Sunday, February 7, 2010

In March of 2008, shingles took over my life. I didn't know that at the time, but the last two years have spun out a mystery that is far from solved.

My central nervous system was already showing signs of trauma when pelvic pain syndrome and bipolar disorder became painful constants for me. A researcher at a major university hospital told me that there is evidence that people with chronic neuropathic pain have spinal cord lesions related to chickenpox. About half of patients with pelvic pain syndrome have also had shingles, regardless of age.

Prior to my shingles outbreak, I suffered repeated bouts of near-debilitating pain in the very spot where the shingles eventually erupted. Two doctors told me that it is likely I was experiencing bouts of subclinical shingles in the form of zoster sine herpete, or shingles without the rash.

Recently, study results were made public indicating that zoster recurrence is far more common than anyone ever knew. Recurrence, even in a subclinical form, is much more likely for patients who have extended pain--post-herpetic neuralgia. That would be me. There was anecdotal evidence of this floating around in previous research, but the published study is discouraging. then again, it was funded by Merck, the company that makes the shingles vaccine, so they could just be setting the stage for increased marketing of that vaccine.

Nov. 2, 2009 (Philadelphia) -- People with shingles are more likely to suffer a recurrence than previously thought, especially if their attack is accompanied by lasting pain, researchers report.

"The risk of getting shingles again, once you already have it, is about one in three," says Barbara Yawn, MD, director of research at Olmsted Medical Center in Rochester, Minn. "That's about the same chance of getting shingles once in your lifetime."

People who suffer pain for 60 or more days after their shingles attack are nearly five times more likely to suffer a recurrence, Moore says.

The research was presented at the annual meeting of the Infectious Diseases Society of America (IDSA).

Shingles can result in persistent pain lasting for months and even years after the rash has gone away.

"But unless someone has a compromised immune system, we didn't think they would actually have a recurrent attack," Moore says. Moore and colleagues studied the medical records of nearly 1,700 people with a confirmed shingles attack from 1996 to2001. Only 8% had compromised immune systems, she says. But 95 of them suffered 105recurrences by the end of 2007.

"Clearly most recurrent attacks are occurring in people with healthy immune systems," she says.

Recurrences were:

  • 2.8 times more likely in people with shingles-associated pain for 30 or more days during the initial episode
  • 4.8 times more likely in people with shingles-associated pain for 60 or more days during the initial episode
  • 60% more likely in women than men
  • 40% more likely in people who were 50 or older when they had their initial attack
"Still, most recurrences occurred in people with none of these risk factors," Moore says.

IDSA spokesman Aaron Glatt, MD, of the New Island Hospital in Bethpage, N.Y., tells WebMD that he was "surprised" at the high rate of recurrence.

"We knew you could get another episode, but we didn't know the risk was so great," he says.
Despite my 77 medical appointments in 2009, I continue to backslide with my chronic pain. Neuropathic pain is brutally difficult to treat, and the relentless nature of it is hurting me physically and emotionally.

Having tried antidepressants, anti-convulsants, pain medications, anti-inflammatories, and plenty of vitamins, we are down to two options for treatment as I mentioned earlier this week: Acyclovir, a herpes maintenance medication, and medical marijuana.

The logic is this: Acyclovir will suppress the supposed-subclinical shingles outbreaks, while medical marijuana will block pain receptors in the central nervous system. It will also act as a calming agent which is important because stress greatly exacerbates central nervous system pain.

Unfortunately, pot is contraindicated for patients with bipolar disorder. Having recently put some work into reducing or eliminating all medications that make me depressed, fat, and stupid, becoming a consumer of medical marijuana seems counter-productive.

I really want to feel better, but there must be another way. Let's hope that way makes itself known soon. I am barely hanging on.


Anonymous said...

try the pot!i am bipolar and smoke daily. quit for a few days mixed with high stress, and shingles came. havent had them in over 8 yrs until now... i quit smoking pot for a month with no stress and no shingles, so it is not like the pot is keeping them away itself, but i think it really helps... hope this helps a little. :)

Anonymous said...

I have had shingles for two months and am still trying (in agony) to run my horse farm.... the pain is right at the base of my spine. Riding and training the horses is impossible. I am DYING to try pot - I never have...

Anonymous said...

I received a shingles vaccine 9/19. By mid October I had serious SX, from ~C6 around the front to include my LEFT breast. Agh. , now those excruciating pains are resolving, now my whole left side down to above my pubic area are numb! Agh
premera 24hour nurse said I most likely had shingles, internal shingles. her mother in law spent 57 thousand dollars for specialists to decide that is what she had.

now, I still am numb. very troubling, and uncomfortable.

December 5,2013