light therapy is also known as photobiomodulation (PBM), low-level laser therapy (LLLT), cold laser therapy, and many other names.

NOTE: Because red light therapy is considered experimental, it is not FDA approved for most conditions, and it is not covered by healthcare  insurance, meaning they will not pay for it.

NOTE: Prior to red light therapy, I had also received manual manipulations, damp heat, and interferential electric nerve stimulation (e-stim) therapy during this visit.

BOTTOMLINE: If you have rheumatoid arthritis or other joint pain or inflammatory conditions, red light therapy may provide modest short-term relief of pain and inflammation.  Red light therapy currently appears to be considered likely safe when used correctly.

The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.

I haven’t posted much lately, so here’s a quick update. I’ve been trialing Xolair, a medication that my allergist hoped would improve my quality of life. It did not have the specific effects that my allergist had hoped for, so she recommended I discontinue it. [*For my experience with Xolair, see the end of this post]

At the same time, and against my better judgement, my allergist wanted me to discontinue another medication. I try very hard to only change one variable at a time, so that I can try to isolate its effects and have a better idea of what is causing what. Which I reminded the allergist.

But sometimes it’s hard to effectively advocate for myself, because the trip to the VA hospital is so stressful on my body (3+ hour car ride each way, making sure I have access to bathrooms during the trip, my joints seize up during the ride making it hard to walk, flourescent lights in the hospital, hand sanitizer everywhere [I’m allergic], fragrances everywhere [ditto], stress from dealing with healthcare providers, stress from trying to avoid contact with the antiseptic I’m allergic to, trying to maintain my medication schedule and my eating schedule, etc.). When I have an allergic reaction, it affects my cognitive abilities. Imagine trying to have an intelligent discussion with your doctor during the worst fuzzy-headedness you’ve ever experienced during a cold… I just can’t think straight, and therefore I can’t process what the doctor is telling me and effectively evaluate their plan of action.

In this case, I *should have said* – “Let’s not change anything else while I’m coming off the Xolair. Let’s subtract that and evaluate the reaction for a few months.” But I was not successful in conveying how slowly we needed to proceed.

What happened instead was: I expressed some concerns, the doctor gave me one last Xolair injection, and told me to slowly start stepping down off my other medication (we agreed on one increment/week), and then not to return for my Xolair injection a month later.

So, against my better judgement (never mess with a stable patient), I started decreasing my medication. The first week I had a chronic migraine (for the entire week). So I returned to the full dose the following week. Once the migraine ended and I felt stable again, I reduced my dose by one increment the third week. I’m less clear on what happened after that, because I was slipping into brain fog and lethargy. At some point, I realized two weeks had gone by, because I was refilling my pill caddy again. The next two weeks went by even quicker. The entire month of September came and went, with nothing to show for it on my part.

Cognitive side effects from medications, illnesses, or injuries are insidious because they affect your ability to detect them and your ability to get help.

Crew Dog, onesickvet.com

Initially, I had thought my body was recovering from the trip to the VA, then from the migraine, then from the refinance efforts. But eventually (through the brain fog) I realized that it was probably a result of changing my meds. An additional month went by during which I was not only reducing one medication, but had also discontinued the Xolair, and I had limited cognitive ability and no energy. Like, stand up, accomplish one very small task, and need to sit down/lie down and rest.

Once I figured out what was underlying my symptoms, I contacted my allergist, who agreed to put me back on Xolair while I continue to step-down off the other medication. We’ll see how that goes.

MEANWHILE, in the media, *another* medication I’m on, Zantac (generic name, ranitidine), started getting a lot of attention. At first, it was reported that a few batches of generic Zantac had been found to be contaminated with a substance that is a known cancer-causing substance [NDMA; also see here]. After research into the situation, including reading this FDA statement, I decided to monitor developments but continue to take my prescribed ranitidine. Then Novartis/Sandoz announced that it would do a voluntary recall of its product. Then additional manufacturers announced voluntary recalls [see here for Apotex] and major pharmacies such as Walgreens, Walmart, and Rite Aid announced they would be removing ranitidine from their shelves. I contacted my allergist to determine the manufacturer of my ranitidine, but was unable to get an answer to that specific question. My allergist did, however, talk to the pharmacist at our VA hospital about the situation, and relay information from the pharmacist to me, which I appreciated. Although there has not been an FDA recall of ranitidine, we decided that I would switch to famotidine out of an abundance of caution (and because I have no way of determining the actual manufacturer of the ranitidine I receive from the VA). I am currently waiting for that prescription to be filled.

So, to recap: I tried a new drug. Its effects were subtle but beneficial. Since I had to drive 6-7 hours roundtrip every month to receive the injections, and the doctor did not perceive a dramatic enough improvement, we decided to discontinue the new medication. Overlapping with this change, we also changed another drug. My quality of life took a drastic hit. Now I’m trying to stabilize, but I need to change *a third* medication. Meanwhile, my quality of life has tanked and I’ve spent seven weeks in bed or on the couch.

I’ve lost two months of my life because my new allergist wanted to change my medications and see what happened. I’m tired of being a living medical experiment, although I guess it’s better than being a dead one.

Crew Dog, onesickvet.com

*My impressions of Xolair: It helped me breathe better and gave me (a lot) more energy, but I seemed to be *more* reactive to foods and smells. We had hoped I would be *less* reactive to foods and smells.