By Robert (Guest Writer) –
Dear Dr ______,
I owe you a short note. I’m about to call a spade, a spade.
I’ve been left in an anxiety dither for these months since I saw you in October. That’s why I haven’t followed up with anything. I was VA-stunned by deja vu when you asked what my bottle of Tylenol #3 was for, then gave the VA spiel the same as I’d gotten during 2 years of VA “treatment” 5 years earlier — actively dismissive — “for headaches,” and demonstrably not happy I take a thirty-count script in 3 months, 90 days. I actually misspoke; the past two years or more I’d averaged six months. Except for April-June of 2018, tough period, when I used the 30-script in 90 days.
Please, none of this matters to you. I know that. You didn’t ask a single question about any of it; how bad is it, or how much it affects my life. It’s pretty bad, 24/7, doctor, pretty bad, and it’s 100%. It’s affected my life 100% since 1986. Isn’t the thought sad? Yet you make small of it. There’s no way I could survive without medication. And just the thought puts my life into a dither. It’s 100%, doctor. It’s why I said I didn’t know, when your intro question was if I’m “coming back” to the VA. I needed my answer first. Now that I know? Not if you’re willing to hurt me — I’m a lot stronger than the first time I came for the VA’s help.
As my appointment was coming to an end, realizing I’d just been dismissed again, given nothing for the pain again, feeling left with nowhere else to go, again, something hit me out of the blue. “It’s my lifeline,” I said. You looked up with a jerk of your head and looked straight at me without speaking. I looked straight back at you and know you got the message. And when we said our goodbyes, you said, “See you in 6 months,” and I got the message.
You know, of all the doctors, nurses, aides, the neurologist, the psychologist and the psychiatrists I saw there, I always felt each of you was working for the VA first, not as my health advocate. Therapy and psych drugs, but not a mention of the relief I needed and requested. Or if it were mentioned, dismissively and/or demeaningly. I found it astounding that no doctor ever put my pain first.
Both times I went to the VA, headaches were, first, “the reason.” You all answer to your orders and not your oath. Not one of you, no one there, ever showed a human side. Not one of you ever said, I can see what pain you’re going through but you won’t find any relief here because we’re a “no-narcotics organization” under direct orders to not give you your Tylenol #3 for past digressions — ours. Had I ever heard that, I would’ve thanked the person and gone elsewhere.
My life will end sooner than later, I know that, but that’s okay. You have harmed me tremendously. You’ve made my life so much more difficult. I think this letter, and my “story” below is much too good not to be published, or posted online in a headache or veterans or VA forum, or sent to Senator Warren. I am a disabled vet who has constant debilitating “headaches” that go hand in hand with my other ptsd symptoms. Whenever anyone says, “Thank you for your service” now, seems I feel less and less, because I think of the VA, who left me for dead, twice. Sorry, kid, I’ve been maltreated by all of you VA doctors who have ducked your calling. No, I won’t be back. I found a doctor.
To My Future Advocate,
I need to tell you a story; it will be long.
On just another spring workday in 1986, around 4:30, I got a headache. It was stressful, the IRS, but this was a first. Thing is, I’m not a headache person. Don’t think I ever had one, except getting sick as a kid, when 2 aspirin worked their miracle. But in my life I never took aspirin or Advil or Aleve. Strange, another day of earphones and angry taxpayers, and I have a headache. I asked a girl for an aspirin.
The Excedrins didn’t help, didn’t touch it. Right off, this late-day thing was every day, then earlier/lasting longer, and in just weeks it engulfed my life, waking at night holding my head, arising with it, losing sleep, energy, appetite, weight. I call it “the circle”—if you don’t break it, it will eat you. You have to know it to describe it. I lost 30lbs, from 165. After it’d forced me from my job of 20 years, age 37 and hoping to return, I met with my supervisor and Branch Chief at the JFK Building to prove myself. I’d known the BC to smile and say hi in passing. When I entered, they were sitting as to start the inquiry; she saw me and shook her head, “that’s not him.” It took another two years, but my disability was granted for PTSD and “stress headaches.”
