Mental health client says ‘thanks’ to support group

Published 7:51 am Wednesday, September 22, 2010

Editor’s note: We typically require guest columnists and letter writers to identify themselves. Today, we make an exception. The author of this column suffers from mental illness. She shares candidly about her experiences with the National Alliance on Mental Illness in exchange for anonymity. NAMI a nonprofit support group of consumers, families and friends of those who suffer from mental illness. NAMI Western Tidewater offers local support programs.

I want to offer my heartfelt thanks for NAMI’s Consumer Fund helping to buy my medicine and my special work shoes. Both were a blessing beyond measure.

I want to let you know what’s been going on in my life these past months, mostly just because I want you to know me, and also to let you know how precarious my mental illness is. I cannot speak for others, but this is my story thus far this year.

My diagnosis is Bipolar I with psychotic features. I do have all of the symptoms of major manic-depression, and I do have, from time to time, psychosis.

I am disabled and receive Social Security Disability Income payments. However, my monthly check is not sufficient to live even modestly. My doctor says that if I did not have the stress of work, I would be less symptomatic, and it is possible that the illness could be stabilized for long periods of time.

But as I have no other source of income, I do work part time. As I have worked this year, I have had a lot of episodes of auditory hallucinations — hearing voices, mainly. This has happened from time to time in earlier years, but not as much as this past year.

I “hear” — and I really hear — one old man, one young man and a woman with a deep, gruff voice. I know that the voices are not real. I know that no one else can hear them. But they are really in my head as real voices.

Happily, I can say that with my therapist’s help and taking my prescribed meds, I have not been even slightly suicidal in almost two years.

Anyway, for about two years we treated the “voices” with Haldol (an antipsychotic). I know it’s an old med, but it really helped me.

About four months ago, I began to show signs of Tardive Dyskinisia — it’s a certain movement I do with my mouth. Tardive Dyskinisia are usually involuntary facial movements that quite often are permanent, even after the medicine is stopped.

As soon as my doc found out, he stopped the Haldol immediately.

I had been getting samples of Seroquel (a newer antipsychotic) from my doctor’s office, the only way I could afford it. My Medicare D plan lists the total cost of the drug as $340 a month, making my co-pay approximately $50.

Paying for this prescription would have put me in the doughnut hole very quickly, meaning that I would have had to pay full price for the Seroquel and all my other meds for the rest of this year. This is absurdly impossible.

Hearing voices and having racing, fragmented thoughts seem clearly to be directly tied to lack of sleep my therapist has figured out, and I concur. A friend of mine can tell you that insomnia has been my nemesis for as far back as I can remember.

Seroquel makes it possible for me to sleep.

Well, the pharmaceutical rep began supplying only samples of Seroquel “XR” (extended release), so I had to switch to the XR. It still helps with mood stabilization, but doesn’t help me sleep as did the regular Seroquel. So now I also keep one bottle of regular Seroquel to take at times when my illness becomes more acute — it helps me sleep and helps the voices go away.

But the main mood stabilizer that I took was Lamictal. I got the generic, lamotrigine, for which my co-pay was $7. In November my drug plan sent me notice that the generic co-pay was going up to $43. If I could not afford this, I should “talk to my doctor about other less costly alternatives.”

I took this to my doctor, a brilliant man and a very good psychiatrist. He read it, got quiet, leaned back in his chair, and in frustration said, “There are no good alternatives to Lamictal.”

He said we would try Tegretol. As we titrated down the Lamictal and slowly increased the Tegretol, my thoughts began racing, I didn’t sleep, and I had rapid, disjointed speech. And then of course, the cycle: no sleep — voices, and downward went the spiral.

We clearly were going to have to go back to Lamictal somehow, despite the cost.

I had recently added a few more work hours. I was hoping the increased money would help with things like oil changes, new shoes. I scrambled to get December’s and January’s $43 co-pays, but it was clear that I could not afford the Lamictal monthly.

After talking extensively with my therapist about the dilemma, I reluctantly decided I would use the money from the new work hours to pay for the Lamictal, even though it was a huge blow to my budget.

Then we had to titrate down the Tegretol and begin the Lamictal again. Since there is a very real risk of getting a life-threatening rash if the Lamictal is titrated up too fast, we had to get the “starter pack” and go therapeutically slow.

That’s where NAMI Western Tidewater came in. The Lamictal starter-pack was $80. My doctor gave me a $40 coupon.

Thanks to NAMI Western Tidewater, I purchased the starter pack last Friday and was able to increase the dosage as specified.

With my increased hours and the price of gas dropping, I will be able to pay the $43 monthly for the Lamictal.