NOTE and UPDATE: this gave me an astonishing result for about a week the first time and then for about 48 hours the second time–total and complete remission of ALL symptoms. So that is a rather seductive thing. In retrospect when it wore off I was WORSE off then before. I’ve compared it to the movie Awakenings because it was so devastating to lose the feeling of well-being. The doctors doing this do not do any meaningful follow-up whatsoever and so do not report such things to new patients coming to them. Some people clearly do well and have lasting recovery, but I did not and in fact was left more vulnerable than prior to the procedure for some time. I have over the course of time seen improvement with broad-based foundational strengthening modalities. For me those have been dietary, yoga, meditation and gentle exercise etc. In any case I would not at this point recommend this procedure, though I am sure it’s helpful to some people as I said above. So are psych drugs. I don’t generally them either. I support peoples right to choose them if the circumstances of their lives make them the best choice. That remains the case for all things as far as I’m concerned. This procedure too.
Today is my two-year anniversary of having completed the withdrawal from 6 psychiatric drugs in 6 years. It also happens to be my 47th birthday. It feels like the last 8 years have just disappeared on me. It’s rather surreal.
I wish I could say I’d recovered from the iatrogenesis and protracted withdrawal syndrome, but I have not. I’m still very ill. I continue to learn how to Live Well While Being Sick. I have no other choice. Illness and isolation both can be teachers. Dark phases of our lives are often the richest source of insight. I still would like it to be done with. Yes.
I don’t want to reflect so much on my 2-year anniversary today as I’m still recovering from the disappointment of the last week. I’ve been sick for a very long time (far longer than the amount of time I’ve been free of psych drugs) and sometimes it’s best not to dwell on it too much.
I had hoped that perhaps today I’d be sharing good news. Last week, I went out-of-state for a special medical procedure being looked at for PTSD that might reduce my symptoms. It didn’t work out quite like I had hoped. Still, I’m sharing what I did because I think that for some people, especially people with PTSD who are not suffering also from gross drug withdrawal damage, the procedure I had might help a lot.
I will be sharing emails and other communications I had about this procedure to communicate about this in this post today.
In part what is wrong with us who have protracted withdrawal syndromes is autonomic dysfunction. Very systemic and broad dysfunction that is chemically induced by the drugs. PTSD, the more typical sort, that is incurred by warfare, trauma etc, is also a sort of autonomic dysfunction, conditioned by experiences.
Withdrawal syndrome seems to go beyond this, but part of it essentially affects the same part of the brain and is marked by hyper-vigilance and heart palpitations etc. I’ve not been able to live with my husband for over 2 years now because I can’t deal with unexpected noises in the house. They throw me into an increased panic–the hyper-vigilance pretty much never stops. He lives downstairs and I live upstairs. It’s pretty damn severe.
Those of us with psychiatric drug withdrawal syndromes are a bit different in that we have it by chemical insult and the people with PTSD described below have it from more easily understood trauma, but I’ve consulted with doctors who understand both withdrawal and PTSD and they are convinced it’s the same part of the brain that has gone haywire. And in fact withdrawal can be very traumatic so I think it’s safe to assume that it is in part classic PTSD as well.
The procedure involves an injection of a temporary anesthetic at the stellate ganglion on the right side of the neck. This is a kind of nerve junction in the sympathetic nervous system involved in the fight-flight response. The injection, called a stellate ganglion block, has been used for decades treating chronic pain conditions such as complex regional pain syndrome.
After the procedure I was free from the hyper-vigilance etc for 4 days. Most people with PTSD need the procedure twice and usually don’t lose the effect of the first one for several months and some people don’t need a second injection at all. The people treated have apparently so far not needed it more than two times.
I unfortunately relapsed almost completely after about four days with some wobbling too and fro for a while. Probably because of the stress of the travel. I’m very sick and a week of travel wrecked me. It was devastating to relapse after 4 days of NO hyper-vigilance. I actually started imagining having a life again. It was like the movie Awakenings, life was snatched back from me after being given a taste of what it was like to again experience it without hyper-vigilance. Yes, devastated is not a strong enough word.
Of note…the injection is a TEMPORARY anesthetic…similar to what is used for numbing your mouth when you’re at the dentist…
It’s like a reboot…it takes your sympathetic nervous system offline temporarily and when it comes back on you feel better…and NOTHING has been changed in your body…the drug wears off and that is that. You get to feel better if it works out and apparently it’s worked very well for many people but it’s still experimental in how it’s used for PTSD. It’s been used for decades for pain and is proven to be relatively safe. The doctor in Chicago, had never seen in 25 years of doing hundreds of these any serious adverse reactions during the procedure, though the literature does speak of some possibilities. There are some short-lived minor side-effects right after the procedure, but there are no reported lingering side effects other than having a better, less painful life. There is a sense of being anesthetized for about 24 hours. I was very sleepy and groggy, but that may have been simply my bodies natural exhaustion from having only 1 to 3 hours of sleep a night for years and the accompanying lack of hyper-vigilance that had kept me alert prior.
My sleep, also greatly improved for a few days. Wow. What a change to sleep.
So below is an email my husband put together to share this info with me and my doctor. I had actually looked at this months ago but dismissed it. Paul looked into it further as I don’t have the capacity for much research these days.
Naturally, I am skeptical about any kind of treatment that claims to work immediately, but I think this is worth looking into. Whether you would be a suitable candidate for this treatment I don’t know.
