Category Archives: TMS is painful but not as painful as depression

TMS. A month later.

It’s been about a month since I finished TMS treatment for my depression and anxiety.  A lot of you asked if I’d do a follow up after some time had passed so here’s a quick one.

I’m still feeling good.  Not perfect, but so much better than I felt before the treatment started.  Overall I think the treatment gave me a few glorious days of true remission but mostly it just pulled me out of the truly terrible depressive period I was stuck in the last year.  I still have clinical depression and anxiety disorder but it feels a billion times more manageable than it did.  I was hopeful that I’d be able to go off my antidepressants but I don’t think that’s a safe choice for me so I’m staying on them, although I might decrease the dose a bit if I still feel okay in a few months.  I think I could lower the dose right now but I worry about the depression coming back and at this point I’m terrified to do anything that might put me back in that hole again.

My anxiety is much better than it was before treatment.  My agoraphobia is almost nonexistent, which is something I couldn’t even imagine before.  I’ve been slowly cutting down on my Xanax dose and as of this week I officially don’t have to take it daily…only as needed during anxiety attacks.  I hesitate to share this here because I think it’s easy for people who don’t have anxiety to say “Good job on getting rid of those drugs!” because most people don’t understand that Xanax (while it has a lot of shit side-effects) is a damn life raft for anxiety.  And while I’m proud of the work I did going off it (because it was hard, honestly) I know that it’s entirely possible that I will have to go back on it and if I do I want to remind myself that that is not a fault or something to be ashamed of.  I’m happy and grateful that the treatment I’m on is working better than many of the things I’ve tried in the past but what I’ve learned is that I didn’t fail in responding to past treatments…those treatments failed to work for me.  And that is a big difference.  One we all need to keep in mind.

Because I feel better I’m able to do a lot of things to help myself stay better.  These were things that felt impossible a few months ago but now seem almost as easy as the people who don’t understand mental illness always insist that they are.  I walk 1-2 miles a day.  I get sun and fresh air.  I leave my house.  I’ve started cleaning out the piles of crap of accumulated when I was too tired to work.  I write.  I go to sleep before 2am.  I’ve stopped drinking and am training for a marathon.  HAHAHAHAHA.  Okay, not that last sentence.  If I ever exchange vodka for running-on-purpose it’s a pretty good sign that I’m in a cult and need rescuing.  But the other things are things I’m pretty proud of.  Again, I don’t think I could have done any of those things in the deep depression I was in, but I’m taking advantage of the fact that right now I can do them.

I still often feel like a failure.  I still have dark days.  I still have to avoid my triggers.  I still have massive problems with concentration and memory and motivation.  I’m still broken.  I’m still me.  I’m still looking for a way through.  But I’m glad to have found a way that helped me if for no other reason than to reaffirm that there is hope.  There is always hope.

PS. A few people have asked if I was compensated in any way for writing about TMS.  Fair question, but no, I wasn’t at all.  Insurance paid for some of it (after a ton of denials) and I paid for the rest myself.   I only share it here because I know I’m not the only  one struggling with this.  TMS is not for everyone and is still really in its infancy in many ways.  It doesn’t always work and when it does work it could stop working at any time and no one knows why.  It’s uncomfortable and time-consuming and expensive.  But for me, it was so worth it.  I was (and remain) very lucky.

 

On finding the cure for depression

So. If you read here you already know that I’ve been getting stabbed in the brain by magnets every day for an hour for the last few months.  (Click here to read the whole TMS story if you’re new here.)  And yesterday?  Was my last session.

Overall, it was uncomfortable, weird, a reminder that insurance companies are satan, expensive and time-consuming.

It was also totally worth it.

I am not one of the lucky third of people who went into full remission with transcranial magnetic stimulation.  I’m also not one of the unlucky third who the treatment didn’t work for.  I’m in that middle ground…better, but not perfect.

But better is so good.  I’ve tracked my moods every day these last few months and (other than a short dip halfway through treatment) I’ve steadily gotten better.  I even had 5 seemingly random days over the last month where I felt what I imagine most people think of as normal.  I haven’t had days like that in so long I’d literally forgotten I could feel that way.

