About That

I am slightly ashamed to say that I didn't start ECT today..

I say only slightly, because I should have updated here sooner, NOT that I postponed the procedures.

I started a new job on Friday.  And as they scheduled things for me (rightfully so), the anxiety in my stomach grew and grew.

I was scheduled things for Monday.  Most I could reschedule. One (the most important, of course), I could not.  So I left my work meeting on Friday, my stomach teeming with nerves.  Even though the immediate cause for  a nervous stomach and mind had passed (my recent meeting), the jitters in my insides hadn't gone away.  I couldn't calm down. 

M picked me up from my meeting (I cannot drive, remember) and we settled into a discussion of how my initial meet and greet had gone down.  As I talked with him, I realized the stupidity of trying to start a new job, with all the learnings and new information, and also do a procedure famous for memory loss.  It just made no sense. 

So I decided to cancel the ECT for this week.  They couldn't have been more understanding and simply scheduled me for three more appointments on the back end of my current schedule.  I should have felt immense relief after taking that off my plate.  Instead, I am experiencing anxiety like never before. I don't know why I am so anxious, except that starting a new job is always stressful, and adding this in to another parttime job and ECT constantly hovering on the horizon, I suppose I can understand why I feel a little out of sorts.

I got several kind messages via Facebook from those of you who were expecting that I'd had the ECT done as planned.  Thank you for that.  I will need those words of comfort when I actually do ECT.

The next question is. .  . when will I actually do ECT?  The thing is that the first few weeks on any new job isn't exactly the time to be compromised in any regard.  I have no idea how I will respond to ECT.  I could be just fine, but even so, I will be unable to work for several hours, three times in one week.

So I don't know what to do. I still feel depressed.  I still spent most of my weekend either in bed or on the couch.  I still believe that ECT is a viable option for me.  But I might need to wait until I have established myself in this job a bit more before I make that leap.

More waiting.

Fear and Hope

I begin ECT on Monday.  That's just a few short days away.  As the time draws nearer, I spend a lot of time thinking, "Do I really need to do this?"

It seems extreme.  It is extreme.
My whole life will be turned upside down for a month while I do these treatments.  They are three times a week, smack in the middle of each day that they are scheduled.  It takes almost an hour to drive to the facility where the procedure will take place.  I am not sure how long each session lasts, though from my reading, it sounds like it will be quick.

I don't dread or fear the seizures.  It is weird to know that I will be having a planned seizure, when my whole life is spent avoiding seizures.  I do know what it's like to recover from a seizure.  One of the things I hate the most about a seizure is biting my tongue or cheek.  I often wake up with blood all over my face and clothes, because tongues bleed a lot when they are bitten.  From what I am able to gather, they use a mouth guard, so I shouldn't bite my tongue during these seizures.  The only literal pain is recovering from the

Other than that, time gets fuzzy around a seizure.  I often forget chunks of time immediately before and after one.  I am guessing this might be similar.

What do I fear most about ECT?  Something going wrong with the anesthesia is my number one fear.  I have no reason to fear anesthesia in particular, but going "under" twelve times in a month increases my chances that something could go wrong.  So I worry about that.

I worry that my memory will be obliterated.  I already struggle so much with my memory and to think of it being further compromised is scary.  

I worry it won't work.  I worry that I will wake up and feel exactly the same, only adding in memory issues to boot.

To add to my fears and concerns, I start a new job next week.  The timing honestly couldn't be worse.  I am just hoping that I will feel good enough to work after each session and that I won't be too compromised. 

I basically feel like a big ball of anxiety, thinking about all that could go wrong.  Of course, I also am clinging to the hope that everything will go well, that I will spring up from my very first ECT, with a renewed sense of well-being and purpose.  It isn't unheard of for patients to improve from just one session.  I sincerely hope that I am one of those people.

90%.  I just have to keep focusing on that 90%.  I deserve to be happy and healthy again and I choose to believe that this will be the key to that.  

90%.

Finally!

I finally got the phone call with the schedule for my ECT treatments.  And of course, now that I have the dates on the calendar, I am losing my nerve.  Thoughts keeping rioting through my head.  Am I really going to shock my brain?  Is my depression really that bad?  Maybe it's a bit better and I should wait.

But I really don't think my depression is better.  Not really.  I know what normal me feels like.  And I am not normal.  Then I worry that maybe there is no normal me anymore.  Maybe that energetic person is gone forever and I will be a sloth for all of eternity.

90% effective.  That is what I have to focus on.  My psychiatrist says it is actually closer to 95% in all of the clinical studies.  So I'd have to be really unlucky to be part of that small percentage for whom it doesn't work.  But I've been part of a small percentage before and it wasn't all that much fun.

