Wow. One month recap date is here! To be honest, I am not sure that I had any idea where I would be at the 30-day mark. It has been a rollercoaster of emotions as well as an unrecognizable pattern of head pain and adverse symptoms of TMS. Like with any recovery, I have had good days and bad days. I am most proud of having taken each day as it came, constantly learning and researching about the downsides of TMS, while digging deep and finding my self-advocacy voice. l don't want to fool you, I have not always handled each moment with the absolute greatest level of grace, but I try.
Of course, I would not be where I am today without my husband, family support, and our two crazy dogs.
My husband has played the husband papa bear with doctors, has carried my emotional ruck on days that I couldn't move, and has bent over backwards to accommodate changes in my mood and pain. Our friends and family have supported via phone calls and texts, getting me out of my head and focusing on something brighter and more fun. And our two sweet fur babies of love and energy have gotten me up and moving each morning before the afternoon pain sets in, and they have reminded me to enjoy the little things in life, and they have ALWAYS brought a smile to my face. So, I just have to give all these people and pups a HUGE shout-out and thank you from the bottom of my heart.
“The best relationships in our lives are the best not because they have been the happiest ones, they are that way because they have stayed strong through the most tormentful of storms.” ― Pandora Poikilos
I am not sure that I could describe this past month in a cyclical nature as I certainly had a fair share of ebbs and flows from severe debilitating pain and extreme exhaustion to almost feeling like myself with only a minor annoyance of a headache. Unfortunately, each day has been a bit of a surprise and I am still trying to figure out what makes one day more intolerable over another. I am thankful for each day and learn to find joy through a less-than ideal situation.
To begin, here's a list of a few high-level topics about how I am healing from the adverse effects of TMS. For more details, keep reading down below.
Symptoms:
Headache - Left hemisphere pain eerily similar to TMS session pain. Feel severe stabbing at the dorsolateral cortex. Phantom treatment pain - the first few weeks post-TMS.
Disassociation - Worse immediately after each TMS session.
Numbness Feeling - After TMS, I went home and held my face and stared at the wall. I felt numb to my surroundings.
Cognitive Difficulties - Feels like Scrabble letters are scattered in my brain and I can't form the right word or even make coherent sentences. Thinking leads to intense pain.
Sensitivity to Light - On occasion.
Irritability to Sound - For example, my husband and I were watching an action movie and the sensation of the surround sound's subwoofer felt like I was receiving TMS all over again.
Exhaustion - I have been sleeping A LOT more than normal, even napping 3-4 hours at a time.
Body Aches - After the third day of treatment, I felt flu-like symptoms and this usually reoccurs once or twice a week and lasts one to two days at a time.
Very Emotional
Minor Loss of Balance and Coordination - This worsens as my headache spikes in pain.
Neck and Mid-back Pain
Tests:
CT Scan - Inconclusive .
4-view X-ray - Showed that my cervical is straightening due to neck and back muscle tension from the headaches.
MRI - Referral from PA; waiting on call to schedule (update TBD).
Out-of-Pocket Neurology - scheduled appointment for first available August 31 (out-of-pocket provider) (update TBD)
Neurology - Referred by psychiatrist scheduled appointment for first available October 23rd (update TBD)
Vestibular PT - Waiting on referral from PA before booking
Peripheral Exam - With eyes closed, I was instructed to outstretch my arms (in front of me or to the side), and with my pointer finger, find my nose. I failed miserably. I hit my chin, ear, forehead, edge of my eyeglasses, and basically everything on my face except my nose.
Treatments:
Acupuncture and UMAC craniosacral therapist
Yoga - slow and meditative focus
Healthy brain foods - walnuts, avocados, coconut, lots of water
4-Day Juice/Smoothie Cleanse
Ice and heat administered for head, neck and back - Migraine head wrap for the freezer or microwave
Over-the-counter Medication like ibuprofen, acetaminophen, etc
Homeopathic Borion Medication - arnica, Paris quadrifolia, Kali phosphoricum
Tea - mint, turmeric
Aromatherapy and Essential Oils
Tinctures - Valerian, Brain and Memory (gotu kola, ginko leaf, skullcap, sage and rosemary)
Vitamins
Digestive Health Focus - Pre/probiotics, lots of berries, digestive enzymes
Water and electrolytes
“You have the power to heal your life, and you need to know that. We think so often that we are helpless, but we're not. We always have the power of our minds…Claim and consciously use your power.” ― Louise L. Hay
Here is a look into my journal entries:
Mileage Log - June 26 - July 2
Runs: 35.3 miles
Walks: 24.2 miles
Naps: 6 hours
June 28th - June 30th - These dates were the three TMS sessions that I underwent. If you'd like to read about my adverse experience in more detail, please check out my first blog entry about TMS: My Experience with Transcranial Magnetic Stimulation (TMS)
July 1st - July 4th - During this period, I spent time trying to recover from the adverse effects of TMS while also preparing to run The Foot Traffic Flat Marathon on Sauvie Island by July 4th. I documented all of the details of these days in another blog post, which you can find here: Running a Marathon After Only 3 Transcranial Magnetic Stimulation (TMS) Sessions - How it Went . My husband's uncle was in a car wreck.
