My nervous system has been harmed by a benzodiazepine type of medication that’s commonly prescribed for sleep, anxiety, and blood pressure. I took it exactly as prescribed, but one night I had a horrific reaction to it that began years of extreme disability in my life. Instead of improving my sleep, literally overnight my sleep became horribly worsened, electrical shock sensations pulsed through my body, and I agonized for rest that would not come. I found I wasn’t alone and class action legal efforts by many others harmed are under way. In a recent documentary, the magnitude of the harm being caused from this class of medication is being compared to the Thalidomide scandal in the 1960s (where babies whose mothers were prescribed Thalidomide were born without arms and legs).
I’m proud of all the work and progress I’ve made in healing my body, and I’m determined to get my life back, but every night I am still greatly pained from the lack of rest, and every day I struggle to do -- or cannot do -- basic things: rest without distress, drive, read one paragraph, listen to music, sit up at a gathering with friends. The ongoing lack of rest has made treating my Lyme condition extremely difficult. Medications and herbal supplements do not help me sleep (and my doctors have tried everything) since this reaction began, however, some body-mind type of treatments have helped some, and I’m not giving up.
Recently, a type of doctor-prescribed medical massage called Tui Na and some similar types have helped me very much to get relief with the very painful feelings caused by the lack of rest, and they've also helped me to sleep a bit better too. My doctor would like me to see if these massages can help me more, and help me sleep better over time, but on my disability income (which does not even cover basics) I am out of funds to do so. I feel very positive about this treatment and would be very grateful for your assistance to help me continue this. My hope is to recover my sleep and to return to a more productive, meaningful life. Please share my story to help me reach my treatment goal, and also so that others might hear my story and be able to avoid this same suffering from this commonly prescribed type of medication.
If you want to know more details and how to avoid this same harm, continue reading below + see the links at the end of my story on how to get more help and info for yourself or a loved one...
I was prescribed Ativan, a sleeping tablet in the benzodiazepine class of medications. Other benzodiazpines include Klonopin, Ambien, Lunesta, Xanax, Valium, and Restoril to name just a few. The Ativan worked for a while, but over time it stopped working well and I had more side effects. I started to taper down off of it under my doctor's care, and literally overnight my sleep became horribly disturbed, many times worse than it ever was before. I also had scary sensations of electrical shocks in my body, my vision was very dark, and even quiet sounds were excruciating. The experience was very traumatizing and more so because we didn't know what had happened or when it would stop. Without restful sleep I became very weak and for years my world shrunk to mostly just caregivers and making it through the hours and days, highly distressed. On top of this, fighting Lyme became much more difficult and complicated without proper rest.
I was eventually diagnosed by a knowing doctor with “Iatrogenic (doctor or medication-caused) Neurological Impairment.” This is not a story about medication abuse. But the illness is actually a horrific withdrawal from a benzodiazepine that can last years. In fact, most psychiatric medications (and some other types of meds) have the potential to cause a disabling withdrawal syndrome that can last months or years. Benzodiazepines are the worst because of the severity and length of time the harm can last.
Patient groups are working to educate doctors who frequently misdiagnose these withdrawal syndrome as a “natural worsening” of a patient’s physical or mental condition, when actually, for many people it is the medication/s causing the deterioration. With benzodiazepines, perhaps up to 25% of those prescribed these meds may suffer devastatingly painful sysmptoms and disability for at least 1.5 years, and some people for much longer. People often get put on more meds, and diagnosed with additional things -- when in fact the problem for some people is actually rooted in the neurological damage done by the medications themselves.
Educational and legal efforts against benzodiazepine medications are under way by patients harmed, as these medications are commonly given for more than the recommended two to four weeks, causing lasting harm to many people's nervous system. Also, tapering off the medications is not properly overseen by the medical community, and the risks of these meds have been known for years. But, these legal efforts will likely take us a very long time.
Most people eventually recover substantially within a few years once off of benzodiazepines, but some of us continue in a Post-Acute-Syndrome for years with varying recoveries. (Please note: A cold-turkey or fast taper off of any psychiatric medications is the worst thing you can do.)
I definitely believe I can keep healing or that my nervous system can be “rewired” so that I can sleep restfully again and rebuild my health.
The $3,200 request would be for: (Approximately) two evening massages at home before bed per week, and two to three 20-minute daytime massages at a location a few miles from me, plus uber transportation (5% of the budget). Within the $3200 budget, I am also requesting help with urgent dental work totaling $480, and a necessary auto repair (my caregiver drives me in my car) totaling $170. (Update: the dental and car needs have now been covered.)
Although I am weary and exhausted, in many ways I feel more alive and determined than ever to reclaim my life. I’m very proud of all the work I have done to get this far and I hope you will feel inspired to help me reach toward the next level. Also, please share my fundraiser to help me reach my goal, and also to possibly help someone affected by these medications. There is a lot of information about these medications below. Thank you so much!
Benzo links for more information and safe withdrawal procedures:
Top ten FAQ about benzodiazepine neurological illness
Awareness: Did this happen to you?
As Prescribed trailer for documentary out next year
BenzoBuddies - an excellent online withdrawal and tapering support group
Check out BenzoBuddies to learn all about benzodiazepines, how to withdraw safely if you choose to. Most doctors have very little understanding how slowly you must taper to avoid long term harm. Check out the Heather Ashton Manual, get educated, find help there.
The newly formed Benzodiazepine Information Coalition’s mission is to provide information about benzodiazepines, particularly the drug's potential to cause long-term disability and its dangerous side effects. They are working to spread awareness about these potential dangers to the public and the medical community.
Benzodiazepine Facebook group for education and legal action.
World Benzodiazepine Awareness Day, first ever. July 11, 2016
Dr. Ben Goldacre on publication bias in clinical trials