In-person support groups for psychiatric medication tapering and recovery

The assistance, encouragement and camaraderie that I’ve had as a result of my participation in various online peer support groups while going through benzodiazepine withdrawal has been a lifeline for me. However, I’ve often wished that in-person versions of these groups existed. Tapering (and recovering from a taper) can be a very lonely business. Finally, I got tired of waiting for a group and decided to start one. And, it turns out, I’m not the only one. Listed below are in-person support groups for psychiatric medication tapering and recovery. I’ll add more to the list as I become aware of them.

Colorado

Durango
The Freedom From Psych Drugs support group meets every Sunday at Joe’s Coffee Shop from 3-5  p.m. in Durango, Colorado. Phone support is also available. Contact Jennifer at jenniferbryantco@gmail.com for details.

Florida

Port Saint Lucie
Have you stopped taking a benzodiazepine such as Xanax, Valium, Klonopin, etc. and you’re having a bad time? I am forming a local support group for this as there’s nothing available for us right now. You must either be off the drug or trying to get off, and be 18-years-old or older. This will be a “peer” support group only, not therapy, and will NOT use a 12 Step approach like AA or NA. Contact Annie at benzowallofpain@gmail.com

Massachusetts

Boston
Coming Off Psych Drugs mutual support group
http://www.meetup.com/Coming-off-psych-drugs-mutual-support-group/

Texas

Austin
This group is mine. It exists as an e-mail list. We’ve met several times at a local coffee shop and, most recently, at my home. Meetings aren’t on any set schedule, but tend to happen when enough people ask for one. We’ve been averaging quarterly since August 2012. Drop me a line at lifelieswaiting@gmail.com if you have any questions or to be added to the e-mail list. UPDATE 7/17/15: My old group has been replaced by a new group which meets weekly on Saturdays at 4 p.m. The location is Austin State Hospital, Building 635. The group is being run under the auspices of Communities for Recovery. Although CFR has lots of ties to the 12 Step community, this is not a 12 Step group, but rather a peer discussion group. This new group understands that most of its members don’t suffer from addiction, but rather dependence after taking benzodiazepines as prescribed. It also understands that some of us suffer from addiction as well. In other words, regardless of how you encountered the withdrawal syndrome, this group is for you. The group is also open to people suffering from other withdrawal syndromes such as those to Z-drugs (Ambien, Lunesta and others), antidepressants, antipsychotics, antiepileptics, etc. For more information, contact Michael at 505-301-7398, Charley at 512-736-6778 or Andrea at 760-525-0637.

Posted in Benzodiazepine Withdrawal Syndrome, Useful Information | 19 Comments

A daughter recounts her mother’s battle with benzodiazepines

brown-eyed-susan-flower-closeup-23441281369772mHdG

This was written by the daughter of a friend of mine. I have permission to share it here.

My mom is an addict. Or was an addict I should say. She wasn’t addicted to any street drugs, not heroin, not cocaine or meth. She took the drugs, not because she wanted an escape, but because she was prescribed them without knowing their addictive properties.

She became addicted to the medicine that the doctors continued to give her when her depression and anxiety didn’t go away. I have never seen so many pills. Prozac. Cymbalta. Xanax. Klonopin. Zoloft. Take three a day, take one in the morning and one at night to help her sleep, remember to take twice daily with food.

While taking these she wasn’t herself. She stopped telling me about her new favorite books because she didn’t read anymore. Weeds had invaded our garden and the brown eyed susans were wilted because she laid in bed instead of tending to the plants outside.

She realized this was happening to her and that her symptoms were not going away. So she decided to change. She wanted to be completely independent from any medication. She wanted to feel things. To be okay with being nervous or worried or sad and be able to handle whatever came her way on her own.

I supported her, I wanted her back, I wanted her to be happy. The doctors, however, did not. One therapist practically laughed when told that she no longer wanted to be medicated. “Oh they aren’t working for you?” They would say, “Well then you just need more!”

Since she had no professional help, it became a family job to help her off the drugs. As we found out, a person cannot simply stop taking the pills because there was a high risk of seizure, coma and death. My mom would have to go through withdrawal and detox. The process began.

We researched and learned all we could, bought books published in London, because it seemed as though not many American doctors wanted to admit the severe side effects of antidepressants and benzodiazepines, the class of drug she had been prescribed.