See, I told my doctor's nurse I wasn't brave.  I am really just scared.  Scared of the procedure.  Scared that it won't work.  Scared that I will always feel like this.

BUT.  My fear of staying like this forever and being this depressed person is my greatest fear of all.  It is a fear great enough to propel me forward and do this.  I CAN DO THIS.

Still Waiting

I am not a very patient person.  And I am especially impatient when I don't know why I am waiting.  Right now, I have done my part and completed everything I was supposed to in order to get ECT underway.

And I wait.

I have called the office a few times (and the last thing I want to do is annoy them) and each time, I am told that everything has been done and that I will hear from the scheduling department in a day or two.

And I wait.

I had an appointment with my usual psychiatrist today. I asked if he could do anything to speed things along and he said not really, but that he would do his best.

We did increase my antidepressant (I just started it and am still not at the max dose that he goes to) and he refilled my antianxiety rescue meds.  More pills.  I am just so tired of taking pills that don't seem to help.  But this could be the magic combination we are looking for, so I have to keep trying and taking.

And waiting.

Well, I got a pleasant surprise yesterday.  Dr. H's (neurologist) nurse called to give me the titration schedule for my medications.  I guess talking with Dr. A (neuropsychiatrist) cleared things up for him enough to support me going forward with ETC.

So the next step is to schedule the procedure.  I should get that phone call today.  Eeek!  I am excited and also a little nervous.  It's getting real now.

Meanwhile, I called my parents, who are going to be staying with us while I get the first rounds of ETC. My dad will drive me to the procedure while my mom will stay home with the kids.  Then they are here to help out, if I don't feel too great afterward (sometimes people have headaches, body/muscle aches and pains, and/or feel lethargic from the anesthesia).

They let me know that it won't work for them to come up until after the week of the 4th of July.  That's another almost three weeks from now.  When every day seems like an impossible struggle right now, that sound like eternity.  I know I can't expect my parents to drop everything for me, but I had hoped they would realize how important this is.  But for all I know, they are booked out several weeks anyway.

So, now I wait for the phone call.

No news from either doctor.  I am in a frustrating holding pattern.

A commenter mentioned two alternative treatments:  TMS and ketamine injections.  Neither of those are viable options for me.  TMS is contraindicated in patients with epilepsy and my insurance won't pay for it, plus Dr. A won't do it.  End of story.  My insurance also won't pay for ketamine injections, as it is an off-label use of the medication.  A series of ketamine injections, not including the upkeep injections which are recommended monthly, is about $6000 in the Seattle area.  We simply don't have the money for this.  I already had an expensive, week-long hospital stay this year in March.

I don't have a lot to say right now.  My brain feels foggy and stuffed.  I am having a rough day today, where I feel anxious and overwhelmed.  As usual, my feelings are off kilter to my reality.  I have no reason to feel this way, but try telling that to my brain!

I spent three hours of my day in bed.  During most of that time, I argued with myself, trying to get myself out of bed.  I finally managed to do so and then talked my reluctant kids into a walk.  It is a gorgeous, sunny day and I was hoping getting out would help.  While it certainly didn't hurt, and I am glad that I forced myself out, I was anxious on the entire walk and have been alternatively in tears and having a panic attack since getting back.

I don't know what is next but I hope it is better than this.

Roadblock

So my neurologist is refusing to write a letter saying he is okay with me getting ECT.  From what I gather (from his nurse), it has to do with my medications.  

I take three anti-seizure medications daily.  The whole point of ECT is to initiate a seizure, so Dr. A (the neuropsychiatrist doing the ECT) wants me to stop taking those medications for 24 hours.  Dr. H (my neurologist) says it wouldn't be safe for me to discontinue my seizure medications so he won't write the letter or advise me on how to titrate them down.

Without that letter or titration, Dr. A won't do ECT.  So I am stuck.  

I called Dr. A's office and explained the situation.  So they are going to have Dr. A talk with Dr. H and see if she can't explain things better than I have.

If all else fails, I have an appointment with Dr. H on July 5th.  I feel like if he knows how bad off things are, he will help me to reach a solution.  He is a compassionate man and I know he is probably in a tough spot, too.  

I haven't had a seizure since March.  So it does seem a little counterintuitive to stop taking my medications, even for a brief period.  

But I don't know what to do next if this doesn't happen for me.  I am afraid that I will be sucked into a deep mire of hopelessness if this can't happen.  I know I should keep my mind open to other possibilities for treatment. I just feel as if I have tried so much.  And I am tired of waiting for things to get better on their own.