Monday, December 1, 2008

The Start of the Journey

I've been suffering from depression for about 10 years now and it has gotten progressively worse. About 7 months ago I checked into ECT (brain shock) to see if it would help. I'd love to have a couple of weeks without my black cloud!

I got up the courage to do it, but then the doctor was out of the country during the time I had set aside. In the meantime, I researched other alternatives and found a study of VNS (Vegus Nerve Stimulation). At first I thought, ya, I can do that instead, and I contacted the University hospital conducting the study. The more we talked, the less I liked VNS. However, they were also a study center for DBS - Deep Brain Stimulation.

So why am I writing this? Well, I was very proud of Kara, who blogged her experience with ECT and it gave me courage and hope. We corresponded a little and she helped me with some questions I had. Some of her answers ultimately helped me decide not to do the ECT. Why? Pride probably - and I'll get to that.

Pre-depression I was an MBA trained consultant / executive. I was married and had wonderful children. One could say I was successful, both in the material ways and in the more important "love & family" ways. Now that doesn't mean I was perfect by any means, it simply means I was able to accomplish just about anything I wanted and had a VERY enjoyable life. I was happy. To the core happy.

Slowly the depression creeped in. At first it was just an small amount of fatigue. More tired than I should have been. A checkup at the doctor didn't show anything but I was running high blood pressure (genetic). The doc put me on a mild anti-hypertensive medicine. My fatigue however, got worse. One of the side effects of the med he put me on was that it exacerbated depression. The doc asked me a series of questions and changed my blood pressure meds and also put me on Paxil.

My world got better for awhile. I had energy and was generally in a good mood. I enjoyed getting out of bed and taking on the tasks at hand. But then the fatigue came back. We upped the Paxil... a few times, but every time, it seems my body would build up a tolerance. So we started switching to see if there was a anti-depressant that worked better. I've been on Wellbutrin, Effexor, Stablon, Cymbalta, and Lexapro. (And probably some I don't remember).

The Effexor did well for awhile, as did the Lexapro. That doc moved and sent me to another one. He is an aggressive doctor (which I like). We also switched around, but then he got me on Paxil and Wellbutrin together. This worked for probably the longest period.

But it wasn't enough. In the last 6 years I've gotten divorced and lost my career. I've chosen to pursue another career (back to school) for a variety of reasons including staying close to my children.

After losing the job, I went to a new psychiatrist. (New to me - not brand new). She took me off the meds (which weren't working) and put me on Lamactil and introduced me to Ritalin. The lamactil never really did much for me, but by golly, the Ritalin gives me the energy to get out of bed and DO something.

My family doc, who had put me on the combo in the first place, wasn't really keen on the "speed" to compensate, but he didn't have any other ideas. The fatigue is my main complaint. I also suffer from the "sad" blues on a regular basis, but years ago I went through a self-help thing that gave me a lot of tools to combat the blues. I can handle those - when I'm not fatigued. (Does that make sense?) A great program for me at the time.

My identity though needs to remain anonymous. You see, hardly anyone knows about the depression. The ex-wife knows - and she saw it as a HUGE flaw. She couldn't believe I took anti-depressants and sure as hell didn't want to talk about it or let ANYONE know. Fair enough. We ended with a nasty divorce and I'm sure it would have come up in the child custody if push really came to shove, but we came to an agreement where I get the kids 50% of the time.

But the kids don't know the extent of the depression. I've never hidden my medicines and I suspect the older ones have seen them and either researched it or asked their mother. But I don't talk about it. I know - I know - why hide a disease? Well, because in my generation - it's a sign of weakness. It's a stigma.

Before I lost my job I tried to explain my performance problems to my boss as depression symptoms. He was NOT sympathetic. In fact I believe it hastened my departure.

Other symptoms of the depression that really bother me are the cognitive fogs and the mental interruptions. People who have had severe depression know exactly what I mean. Others really don't comprehend it well. When the cognitive fog comes (which is every day now if I don't take the ritalin) it's like your brain just can't connect to the thoughts you want. Many people have had the Tip of the Tongue syndrome where you can't think of a word, but you know you know the word.... The cognitive fog is like that, but for concepts as well as words. People even. It's right there on the tip of my tongue - but the connection doesn't come.

The mental interruptions are similar. We've all experienced our thoughts being de-railed. "Lost my train of thought". Yep - try that happening 3 or 4 times a day, or virtually any time you attempt to focus on something you're not really interested in - um, like the company's P&L for the month. The train totally gets derailed. But, those of us who are quick on our feet have figured out coping mechanisms to hide it. We just change the subject if we're in a conversation. Or, as I have had to do, mark every paragraph I've read, just so when I lose my train of thought, I know where to go back to. Yuck.

All this is complicated even further by my ego.... My cognitive ability has helped define me. I can solve just about anything - and had the tenacity that I wouldn't give up. (I'm really not trying to brag, I'm trying to paint a picture as to why the symptoms of the depression bother me so much). My brain has been a lot of my identity. Now, unless I'm fully on my Wellbutrin and just took a hit of ritalin, I'm slow. Problem solving is more difficult and if the fatigue hits - well - I'll just lay down for awhile and come back to the problem. (Usually never come back to the problem).