July 5th - Before visiting his uncle in the hospital, my hubby took me to walk the dogs as normal (about 4 miles). Once back at the house, I parked myself in bed and settled in for the day with my Healthy Line heating pad. I was so overcome with exhaustion that I fell asleep for three hours. I was scheduled for another TMS session that afternoon, but I forgot to call and cancel. My headache was severe and the only thing that reduced the pain for a period of time was sleeping.
July 6th - My husband took off work again to help his uncle and also to help me with some daily tasks. I did not feel comfortable driving as a result of feeling incredibly run down and fatigued. Together, we walked the dogs 3.5 miles at one of our favorite local spots. Honestly, I am surprised that I was able to handle a walk with the dogs each morning because I had muscle pain and fatigue, like the flu. Walking uphill felt like an arduous journey. This day (and several days after) it felt as though I had phantom treatment pain, like I was receiving treatment for hours while Thor's hammer continually smashed my head. It was a constant reminder that something went incredibly wrong during TMS. I skipped my scheduled TMS treatment again. Between my headache and fatigue, it was all I could do to walk the dogs. I forgot all other duties and tasks, even cleaning the house or preparing food.
I got a text from the psychiatrist's office asking to schedule a zoom call for the following Monday, I agreed.
It took two missed appointments for them to realize something was wrong.
July 7th - I woke up with even more fatigue, exhaustion and now, a sore throat. My body aches and overall sickness felt similar to the day after my last TMS session (where it felt like a mack truck had pummeled into me). Despite this, our sweet husky demanded to be walked. I took her to the field and we walked less than normal, but a decent 3.3 miles. And, if I am not yet already sounding like a broken record, I thought of all the things I needed to do at home - laundry, water the plants, clean the house, run on the treadmill - but instead, I fell asleep for hours until my husband arrived home from work. With all of this sleeping during the day, I felt aggravated and ashamed. By nature, I am not a napper, unless I wake up especially early or I am very sleep-deprived. I remember looking in the mirror and thinking that the reflection staring back did not resemble the "me" that I was used to - the one that would run for hours on end, have the house spotless and a three-course meal ready to devour, while still finding time to fit in a few hours of work each day.
I was especially sad this day because I had to notify family that I would not be able to make the cross-country flight to visit them (been planning it for 6+ months), because these symptoms had not disappeared (despite the TMS technicians' assurance that they would). If anything, they had intensified since my third and last TMS session. I couldn't get through the phone calls without help from my husband - I was upset, and the emotions inflamed my newfound inability to recall words.
July 8th - Our Saturday began like any other, my husband and I walked the dogs about 4 miles. During our walk, my headache began to soar and as much as I tried to hide the pain, my ability to form cohesive thoughts wained and my aggravation grew. Back at home, I resorted to my normal spot in bed. At this point, our mattress was beginning to hollow-out a perfect Jordan-sized divot on the right side of our bed. I turned on the TV and watched some Harry Potter...again. We watched the series before the marathon, but my husband kindly watched it again with me while holding my hand and trying to ease my pain with homemade tea, OTC meds, and neck massages. If only Madam Pomfrey could speed my healing!
July 9th -In the morning, my husband and I walked the dogs almost 5 miles. And while the pain, fatigue and headache were at what I call my "operating headache" (despite the pain level of 6 or 7, I can still do a few tasks and not make it worse) I began to grow a little more terrified that the headache had not gotten better. By the late afternoon, I asked my husband to take me to the hospital. It wasn't a question of whether or not I needed emergency care - I still had all my limbs, eyesight, and breath of life. But I had no answers, the psychiatrist was not meeting with us for another day, and ten days had gone by with no improvement. I was calling it. We needed help.
After the ER intake, I received an IV bagand a pain medication, tramadol. I became incredibly loopy, but my headache started to decrease in severity. At last, I finally had a glimpse of relief. The doctor ordered a CT scan, but the CT scan showed nothing. I am not sure "disappointed" is the right word. I certainly did not want any scary results, but I was sad that the pain I was experiencing wasn't visually captured on the image. We went home, I went to bed, the painkiller wore off, and within moments of lying down my head pain was back in full force.
