Always Ask Your Dr. Questions
I am one of those people who in my mind, am an organized person. Who intends to ask the Dr a dozen questions, about what exactly each thing does but, in reality things look of so different. Once Myself, a toddler, a 1 year old and a kind driver we convinced to take us have made the hour and a half trek into Vancouver and I have contorted my body several times over my treatments begin. Contorted how you say? Doing what I call 'car gymnastics' a new cross fit work out, where you go from the front seat to the back seat, in desperate attempts to reach lost soothers, a dozen dropped items for toddlers and then also whip up formula bottles to prop up in carseats. You get the picture: I’m exhausted and in pain and trying not to show it, all while holding a conversation with the kind driver who has offered/been convinced to take me to my treatment and watch my kids while I’m in a 20 minute treatment.
When I've arrive at the clinic and am finally in the treatment chair, and the Dr asks if I have any questions? This is the point, when I’m so entrenched in the pain it took me to get there, that I've long forgotten all the tools I put in place to remember my questions, my handy iPhone notes: list of symptoms, or questions. So instead, I stare at him blankly like I’m 20 years older than I am, squinting as if it will help and attempt to ask what I can recall through the brain fog. As soon as the Dr. leaves I race to type as fast as humanly possible. I know that on treatment days I will have the short term memory of Dory the fish from Finding Nemo, and so I need to write down notes as fast as I can. So I don’t forget, all those exact words, and then I’ll go home and research them. It’s always good to do some due diligence, and know as much information as possible about your conditions and treatment options to know what your future outcomes might look like, and what medical advancements could be coming. In college, I took a brain and behaviour course and I was fascinated by it. And so, I have a very basic understanding of how the brain works, which has helped when researching Transcranial direct current stimulation research (tDCS). When I first, began researching the tDCS studies I was really confused by how it all worked other than that this helmet goes on, a current reaches into my brain and somehow it turns the pain signals down, but all this sounded really complicated. If it wasn't for a deep fascination with new brain research and the neuropsychology field, I'd be lost.
Transcranial Direct Current Stimulation (tDCS) Brings Hope for a Non-Surgical Option for Trigeminal Patients
By now a lot of you are probably wondering how this works, electrifying your brain. There is a lot big claims with tDCS and I have not yet investigated them all. But, there is also a lot of very promising research that brings such bright hope to some very dark, and painful conditions like trigeminal neuralgia. When one of the only treatment options ends up being surgery after surgery. And while the aim is to stop the life-disturbing pain, there are cases where the nerve grows back and it can mean multiple surgeries for Trigeminal Neuralgia patients. This new tDCS option though can offer the possibility of being able to do 10-20 sessions and hypothetically turn the pain centre in your brain down. That’s ground breaking! To not have to cut into a nerve or open up a brain and still be able to turn off the excruciating pain that we deal with weekly. Can you imagine!?!? I’m up with the slight burning through my nerve now and it gives me hope. Get excited fellow patients! The things neuroscientists can do with these treatments combined with the plasticity of the brain, is amazing! And, not even just to chronic conditions, mental health too, disabilities and so many other areas that interact with the brain.
Many Trigeminal Neuralgia Patients Have Very Few Options
Trigeminal Neuralgia for those of your that don’t know is a disorder nicknamed the “suicide disease”. It is often described as “sudden, severe, brief, stabbing pain occurring in attacks lasting at the most a few seconds to hours usually only on one side of the face and provoked by light touch”. And, is considered to be “the worst pain known to man”. The pain can also be described as stabbing, shooting, burning, excruciating, and unlike any other pain previously experienced. For us there are as few as five medications that treat this rare disorder specifically, and 10 that are off label treatments. Carbamazepine is currently the #1 medication to treat it but even though I was on a high dose that still did not manage the severe flares I was having 3-4x a week. So off to the ER I went with a nasty rash, the severe allergic reaction that was so bad, that it had done damage in suppressing my bone marrow. Thus, I was switched to an off label medication, Topamax that has suppressed most flares but really isn’t awesome at controlling the pain.. I still feel the burning just not the flares and stabbing shocks. When considering the future treatments of this disorder, surgery seems to be a looming option like a dark cloud that grows closer. After 5 surgeries already I’m just trying to avoid anything that get’s me back on the operating table, if you know what I’m saying.