So what about the DANGERS of depression, like hurting yourself or suicide, you ask? I've had a couple of times when I've thought about it. I've had plenty of times that I've wondered"When will the pain/fatigue/embarrassment stop? Maybe I should...." But that's as far as it goes. I've failed at a lot of things - marriages, jobs, relationships, projects, careers - but I won't fail at living. My kids deserve more.

I literally have to make lists and notes about what I need to do this week and today to portray myself as a functional person.

Socially I've declined in friends. I got REALLY lucky a little over a year ago and was introduced to a lovely woman my age with grown kids. I've been painfully honest about my depression with her and she hasn't run away. (A few other women did - and I can't blame them, frankly). The GF however has had depression and come out of it. So she knows the score and fully accepts it as a disease. Wow.... what an angel.

(And getting back on track please)..... after contacting the hospital doing all these trials, they invited me in. The university's psychiatric department is headed up by someone famous - who if you search the internet, you find his name all over the place. The doctor doing these trials is a pretty smart cookie as well. And he shoots straight. My depression is "moderate" by his standards. (Of course he commits people to in-patient treatment on a DAILY basis). He wasn't sure I was 'depressed enough', but he gave me a shot at it.

At first I thought, well, I can BE more depressed if that's what it takes to get in the study, but then I decided that really wasn't in MY best interest. If this study wasn't for me - there would be another one, or I'd pursue some other avenue. Like I said before - I've let my pride get in the way of showing how bad it affects me - so I just let me hair down and rolled with the punches. I took all their little depression tests and visited with them a number of times over about 2 months before the doctor's administrative assistant told me I was in - IF I wanted to still be in.

The trial is a blind study - which means I won't know if the gizmo they give me is turned on or not. At least for 6 months I won't know. from what I understand 2 out of 3 of the gizmos implanted will be turned on. The other 1/3 won't be turned on for 6 months and NONE of us will know which one we are.

The previous tests for this gizmo showed about a 2/3 chance of lessening the depression. So.... for those of you who can see it coming, I have a 4 in 9 chance of it working in the first 6 months. Less than 50/50. (My brain is slower but it still can get there). There are major surgery risks - I mean they're doing fricking BRAIN SURGERY on my most prized organ. (Well one of the most prized organs LOL).

I talked this over with my family doc. He had been in favor of the ECT - because he was out of ideas and wants relief for me. When I told him about it - he was like "Give me the psychiatrist's name and phone number and I'll call him and tell him you're the perfect candidate". Well, um, ok. As it turns out, my family doc has had 2 patients go through this surgery for the Parkinson's tremor reduction. (Same gizmos - they target a different place in the brain - I'll get technical somewhere else). Anyway, he had one patient whose insurance paid for the surgery and gizmo and one whose insurance didn't. He knows I haven't been working consistently for 3 years and although I had built up a war chest - the money is getting tighter and tighter - especially with the downturn in the economy. Bottom line - he was ecstatic and told me it was like someone was handing me $100,000 in help.

Well, honestly - if this were a guaranteed treatment and it cost $100,000 - I'd do it. I'd easily pay $100,000 to feel NORMAL again. (No, I'm not a millionaire by any stretch of the imagination - but I am comfortable and flexible enough that after I lost my job, I cut back budgetwise tremendously and have been able to do consulting and odd jobs in the meantime). Yup - I'd write that check.... but I don't have to.... I'm one of the lucky ones.... one of the first to get this treatment.... and as I pointed out to the GF, if I felt better, I could probably make that $100,000 back pretty quickly. I don't mind hard work - in fact used to enjoy it.

So there's the start. I am a patient in a DBS study. My surgery is scheduled for December. I want to diary what's going on and what happens. I want to mainly for me - but also for anyone else suffering from depression - like Kara did for me - to remind us to not give up hope - there is always something else to try. And being a guinea pig? Well, that's ok too. I'll take my 4/9 chance for six months and my 2/3 chance after 6 months to feel better.


Anonymous said...

I am patient 002. 001 dropped out.

Anonymous said...

I was the first in the southwestern US-it's been 6-months so far-amazing results, truly a miracle. I wish you the best. Choosing DBS is like choosing life over death....

Anonymous said...

So, PsyFi...

We can assume you are "turned on?" Are you in the ANS double-blind study?

Anonymous said...

Yes, I am....I believe that's the only way to currently have it performed in the US, as for depression, it is only approved in investigational trials

Anonymous said...

After I re-read your questions, yes it is the ANS study....

Anonymous said...

Nope. Currently, the ANS trial is a double-blind placebo for the first six months. I am curious if you were in a previous trial (which excluded placebo) or just one of the lucky 2/3 subjects who got turned on.

I believe Medtronics had a previous trial where there was no placebo, out of Cleveland, Florida and Texas. (Not sure about Texas).

And by the by, thank you for taking the time, effort, and risk, PsyFi, to answer my inquiries.

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