Just a short update from my TMS. When I wrapped up my TMS experience last year, it was good. I did feel better. Not 100% and I wouldn’t even say 90% but we were also buying a house and moving which for anyone is rather extreme on the emotions, stress, and anxiety. Shortly after the move I did fall apart. I burned myself out. So while I think that TMS did have some benefits, they are short lived for those like me. I have brain damage, much of my anxiety comes from my cognitive impairments and just who I am. And my insurance would not cover maintenance treatments, which may have helped me, but alas, I had to do without and have struggled since. It did not make things worse though. Which is huge really. Others experience with TMS may have longer lasting benefits, its going to be hit or miss, but I can say that on the days I had treatment and for a period after my anxiety was better, my headaches were better, and I felt overall more capable.
It’s been awhile. Sorry, been a bit busy what with 13-16 appointments per week and exhaustion, burnout, and well life. Had a couple medical issues from family members and they are tearing apart my apartment wI love those moments when I feel like loving life again.hich is driving absolutely crazy. Yes I used the word crazy and no I don’t feel guilty, I have a right to that word because I have been crazy and insane and it applies. It’s mine, back off!
Anyways, the TMS has been working for a few hours after each treatment. I have had a few setbacks due to missing days or because my medicines or hormones got screwed up. I found I cannot take Vistaril for anxiety. It creates this simmering pool of rage just below the skin that overwhelms me and terrifies me. Yeah, little known side effect. I’m also off today to get my new GP to increase my estradiol because if I don’t get my levels up then I’m not setting up the TMS and ME for the best chance of success.
I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.
I’m up to full strength on both sides. I definitely can tell it helps with my anxiety and I feel lighter after each treatment. Currently that feeling does go away in the evenings and I feel like this stifling fog has layered itself back over me. To be honest, I hate that. I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.
I want desperately to feel well, rested, and like I can live again. I was both elated and crushed when I got my response from my disability review… “Your disability is continuing.”
I cried both out of relief that I wasn’t going to be shoved off the deep end and possibly back into psychosis but at the same time so sad that this is me now. I am that person, with a truly invisible disability, constantly judged by society who has no inkling of what my life has been or continues to be. I miss work, I still dream of walking into one of those beautiful high rise buildings in downtown Bellevue and sitting behind a desk going over year end financial statements. I want to be that powerful individual who provides for their family and can whisk away to great vacations and buy the car of my dreams. I want to earn an income to allow my husband a chance at retirement.
Stress though can lead me straight back though. It affects my hormones, thus I can’t allow more stress until there are better answers to my hormones issues and resulting mood disorder.
I love those moments when I feel like loving life again
So far, no side effects from TMS. YAY! I am truly thankful for that as I seem to be so sensitive to so much now.
I’m learning more about natural ways to help me. Meditation and I’m looking at essential oils, even if it just helps me feel a little calmer I’ll take it. My vitamins/minerals are crucial and cannot say enough about a good magnesium and vitamin D3 with K2.
I’m doing all that I can to set myself up for success. I’m hoping my insurance will approve maintenance TMS treatments for me if I should need them. The hope is eventually my brain will be trained to keep the activity level changes TMS is making to my neurons. Keeping fingers crossed and I promise to keep updating when I can!
I love feeling light. I love that the racing thoughts disappear for awhile. I love that I am able to sit outside and enjoy the sunshine and not care what others think of me. I love those moments when I feel like loving life again.
It was a long weekend! Day 5 TMS treatment was Monday, but I wanted to wait for 24 hours to give me time to analyze a whole day. So like I said in Day 4 my hormones got messed up and my worst days would be Friday and Saturday. Saturday proved to be a doozy for me, I was all over the place and it was bad. I also had a damn virus and felt physically miserable which just exacerbates everything else.
Monday I was still recovering from the weekend. I panicked in the morning because apparently, I forgot to turn my alarm, but my body faithfully woke me up right at 7 AM. Got my kids ready, my TMS appointment was at 9 so I decided since I had to leave pretty early I could also take my kids to school. They were thrilled with me. They don’t really enjoy the bus, it’s too noisy and busy for them. I don’t blame them at all. I got them dropped out at school, got me a drink from a local 7-11 and headed into traffic to get downtown.