The surgery options (there are a couple) also carries some steep consequences if they go south, a few notable mentions are: the nerve can grow back after the surgery, sometimes it leaves patients with a loss of hearing, loss of facial functions, and other issues. The worst being the pain remains or worsens to both sides. Looking over those options this is why I readily agreed to tDCS and even with the minor flare up after the fifth treatment my pain levels were coming down amazingly. After the tenth treatment my pain was down to 6/10. Check out the blog to see latest posts on how treatments are currently going.
Basic’s on tDCS
Originally tDCS was developed for uses in mental health conditions like bipolar disorder, stroke recovery, and brain injuries. But, now it is being used to a larger extent as it is targeting more areas of the brain, with amazing possibilities. When its applied to a patient the tDCS device delivers a low level electrical current targeted at a specific area of the brain; for me, we're targeting my parietal lobe. The parietal Lobe, is the area of the brain that reads the pain as information. Since I also have neuropathic pain and fibromyalgia it's a bargain deal, buy 1 get 2 free kinda thing, as it will hypothetically turn all of my pain sensations down. There are two electrodes connected to the helmet, a positively charged one and negatively charged one. Both are placed on your head just above specific area’s in order to make brain cells near them either more or less likely to fire.
The Wires
The first, called the Anode is usually the Red wire and is attached to an electrode at the front of my helmet in the frontal lobe area of the brain. Which is the part of the brain that is used for problem solving, emotions, daily tasks, language, expressions, etc. This Anode is the positively charged electrode, which makes the frontal lobe’s brain cells more likely to fire. Which can also help with symptoms like depression, brain fog, and others. The Anode electrode, is placed in a wet sponge above my Frontal lobe and the other end of the wire connects to the + positive area of the battery/device.
The second one, is what’s called the Cathode which is the Black wire and is attached to the side of my helmet above the parietal lobe. This electrode is a negatively charged one, meaning it makes brain cells in the pain centre less likely to fire. Thus, hypothetically over time turning down the pain signals, which is what these treatments are all about. The Cathode electrode, is placed in a wet sponge above my parietal lobe and the other end of the wire connects to the - negative area of the battery/device.
The Current
The electric current then has to cross the motor cortex and go from one electrode to the next, so the Cathode acts like a ground. But, by going in the parietal lobe pain to the frontal lobe it can improve brain fog. Simply put it goes inside the pain centre and out the frontal lobe. As the current ramps up, I can feel a slight to gradual burning tingling sensation, depending on how my pain is that day. Although with tDCS it is a non-invasive treatment, and the current is so low the highest safe setting being 4 milliamperes(mA) most people don’t notice it. For me, I started out at 1.2 and I have just reached the highest 2 mA setting that is the highest setting as per the tDCS studies suggested protocols 2m, for me it took 6 sessions but for others it may take a different duration depending on how you tolerate the treatment.
3 Reasons I had a Mini Flare
The flare was also not necessarily due to the treatment as there was more at play this week. You know how they say bad things happen in threes well they did:
1. Dog Died:
Her name was Zoey and she was a border collie shepherd cross that we rescued from the SPCA when she was a puppy. She was the runt of the litter and she still had worms. When I saw her she was shaking as she hid under the birthing bed in a dirty pen with her 7 brothers and sister who had just been rescued. She was under fed and skittish of everything, she also licked everyone. She was the best dog of 13 years, and died on Monday. Which was hard as I trained her and she was my trusted confidant and companion since I was 12 years old. Dog's show unconditional love in a special way, she was with me through so many hard highschool years, illness, and got to play with my children. So on monday night, we went up to my parents home and had a funeral and buried her.
2. Broken Glasses:
Then on the Tuesday after my treatment, I had a headache and my son was exhausted from the trip out to the city which causes him to continually miss his naps. So he was the toddler having a meltdown in the fancy west side grocery store in the big city, near my Dr's office. And, these rude people in line behind us were acting like they’ve never seen a child cry, before commentating “wow” and “oh my” which did not help. I was so embarrassed by all these strangers gawking, while simply trying to just buy some sandwiches and feed my toddler, calm him down, and juggle pushing the baby out of their way in the double stroller. The thing is, we weren’t even holding up the line, and dear people of Vancouver please note he is a child, he is still learning how to act appropriately. But you dear city folks, your fully functioning adults and I really expected you to act like compassionate adults, who if you don’t have anything nice to say don’t say anything at all. Seriously though, your mothers would be ashamed. Atleast these treatments are beside an awesome beach and waterpark close to the Dr’s office, it was the redeemable part of coming into the city that day. Each time were at the park, my boy gets covered in a mess of sand and water as he plays, coming away beaming and giggling. And we’re all so much better off, because we’ve had some time in the sun, and a little fun together. So after we played at the park, I loaded the kids into the car and in the chaos forgot my new glasses on the roof and watched as they got mercilessly crushed before my eyes...yes, they got ran over. So, for now I have become a senile blind person who can barely see what's coming at me now..So ya, know if you are coming towards me, and I don't notice until you are 10 feet away, you now know why. I digress, it's been a very rough week.
3. Mini Flare:
When I went into the treatment on Thursday and the new receptionist said my Dr was running 2 hrs late due to traffic and the intern would have to do it, I was very uncomfortable and scared. I knew this kid had watched him do it before on me, but he was in his 20’s and my pain specialist is the director of a complex chronic disease clinic. But, I had to come to terms with my reality, that I'm also a mom and I have a toddler and baby playing across at the park with my sister who I arranged to be there to drive me in for this appointment and I don’t have an extra two hours to wait, so I figured let's do this thing.
When I sat down I quizzed him on his training and was disappointed that he’s not even studying the brain…he just wants to be a GP not even specialize in pain, I was disappointed with his low ambitions. Then he turned on the machine and cranked it felt like he turned it up too fast, it felt like the electrodes sent zaps of lightning bolts into my skull, and it burned more than it ever has before. I squealed and told him that it hurt worse than ever before. He looked at me with a blank expression, like I was exaggerating, and said, “Oh, it should go away. You can just knock on the door if you need something.” and he left. I used my phone as a mirror to look at how it was placed on my head and could see a difference, the red wires in front the blacks in back, it's not centered….it's hurting…And I called him back and asked if he could switch the coloured cords. Then I had a migraine, and a mini trigeminal flare the whole day. After pushing through the rest of the drive home, evening, and putting the baby down in pain. I emailed with my Dr when he was back in the office and we arrange to use the ketamine mix cream and increase my topamax for the night. In the morning I was shocked when I woke up with a minor migraine, instead of the burning searing pain I went to bed with. The next day I was able to go for my routine park time with the kids and 5 km walk, which was great to get us all getting some fresh air and exercise.
To conclude after the sixth treatment my pain levels were coming down amazingly and this mini flare is probably just a hiccup. I say, were as past tense, and everyone with hope for tDCS sighs a sad sigh, but calm down folks. I had a minor flare but thats not bad for 6 treatments in, and wearing a head band touching the nerve for 20 minutes sending a direct electrical current at your brain. Its important to remember this is not how this story ends, I am still very hopeful. Bodies take time to adjust to treatments and then take time to respond. Its a large waiting game, which is why this treatment is a marathon, not a sprint. I am just so thankful to be able to try these treatments and interested to see science heading in that direction.
~ Elysia B
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