By Louis Ogden, Guest Columnist

I have been troubled by severe and chronic intractable pain since childhood, beginning at age 6.  I am now 72 years old. My earliest memories of pain are of aching in my legs so bad I remember crying myself to sleep.  My parents took me to doctors who said the aches were “growing pains” that would go away as I got older. 

My pain gradually got worse as I grew older and expanded to be body-wide. The worst pain of all was in my neck and upper back, along with incredibly severe head pain. It felt as if my skull was being crushed in every direction. I first remember having the head pain at age 12, but doctors had no answers for my parents and me. 

I finally got a diagnosis of fibromyalgia from a family doctor in 1990 at age 40. I can still remember his exact words when I asked him if there was anything he could give me for the pain.   

"Yes I could, but I won't because it would require opioids and you would be a junkie within two weeks,” the doctor said.  

I carried on with my life, usually with a tin of Excedrin in my pocket that I took to get me through each day. I did have many symptoms of fibromyalgia and it was good to finally have a diagnosis, but it didn’t seem to explain the crushing head pain.  

The pain grew so bad in my 40’s that I could no longer stand to do the demanding physical work required of an electrician and was forced to retire early. 

I was couch-bound most of the time and went on a 13-year search to find a solution to this painful existence. 

I saw many physicians and tried many treatments and medications, including opioids. Unfortunately, none of the therapies or medications eased my pain to tolerable levels. 

Finding Relief With High Doses

In 2010, I sought out more aggressive pain care using high-dose opioid therapy as a last resort.  Dr. Forest Tennant of California took over my care. I think it was at my third appointment with Dr. Tennant when he told my wife Kristen and I that I probably would not have a very long life. I was 60 when he told us that bad news, but I am now 72 and still kicking thanks to his treatment protocol.   

After a thorough review of my medical records, a physical evaluation and various assessments, Dr. Tennant prescribed OxyContin, as well as oxycodone and morphine for breakthrough pain. He titrated me up to where I was comfortable and enjoying the highest quality of life I’d ever had as an adult.  The daily dose I was taking was close to 3,000 morphine milligram equivalent (MME), which is considered quite high. 

For 8 years, I continued on that same regimen. I did not need, nor did I ask for a higher dose, as I was doing great on the daily dose as stabilized.  

Dr. Tennant eventually diagnosed me with Arachnoiditis and Ehlers-Danlos Syndrome (EDS). These rare, but very painful syndromes account for my body-wide, complex, constant and severe pain, including the crushing head pain. I believe I inherited EDS from my mother, her mother, and the maternal line of descent going back at least 6 generations. The exact causes of my need for such high doses of opioids may never be proven, but probably include anomalies of absorption, metabolism and receptor damage due to EDS.  

Once titrated up to an effective dose, I was a very happy, well-adjusted person with a good quality of life, no longer couch-bound in agony and once again able to participate in social activities and perform household chores. My medicine enables this, and I have no sensation of pleasure or “high” of any kind. In fact, people that I meet have no idea that I am on a very high dose of opioids. I do not slur my words, nor am I disoriented. 

The DEA Gets Involved  

After Dr. Tennant was forced into retirement by the DEA in 2018 over unsubstantiated allegations of drug trafficking, I moved on to another doctor in California who kept lowering my dose. It left me not feeling well enough to stay active and enjoy my life, so I moved on to become a patient of Dr. David Bockoff, who assured me at my first appointment that he would do his best to help my pain.  He increased my dose to a level that allowed me to be much more comfortable.   

As PNN has reported, the DEA last month suspended Dr. Bockoff’s registration to prescribe opioids and other controlled drugs, which soon led to the death of one of his patients. Danny Elliott was so distraught over losing his pain medication that he committed suicide, along with his wife Gretchen. The Elliotts were friends of ours and confidants, as we have dealt for years with many of the same problems finding appropriate pain care.  

I am also now facing a life with no pain control and the very serious complications of withdrawal and untreated constant, severe pain.  This situation is very frightening to me, as my blood pressure may spike and I could possibly die of heart failure, an aneurysm or a stroke when/if I run out of medicine.   

The families of several of Dr. Bockoff’s patients, including my wife and I, have pooled our resources and retained the services of an experienced, well-qualified attorney who views our case as a violation of our civil rights. To the best of our knowledge, this is the first time that abandoned pain patients have fought back in such a manner.  If we prove our case with the DEA, the suspension order that prevents Dr. Bockoff from prescribing our medications could be lifted and we will get our good doctor back.   

If we do not win at this stage, we will take our case to the next legal step. In the meantime, some 240 patients of Dr. Bockoff are left with no help and no access to life-saving medications.   

It is my understanding that a few more pain management physicians are considering leaving their practices in the near future. As a result, thousands of additional pain patients may soon lose their lifelines to the medications they so desperately need to function. The DEA has a lot of blood on its hands, with possibly more to come. 

Louis Ogden and his wife Kristen live in Virginia. Dr. Tennant and the Tennant Foundation give financial support to Pain News Network and sponsor PNN’s Patient Resources section.  

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it. Send your stories to editor@painnewsnetwork.org