I haven’t been “me” since spring of 1986. I was just a friendly nice guy and this came and then I was…on any payphone on the open street, searching. “You’ve gotta help, I have to get back to work.” Employee Assistance, Brighton Veterans Outreach, Mass Rehab, Brighton Mental Health. I think in July I walked into Beth Israel’s Emergency entrance and met resident Dr. Susan Abkowitz (she submitted my IRS disability). I caught her picture in our local paper, her having joined a nearby hospital 25 or so years ago, and my mind spoke, “She saved my life;” she was my first relief, so many years ago — one Tylenol #3, me lying on that gurney — and it worked! Warned of rebound headaches and addiction, we both agreed that I was not the person who’d screw that up. And. I. Have. Not.
Working after eight months (my memory, concentration, learning ability, organizational and social skills no longer worked), cleaning bathrooms and emptying trash 20 hours a week at a Boston firm, then full-time for 2 years, age 40. The Dr. Abkowitz and MSW Dan Musholt residencies ended. And all 3 hospital-referred, Dr. David Schroeder and wife Dr. Margaret Shelley (Brighton) continued Tylenol #3. Psychologist Dr. Ira Rudolph saw me for 16 years of behavioral therapy (I liked & worked diligently with all); I left him in 2003, saying, “I have to get rid of these headaches.” He replied, “I don’t think you ever will; you have a complex syndrome that plays off itself.”
During these years I “used” a #30/30-day supply in 90 days. In 1989 I made life changes. I moved from Boston. I bought a 3-family in Haverhill with my folks and became a mover with my pickup truck and no-brain-anymore. But it was difficult convincing a new doctor, and it was a particularly hard time, throughout the 90’s into the 2000s with no meds other than fioricet, that didn’t work. A nameless doctor at Pentucket Medical thought I was weak because that’s when I’d go to him, and refused anything else; fioricet only fogged my head. I was caretaker to my folks beginning in 1992. My father was sick for 10 years before his death in 2002, my mother’s health worsening for the 10 years till hers in 2013.
My headache can be episodic—I’m uncomfortable in public, in stores, with strangers, with a phone call. Or writing this—PTSD anxious and PTSD overwhelmed, and increasingly monstrous PTSD headaches, the same symptoms that keep me housebound now. I don’t “get a headache.” I’ve left on a Saturday morning to hit a few stores—HD, Walmart, a fruit stand nearby, then get to the first one, and in HD’s parking lot I am such a mess I go home.
Or periodic—no throb, straight-out naked pain that’s just there, wavering less or more through the day. Tomorrow is different, but the same. A 7 to a 5 and in seconds to a 2 for a while, and right back to horrible. Others don’t understand the spontaneity and why I carried a pill in my watch pocket. Sitting with my mother at the nursing home in 2012-13 could bring it over the top and nearly daily did. A tiny bite might help, or two. And this can go on for 3 weeks or 6 months. In 2001 someone asked how long they last, and I said I’m on my 1998 headache…the waking at 2:30 at night and beginning “to think,” the getting up at 3 or 4:00am and waiting for dawn to start my day with this already awful, awful headache. An hour’s nap if possible was my way to fight it, break the circle.
I just turned 70. I don’t go out at night, ever. Haven’t for years. Go to a movie? NO. The crowd, noise, graphics, camera-play, overwhelming. I close my eyes or puke. Out to dinner, bowling, see a baseball game, a play? Go for a ride, a walk? Wanna have fun? Wanna make the tenderest, sweetest love the world has seen?
I never applied for VA disability in ’86 cause I was and am a patriot. “Double-dipping,” I said, and couldn’t do it, just like I couldn’t go for help ten years earlier because my government said “only the weak get PTSD.” So I lived on my $887-a-month (plus COL) until age 64 and applied for disability. In 2011 I’d turned to them in total exhaustion from caring for my mother alone. She had depression and dementia and all the things that can hit from age 80-90. I needed them, first, to “believe me about the headaches.” Number 2, I’d reached exhaustion 4 years earlier, but had to keep going. At the VA I couldn’t start any sentence without breaking down; finally, 3rd, I’d put off Vietnam and needed help. I told everyone the same thing, 1, 2, 3. You have to believe me — I have all this proof. It’s destroyed my life!
