Before I start with the Do's, I am going to start with the Don'ts.
-Don't keep telling your friend/family member to go to detox and get this over with already. It's too late for that. It also means you have not done your homework and read up on this madness. For some, detox does work but it's a risky way to get off of a benzo. I have met several people who went to detox for benzos and said "it wasn't that bad". God. How I wish I was one of the lucky ones. However for sensitive nervous systems it often does not and creates much more harm then good. Having said that, I reinstated after an accidental cold turkey and fast taper and I regret it. Reinstatements sometimes work, however in my case it seems it's made me 10000 times worse. If someone had calmed me down in cold turkey or fast taper or given me gabapentin, I might be healed today. Maybe not.
-Don't send your loved one emails or texts saying "Be positive", or send them articles on negativity or positivity. I know your intentions are good, but at least in my opinion it's harmful. It's like going to a therapist and they tell you to smile when you were really sad and going through a breakup or a personal loss. I know taking contrary action helps but first MEET THE PERSON WHERE THEY ARE AT. However dark (and it doesn't get darker then this) meet them there. Maybe you don't know this kind of darkness, have never felt it or touched it, then step away. Tell them it scares you. Tell them you can't handle it. Tell them the truth and let them tell you the TRUTH in that moment. The loss here extends so deep--it's not just financial, relational, emotional it is also a loss of physical health and wellbeing in every way shape or form. And a loss of everything they held dear to themselves for so long. I would give it all away to have my health and wellbeing tomorrow, and my children's health and wellbeing. It's cliche but true.
-It is SIMPLY IMPOSSIBLE to be positive on a day with full blown akathisia and terror.
Let's just say there is NO WAY I could have imagined the body capable of creating so much pain and terror. This isn't a ohhh, just take deep breaths and it will be ok terror.
Remember, for most with a sensitized CNS there is NO OFF SWITCH. It feels like a sympathetic glutamate storm. At least that is what it feels to me. It is the most terrifying concentration camp in your mind and body. It is fucking your worst LSD trip coupled with extreme physical pain day in and day out. Can you smile your way through that shit?? I think not. Maybe the dalai lama can. Maybe few individuals can. I couldn't speak the pain was so great. That isn't regular day in day out pain you get in your foot, or your back. No. That's not it here guys. Please listen up.
My akathisia got so bad it felt honestly like I was having some sort of seizure. The energy rose so high, so painful with head pressure I was sure I might die in my sleep. Everytime I went to sleep in that state I felt I took a chance--live or die? I turned it over to god.
-Don't berate or tell them they are complaining too much or obsessing. When you are in copious amounts of pain-- and I am talking curled up in a fetal position gripping for you life but not wanting to take any pharmaceuticals there is nowhere to hide.
If you are on your deathbed, they dope you up to be comfortable.
Most ppl here know that if they are too comfortable they will have three or four other year long tapers to endure. And many times it won't make things much better.
-Don't tell them it could be worse and to buck up and get on with life. In ACUTE WITHDRAWAL THIS IS IMPOSSIBLE. When you continually invite them out to dinner, or to play a game of golf, or go to a yoga class they simply feel misunderstood and more ALONE. This isn't about being in one's head. It's just not. For those who could turn it around or do yoga, they simply didn't have a horrific withdrawal. I have a very strong friend who is in a recliner most of the day, each day. This is NOT HER CHOICE. She is completely disabled as many of us are.
-We may not look sick but what we are feeling inside is indescribable. Ask us about it. (I will save this for Do's). Some of us DO look sick and it scares people close to us. Arrange for a hairdresser to come to the house, or a massage person, or do their nails for them (Ok, will save this for Do's)
-Yes, we are obsessed with the benzo community because there is the only place many people feel understood and comforted. (However I agree it's not good to spend too much time there) Don't mock our benzo friends. Don't tell us not to talk to them or that it brings us down etc etc. Listen. Ask. Be curious.
-Don't berate, criticize, expect the person to act like they used to. Imagine invasion of the body snatchers. That's what has happened to most of us. We just aren't home hopefully temporarily.
-Don't scare us and tell us there is something else going on other than withdrawal or how this person or that person you know just got off in a couple of weeks. That person DOES NOT REPRESENT THE MAJORITY OF PEOPLE. It is a LIE Big Pharma has sold us and doctors ( Why is it that one of my own doctors admitted that he has been on benzos for 40 years because he simply could not get off---and this guy trusted the asshole doctor that put him on HIGH DOSES for depression and anxiety). The truth is, many of the patients in doctor's offices stay poly drugged. Especially on benzos. They are often not able to stop the benzos and they simply don't even try to. This includes ambien and Z drugs as well.
-Don't recommend the head of so and so hospital. Do you understand that they are clueless?? in denial? They are sadly not able to help most of the time. I don't mean this in a paranoid way. Just the fact that they are NOT INFORMED. And more damage and stress is caused when you are not believed that what you are going through is REAL. John's Hopkins, Mayo, all of those 'reputable' places are doing MORE HARM than they are helping people. I just read a blog of someone who went into a 2200 per night psych hospital on 10mg of valium and ended up walking out on 4mg of klonopin (80 mg of valium). What is happening is a cover-up plain and simple. It's a tragedy and the tragedy is the lack of acknowledgement, misinformation and mismanagement of patients and their withdrawal.
-Don't recommend a 'safe place' to go--believe me, there are SO many of us in this that are desiring that place. Where we are believed, where healing is happening ever so slowly but noone is told to just get on with it and attend classes when we may not even be able to stand long enough to take a shower. There is no such safe place for people sensitive to these class of medications. There just isn't. There needs to be, that is for sure but currently it doesn't exist as far as I know (hey, if someone knows of a secret place please fill me in on it)
-Don't suggest that all of the people on BB are crazy and to stay away from them and facebook groups. I have experienced completely the opposite. These are 'normal' hardworking, strong people, most with no histories of mental illness or disability or malingering. We all want to be healthy and strong and back at work. I have met wonderful strong but scared people through the internet.
-Don't suggest to your partner,lover, friend to hide this from others. Tell others the truth. Speak out against this. That way others will not be harmed in the same way. If I had heard this story from someone else I would never have touched an ativan. Ugh REGRETS. I worked in the field and honestly NEVER thought this could happen from non-daily usage. I didn't understand how this class of drugs works on the brain and it was never taught to me sadly.
-Don't suggest going to groups and yoga and meditation classes when many of us are cognitively impaired and can barely sit still let alone be in a large group of people. I used to LOVE classes. LOVE them. I loved yoga more than anything. I loved learning. I was the workshop and networking queen. I barely want to leave my house. Why? Because I don't feel well enough to do much and my CNS feels so fried any stimulation good or bad, happy or sad, exciting or depressing, feels like too much. I used to love movies, restaurants, shopping etc etc. It's not so possible at the moment. Going to these places makes me feel worse actually because I am keenly aware of all that I have lost and how hard it is to be out in the world.
-Please watch videos, You Tubes, educate your self on what your loved one is going through. I know it's hard to watch other people's suffering but it is IMPORTANT. Those that got off benzos easily never posted online or spent time in forums. It's not about staying in an illness community, it is about understanding on a deep level what your friend or partner is going through. And you do this through your OWN RESEARCH. If your friend was dying of cancer, would you just trust the doctor or would you do some research of your own on your friend's behalf. It would mean a lot to schedule sessions with Baylissa or Jennifer Leigh. To read Baylissa's website and especially Jennifer Leigh's early writing when she was cold turkeyed.
Read about your friend or partner's most worrisome sx--is it depression? akathisia? Terror?
Are there any holistic remedies or holistic doctors that can help? Find out. Do some digging. Your friend in pain is consumed with research mostly because they are desperate to get well and noone is doing research on their behalf. It saddens me that I hear husbands and wives and sisters and brothers not doing research on their behalf. I mean real digging. Not just calling detoxes. Because if you did the research you would find that detox can be a dangerous place for a sensitive nervous system. This is TRUE.
-Check out the resources page here. There are links that you may find helpful. Maybe not.
-Pick up the phone and talk to your friend, lover, partner. PICK UP THE PHONE. Check in. Say I am thinking of you. I love you. I am here for you. You will heal and we will find a way. I am right by your side. Rub their head, their feet. Physical touch is SO important. Most of us isolate in this condition. We start going inward because noone wants to hear what we have to say when we open our mouths. It's burns everyone involved out in a deep deep way.
-DO NOT expect your partner, lover, husband or wife, sister to continue with "business as usual" Shopping, cleaning, fetching the kids on and on. On days when one feels well, believe me they will push to do this. I went grocery shopping in full blown akathisia. I almost wanted to die. I was being burned alive inside. If you could for 10 minutes feel what many of us feel in withdrawal you would drop to your fucking knees. I promise you. Just imagine witnessing your entire family being shot, and that feeling of shock and terror is there day in and day out. No breaks. No sleep. No rest. You can't just "relax" in a warm place, or sit and read a magazine. Capiche? There is NO REST for many of us. No place will feel right because our body isn't right. At least I am speaking for myself. I don't think everyone is the same.
-Again---remember DOCTORS RARELY HAVE ANSWERS FOR YOUR LOVED ONE sadly. That is why we are a community of people helping one another. Doctors do not believe this exists. Why? Because some don't believe their patients and they have been sold lies by the drug companies. Also because the majority of people-or maybe half ( I don't know the statistics) do not have a problems tapering off these medications.
Geraldine Burns told me about a doctor who was on xanax and couldn't believe that it was the pills--he killed himself because he didn't hang on longer.
They want to believe what is on the packet --2-4 weeks and withdrawal is over. This is exactly what a very nice ER doc told me last year. I mean?!!! Unless you are feeling your life is in danger medically or psychologically then 100 percent go and get yourself checked out!! Educated the practitioners willing to listen. It's amazing that many of us just stay indoors and do this DIY. Or others just never get off the drugs to begin with...
I like the doctor I am working with currently. I do. But will I do exactly as he says? HELL NO. That is what landed me here to begin with. I might end up in a hospital because when I was in acute several mos ago my heart felt so unstable as did my akathisia. I also do feel for me there are underlying medical issues complicating my situation. I hope I am wrong and want to be proven wrong.
-Don't say "It's just withdrawal". Yes, it is but it's so much more and it's life altering, and life threatening. It rarely goes away in two to four weeks at least not for those who are sensitive. There are some that are better in an instant. A friend of mine in recovery said he had never heard of this before, yet I sound very much like many others that I read about. It is one of the greatest tragedies happening now and responsible for most if not all of the deaths of the famous people we love daily and yearly as well as so many beautiful souls put on these drugs at age 15 or whatever only to have their lives altered and ravaged.
I was never put on this drug for anxiety. I was given this medication for a medical condition. My on/off usage was never ever cautioned. EVER. I rarely used AT ALL and I am in this strange predicament. Huh? Another friend is damaged with dystonic reactions and akathisia. She never used daily. This is iatrogenic injury. I realize I was in protracted withdrawal BEFORE I took the ativan 3 times per week (after the steroid/antibiotic and benzo). Something in my CNS was damaged BEFORE. Noone was listening to me. Had they listened they wouldn't have told me the sensations and akathisia I was feeling was in my head. It wasn't. Had someone listened, I would not have jumped back on chemicals. I would have taken time off to heal. Period.
I know this is insanely challenging for caregivers and family members.
Please know I know that. We are self absorbed and self obsessed in this process because we are living in survival every single second of every day. I know it's easy to say if you were in these shoes you would handle this differently. Maybe that's true and more power to you.
IF they say they can't go to the grocery store believe them. If they say they can't get out of bed believe them. If they say they are suicidal or talk about death all day long, believe them. If they say they can't go to yoga or meditate because they can't sit still long enough believe them.
If they say they can't pick up the kids, or go to a party or the movies or out to dinner... believe them
Get support yourself if you are the caregiver. This is so hard to watch and so unbelievable. I know this is extraordinarily hard. Hard to stomach the financial pain, the loss of your partner as you once knew them, the person you do fun things with and laugh with. This is temporary. (so they say, I am in it right now so I can't say that with full confidence to be honest).
Take breaks, talk to others, set up a support group, get massages and healings yourself.... but remember you are one lucky bastard you aren't in w/d and I'd trade places with you any day of the damn week.
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.