Mileage Log - July 3 - July 9
Runs: 23 miles (majority was the Marathon attempt July 4th)
Walks: 22.1 miles
Naps: 20 hours
July 10th - In the morning I experienced the after effects of tramadol (my head felt heavy, but also floating) yet I pushed through and walked the dogs 5 miles. I felt a little less head pain as I bobbed up and down some of the hills, but the airhead feeling was new. I chalked it up to the drug. By midday the headache returned. It felt like a rope was wrapped around my skull and two strongmen were pulling as hard as their strength allowed. Then, I felt a nail-like sensation puncturing each side of my head as if trying to meet in the center of my skull. My husband and I had a follow-up appointment with the psychiatrist later in the afternoon, but they texted me saying there was a conflict with my existing appointment and asking if I could reschedule to earlier in the afternoon. I opted to reschedule the appointment entirely. I was exhausted, I didn't feel comfortable driving myself thanks to the TMS "treatment," and I would need to wait for my husband to join me. I was done for the day.
July 11th - At this point my headache started to feel like the "new normal," which I now describe as: I wake up and my headache is still there - sometimes at an intense 8 or 9, and sometimes at a 5 or 6. I have had to operate at either pain level. On this day, despite shooting to a 7, I walked the dogs 3.4 miles. When I got home I tested my energy and focus. I vacuumed, changed bed linens, did laundry, and cleaned the bathrooms and kitchen. As a result of pushing myself, I felt extremely irritable and my headache altered from the dull ache to a sharp, shooting pain on the left side, exactly where the TMS device was used - I have never had headaches at that spot until I received TMS.
In the afternoon, we met with the psychiatrist. The meeting started off extremely odd - she was jovial and asked how treatment was going and how my race went, etc. I was shut-down and removed from the conversation, so I gave one-word answers. At some pain, I asked, "Did you not know that I have stopped coming in for TMS sessions? Did your staff not tell you that I have been dealing with adverse reactions?" The doctor looked perplexed, so we filled in the gaps from the second day of my TMS session (June 29th) to our meeting (July 11th). Her demeanor shifted instantly and she was terribly apologetic. The psychiatrist mentioned that a close relative had been admitted to hospital, and that TMS technicians chose not to tell her about my severe pain. For almost TWO WEEKS, my husband and I were left grasping at straws as to what happened and all along her staff held the key. Quick flashback: during the second treatment, we were told by the experienced tech that psychiatrist would be in the following day to help, and we were told that ALL of my symptoms were normal and I should carry on with treatment. We thought ALL of this was coming from the doctor, but after this conversation, we knew this was not the case. My husband knew our frustrations from the last 13 days, and didn't mince his words when he told the psychiatrist just how upset we were with the lack of response, with the seeming incompetence of the staff, and with the breakdown in care. Immediately, the psychiatrist told us that she wanted to help and then passed us her cellphone number. The psychiatrist told us that she would support our efforts in finding answers as to why I have had these severe symptoms.
After the call ended, we both thought we were slowly assembling a team to help figure out the "why".
July 12th - I got up early to walk the dogs 3.3 miles and finally had an appointment with our primary care doctor. I told him all about the issues from the TMS. I told him that during the ER intake visit I was instructed to bring my finger to my nose with my eyes closed, but failed miserably. He tested me again, and I still whacked myself in the forehead, cheek, and ear. "Wow, you really do suck at that," he chuckled (like many veterans, he has a down-to-earth way of saying it like it is). He prescribed me low-strength steroids and told me to continue oral over-the-counter pain medications to see what one worked. He referred me to get an X-ray and wrote a referral to a headache specialist office. We scheduled a follow-up a week out to ensure that we were both staying on top of my symptoms and care.
I felt heard and hopeful for continuing to search for the "why".
Immediately after the PA appointment, my husband and I had a midday meeting with James Hall from TMS Side Effects Advocates. This call was extensive, and his own recovery has been a long, tough five years. I plan to write another blog post describing some of his take-aways, so please stay tuned for that.
Overall he mentioned:
Water Fast
Omega-3s
Candida Cure
Vestibular Rehab
SPECT scan - For him, this showed cellular damage on the left side.
