TNS (post #2)
Well, here I go again. Diving head first into a "promising new depression treatment." How many times have I read that?
Somehow I've made it into a second clinical trial for TNS depression treatment. I was told I was fortunate to qualify at this time because this study is "open labeled" meaning no placebo—everyone knows this is the real deal. The next trial will be "double-blind" where not even the doctors will know who has the real treatment and who has the placebo.
Two appointments so far. First one with the facilitator who interviewed me extensively and had me fill out all the necessary paperwork. I then met the two doctors who are spearheading this research. One a neurologist, the other a psychiatrist. I won't mention names out of sheer common sense. Extremely nice folks. Thorough, attentive, personable and even caring. I was given a neurological exam which went well. They seemed genuinely excited about this study.
Two weeks later the second appointment lasted much longer. I agreed to undergo a brain scan. The purpose of this scan is to literally see what the electrical current is doing in the brain and specifically where it's going by examining the brain's blood flow. I was scanned with and without the device. They used a "tracer" to observe where the current was going. This tracer was radioactive water administered through an IV. I'll repeat that. Radioactive water. I was injected with it not once but six times, one for each scan. Of course I was assured it was an extremely low and safe level of radiation that dissipates very quickly. It didn't bother me at all. As a matter of fact I was hoping a dose of radiation to my unforgiving brain would possibly jar it to a happier state.
The scanner was similar in appearance to an MRI machine. A narrow tube with an adjacent table the patient lies on then slowly moves head first into the chamber. My head was barely half way in. It was comfortable enough. The whole session lasted about two hours. At the conclusion of the test the clinician overseeing the process held a geiger counter near me. That was a first.
Following the test, it was hands-on time with the device. It was nothing more than a basic TENS unit powered by a 9-volt battery. For those unfamiliar, a TENS unit is a small contraption that sends out electrical impulses through wired electrodes that are adhered to the skin with a sticky gel. I used one years ago for my back pain but it didn't really help. I was slightly disappointed to see it was a garden variety product instead of some sleek new prototype never seen by the public. I learned this was precisely the intention of the doctors involved. To design and produce a modified TENS unit like device specifically for people who suffer from epilepsy, ADD, ADHD, depression, and a host of other possible health issues. Since this study is literally in its infancy, the TENS unit serves its purpose at this time.
It's simple to use. The electrodes are centered just above the eyebrows. The voltage settings are determined by my comfort. All I have to do is attach it to my head and sleep with it nightly. In addition to the introduction of the device, I was given an EKG with and without the device and a blood pressure check that lasted an hour, again, with and without. This is all for safety's sake. They will eventually present this study to the FDA but they must make sure it's safe and all testing for safety has been documented.
The first night was restless for me. Later in the day I got a dull headache but not sure if I can attribute it to the unit or not. I felt no difference but it takes weeks to experience results. The neurologist told me I was only one of three that had the brain scan. They will be looking for common denominators in each case so they can zero in on what part of the brain is making depressives so miserable.
He told me I was a pioneer. Thousands of doctors all over the world will be studying the data once released. I will remain anonymous of course but if this works for me, I'll be indirectly helping others for years to come if all goes as planned. I've been here before however. In uncharted waters trying not to get my hopes too high. I've become so jaded. I shared my skepticism with the doctors. They told me they wanted me to be skeptical. They don't want me to develop my own placebo. They need honest answers.
After spending most of the day there I collected all the items and paperwork, shook their hands and thanked them for spending so much time with me. I should have felt some inkling of hope but there was only numbness. As I stepped out of the building to get back to my vehicle, I saw the streets were jammed. It took nearly a half an hour just to travel 5 blocks to the freeway. It took a total of over 2 hours to make my way home in the dreaded southern California 5:00 rush hour traffic. Today I'm a pioneer –– yet also traffic.
TNS (post #1)
TRIGEMINAL NERVE STIMULATION
As I frequently do, I was scouring the Internet for anything new and promising on the horizon. I typed in the keywords "new depression treatment." Up came a select few articles about something called TNS. Not to be confused with TMS transcranial magnetic simulation (see April post "TMS") which I tried and found to be completely useless.