Going in I had to do my weekly mood/sleep/anxiety questionnaires. For the past several months I didn’t really have to think about it, because my answers had always been the same. It wasn’t getting better. Now though, instead I had to actually think about certain questions. It wasn’t that it was huge improvements, but that it was a noticeable difference under certain categories. Like my sleep wasn’t as disturbed, I had periods where my thoughts weren’t jumping to anxiety-inducing thought after thought. I was still sad a lot of the time, but not all the time. I didn’t feel hopeless all the time either. I had more than one bought of hope, of clarity, of when breathing wasn’t a chore. I had occasions where I could see a break in the cloud of depression and pain. I noticed even though I had a horrible weekend, I did not have any panic attacks. My mind didn’t keep poking at the constant annihilation anxiety that keeps sitting back there and laughs at every hopeful thought of mine.
I struggle with depressive realism, yeah it’s a real thing, and I come off as extremely jaded, cynical, and completely the opposite of the happy go, lucky person, I used to be. I mean that is what usually happens in life right? You grow from your experience and become jaded? But jaded to the fact that you should try to find something in life to enjoy? That there is even a reason to experience happiness in life if you are just going to die and your whole self is tossed into oblivion? Yeah. Happy thoughts.
Anyways, back to the topic brain, stop running away.
Treatment was easy Monday. Its becoming routine now, I go in, get settled in, chat with the TMS tech about how I’m feeling and any adjustments I need to make. I plug into and watch my heroes on Supernatural, my Winchester Brothers, and Castiel, my guardian angel in a trench coat and ignore the tapping on my head. Max strength and frequency on the right and I was at 115% on the left. Nearly to 120%.
I was in an out faster than I thought. I enjoy just going and sitting and not really having to think about doing anything for 40 minutes total and enjoying my show without guilt.
As I left, I made sure to pay even more attention to my mood and anxiety levels. I noticed it all day. I checked in with myself often. I am often hyperaware of my thoughts and emotions anyways, but usually I get bogged down in them. I didn’t today. I could check in and move on.
Until around 4:30-5:00 pm. I burned out at that point and my mood noticably dropped. My sensory issues came up, my irritability came up, and so did my anxiety. It was the cloud lowering back down and enveloping my mind. I knew though I just had to get through to the next day, the next treatment. I knew that the TMS was making a difference, just for several hours, but maybe my brain could learn to what it needed to do. Maybe this old dog could be taught new tricks.
Much love my peeps.
I didn’t write up my experience yesterday, not because it was bad, just because I ended up running all over the place in the afternoon and made a mad dash to Costco in the evening for some badly needed groceries. Rather than having to go into Downtown Seattle for my treatments I can no go to a more local office, so traffic is much better and its closer. No parking garage either! My car will be much safer! Yay! 😀
Anyways, back on track now. I did take my Adderall today, I promise. Just not responding very well.
For Day 2 and 3 my treatments both took about 35 minutes total. That is 15 minutes on both sides, plus the setup and finishing. Very simple, I walk in to the office, the tech usually is ready for me and takes me back to the treatment room. Again same chair, which by the way has a very adjustable headrest, which is nice. I’m on the taller side for my gender and I have a long neck so having the ability to adjust it is helpful for comfort and being able to sit still for longer.
They are starting treatments on the right side, which is still like a tapping metronome to me. It still makes me drowsy. My therapist suggested I put a metronome app on my phone for moments with heighted anxiety if that is really soothing to me. I get to now watch Netflix on an iPad with ear buds during treatment, which means I get to watch my favorite show Supernatural! This makes time go by very quickly and keeps me focused on things other than the tapping.
The area where the “tapping” is a bit sensitive to the touch now. I am currently at 105% of the threshold strength. Therapeutic levels are usually around 110-120%. On the left, they are going to keep building up slowly to 120% and on the right for me it will be 110%.
