Saturday, September 19, 2009

10 Months

I recently returned from my 10 months checkup. As you can imagine, every visit has a battery of self-reports and depression instruments. On a regular interval there are extra "instruments" to measure cognitive ability and memory and such. #2 doc has the pleasure of going through one of the instruments that then turns into some magic number(s) that then goes to the programmer so that he supposedly knows what to adjust next. (This is my layman understanding).


I've tried bribing them to just crank it up. I've tried charming them into cranking it up. I've tried begging them to crank it up. But they have their jobs to do and although I'm sure they're supposed to keep as neutral position as possible, it's hard not to like them, if nothing else because they are trying to help.

IF I was off during the first 6 months, then this would be 3 months of being on.

Being somewhat scientific minded, I hope at some point to know more of the details.

I wish I had kept count - but I'm sure there are a couple of the depression instruments that I have done nearly 20 times. And I can almost run down the page with my answers. This time though, I think I answered a couple of them differently.

Yup - I think there MAY be some difference.

The fatigue is unabated. My use of my "Central Nervous System Stimulant" (Ritalin) hasn't decreased in total, although I have had a couple of days where I used it less, I have also had a few days where I needed more.

My sleep pattern is rocky as ever. Most nights is a 1 to 2 hour ordeal falling asleep. My use of sleeping pills is unchanged. Again, I have had a few exceptions. Early on I reported it had changed some for the better - but it returned to its sucky ways.

The self-talk cycle that accompanies the depressive symptoms seems to be a TAD better. I don't know if that is the electricity zapping those bad thoughts away, or if I'm practicing more cognitive behavioral therapy and reducing those thoughts on purpose. (I have been making a concerted effort to challenge those more often).

The mental fog is hard to measure right now. The good news is that I have been working - up to 20 hours a week. The bad news is that my motivation is not internal - but external - the bill collectors. So, in order to "function", I have been heavily relying on my Ritalin. The Ritalin does a magnificent job of reducing mental fog, allowing me to concentrate, make decisions and remember things more easily. I've still caught myself with a few train of thought derailments, but again, I am functioning. (The paperwork associated with the new job is excruciating and I can fully understand how people get hooked on speed. Remember, Dr. Freud at one time was a big believer in cocaine - self prescribed in fact). I do keep that in mind and on weekends and whenever possible - don't take the Ritalin.

The difference that may be occurring is in the level or deepness of the depression "feeling". That pervasive sadness that rarely lifts. Now I admit I have a great mask for when I am in public - or even with my kids, so someone with a camera may not notice the difference. It's hard to describe exactly but the depth of the sadness doesn't seem AS deep as often. If I were graphing the level of sadness/grief/blues and I believe I was at a constant 6 with spikes to 10, I think recently I have been more at a 5. I still have spikes to 10, but I think the duration of those spikes may be a tad less as well.

But lets be fair about this. I am susceptible to situational depression on top of my melancholia. At the end of July and in the middle of August, I suffered through two "friends of friends" committing suicide. (Sad to say but it was a good reminder to me to keep those deep spikes in check). My own spikes have gone to 10 watching my friends (and family) suffer through those events. Because of those and my own guilt I decided it was time to come clean with my children. One cried. I think one knew (long story) and the rest took it in stride. I came clean with all the little family secrets as well. Ends up they asked more about the other family secrets than they did the operation.

The skeptic in me worries my current mood uplift is a rebound affect. Down with the suicides - up with the honesty.

Additionally, as I mentioned, I have been trying to self-cognitive-behavior control the self-talk. AND.... [for anonymity I've erased a couple of stories about another medical problem I have and how I've dealt with it]

Now you have to ask yourself about the irony of a man who would seek out an EXPERIMENTAL alternative treatment to depression but would scoff at a 4000 year old alternative treatment for pain. OK - I am intelligent - not smart. Got it.

Anyway, throwing into the mix: the situational depression rebound, the purposeful self-talk, & of course - TITRATION of my DBS.

To prove treatments work (using the experimental model) there is a statistical level of change and a level of confidence in that change that all has to be 'proven'. I am not ready to say anything has proven successful. I can say last month's mood was better than 6 months ago and way better than a year ago when I was considering ECT.

Do I sound skeptical? Unfortunately. Paxil helped for awhile. Wellbutrin helped for longer. Life is full of situations which lead to depression. But - I had a little improvement last month - bottom line. Additionally, my angel, my girlfriend, told me the other night that she thinks I am doing more and feeling better. (She probably is a better barometer than either me or the docs).

I've added 3 links to the side. 2 are recent about the original study participants still doing well. The third is about the type of depression 'they' believe will be helped most by DBS. I think that is my kind.

No Ritalin today and I made it through typing this up with only 1 derailment and it came back to me pretty quickly. Who knows.... something MAY actually be helping.


herb said...


I’ve read your post. There is no real quantitative measurement to describe or ascertain one’s depression although subjective evaluation tests exist.

As a very long time and carefully observant support person I would trust your caring girlfriend’s evaluations. If she knows you reasonably well she’ll pick up on positive signs probably before you although you’ve already described some favorable signs (changes) that you too have noticed. It is not uncommon from my years of experiences to note that a spouse or significant other often notices changes in a partner’s mood state before the patient.

I am also in agreement with your woman friend (PhDs, MDs and Chinese MDs surgeon & psychiatrist), "Western doctors don't know it all". If they did, my spouse, you and others would have taken your one or two medications and gone on with your lives.

As for acupuncture being “whackery” when one thinks carefully about psychiatric treatments and the anti-psychiatry groups I think there is a significant number of individuals who maintain the same terminology for psychiatry.

So from my perspective whether it be acupuncture, CBT, chiropractor, medications, talk therapy, VNS, rTMS, MST, ECT, DBS, etc, etc, whatever yields some relief or achieves remission I am all for it along with reasonable safety and an educated patient with access and availability to treatment options.

I know from experience one of the most difficult words to express to a severely depressed individual is patience. So forgive me for suggesting patience but you are seeing positive signs as I cross my fingers for you that each day brings additional positive change(s) and sign(s) for you.

Thanks for sharing.


Jon said...

Only recently found this blog - via a friend - Am really interested in all your experiences, as I'm 1 of 8 people here in the UK to have been implanted with DBS as part of the 1st trial being carried out here.

Had my op' about 5 months ago, and so far haven't had any improvement in my depression - Over the course of the 5 mths my settings have been changed/increased twice, and I'm going in tomorrow for further changes.

Must say that you're doing well to be able to get the drive to keep updating your progress - I have short infrequent times when I can actually concentrate and feel "motivated" enough to try and do any kindof constructive activity.

I'd be really interested to know exactly how frequently they've been changing your settings - I've read about one of the original Canadian patients having "constant adjustments" over a period of 6 months - At that point,suddenly he says he woke up one morning and realised that the "pain, fear and anxiety had gone" - That's the miracle I'm really hoping for! - Sure you are too.

Are you in touch with any other patients in your study at all? - Wondered what their experiences were up to now.

Anyway, really hope you start getting some positive results - will keep checking for your next updates

I'm trying to get some other DBS patients to join a group so we can share experiences and support each other - Not sure if my profile thingy will show the URL for the group so will give it here as well, and ask anyone who's been implanted - or is interested in DBS to treat depression checks the group out and posts any info' they'd like to share.

Keep hanging in there and hope to hear from you - and anyone else again soon


Rich said...

I was implanted on June 12th, 2008. I am in the process of creating a web site, but this and the google group works just as well. I can be reached at

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