Several of the articles were the same exact story on different psychology or medical websites. It involved a clinical trial for a device that has been successful in treating epileptics. Turns out, along with a dramatic reduction in seizures, an unexpected positive side effect of this treatment was noted: mood elevation. Now a new branch of investigation has morphed from the initial epilepsy study.
My Internet research led me to UCLA's "Depression Research & Clinical Program." A whole department in a major, highly respected university devoted to the study of depression. Luckily I live about an hour's drive from there.
I found a link that read "Our Trigeminal Nerve Stimulation Project using electrical stimulation of a peripheral nerve in adults who are still having symptoms of depression despite using medication (age 18-65)"
As though it was written exclusively for me.
Clicking on the link revealed a flyer that asked:
• Feeling blue or depressed?
• Antidepressant medications not working?
• You’re between age 18 and 65?
yes, Yes, YES.
Sounded like it wasn't meant to be right out of the gate. Regardless, I left a message describing my situation and hoped for a call back thank you very much.
More time goes by with no word. Finally a call from my doctor who informs me she left a message on the very same voicemail but had not heard back. I decided to be the squeaky wheel and left another message basically restating what I had said on the first message. I went back to the website and found another phone number that appeared to be the main department number as opposed to this "direct line" to the study itself. I took a shot expecting another recording but amazingly I heard a live, female voice answer. I launched into my tired speech about my situation and how I hadn't had a response after two messages had been left. She told me that they had been so inundated with calls, they couldn't possibly get back to everyone. It was unprecedented for any study on depression they've conducted. They had never seen anything like this. Literally calls from all over the country were pouring in every day. This explained why the message specified only L.A. area calls. I told her where I live. She replied that was very close and took my name and number to deliver to someone important (I guess.)
Well, yet more time goes by and nothing. Then a call from my doctor. They called HER to get in touch with ME. I was shocked. She gave me a number to call. Yep, it was the very first number I called with the very same voicemail. Sigh. With nothing to lose I left a third message throwing in the fact that my doctor had contacted them as well.
More time goes by. Nothing. Then my cell rings displaying an unfamiliar number. It's the voice from the voicemail recording. He wants to prescreen me on the phone with lots of questions. After about 15-20 minutes he informed me that I had, in fact, pre-qualified and wants me to come in for a 6-hour appointment so I can be screened further to make sure I'm a good candidate. What I thought was a longshot, considering people from all over the country were enquiring, turned into a huge cut in line right to the front door. Didn't see this coming at all.
I am subject number 9.
At the risk of boring the reader even further, here's a brief explanation of this new depression treatment. In the face just beneath the skin are two large nerves that run parallel up behind the eyes and forehead and deep into the brain. The trigeminal nerves function both as the main nerves of sensation for the face and the motor nerves controlling the muscles for chewing. The trigeminal nerves emerge from (or enter) the skull, as opposed to the spinal nerves which come from the spinal column.
The device is the size of a large cell phone. Two wires from the stimulator are connected to electrodes attached to the forehead above each eyebrow by adhesive. The electrodes transmit an electrical current to the nerves. These nerves are like a freeway deep into the brain. Patients use the device for approximately eight hours every night while asleep. It's non invasive. Since it's a clinical trial it's free of charge with no frickin' insurance involvement. In contrast to antidepressants, no major side effects have been noted. Side effects suck so this is good. Maybe it's too good.
They've already had one clinical trial with 5 people. So far they have 4 more recruited for this second trial. 70-80 percent of the subjects in the first trial achieved remission, a highly significant result in a pilot study. At this writing I have about three weeks until the first appointment. I'm hopeful, but guarded. I cannot get my hopes too high. It's a potentially very hard fall. I'm now in wait-and-see mode.
Thoughts
I regret the past...endure the present...dread the future.
An endless roller coaster ride through a forest of thistles.
An inexplicable inability to experience joy.
Blessed and cursed.
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