Both days I did experience mild pain behind my left eye due to the placement, meaning that the frequency is hitting a nerve. They did work to adjust it and most of the pain was greatly reduced. I did still have mild pain behind the eye, but it was very much bearable. This is due to just where my nerves are and where the placement of the coil needs to be to be most effective. The tech was very accommodating and understanding. After the treatment I have not had any residual pain and though I have a mild headache, I usually do most days anyways so for me it is not an issue.
I found out yesterday my estrogen levels are low, which is definitely impacting my mood given my history and what I know about myself, so hopefully between getting into see a new doctor who specializes in hormones and TMS over the next few months I will start seeing improvement. I hope I get some semblance of energy back soon, we will be moving in June and that process is already driving my anxiety and fatigue.
I’ll have more to share this weekend after the first four days of treatment. So far its pretty simple and essentially painless.
Day 1: I headed to my appointment for my first TMS treatment starting at about 8:10 for a 9:30 appointment. Though I’m only 13 miles away, I knew Seattle traffic. I should always plan an extra 30 minutes since I’m headed downtown. Not just for traffic, but I’m likely to get myself lost. Which I did. And I hit a stupid pylon in the parking garage so going into my treatment today I was worked up into panic mode.
So what is TMS? Well, it stands for transcranial magnetic stimulation. Why am I doing TMS? Well, I suffer from depression and anxiety due to a long morbid history, see my other blog posts, and so far I’m not getting the relief I need to have the life I know I can. I have tried everything so far that I can. So this is the next step. Trust me, I was extremely hesitant to take this step being a former ECT patient who has memory loss. The thought of messing with my brain anymore is scary. So are psychiatric medications or other drugs.
I wasn’t actually too anxious about trying this treatment, everything I read it was like being in an MRI kind of, just a lot more personal. Well I’ve had quite a few MRIs in my life so I knew I could handle that, I can even fall asleep in an MRI machine!
Anyways, I get in there, the office has the front desk and the waiting room separated by glass doors, which I found strange but then again, they have the coils going in multiple rooms so maybe its to protect waiting patients from that noise. I sat in the waiting room signing documents, fretting over the front bumper of my car, freaking out about what my husband is going to say, wondering if I double booked some appointments for the rest of the day or the next day, hmm was I missing an appointment on Friday? But I have TMS for the rest of the week. Yes that’s right, I have TMS treatments for an hour, five days a week, for six weeks. That is a lot. Let me ask you this though, if your anxiety and depression could go into remission for a longer period of time with six weeks of daily treatments versus being on high doses of medications for the rest of your life, would you take it? I would, well I am. I’m rambling…thank you ADD! I love you too.
One of the other patients kept glancing my way, I wasn’t quite sure what to make of it. She went back before I did, and my thoughts moved on elsewhere. Soon after 9:30 I was called back by the TMS tech that I was going to be with today, she was pretty and friendly. I’d seen her at the other office before, she’d changed her hair. We walked to the room and she had me put my stuff to the side, there was a chair, just like a dental chair, a computer on a mobile cart, and the TMS machinery in back behind the chair. I forgot to take off my glasses, no metal near the magnetic coils, so I get back up and put them in my purse. I brought a book with me just incase I needed something to busy my mind, though I didn’t have much hope for that as it’s so hard to focus on reading anyways. The tech was talking with me and telling me what she was going to be doing while the doctor walked in with the gal from the waiting room. Aha! She was a student and was there for training. Okay, curiosity resolved and I could focus my attention on the doctor. He explained that the tech was going to be placing this fashionable, white cap on my head to make measurements, at which point the tech started to do so. They were very clear that they were going to have to be up close and personal. He explained a little about the history of TMS, why they were making all the measurements they were. At one point the tech was doing one measurement in which she asked me to open and close my mouth, so while the doctor is standing there talking to me, with an intern watching, I look like a damn guppy. It was totally mortifying to me, but that’s just me. While she was still making the measurements I asked him about the difference between the bilateral and unilateral, since I was starting with bilateral I wanted to know a bit more. He seemed a bit surprised too that I was starting with bilateral and he confessed he didn’t read my actual consultations with my regular psychiatrist (she is his partner), so I explained a bit about my history (again see my other blog posts). He perfectly understood after my explanation why we went immediately to bilateral.
This is how it was explained to me essentially. TMS actually has been shown to affect the activity levels of neurons on the brain, in the hemispheres and areas where it is directed. When under going bilateral TMS, specifically High/Low, the left hemisphere is going to receive the High stimulation, which is about 10 taps (best word I can think of since it feels like something is tapping on your head) per second, to increase the activity levels on the left side of the prefrontal cortex. On the right side, they want to decrease activity levels for me, hence the Low. For the lowering of activity its about 1 tap per second.
Once they finally have all the measurements made now we have to find my threshold. So they use a specific coil with apparatus for measurement and marking that does only single taps to determine the strength/frequency that is needed. They do this by placing this special coil at a point in the brain that when at the right frequency will make your fingers in your right hand twitch involuntarily. It was interesting sitting there with the doctor moving this coil over my head, centimeter by centimeter asking the tech if my fingers twitched. They started the frequency at 50, the usual is between 50-70, and eventually we ended up around 59. The whole time I was wondering if I was going to respond at a normal level, because lets faced it my head is pretty messed up.
They mark the placement where my fingers twitched about 50% of the time and drew some more on my head on the left, then mirrored it on the right. They do not do both sides at the same time at the facility I went to, so I would be doing 15 minutes on the left and then 15 minutes on the right. Sometimes they start with the right, since its slower and such, but they decided to start on the left today. I’m special. 😀 At this point I put my ear plugs in, and drowned out the rest of the conversations that were no longer directed at me since the intern was asking the doctor questions and the tech was setting my chair up, putting the headrest in a comfortable position and leaning me back just a little.
Then they placed the heavy coil against the left side of my head, along the top, and a little forward. It wasn’t uncomfortable and they didn’t need to strap it as its on an adjustable stand. This also means I have to be careful not to move out of place or it won’t be in the correct position, well as some one with ADD, sitting still can be hard and I’ve been sitting still for a long time now. They are ready to start the treatment, I give them a big smile and say okay.
I get to feel actual TMS for the first time. It was slightly unnerving. Which they told me to expect. On the left side I would akin it to a woodpecker pecking at my head or a child drumming a pencil on my head rapidly. Kind of a flick/thunk, a flunk! I could feel some pain behind my eye, which they had told me was possible, once I said something they moved the coil around till that sensation was gone, its just a nerve being hit by the stimulus, nothing more. Once that was resolved, I then had pain in some of my teeth, so again, the tech moved the machine minutely and it resolved. It was a little irritating to be honest. I’m not going to lie about that, I wanted to brush it away but I sat as still as I could and usually just closed my eyes and breathed. Again it was not painful, only a little irritating. Just imagine that small child thunking you on the head for fifteen minutes. I will point out that for 1 second its 10 taps, then its a second break before the next tapping. It seemed to be taking a long time, but truly before I knew it I was done on the left side. She made sure I was doing well, didn’t need a break and we moved to the right side.
The right side was very different. I even felt tingly at one point. It was like a nice steady metronome. When I mentioned that to the tech she laughed and said that she had never heard of anyone call it that, but that it was a very good analogy. By the end of the 15 minutes I actually felt a bit drowsy, calm. Whoa. Of course I told myself its just a placebo effect. It was over. She placed my fashionable, artistic cap in a bag with ear plugs for me the next day, wished me well and she would see me soon. As I was walking out, a little lighter, I asked the front desk if I needed to do anything to check out, nope! I was all good. And off I went. That was the end of my first day of TMS treatment.
I got out to my car, surveyed the damaged I had done to it parking once again and took a deep breath. I was okay. No panic. Now I don’t think TMS works that fast, but it certainly didn’t hurt.
I will see how tomorrow’s treatment goes! Day 2 TMS here I come!