It involves getting a “stellate ganglion block” which is an injection of a local anesthetic into a ganglion, which is a nodule of nerve tissue in the neck. The procedure has been used for decades treating a variety of nerve pains (including complex regional pain syndrome — that’s something your doctor has compared some of your symptoms with), but its use for treating PTSD was only discovered about 3 years ago. There have been no large-scale studies of its effectiveness.
This is a brief NBC report (superficial, needless to say, and including melodramatic noisy footage) — the one thing worth noting is the guy at the end who has suffered PTSD since being in Vietnam and can now sleep properly.
Those people with PTSD who have been treated successfully have mostly only needed one injection. It essentially blocks the hair-trigger on the fight-flight response. The doctor who came up with the treatment hypothesizes that prolonged activation of the fight-flight response causes a proliferation in nerve branching in the brain and that the block allows these branches to atrophy bringing back normal, less sensitive, fight-flight response. (That’s a very simplified description of his theory.)
The procedure can be done by any anesthesiologist who works in pain management who would be willing to consult with the doctor in Chicago.
The procedure takes about 10 minutes, involves a preliminary local anesthetic using a small needle and then a larger needle delivers about 4cc of local anesthetic to the ganglion. A dye is also injected prior to the anesthetic so that through imaging it can be seen that the needle is in the right position. Some people have sedation to help them relax — I realize you couldn’t do that but you seem to have relatively low anxiety at the sight of needles. (**note: I do not tolerate most medications including sedatives of all kinds as noted here)
This is a graphical presentation of the procedure.
Here’s a very brief introductory article: Local Anesthetic May Relieve PTSD Symptoms.
And a slightly longer one: Obama Loves This Freaky PTSD Treatment; the Pentagon, Not So Much.
This is a PTSD forum where a number of people share their experience, expectations and observations about the treatment. I didn’t read the whole thing, but there is one individual “AJ” worth following as he considers, eventually decides, and then receives the treatment. He only posts a few times afterwards, but they are all positive. There are some who get the treatment and it doesn’t help.
One of the few other doctors who has done research on this is Captain Anita Hickey, Director of the Pain Research and Integrative Pain Medicine, Department of Anesthesiology at the Naval Medical Center San Diego.
This is the article that showed up in my inbox yesterday afternoon that triggered all this research: PTSD injection can work miracles, but DOD won’t fund it
Lastly I’ll share a testimony of a woman who got the block and shares her success at Amazon where a book about the procedure is listed: Exit Strategy for Post Traumatic Stress Disorder: New Hope for Warfighters and Civilians Alike
Nine months ago, I was a recipient of the SGB Block described in this book – March 24 2011. I am currently 47 years old and as a lifelong sufferer of PTSD due to childhood and adult abuses and trauma, I had all but resigned myself to a life of more and more pills and wavering anxieties and depression. I had an extremely high startle reflex and could have blinding anxiety attacks during any assortment of PTSD “trigger” events. I felt helpless. A year ago and after 25 years of literally every other therapy out there, I heard of this revolutionary treatment and sought info on the Web, mostly through Dr. Lipov’s site and his articles.
I received this nerve block for the purposes of my PTSD from a local pain and spine specialist who was open-minded enough to read the articles I brought him and perform the SGB “off label”. Most pain or spine specialists perform SGB blocks for upper body pains frequently. The SGB has been used since the the 1920’s and is about as safe as a tooth filling. I had the simple 10-minute injection procedure to my neck late in the day, and attributed lightheartedness that evening to the twilight anesthesia. However, when I woke the next morning, the entire world had changed and continues to be marvelously tranquil ever since. It took a couple of weeks to adjust to such calmness; where the world had been going by at 100 mph, now it goes by at a manageable 25mph. Due to the stopping of my overused and “locked up” adrenaline producing parts of my brain, I was suddenly able to digest and process all information without becoming overwhelmed and overtaken by heart-racing adrenaline and the confused and panic-laden emotional states that accompany this aspect of PTSD. Now I take no more meds. I have been in a wonderful new state of emotional stability for almost 9 months now. I sincerely believe that this injection literally reset my “flight or fight” mechanism to pre-trauma levels and it has given me a whole new life. Additionally, all the powerful and vivid memories related to my trauma have now “faded to grey”….in the way normal memories should. I no longer have trigger events and can participate in life events freely where before I was gravely restricted by fear of triggers and panic attacks.
Not sure if this is clear from the above. Most people do need it two times. No one has needed it more than two times. Some people only need it once.
So that is what I did for care when I traveled out-of-state. I cannot do the trip again in my condition. I guess if I get stronger in other ways I may reconsider it in the future. I may also look to do it closer to home, but I imagine finding someone who generally uses the block for pain management to do it for PTSD may take some time. Also I’m not sure exactly why it failed (after briefly working) for me. Was it the extreme exhaustion and stress of the travel on top of my already ravaged body, or is there something significantly different about my condition from those with just PTSD that needs to be considered? Withdrawal syndrome clearly has other things going on, does this mean the stellate ganglion block may be contraindicated? Alas, I’m always wishing studies were being done on our condition, but they are not. For now I’m sharing for those who might be able to do what it takes and because I think the block is possibly a revolutionary treatment that may help a lot of people.
Lastly, I have not yet had my 2 or 3 week follow-up with the doctor who performed the procedure. At that point I will learn more about his opinion about what happened for me. I do know from researching the procedure that at least one mentioned PTSD patient had a good and robust response, like mine, and then relapsed within the first week. It’s not unheard of. That person got the second injection and it’s assumed he did well after that. This story has not yet ended.
More posts I wrote about the PTSD-like phenomena I experience as a result of drug withdrawal and iatrogenesis. This shows that the understanding I have has been an evolving experience: