10 posts in the category “PTSD”

PTSD Nightmares: Why they’re happening and what you can do

Posted January 5th, 2018 by

More than 1,600 members of the PTSD community on have reported experiencing severe nightmares, and there are dozens of forum threads tagged with topic. So, we took a deeper dive into PTSD nightmares and some of the research-backed approaches you can try to help manage them.

PTSD nightmares

How common are nightmares after trauma?

The quick answer: Very common.

  • According to one study, 71% to 96% of people with PTSD experience nightmares. And the number is even higher for those also living with another mental health condition like panic disorder.
  • At least 50% of people with PTSD suffer from nightmares that incorporate elements or contain exact replications of a traumatic event (these are called replicative nightmares).
  • An additional 20-25% experience post-traumatic nightmares that don’t exactly replay the trauma memory, but are symbolically related to the traumatic event.

Why do PTSD nightmares happen?

Scientists have been studying dreams for years, but they still don’t fully understand how or why we dream.

Matthew Walker, a psychology researcher at the University of California, Berkeley, has one theory. Walker found that during rapid eye movement (REM) sleep, the chemistry of the brain actually changes. Levels of norepinephrine — a kind of adrenaline — drop out completely. REM sleep is the only time of day when this happens. In people not living with PTSD, REM sleep is kind of like therapy; it’s an adrenaline-free environment where the brain can process its memories while stripping away the emotional edges.

Walker’s theory suggests that in people with PTSD, REM sleep is broken. The adrenaline doesn’t go away like it’s supposed to. The brain can’t process tough memories, so it just cycles through them, again and again. This theory is being put to the test: The VA is currently running several clinical trials on prazosin, a drug that lowers sensitivity to adrenaline. Check out this page to see if there’s a trial in your area.

Treatments for PTSD nightmares

  • Imagery rehearsal therapy (IRT) – This approach helps people change how their nightmare ends by reimagining it while they are awake. The idea is that by changing the storyline of the dream to something not scary, your nightmare becomes less upsetting and occurs less often.
  • Prazosin – Mentioned above, prazosin is currently in clinical trials to evaluate its effectiveness for treating PTSD nightmares. In the few trials that have been conducted, results have been positive. In one 15- week study involving 67 active duty soldiers with PTSD, prazosin was found to improve trauma-related nightmares and sleep quality and reduce PTSD symptoms. See what PatientsLikeMe members have said about taking prazosin for nightmares.

Here are 5 common treatments members of the PatientsLikeMe PTSD community have tried in order to manage insomnia :

Interested in finding out more about what other people living with PTSD are trying in order to manage their condition? Join PatientsLikeMe and become part of a community of others like you.

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted January 3rd, 2018 by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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