I know some of you are looking at the process yourself and every single person is different but here’s how it helped (or didn’t help) me:

Depression:  When I started treatment I was in a deep and very long-lasting depression that I’ve been battling for well over a year.  I didn’t even realize how bad it was until I started coming out of it.  I think I was operating at 10-25% when I started treatment.  I’d say I’m between 60-75% now.  I’m still have depression.  I’m still medicated.  But this treatment was like a soft reset…like turning your phone off and on again when it gets laggy and broken.

Concentration:  This is still a struggle for me but I have seen a little improvement.  Not much, but a little.

Sleep: My sleep patterns changed the very first week.  I still struggle to fall asleep and stay asleep but most nights I’m asleep around midnight rather than angrily tweeting about insomnia at 4am.  I’m less likely to feel like I’ve been drugged and hit by a truck in the morning.

Anxiety: TMS treats depression on the left side of your brain but I also did treatment on the right side of my brain for anxiety.  This isn’t always standard so ask your doctor about it if you’re having TMS.  This is where I felt the most improvement.  When I started TMS I was having severe anxiety and massive problems with agoraphobia.  I had a hard time leaving the house and I didn’t answer my phone. I struggled with even emailing people.  Right now I feel almost normal.  Tomorrow I’m leaving to see Europe for the first time in my life and I would never have imagined I’d agree to on this trip if you’d asked me a few months ago.  And I’m scared about traveling but I’m excited, and that’s something that I haven’t felt in a long time.  My family actually noticed these changes in me before I did.

OCD and ICD:  Unfortunately TMS didn’t really improve this a ton.  I still feel irrational OCD and ICD thoughts but slightly less.

I don’t know if this will keep working but if I fall into the deep depression again I qualify to get follow-up treatments in the future and it’s nice to have hope.  In fact, hope is the best thing that came from this treatment.  This treatment is still new and strange and we don’t know exactly why it works for some or why it doesn’t for others but the fact that it does work for some people means that there’s hope for all of us…that things are getting better and slowly we’re figuring out how these wonderful and terrible engines that run us work.  I have hope that I will get better.  Because I did.  And that’s a good reminder to keep close when things get bad again and my depression starts telling me lies.

I will get better.  So will you.  Each day more and more people understand the struggle and more treatments become available.  One day there will be a cure.    We’re getting closer every day.  And I’ll be here for it.

PS. I did embroidery every day as I got treatment and a friend (Laura Bundesen) sent me a pattern that I could concentrate on while in the chair.

Finished:

Stabbing a brain thousands of times while getting stabbed in the brain thousands of times. It’s almost too fitting.

I have less time to be crazy

Today is my 27th day of getting punched in the noggin with Transcranial Magnetic Stimulation which means I have only 9 days of treatment left until I’m completely cured!

Kidding.

About being cured, I mean.  There’s no permanent cure for mental illness yet but I have hopes because this shit seems like it’s sort of working.  I still have dark days and fatigue and brain fog and all that jazz but I also have bright days…lots of them.  More than I’ve had in longer than I can remember.  And I have enough energy to go to treatment every single day and at this point that is sort of amazing.

Session 25: It looks like my glasses are on crooked but it’s just that the magnets are causing my face to spasm and eyes to water.

My last visit with my shrinks went well (I’m seeing one at the psych unit and my old one as well) and one of them told me that when you finally get into remission from depression you are 350% more likely to stay in remission if you exercise 30 minutes a day for 6 times a week.  Spellcheck tried to correct “exercise” to “excessive” and I agree, spellcheck, but I’m trying it anyway.  I’m also sleeping better (which is the first response from TMS for most patients) and that helps with feeling better and that means I have more energy to exercise and suddenly I’m almost a healthy person if you don’t look at all the bacon and vodka I’m consuming.