They gave me therapy, but not Vietnam, and nothing for headaches, and nowhere, really, to give me reprieve, and still in therapy, in July 2012 I saw a specialist at NE Neurological who “treated headaches.” He didn’t query me like a lawyer—we talked headaches! He believed me! I’d had a CAT scan at Beth Israel in ’86, umpteen neurologists from Lawrence General to Lahey through the 90’s and 2000’s and too damned many psychs, doctors, and now and especially, the VA downplaying my pain. VA doctors acted like I was an anomaly, and that my need for Tylenol #3 for a “headache” was absurd, as well as how many I used.
Some things Dr. Finkelman (now retired) said, having had a long period of headaches himself, he’d become addicted to fioricet. “You know what’s wrong with doctors? They don’t have a headache,” he said. Later as I told him how Tylenol #3 just takes that peak away, he offered, “I can give you something stronger,” but I told him nothing takes it away, and what I do works. He had an anecdote of a young guy in his 20’s who’d had headaches for two years, who’d asked how long they’d last. “How long you planning on living,’ I told him.” It was a good comeback I guess; I wouldn’t have asked after 25+ years of this; but the answer that I’d long ago figured out still felt like a dagger.
The following months I fell into a depression from family stress, nursing home stress; and realizing the struggle for relief might be over, but the pain hadn’t changed. Nothing had. I called the Bedford VA mental health in October and got coaxed into 78G, suicide lockup, “feeling suicidal but not inclined.” They gave me Tylenol #3 in my 5-day lockup. They’d noticed my rubbing my neck, and suggested a combination of relaxant & topamax, which I’d taken 10 years earlier at Haverhill’s Arbour Counseling, with ill effect (the VA didn’t tell me what they were giving me). No one ever asked if I’d tried psych meds before (at Arbour Counselling, 2003-4, Deb Hulien; I’d tried them all).
I gave myself up and let the VA neurologist, whom I liked and respected, and psychiatrist, ditto, try what they wanted, and have gone through such side effects, some hideous and some deadly and not easily related here. Best forgotten. No VA doctor ever said, “Try this…I had this patient once…” I’d seen the VA neurologist for several visits and after months of mentioning my pain, he proudly said, “We’re a no-narcotics department;” it’s when I decided I’d pretty much given him enough time.
I’m not a bad person; I’m not doing something bad. When I turned to them again in October 2018, I didn’t walk in off the street in with an empty prescription bottle. It was the fifth month before my 6-month checkup with my PCP since 2006. He knows me as a faithful caretaker and serious human being (and became my mother’s PCP, as well). He gives me Tylenol #3 because he knows me. As a matter of fact, you may find in his notes from last June, my normal checkup, I wasn’t feeling anything poorly in particular, and after a chat he said, “Why are you in such a good mood?” I didn’t know why, but realizing I’d been more talkative and smiling, I beamed out, “I don’t have a headache!”
He’d not seen me without one in 12 years. Later that day I did get one, but that was priceless. In October I got a phone message that he’d closed his practice. Period. So I made an appointment in October with the VA, brought in my new (Oct 10) and unused prescription of Tylenol #3 that I’d gotten from the interim-covering doctor, with two pills left at home from my 30 from June, and had no need for more. I was treated with the same belittling skepticism about “headaches.” On Feb. 20, 2019 after 33 years, I found articles re: “daily headaches” & PTSD—the VA never gave a hint that the two were related. Or that they know the intensity. No, I had insignificant headaches, and I had PTSD. I finally decided then to find a new doctor. On 2/28/19 — 4-1/2 months from October 10th — I have 21 pills of the 32.
And this brings me to this, and you, a prospective advocate.
In 2012 I was given a 100% disability/combat related, with all of these issues. I’m pretty much housebound, not having much interest in the outside world, feeling like this. I’m a disabled veteran who takes propranolol (prescribed 15 years ago cause it might help headaches, he’d said) for HBP, Venlafaxine (150mg) for PTSD anxiety/depression and maybe headache relief, folic acid for vitamin B, low-dose aspirin, Tylenol #3 for PTSD headaches & vitamin D from not getting out. I’ve never been a drinker much, and do not drink. Never did more than pot when I was young, and have used it occasionally as an adult. CBD helps tremendous with mood and a feeling of well-being. I’m happy, in a 20-year relationship, with a house and a truck and five cats. I enjoy researching the web/reading the news, day-trading when applicable.
I’m a nice guy who has survived many years of not being himself, has adapted pretty well lately, and could have a tenable life with headache relief.
A USMC Vietnam Vet