This weeks round of Transcranial direct current stimulation (tDCS) treatments were the 9th and 10th treatments marking our halfway point, and they came with some gradual improvements in both pain and energy!
Fibromyalgia Pain
The overall fibromyalgia pain level has come down to a 6 out of 10. Which is an improvement that has grown moderately each week, by turning the pain down a few notches from the original pain levels.
Trigeminal Neuralgia
The most dramatic help has been to the Trigeminal pain as it is my worst type and has been improved by not getting worse as well as by not following its pattern of flaring as it usually does. Before treatments started my Trigeminal nerve pain, on an average day was an 8 out of 10. After tDCS treatments the Trigeminal nerve pain is the slowest to fade as I feel it the most still, after each treatment it remains sore and achey in my temples but minimal in comparison, like an annoying throbbing fly that won’t go away.
The most amazing thing that is happening due to this treatment, and also the thing I'm most hesitant to even say aloud, for fear it will cease to exist…Is that I haven’t had any major flares like that earth crushing, one I had the entire month of April since beginning these treatments. Those pains that were worse than childbirth have been on hold for the first time in two years. Also there have been no ER trips due to excruciating pain. No, up all night pacing around my house in blinding pain, and best of all an average day stayed at just a 6.
After tDCS treatments the Trigeminal nerve pain still can be felt as it burns from temple to ear, but minimal in comparison, like an annoying fly that won’t go away. As they’d come monthly with my menstrual cycles as well as randomly. And this is the first time that I have ended a cycle without a flare, or migraine since being diagnosed with trigeminal neuralgia. I feel a lot better with these treatments and that gets me excited! Yet, as a patient I'm scared to get my hopes up, because I have before. And so, I know that there are so many types of treatments that end up not working in the long run, and not enough cures to go around. I just want to stop living in fear. Trigeminal Neuralgia patients live in fear of the next big one, much like seismologist do. And I don't want that to be my life.
I am in awe of the way our brains respond to this treatment, and I’m desperately hoping that this isn’t just a remission, because I want it to be a cure. Being overly optimistic and slightly idealistic, I hope that tDCS is the cure for Trigeminal Neuralgia. While being a little more realistic, we may not know whether it's turned down the pain centre permanently, or put it into remission for a while. An obvious way to tell is when/if the pain comes back. If the pain were able to stay in remission at least for the duration of the kids childhood it would be a major blessing.That’s probably asking too much isn’t it. This treatment's benefits have given me hope for the future, that soon I won’t need to keep living in constant fear. Because when living with major pain disorders, I lived in fear: of being the mom that's unable to keep up with my kids due to pain or worse having them missing out on things because of it. I still fear a flare coming constantly. Not to mention that there used to be a pattern to my flare.
Energy
Second, I have noticed that after this weeks treatments, I have been getting bursts of my old energy back. The kind of energy that I haven’t felt, since the days of my youth. Which is super exciting in light of these past few years of pain and chronic fatigue. It’s been tough to study through a bachelors degree worth of exams while battling chronic fatigue. Because it means you have a non-restorative sleep cycles, where you wake up just as tired as if you still never slept. An example of this new found energy was last Wednesday when for the first time in a very long time I had folded two loads of laundry, made dinner, and had kids eating dinner before my husband got home. When we the Dr decides we need to lower my med’s I will fear losing this new energy the most. I am not the flash, but hey, I am barely moving at normal speeds now which seems like a drastic improvement. Which leads me to my love of coffee, that is not at all surprising, right? My love of coffee started at a young age, but it grew into a love as I’ve found so many uses for it. I see it as a multipurpose tool: Its basically an on the go heat pack that can be bought at a drive thru, that's also a fun treat I can drink when I'm done holding it on the body part that hurts. And, it’s also used as a wake up drug for those of us with chronic fatigue, multiple times a day. I bring a cup into the treatment, and ponder what the future may hold with these new burst of energy, as I hope it will soon look brighter. Often when I see activities I’ve missed out on I say to my husband, that if I had the energy and no pain disorder to stop me, I would have loved to…fill in the blank.. go on backpacking adventures with him, or be a regular at a rock climbing gym, go traveling, go on missions trips, go hiking on the trans canada trail etc. All the things I have never had the energy for since I've known him, but would have loved to do. Chronic fatigue and chronic pain can really alter the way you thought your youth would look like, they take a myriad of things that after a while you forget you wanted. How different would I be if I had nothing stopping me? I watch people around me, similar in age, able bodied stopped by things the are mere problems in their heads if they were to figure them out they’d be unstoppable. How I want the same chance, to be able to just try. To simply push my hardest to see how far I can go without these diseased limits? I know I have the will power, the determination, and the perseverance to keep trying until I succeed at my goals because unlike my peers each day of mine was and is fought. There were so many dreams and goals stopped by a lack of ability not ambitions and it’s infuriating. When your mind still wants what your body can’t do. But, the future looks bright, for the first time in what feels like forever, my body may slowly correct.
Pain Medications the next step to the Treatment Action Plan
Overall my pain levels have come down to a 6 out of 10 which is amazing and I’m only halfway through the 20 sessions. Now after going to my 9th and 10th treatments, this week we have decided to start the journey of lowering my pain medications along side continuing the tDCS treatments to the full 20 sessions. That's a truly scary idea in my mind given the side effects of coming off of medications can be brutal. Yet, also necessary in order to see just how much this treatment is helping my pain. As well as needed to get me to the best lowest effective dosages possible. Which I’m hoping is no medications, I realize that is slightly delusional, given the amount of complex pain disorders I have and that they will degenerate over time. So let’s be more realistic and aim for very few. Likely by the end of these treatments I will be able to see the lowest effective doses I can live life on as well as the lowest pain level the treatments will bring me to.
If you have any questions about these treatments or what you've read please contact me
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