Overall it’s good and I’m relieved and scared that it will stop working but there’s another issue I hadn’t counted on, and that’s guilt.  A little is guilt for not doing it sooner (although if I had done it when it was first recommended they wouldn’t have treated both sides of my brain so it worked out well that I waited) but mainly it’s guilt over using my time for such self-indulgent things.  Rationally I know I shouldn’t feel this way but it doesn’t change the fact that I feel like I’m being selfish.  It adds up…the hour I spent driving to TMS, the hour I spend in the chair having magnets punch me, the half hour I walk or swim, the hours I sleep instead of work or worry.  It feels like cheating.  That’s wrong.  I know it’s wrong.  But knowing and feeling are different things.  I know that time given to yourself to make yourself healthier is good for you and for everyone around you.  I know that it takes time and effort for some of us to stay sane.  I know that I’m worth the work and that I should feel grateful that I can take care of myself without feeling guilty.  So the next step is moving from knowing to feeling.

I don’t think I’m alone in this.  I think so many of us struggle with the thought that it’s okay to take care of ourselves, and it’s strange that it’s a struggle to treat ourselves as kindly as we treat the dog.  The dog needs walks, and healthy choices and water and play and sleep and naps and bacon and more naps.  And love.

I need that too.  And so do you.

It’s not just a gift we give to ourselves…it’s a duty.

I’ll remind you if you remind me.

Is this how it’s supposed to be?

 

Happiness.  Every day I have it drilled in my head…figuratively.  And now sort of literally.

My 15th session of transcranial magnetic stimulation was yesterday.  My 16th, 17th, 18th and 19th this week.  Another 20 lay ahead.  They still hurt a little, the magnets drilling and tapping so loudly I have to wear earplugs.  My blinking tic beats out an involuntary pattern with the rhythm and my eyes water.  Afterward my skull feels misshapen, my face stiff as I make strange faces on the long drive home.  But each day I feel stronger and instead of feeling like my mental illness is being beaten into submission each session, it feels different.  I feel the pulses shooting goodness into my head.  It’s worth the pain, I think.  The slow tapping on the right side of my brain where my anxiety lives.  It whispers with each pulse:  YOU.  WILL.  BE.  STRONGER.

The furiously fast drilling on the left side of my brain where my depression lives:  YouWillBeOkayYouWillBeOkayYouWillBeOkay  *breathe*  *remember to breathe*  

I feel different.

On Sunday I think I looked almost like a normal person. I was still scared.  With each step I knew I could fall back, that the exhaustion and fatigue and anxiety could hit me at any second.  My daughter knew too…and she was amazed at each step I took.  Yes, we can go get lunch.  Yes, I’ll take you to get new shorts.  Yes, we can go to the mall, the candy shop, the book store.  Yes, we can swim and listen to show tunes and sing.  Yes, we can play a game.  Yes, I’ll read to you.  

Yes…I’m enjoying this too.

It was the most I’ve done in a single day in…longer than I can remember.  And instead of ending the day feeling rung-out and empty and raw I felt…normal?  Is this what normal looks like?  Because if it is I want this.

Normally I struggle with simple things.  I make strange choices.  The strength is takes to shower or the energy it takes to eat?  You don’t get both so choose wisely.  Every action takes such work…as if living with mental illness is like waking to a new different disability each day.  Someone else could quickly do the simple tasks of the day but I am hobbled.  It can take hours for me to do what could be done in a good day in minutes.  But not today.  Today I feel strong.  I feel guilty for being able to leave the house without xanax to dull the world…for being able to accomplish the things that normal people do every day.  And I feel angry that this comes so easily.  I shouldn’t.  I should feel lucky and blessed but then I remind myself that it’s not just happiness coming back….it’s all of the emotions.   It feels like cheating, like I’m on some illegal drug or cheating somewhow…stealing these emotions I forgot were so strong.    And maybe that’s for the best because it means that I appreciate how much mental illness takes from me when it is present and how much it’s worth fighting for relief.  Even with it hiding I know it is a terrible monster I will always fear.

When this monster shows its face I fear the world, I fear myself.  I loathe the terrible things that I see and I am too paralyzed to even discuss the news items that stick in my head.  My dr tells me it’s not safe for me to dwell on these things and it’s true…my intrusive, compulsive thoughts makes me obsess about terrible things that happen in the world.  She reminds me that it will suck away my life if I allow myself to be paralyzed with fear and dread.  I am not built for rebellion.  Not yet.   She reminds me to look for the good in the world because it is real even if it doesn’t get the same press and this is a very good idea for people with broken brains, but mine keeps repeating “It’s not enough.  We’re all going to die.  The world is awful and I am a part of it.”