First step, rid her body of one pill at a time. Over weeks and weeks the doses became smaller. I got used to walking into the kitchen and watching my mom and dad lower the doses by hand. The tablets were cut into halves, thirds, quarters, fifths, eighths. The capsules were opened and the tiny beads of powder poured onto a plate, where all the beads were counted. Only swallowed 100 beads this week, try 90 in a few weeks, maybe 80 soon after that if she was feeling up to it. Every morning reopening a capsule and starting over, recounting the beads.

Each drop in dosage brought on horrible side effects. I watched my mom become someone I had never seen before. She lost over 60 pounds because she couldn’t eat, getting sick after or having no appetite at all. Every muscle in her body ached. She told me how it felt like electricity was constantly pulsing through her skin and zapping her. Strange mood swings, headaches, stomach aches, neck aches. I had never seen her like this before.

She couldn’t take care of all of us in her condition, it was too much work and my dad and I knew it. He worked nights and couldn’t always be there, I knew I had to step up. I learned how to make spaghetti and meatballs, I washed my sister Anna’s hair so that shampoo would never get in her eyes, helped my brother Jacob with his algebra homework, and tucked them in at night. The goal was for my mom to get better and I would do anything to help with that. Both my dad and I had to constantly remind them, because they were young and scared, that she would get better, even though at times it didn’t seem like she could.

The past year and a half at my house has varied from being happy to hellish, depending on the day. We could see our mom smiling one day, but the next she would be found laying in the dark in her bed trying to somehow cope with the pain and sickness. But no one ever gave up. We were all going to get through this together.

At times I felt like I had become as sick of her sickness as she had. I would have much rather gone to a sleepover than stayed home to read “Little House on the Prairie” with Anna, or stay at my grandparents’ house when my dad couldn’t get work off and my mom was having days so bad she didn’t want us around to see her that way. But I realized I wasn’t the most important one there, I learned that those around me are my priorities. So we carried on.

I came home from school, checked on mom, checked on dad. Asked Jake how he did on his graphing or matrices test, reminded Anna to clean up her toys. I told my dad to drive safe to work and that I’d see him the next day. Then made dinner, told the kids to do their homework and did mine, and went to bed after Jake and Anna were asleep.

The past couple months have been different though. My mom has been slowly coming back. Her appearance is different, but I can see her. Under the grayed hair, the tired, slightly wrinkled eyes, and wearing clothes four sizes smaller than before, she is smiling. She is now medicine free. She is cooking vegetable stir fry and baking brownies, she is braiding Anna’s hair, and she is helping Jake study. Outside the brown eyed susans are blooming.

Posted in Benzodiazepine Withdrawal Syndrome | 6 Comments

‘Time Away’ by Brent Adair

Click here to listen.

There’s a lot in these lyrics that someone making this particular journey can relate to. “Think I need some kinda change in my life” and “I had the less so now I’m all for the more” are just two of the lines that really grab me. Give it a listen. Maybe it’ll grab you too.

Lately I been feeling kinda strange
Maybe a little bit deranged
Think I need some kinda change in my life
I’m gonna pack my little car
Pick me out some distant star
Follow it as far as I can see
By the sugar and coffee
It’s time to ease the monotony

Ahhhh, everybody needs some time away
Ahhhh, everybody needs some time away

Burned my eye on the sun
Grabbed a bite and bit my tongue
Did my deed, but it just all came undone
So meet me at the corner store
Flip the light and shut the door
I had the less so now I’m all about for the more
I see no reason
The more I’m inclined to believe

Ahhhh, everybody needs some time away
Ahhhh, everybody needs some time away

Lately I been feeling kinda strange
Maybe a little bit deranged
Think I need some kinda change in my life
I’m gonna pack my little car
Pick me out some distant star
Follow it as far as I can see
By the sugar and coffee
It’s time to ease the monotony

Ahhhh, everybody needs some time away
Ahhhh, everybody needs some time away
Ahhhh, everybody needs some time away
Ahhhh, everybody needs some time away
Some time away
Some time away
Some time away

Posted in Benzodiazepine Withdrawal Syndrome, Songs That Speak To Me | Leave a comment

One year off update

9/12/11—In my eleven months off update, I said this …

“I anticipate a better twelfth month and promise a very comprehensive progress report; one that compares my symptoms now to where they were a year ago.”

On August 24 (my one year off anniversary), I couldn’t bring myself to write my one year off update. Months ten and eleven were bad. Month twelve was worse. Severe tension headaches forced me to withdraw from my fall semester college class.

I know that some people with similar histories to mine, but who aren’t as far along in their benzo journeys, read my blog for some idea of what they might expect. I so very much wanted to be able to give them some good news, but benzo healing has a mind of its own. What I offer up is this instead. In particular, item #4 …

It is very typical to have setbacks at different points of time (these times can vary). These setbacks can be so intense that people feel their healing hasn’t happened at all; they feel they have been taken right back to the beginning. Setbacks, if they occur, are a normal part of recovery.”

This is not news to me. I’ve parroted these words to friends as they’ve encountered setbacks. However, I find the words much more difficult to accept now that it’s me. Anyway, here’s where I was on August 24. I’ll do the comprehensive comparison update once I’m past this wave.

These are my symptoms, listed in order of severity (most to least), each rated with a number 0-10 (0 = nonexistent, 10 = unbearable) …

Muscle tension headaches—8 (at eleven months off was a 6)
This symptom has been very bad; so bad that I finally broke down and went to the doctor for it … even though I know what’s causing it and know that there’s not much to be done for it except practice patience. She prescribed Imitrex and gave me some samples of Fioricet. Neither worked. Probably just as well, since Fioricet contains barbiturates.

Muscle symptoms & resulting pain—7 (at eleven months off was a 6)
I believe the increase in this symptom is contributing to my severe muscle tension headaches. I’m considering trying massage.

Insomnia—5 (at eleven months off was a 4)
Pain is affecting how much sleep I get and also my sleep schedule. Lately I’ve not been falling asleep until 2 a.m. and sometimes not waking up until 11 a.m. or noon. This is very unlike me.

Dizziness, light-headedness & poor balance—4.5 (at eleven months off was a 3.5)
This symptom has ramped up some.

Internal pressure—3.5 (at nine months off was a 3.5)
No change.

Tinnitus—2 (at nine months off was a 2)
No change.

Posted in Benzodiazepine Withdrawal Syndrome | 9 Comments

Report at eleven months out

8/8/11—For those of you who are following my blog for some hint of what to expect when you get to this point yourselves, I should warn you that my eleventh month off of Klonopin pretty much sucked. However, as I pointed out to Duncan when he commented on my last blog entry, my history is very complicated. It includes all of the following: long-term high-dose usage, a cold turkey, a seizure, an improperly-done first taper, protracted withdrawal, a reinstatement and a pre-existing chronic pain condition. Most of you don’t have that sort of baggage as part of your benzo history. And, even if you do, no two people experience precisely the same path to healing.

My eleven months off anniversary was on July 24th, so about two weeks ago. Once again, the college class I was taking interfered with prompt publishing of my update. I also think the class (an intense class taken over the short summer semester) was at least partly (if not entirely) to blame for what a craptastic tenth and eleventh month I experienced. However, it’s worth noting that I was physically well enough to attempt it to begin with. I guess it was just too much, too soon.

I anticipate a better twelfth month and promise a very comprehensive progress report; one that compares my symptoms now to where they were a year ago. But, I’m getting ahead of myself. Here’s where I was two weeks ago ..

These are my symptoms, listed in order of severity (most to least), each rated with a number 0-10 (0 = nonexistent, 10 = unbearable) …

Muscle symptoms & resulting pain—6 (at nine months off was a 5.5)
I think all of the hours spent hunched over a textbook and/or studying really took their toll on the weakest part of my body. This symptom was rather bad this month.

Muscle tension headaches—6 (at ten months off was a 5)
The increased muscle spasticity in my neck, shoulders and back fueled “headaches from hell” this month. Thank goodness for ice packs and Excedrin. Thank goodness the class is over. I’m already seeing less pain in the handful of days it’s been since the class ended.

Yes, I’m planning on taking another class during the fall semester, but it will be an easier one spread out over a much longer time period. It should be doable. And I think it’s important not to sit at home giving in to this thing any more than I absolutely must.

Insomnia—4 (at nine months off was a 4)
No change.

Internal pressure—3.5 (at nine months off was a 3.5)
No change.

Dizziness, light-headedness & poor balance—3.5 (at nine months off was a 3.5)
No change.

Tinnitus—2 (at nine months off was a 2)
No change. This is a minor symptom that I never notice except when I evaluate it for my updates.

Posted in Benzodiazepine Withdrawal Syndrome, Progress Reports | Leave a comment

Report at ten months out

7/3/11—Tomorrow is Independence Day here in the United States. Last Fourth of July, I was nearing the end of my benzodiazepine taper. I wanted to go see some fireworks, just to let Klonopin know “it wasn’t the boss of me.” But, unfortunately, it was. I had every intention of going to see fireworks tomorrow to celebrate both U.S. independence and my independence from Klonopin, but the local fireworks have been canceled due to drought. Still, I bet the explosion-happy locals will set off enough of them to at least scare the kitties. (I hope they don’t start any fires.) I’ll watch those.

My ten months off anniversary was on June 24th, a little over a week ago. As I’d been really late with the nine months off update and really busy with studying for the college class I’m taking, I postponed this update. I also postponed it because I’ve been in a bit of wave for a couple of weeks and didn’t want to report symptoms based on that if it was going to go away relatively quickly. No such luck. So here it is …

These are my symptoms, listed in order of severity (most to least), each rated with a number 0-10 (0 = nonexistent, 10 = unbearable) …

Muscle symptoms & resulting pain—5.5 (at nine months off was a 5.5)
Something really odd happened with this particular symptom. I’ve had a hideous knot in my upper left trapezius going all the way back to at least the fall of 2006 and maybe longer. Some time between the evening of June 11 and the morning of June 12, I woke in the middle of the night (not a particularly noteworthy occurrence these days). I rolled over onto my side and felt a stabbing pain in my back, rather like if you’ve ever thrown your back out except located precisely where that hideous knot is. The pain was so terrible that I could neither get up nor roll onto my back. After a bit, I maneuvered myself gently out of bed and got an ice pack to lay on. This allowed me to go back to sleep. When I woke up in the morning, my upper left trap was very sore, but I no longer felt crippled. In fact, it felt like that knot had finally let go.

All of that day, I relished the sensation and wondered if I had hit some kind of turning point in my healing. I looked forward to being able to write this update and report dramatic improvement in this area. Unfortunately, it didn’t last and, gradually, the muscle went right back to being the bane of my existence. So, no progress to report, but I still find it very encouraging that something different occurred.

Muscle tension headaches—5 (at nine months off was a 4)
When I said that I’ve been in a bit of wave for a couple of weeks, it was this symptom specifically that I was referring to. The headaches have been near constant and don’t really respond to the things that usually work on them (self massage, heat, Excedrin and rest). It’s quite discouraging really because when your head hurts, it affects everything about the way you think from how well you process information to your ability to be positive. I’m not sure what’s behind this symptom revving up on me. The college class I’m taking is rather intense, but it could just be the vagaries of benzo healing.

Insomnia—4 (at nine months off was a 4)
No change.

Internal pressure—3.5 (at nine months off was a 3.5)
No change.

Dizziness, light-headedness & poor balance—3.5 (at nine months off was a 3.5)
No change.

Tinnitus—2 (at nine months off was a 2)
No change. This is a minor symptom that I never notice except when I evaluate it for my updates.

Posted in Benzodiazepine Withdrawal Syndrome, Progress Reports | 2 Comments

Report at nine months out

6/15/11—As of May 24 (my nine months off anniversary), I’ve been taking an introductory anatomy and physiology class at the local community college. As you might imagine, this would be challenging for any forty-something-year old who hasn’t been a regular college student since the early ’80s, but it’s even more so for me still coping with the benzodiazepine withdrawal syndrome. The class has been both a wonderful distraction and the source of much anxiety. My first exam and lab practical are this week, however I’m taking a break from studying to finally post the numbers I recorded on the 24th. The class is the reason this update is late and the likely reason why the next two will be as well. My apologies.

These are my symptoms, listed in order of severity (most to least), each rated with a number 0-10 (0 = nonexistent, 10 = unbearable) …

Muscle symptoms & resulting pain—5.5 (at eight months off was a 6)
Last time I said that this symptom feels like it’s “unraveling.” What I mean by that is that I’m beginning to sense it in pieces rather than as a whole … like it’s starting to break up. The affected areas are still that “tight band around the head” that so many of us know and hate, my neck (the location of my pre-existing pain), my shoulders and upper back.

Muscle tension headaches—4 (at eight months off was a 4.5)
Last time I reported a slight increase in this symptom. Now it’s back to where it was two months ago.

Insomnia—4 (at eight months off was a 4.5)
I continue to remain grateful that this symptom isn’t the beast that it was during my first taper and recovery period.

Internal pressure—3.5 (at eight months off was a 3.5)
No change on the internal pressure, but I’ve dropped “heaviness” from this category.

Dizziness, light-headedness & poor balance—3.5 (at eight months off was a 3.5)
No change.

Tinnitus—2 (at eight months off was a 2)
I never notice this one any more except when I’m specifically looking for it. It’s a real non-issue.

Posted in Benzodiazepine Withdrawal Syndrome, Progress Reports | Leave a comment