July 13th - I was an absolute busy-bee and pushed myself harder than ever. I was sick of these symptoms limiting my life. I walked the dogs 3.5 miles. I spent time cleaning the house, or touching up what was left to clean from earlier in the week - we didn't want to be too embarrassed by the studio apartment we created downstairs after out oldest dog's injury. I then spent the rest of the day in the kitchen chopping up veggies, creating vegetable broth from the veggie scraps, making cashew nut milk, and forming vegan brownies and cheesecake. This was for some friends who planned to visit the following day (I was in desperate need of good friendship). I plan to post about the brownies and cheesecake soon! By the afternoon, the headache had me wobbling on my feet and slightly slurring words, but I was so hyped on the future friend visit that I was conveniently distracted.
July 14th - Now, this is the day that I was waiting for since the last day of my TMS treatment. I still had a headache, but it was even less than my "operational headache". It felt like a dull ache. It was more annoying than painful. When I turned/bobbed my head too quickly, I experienced a sharp pain like a nail being hit into my skull. But, my spirits were high. We walked the dogs 4.4 miles, and carved out some time in our home gym. I stepped foot on our treadmill for the first time since my marathon attempt. I ran/walked 4.7 miles. I ran 5 minutes and then walked for 5 minutes, alternating until I completed almost 5 miles (I was bored of walking, so only walked 2.5 minutes the last walking set).
After my workout, I spent some time in the kitchen and put all of my prep efforts from the following day into a meal. I made homemade potato soup and fresh baked artisan bread. Then, our friends arrived and we spent much of the evening eating and chatting. My friend is a certified athletic trainer, and is currently studying hard in PT school (she kindly recommended a training program to me while I am recovering). I noticed that the dull headache made it difficult to comprehend and pay attention to my friend while her husband and mine spoke only a few feet away and light music filled the rest of the room. And, by the end of the night, my head felt heavy and my pain level began to increase. It wasn't until I laid down that I noticed exhaustion take over my body - I am sure anyone would be, even without a TMS injury - but I could not turn my head. My neck muscles were so tight that it felt like my neck would snap if I turned one way or another.
July 15th - Surprisingly I woke up with only a slight headache and I again, had a good amount of energy. I was not sure if it was my run from the day prior or a friendship high, but it was a small win. My husband and I went to a different trail and walked our dogs around a windy path along the river for 3.2 miles. Based on the last two days, we decided to take it easy and not overextend my lessened pain. We hung out the rest of the day and while my husband caught up on small tasks around the house, I watched movies and took a nap. And yes, a true nap: only an hour or so compared to my 3-4 hour midday sleep.
July 16th - Our friends invited us to hike along a glacial lake, but the day before, one of them had twisted their ankle and turns out the trail is under construction. We walked our dogs along a nature preserve for 3.3 miles. I realized just how exhausted I was by the time we arrived home from our morning walk. We spent the entire day relaxing. I was craving fried rice loaded with veggies, so my husband picked up some, and we got back to movie-watching. Honestly, film-binging had become such a typical pastime by this point that we had bookmarked over 20 movies on a few different streaming platforms, so that we no longer had to "waste time" scrolling through movies and looking up their ratings. We had entered a new level of couch potato, but because I had my partner in crime, I didn't feel guilty!
Mileage Log - July 10 - July 16
Runs: 4.7 miles
Walks: 26.2 miles
Naps: 22 hours
July 17th - Before TMS, I would consistently walk our dogs multiple times a day, but after TMS I never felt up to it. This morning, however I walked our 13-year old pup, and then walked our crazy 2-year old husky for 5.4 miles. I was surprised and excited that my headache had and continued to reduce in pain level. I felt like I was operating at a pretty low level.
All until, I got home.
I wanted to do a treadmill workout, but my head felt so heavy, it pulled me to bed. I fell asleep for a couple of hours in the middle of the day, despite having a full night's sleep. I was incredibly down and angry about being so sedentary. I tried to push myself to just workout, but it felt like I had lead feet and could do nothing more than collapse back into that same Jordan-sized divot in bed. This was not me.
I felt guilty. I felt ashamed. I was upset.
“Shame is a soul eating emotion.” ― Carl Gustav Jung
July 18th - At this point, I was so fed-up with feeling overly exhausted after weeks of taking it easy that this week became a mental challenge. My thoughts called me "lazy", "boring", "dependapotamus (dependent + hippopotamus)", or "sack of worthless potatoes". Whatever my mind could conjure up and throw at me during hours of being awake, I thought it and felt it. My level of headache pain has risen slightly each day since our friend gathering, but has not risen to the level of pain I experienced immediately after each TMS session. I had slight body aches and my head felt like a 5/10, with the ocassional sharp, shooting pain on the left side at the most random times. It's certainly odd. Just when I think that I am fine and my head does not hurt, out of nowhere, I sometimes feel a jolt of electricity zap the left side of my head as if to say, "not fine unless I say so". I believe this lessened pain coupled with an overwhelming feeling of heaviness/demotivation led me to be consumed by never-ending negative thoughts. I was stuck in a cycle of mini-depression-like feelings and I felt trapped. I felt as though I was stuck in a dark room and couldn't find the door to escape, even as I tried to reach my hands and follow the walls of the room, there was no door. Despite these feelings, I managed to take the dogs on their usual morning walk for about 4 miles. I noticed that I was starting later and later on the Strava app, but I still was able to walk.
Now, was the time to start focusing on little wins and not get stuck in the dark, looming Nimbostratus clouds that I had created around me.
July 19th - As the storm cloud continued to hover over me, I woke up late and missed my follow-up PA appointment. I had to call and reschedule. There was no way that I would skip walking the dogs. When I got home, I had my mental health counselor meeting. I filled her in on everything that had happened since we last spoke, which was the day before my TMS mapping treatment (June 28th). She followed along as I shared my experiences as best I could while still keeping enough time to talk about the present. She asked about next steps and asked how I was currently feeling. This week, unlike others, I was stuck in a dark cycle of thoughts and lack of energy. She noted that this was worse than before I sought psychiatric help (and, by association, TMS). Of course, this was both validating to hear since I had not recognized myself for awhile, but it was also incredibly sad to realize because I was so angry at myself for not finding the adverse TMS articles until a week after my last session.
I told myself to hop on the treadmill after the call and just try to move through this negative mindset, but I was so exhausted from talking for one hour that I shuffled over to the bed and fell asleep the rest of the day until my husband returned home from work. When I woke up my head pain level had soared. I couldn't move my head. My neck felt like it was on fire and my muscles were steel cables tugging at my vertebrae. If I made a wrong move, I'd be “The Girl with the Green Ribbon”.
July 20th - When I woke up, I preformed a few neck stretches and tried to work though the severe tension that was ailing me. I focused on long slow breaths as I moved through the motions and envisioned the day. I saw myself strip the linens on the bed, wash a few loads of laundry, clean the house, walk the dogs, and run on the treadmill. After centering myself, I stripped the bed, ran the linens upstairs, and loaded the washer. I grabbed dog treats, the dogs' water bottle, and loaded the pups in the car. I couldn't find my phone. I went back inside and tried to retrace my steps, but my head felt white and empty, like a snow storm covering everything in sight. I searched high and low. I went back out to the car, and still no phone. I went back in the house and this time, I checked the laundry machine. I pulled out the linens and out fell my phone about to be washed and useless.
Throughout the past couple of weeks, I had moments when I felt like I could not remember what I had just done. In fact, just the act of trying to remember would hurt my brain. It felt as though I had completed a long-distance race and was absolutely spent. I have joked about feeling "white and empty" when I can't remember things, but having an intense amount of pain just trying to access that part of the brain has NEVER happened. And since TMS, this was a new normal - a constant internal blizzard covering all my memories to make that inaccessible.
I walked the dogs for 4.7 miles. Later in the day, I hopped on the treadmill. I planned to follow my friends PT plan, but instead, I just ran...and ran...and ran. I started slow - 9:40/miles and then gradually increased my pace and incline until I finished the run at a 7:53/mile with a 5% incline. I climbed 3,306 feet and ran 13 miles in two hours. My anger pushed me through this run. My head and body were not ready, but every mile I told myself one negative thought gone, so I kept going.
After I stepped off the treadmill I ignored my body aches and head, and started my to-do list that I created in the morning. Then, in the afternoon I met with our primary care PA to discuss a continued plan. He reviewed the X-ray and noticed that my cervical spine was straighter due to tightening muscles from the neck down to the mid-back. I believe some of this tightening is due to the TMS. At this point he was willing to try a few different options like an antihistamine, but felt it best to refer my care elsewhere. He referred an MRI and a neurology consult.
July 21st - My husband and I woke up early and exercised our dogs a bunch before we were stuck in the car for several hours (we only walked 2.4 miles and our youngest, 2-year old husky was very vocal about the lack of miles). Today was the day that I would meet with an Upledger trained craniosacral specialist to hopefully help reduce the brain pain and begin to heal.
After 3 hours in the car, we met with the dual-certified Acupuncturist and UMAC (craniosacral specialist). He conducted intake and performed some work on me. I had a pretty severe case of the DOMS from my run the day prior and I'm sure it was noticeable in my hobbling gate. I think due to hopeful excitement, my headache pain level reduced some and I hardly noticed it was there. He performed some acupuncture on my right knee to help with the left side. He instantly noticed that my cranium was twisted - the left hemisphere was more forward - as well as heat pouring from the left side of my head. He indicated that he could tell it was inflamed and trying to heal. He also noticed birth trauma (preemie and emergency C-section) while working on my cranium. It was a fantastic session.
His protocol until to next treatment date was:
pre/probiotics, digestive enzymes
lots of water
increase good cholesterol and fats
temporal motion to help drain inflammation
I could run so long as my body recovered within 6-12 hours (no DOMS)
treatments every 2 weeks until we can move to monthly
On the drive home my headache worsened, but it was a detox headache from the session. I had a few bouts of incredibly sharp pains on the left side that would cause me to wince, but compared to all of the days prior, it was no where near as severe. I felt like I was getting better. It was good to have another great member added to my care team.
July 22nd - After being in the car for 7+ hours the day prior (thanks Seattle traffic!), we kept it easy and went to a local spot along the river and walked 2.5 miles. This was the start of our 3-4 day smoothie detox. We opted for smoothies because we were not restricting calories, only pumping our bodies full of good nutrients and detoxing fruits and veggies. I bought the 7-Day Smart Pressed Smoothie Cleanse and planned to split the packets - I would do 4 days and he would do 3 days. The smoothie cleanse started off great. The smoothies were delicious and something we looked forward to every few hours. While we did not have lack of calories, we both craved something to chew. The last chia juice helped with the cravings.
July 23rd - First off, my husband and I are not breakfast eaters and we do not like protein powder, so I will say that we both did not enjoy having to down a smoothie at 8:00 in the morning. We walked the dogs 4.2 miles along the river. Later, we both laid down as we could feel the effects of the detox. My headache pain level was still high, but it was mainly a detox headache situation in the front of the head. I preferred the detox headache over the stabbing pain on my left side. It was a welcome break (if you can call it that). I also felt as though the detox headache was helping pull inflammation from my head and working through any trauma that was experienced from the three TMS sessions.
Mileage Log - July 17 - July 23
Runs: 18 miles
Walks: 30.2 miles
Naps: 19 hours
July 24th - This day marked day 3 of our juice/smoothie detox. It was my husband's last day of the cleanse, so I blended all of his juice packets to last him through the day while at work. I decided to give the juice a try and not blend into smoothies. I was VERY reliant on nuts and seeds as snacks between the juices, but I was just tired of the smoothies after trying to down the thick protein smoothie twice a day.
I walked the dogs 4.2 miles and I decided to try another long run (the last one I did resulted in a serious case of the DOMS but a reduced headache pain level). I ran 8 miles. It was A LOT harder to keep going. I planned for 9 miles, but by 6, I knew I did not have much in the tank from the cleanse. My body was already focused on a lot - between the juice detox and healing - my runner brain did not need to be the focus.
By the evening my long run had not done the trick that I thought it would - my headache was climbing in intensity. I could not stand lights, noises, or even movements near or around me. I felt like a cannon about to burst at everything around me for just existing. Even as I write this, I am still trying to figure out the patterns between a ranging headache to a less severe, more mild headache. My husband had been experiencing a detox headache for most of the day, but was willing to continue to stick it out to complete day 3 of the cleanse. But after some time holding my head and wincing, my husband gently asked if food would help. At this point, I was willing to give it a try since eating had been the one time where my headaches would sometimes go unnoticed. We went into the cleanse with the thought of curing the headaches, not losing weight or trying to change our eating habits, so we both decided that we would end the cleanse. Luckily (the universe may have known), I had made a spinach and kale pesto sauce over lentil penne pasta as meal prep for the week. My husband heated up a tiny portion for us both. My headache lessened from a 9 to an 8, and I was satisfied. It was a step in the right direction.
July 25th - This was supposed to mark day 4 of our juice/smoothie detox, but since we had ended the true cleanse the night before I decided I would just enjoy the powered packers with nut milk throughout the day with food as a transition to full food. I enjoyed the juices much more as juice than smoothies, but I skipped the protein powder packets since that was my least favorite. I walked the dogs 5.2 miles. When I got home, I did not have a lot of energy but I tried to run/walk on the treadmill and incorporate the rehab plan my friend created. I ran and struggled with 4.7 miles. My body was in pain and my head was not happy with the constant bobbing, though it was much more mild compared to an outdoor run, it was not a running day. My husband came home from work and I was in so much pain, he could see the agony on my face. I broke down in tears so frustrated that my past runs had done nothing to reduce the pain and all of my previous efforts to heal had done nothing.
I felt as though I had reverted back to the days immediately after TMS. I had fatigue, exhaustion, severe headache, difficulty thinking, speech impairment, sensitivity to sounds, and extreme agitation and emotion. I was disheartened and frightened for being so overly naive about feeling better just a few short days ago.
To help reduce the pain, my husband tried placing packets of frozen edamame on the left side of my head. At this point, all I could think about was revenge. I wanted to hold anyone and everyone associated with TMS and the practice where I received TMS accountable. I had more wrath than a fire breathing dragon. While I lay in bed next to my husband curled up, I reached out to the psychiatrist to update her on the progress and increased pain. At one point, the psychiatrist asserted "at this point it's been too long for you to have these symptoms so the less likely this is a side effect from TMS and I would want to rule out organic cause for this." My husband and I didn't understand. How could TMS possibly be ruled out, given that much of my existing pain was in the EXACT spot that the device had been used, given that I'd never before had pain in that spot, and given that all of these headaches began immediately upon receiving TMS?! She told us that she was in Florida tending to her sick father again.
I was enraged and sad. I felt alone.
July 26th - After walking the dogs 3.6 miles in the morning, I met with my mental health counselor to update her on my post-TMS symptoms as well as the progress I made since our last meeting on finding answers. Luckily depression and anxiety had not increased or rather non-existent from the not having any further answers about the "why". We chatted about how these TMS treatments had zapped (ha, get it? zapped like electricity? See, even I can still joke) me back to an even worse place compared to where I was walking into the psychiatrist. I noted that it's not depression but more of an overall sadness that I am missing out on things that I love because I am exhausted, experiencing daily headaches of various degrees, and that even my running has not helped reduce the pain. She talked to me about my goals to help mitigate these feelings of sadness and what I can do to feel accomplished.
To make each day seem less focused about the head pain and more about enjoyment, I thought I should:
Enjoy the daily walks with the dogs as more of an achievement - they are just as much for me as the dogs and not viewing them solely for the dogs' benefit.
Take each day as they come and try to find one or maybe even two things that are a positive, and if I can make those different than the day before that is a win (walk with the dogs, yoga session, writing my blog, walk/run rehab session on the treadmill, laughing with my husband, etc)
Be less focused on the pain scale and more focused on what lessens the pain for that particular day (heat/ice therapy, yoga, arnica, tinctures, tea, playing with the dogs, etc)
Not be so hard on past Jordan for not knowing that this would happen. Past Jordan trusted the psychiatrist whole-heartedly to try TMS, and even did some research beforehand.
I also made it my mission to gather all of the paperwork from the office where I received TMS, so that I could pass it on to all of the doctors that I planned to see in the upcoming weeks. With the help of my husband, we were able to gather all of the printed information in one day. This may seem like a normal feat, but let me tell you the number of hurdles, amount of phone calls, and amount of adrenaline pumping through our veins does not even begin to cover the mountains we had to climb to obtain my medical records from the TMS office.
July 27th - With my pain level still severe, I walked 4.2 miles with the dogs through a nature preserve and forest. When I got home, I pushed myself to finish a load of laundry and clean the house. My head continued to pound and I was irritable. My husband called to check in on me, and the second I stopped to answer the phone, my head pain level was so high that I couldn't focus on his questions and the noise through the phone only elevated the pain. I was so upset with myself for losing my patience with my husband and upset from the pain level that I hopped on the treadmill and ran 7 miles. My body ached and my head pounded, but I kept moving as a punishment. While dinner baked, I worked out some of the fatigue with yoga.
July 28th - This marks one month since my mapping and first TMS session. I left the house in the morning hoping that I noticed a difference between where I was after the first TMS treatment and a month later, but honestly that thought led to feeling incredibly sad that I even underwent one day of treatment. I tried to brush off those thoughts.
My husband had the day off, so we walked the dogs 4.75 miles. Later in the day, I walk-ran 7 miles, and my husband rearranged our workspace to put our desks side-by-side along our large bay window. I pushed through the day and we put in some work for the rest of the afternoon - me on my blog and him on organizing documents for work. It was a nice glimpse into what could be, if we both worked from home.
July 29th - We walked the dogs 4.75 miles at an off-leash park. It was so fun to see our dog play with other pups, while our senior dog enjoyed good smells, interesting sounds, and the warm sunshine - the finer things in life. Yet again, I fell asleep after lunch for 3-4 hours. I woke up with an even more severe headache than when I fell asleep. We later spent a few hours working at our desks while our dogs napped at our feet. My headache increased the more I tried to concentrate. My husband and I tried a migraine head wrap that we had in the freezer. It felt like my brain was cramping and the cold hurt, but I breathed through the pain and wait for that dull ache that icing injuries sometimes achieves. Afterwards, we went upstairs to practice yoga. I would love to say this was an absolute success, but our dogs turned our upstairs into a wrestling ring. It was fun to watch. I gave up on having a calm and serene yoga environment and covered my face anytime the dogs sprinted by to wrestle in the next room.
July 30th - We walked our dogs 3.4 miles along the river. After our walk, we prepared raspberry pancakes but they were burnt. My headache was beginning to build in confidence, so I grew more and more frustrated as the house smelled of burning pancakes. We spent the middle of the afternoon Zooming family and chatting. It was nice to see their faces and we both realized just how much we miss them. Living so far from family is not always easy. It's even more difficult when you are recovering from an injury and unable to travel. To rectify the pancake fail, I poured the batter into a brownie pan and baked them. Luckily they turned out delicious - not as light and airy as I would have liked but we did not have baking soda, so it was a win all things considering.
Mileage Log - July 24 - July 30
Runs: 23 miles
Walks: 29.4 miles
Naps: 12 hours
July 31st - My headache was the worst it had been since the beginning of the week. I had a bit of a reprieve, but about mid-week I felt as though my pain level began to come back. By Sunday night, it felt as though a 20-pound kettlebell was squishing my brain. It was difficult to fall asleep. I tried adding valerian to my tea and took a few ibuprofen. By the morning, I did not have time to think about my headache. I rushed the dogs to the nature preserve to get out some energy and then drove to their annual doctor's appointment. And once home, I ignored my head pain and put in some walking and running miles on the treadmill. I ran out of steam halfway though but kept going based on a little voice inside my head that said, "running long-distance may be what's causing your headaches." This was something that was said earlier by a concerned family member and despite all the positive of the conversation, this is what my mind decided to focus on. So, I ran and walked as far as I could and for as long as I could until my body doubled over. I knew I would pay later in the week for pushing my brain and body, but I was so tired of not feeling like myself and not feeling head pain that I let anger rule rational thought. I'm human.
In all honesty, I think it's important to share the more "human" moments of the healing process, and know that not all paths towards recovery are a steady, even climb - there are hills, rocks, mountains that dip into a ravine before climbing back up again.
As you can see from my weekly milage log, my running has increased and my naps have decreased over the month, so seeing the change in my activity levels alone is a positive. Not to knock this positive direction, but it should be noted that I have pushed through the fatigue for fear of muscle atrophy and not pulling my weight at home (even to my own detriment as my ability to recover has significantly decreased). Overall, I still have had severe headache pains, irritability, sensitivity to sounds, and extreme fatigue just like day one post-TMS sessions and those days are incredibly discouraging. But, I plan to continue to make doctor appointments, find holistic healing methods, and work every other angle I can to improve my adverse symptoms from TMS.
If you are interested in continuing to follow along on my journey to heal from TMS, please keep an eye out on my blog as I plan to post more updates as I can. Thank you for following along thus far.
All my light. All my love. Namaste.
Jordan
My Gear:
Please Note: I am in no way bashing candidates that had successful TMS results. Rather, I am spreading awareness about possible adverse effects to counter the overwhelmingly positive internet search results. TMS did not work for me. In fact, I had serious consequences after only three sessions, and I believe these need to be discussed, studied, and readily available to those considering it as a treatment option.
If you are unfamiliar with TMS, please read: TMS is a procedure in which a technician uses a device, containing a magnetic coil, to send electromagnetic pulses into a specific area of the brain. The idea behind this is that electromagnetic stimulation of brain cells will encourage neural rewiring. After an initial brain "mapping" session, the typical time commitment for treatment is about 56 sessions over 6 to 9 weeks. During each session, 3,000 electromagnetic pulses will be sent through the brain in under 20 minutes. These pulses are broken up into pulse pattern groupings with several seconds of rest between pulse groups. These electromagnetic pulses have a frequency of 1 Hz (1 pulse per second) or high-frequency pulses at 5 Hz to 10 Hz (5 pulses per second to 10 pulses per second) depending on the settings. The strength of these pulses also vary from 1.5T to 2T (T = Tesla).
During my treatment, the staff placed the device on my left prefrontal cortex about 5 cm superior to my motor cortex (the area of my motor cortex which controls finger movements).
If you are curious about what I am calling a "TMS-utopia", please refer to this article from BMC Medical Ethics which discusses the difference between how academic and print media portrays TMS.
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