But now, today, it’s saying something different.  It says that the world is a terrible place…sometimes.  And filled with terrible people…who can change.  But suddenly I’m reminded that there are more people who I know who care, who are empathetic, who fight for others in quiet and loud ways.  I see that I am not alone.  I see how terrible it would be to feel the terror of the world by myself…and how heartening it is that I can see so many people doing small and beautiful things to make the world better.  I’m reminded (for the first time it feels like) of how alone I would feel if I was the only one who felt disconsolate or frustrated.  I’m reminded of how lucky I am to be surrounded by people around the world who care about others.  Who are here for each other.  I think I knew all this before.  But mental illness changes “knowing” and “believing” into two very different things and I can breathe for a moment and know that it will be okay.

It’s an epiphany that brings me such relief.  It’s going to be okay.  Not perfect, never perfect…but we will be okay even when we’re not okay.  Even when we’re wanting to be better than we are.  It’s okay to take a breath.  To love and celebrate and smile and mourn and dance and cry and start all over again.

After a Sunday of driving and shopping and dealing with real live people in the loud world I come home and I am so surprised to find that I am not exhausted.  My daughter tells my husband how much we did.  “Mom did so great!” she says.  As if I am the child.  And it makes my heart swell and break at the same time.  But I will take this.  I don’t want to lose it.  It feels so shaky.  Like holding on to magic you know can’t be real.

My husband mentions traveling this summer…the beginning of the same argument we have had for years.  I can’t travel.  It’s too taxing.  I would get sick.  I would end up in the same wheelchair I’ve ended too many trips in.  I would slow them down.  They go off together on adventures and I am sad but relieved.  I’ve missed many trips.  I missed the first time my daughter saw Japan.  I watched them on FaceTime from my self-imposed jail as they explore the world.

But I will not miss the first time she sees Europe.  Because it will be the first time I see Europe too.

I think it surprised Victor, how quickly I said “Okay.  You know what?  I’ll go.”  He and Hailey held their breath as if I’d take it back.  I hold my breath too.  I wait for my body to say, “No, this was a trick.  It’s not real.  You don’t deserve this.”  But it’s not saying that.  Not yet at least.  It’s saying, “I want to go.  I want to live.  I’ve been waiting so long.”  It says “Let’s see Scotland and London and Paris.  Let’s walk on distant islands and walk through mountains and see the things that I can’t quite imagine really exist because I never thought it would have been possible to see them.  But maybe, a little voice inside my head whispers, maybe it’s possible.

Maybe.

Maybe this is real.  Maybe it’s not forever but it’s for today and if it’s real today then there’s a chance that any day in the future could be like this one…full of promise and energy and an ease I feel like I’ve stolen…one that I feel jealous of even as I experience it.

Next month I will have completed 35 days of TMS treatment for anxiety and depression.  And to celebrate (knock on wood) I will see things I never thought possible.  Some of them in distant lands, yes, but many of them the lovely, simple things that the rest of the world takes for granted.  I will take my daughter.  I will say to her, “Look.  Here is the world.  It’s been waiting for you.”

I will say it to myself too.

Please God let me still believe it.

“Fuck all this. I wanna be a dragon.”

Today was my 14th TMS treatment and it’s still weird and uncomfortable being drilled in the head but I feel better.  

I had one dark day this week but the rest of the time I’d say I feel 50% less depressed and I haven’t had insomnia (KNOCK ON ALL THE WOOD) in a week, which is insane because insomnia is my full-time boyfriend and I do not miss him.  TMS could stop working and it might be a coincidence but after 3 weeks I think I can say that it’s sort of working?  (I whispered that and put a question mark behind it so that the God of I-Heard-That wouldn’t fuck with me.)

There are little things I notice, like the fact that I’m less likely to tweet terrible things at 3am and that I actually want to listen to funny stuff.  I haven’t wanted to watch anything funny in a long time because my depression makes me not be able to appreciate it and I feel like I’m failing at being human, so instead I watch documentaries and horror films because they match my mood, but today I caught up on my friend Ze Frank’s True Facts series again and I smiled.  That smile is the equivalent of laughing hysterically for normal people and it’s a welcome thing.  Will next week bring me saying that I feel like shit now?  Maybe.  But it’s nice to know that something worked if even for a few weeks.  And now, true facts about pangolins.

PS. I finished a new embroidery kit.

My daughter thought this was Gyote so I’m pretty sure that means I have failed as a mother.

 

The pursuit of zappiness

This is my second week of daily TMS treatments and I know that’s all I seem to talk about but that’s because it’s sort of eating up my life, but in a so far totally worthwhile way.

Today I finished this embroidery pattern, which seemed fitting because I was stabbing someone in the head with a needle while being stabbed in the head with magnets.

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I’m getting faster.

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Then I started a new one but paused to take a panoramic picture of myself in treatment so you can see how it looks.

My face is mid-spasm because today they went up to the highest voltage but look how cute and teensy my feet seem.

And then I went outside and this happened:

I don’t know if this is working or it’s a coincidence.  I don’t know if it will keep working if it’s working now.  But I know that mental illness is real and that we’re worth the process of looking for a cure.  Today was a needed reminder of that.

And on the seventh day, she was cautiously optimistic but also totally expecting some sort of emotional avalanche to hit at any moment.

So.  Today is my seventh day of rTMS and I feel…crazy?  Which makes sense because they don’t magnet punch mentally sound people in the head for 6 weeks but what I mean is that I feel crazy for feeling like maybe this could be working.  Because (knocking on so much wood) I went from a full depression at the beginning of last week to a quick (for me) bounce back into “okay” and this weekend I actually felt good.  Like, I wanted to leave the house voluntarily.  I almost went to a museum.  That sounds like a small thing but I assure you that it is not.

Yesterday – for the first time in months – I felt like listening to music.  I don’t like music when I’m depressed.  It makes me feel too much when I’m raw and it makes me realize how numb I am when I’m unable to feel anything.  Instead I fill every quiet second with podcasts…anything to drown out the thoughts in my head and fill in the minutes until my head is right again.  Wanting to listen to music is a sign I didn’t even know I was looking for and it’s also a sign showing how long it’s been since I’ve been “normal” as all of my music was still undownloaded from the last time I got a new phone.

I’m not 100%.  I still feel exhausted.  I still feel brain fog and anxiety and the flashes of light in the dark are still flashes rather than steady streams.  It might be all in my head but that’s where I keep my crazy so that makes sense.  It might be a placebo effect but since I’ve failed at so many treatments it seems unlikely.  It might be coincidence that this bit of sweet relief started not long after treatment started and maybe would have happened normally.  I won’t know for awhile and even if it works it might not work forever, but I am so clinging to this feeling and to the reminder that things can be good again.  The reminder of how sweet it is to breathe again without having to remind yourself that this will pass.

I’ve had something really awesome to share with you for months  but I’ve been so down that I didn’t want to share it because announcing something great and then listening to people be excited about something I can’t feel anything about can bring about such cognitive dissonance that it’s not worth even sharing but today I feel good so today I’m going to tell you that I’m currently working on two new books.  TWO!  I’ve been working on them for awhile but they are now actual books with real live editors and publishers and probably won’t be finished for a year or two because I am slow even when I am good but still.

One is a collection of humorous essays/memoir like Furiously Happy and Let’s Pretend This Never Happened and the other is a YA southern gothic novel that I’ve been working on when I was too dark to be funny.  I’ll share a real announcement about them when I don’t have to rush off to the psych unit.  Today is treatment plus analysis and it eats my whole day and all of my energy, but it so worth it if it works.

Also, several of you asked me to make t-shirts for you to wear to show your support for me and for the people you know who are struggling.  Their specific suggestion was “You know…something that matches this community.  Something weird but supportive.”

Done:

Edited to add: If that shirt shows as “sold out” you can pick another one with the same design like this one.