How to support a loved one with benzo withdrawal syndrome

If I was suffering from cancer, or any other serious illness, it would be easier to understand I need help, and often a great deal of it, and for a long time. But benzo withdrawal syndrome is not understood by most doctors, and there is scant information to help loved ones help us. If you are supporting a loved one through this challenging time of healing, here are some words to help you.

Benzo withdrawal syndrome is a real medical crisis. People die from seizures, dehydration, cardiac complications or suicide. And the crisis isn’t over until withdrawal is over as people kills themselves many months into the cessation of their medication. (I have lost three benzo buddies to suicide in the past year.) Please take the suffering of your loved one seriously. Ingestion of benzos causes brain damage and that damage can take a very long time to heal.  Research says that the average healing is 6 to 18 months. But many people take 36-42 months. Some longer.

Healing from benzo withdrawal syndrome is unlike an other healing process. Healing is not linear, with symptoms slowly abating. New symptoms can occur at any time during the healing process. A person can feel better and be in a “window” only to be hit again with horrific new or old symptoms (a wave).  The erratic nature of healing from benzos causes its own anxiety issues. We feel better, have hope, only to be thrown back into the nightmare that is benzo withdrawal syndrome.

Support people need to have an  abundance of, compassion, patience and stamina to help a loved one through their healing process.

Doctors know very little about the syndrome, and often tell patients their underlying anxiety is resurfacing, or that the tapering or cessation of the drug has unmasked a new mental illness. Even people who were put on the drug for muscle spasms, pain, or vertigo, often suffer extreme anxiety and or panic attacks when they taper or get off. Some develop benzo withdrawal psychosis that resembles schizophrenia and need to be institutionalized until their brains heal.  (The sad fact is most people seeking help for extreme withdrawal symptoms will be medicated with either more benzos or other psych meds. Both are detrimental to the healing process.)

One of the most common withdrawal syndrome symptoms is fear (terror). Your loved one may become afraid of common objects, people or places. Or we may feel extreme fear for no reason.  Constant reassurance is important. We need to be reminded we will heal and we will not feel frightened forever.

We can have mood swings,  going from paranoid, anxious, enraged, hopeless, euphoric, terrorized, all within minutes or hours. It is exhausting for us and our care providers. Support providers will need stamina and compassion to walk beside us as we emote all over the map. These moods swings can look like bi-polar disorder, but they are part of the syndrome and usually disappear when the brain heals. Many doctors are uneducated about this and are eager to place people on yet more psych meds.

We can suffer from ongoing anxiety or depression that doesn’t resolve for months, and in some cases, years.

The body sensations of withdrawal can be very frightening. From tingles to crushing pain, burning sensations to twitches, shaking to repetitive movements,  our bodies betray us over and over every day. Symptoms are not constant and often rotate in and out in a short time. Sometimes they disappear, only to come roaring back with a vengeance.

We can suffer from extreme fatigue that makes any activity a challenge. We also suffer from a general lack of interest or motivation in activities. We are not lazy. Our brains are hard at work healing. Be patient with us please.

Some of us develop intrusive thoughts or obsessions that do not resolve until our brains are healed. These thoughts are frightening. We need reassurance they will go away. Cognitive Behavioral Therapy does not seem to help much in withdrawal as the thoughts are due to a damaged brain.

We need you to listen, often over and over and over and over again. Benz withdrawal syndrome is traumatizing. We are frightened of the process and we are frightened we will always be this sick.  We need you to listen to our fears. We need to know we are loved. We don’t need unasked for advice, we simply need to be heard. We also need you to take an initiative to help us stay engage in life on a level we can cope with.

In a nut shell, our lives become unrecognizable. We are frightened and depressed, and often in pain or discomfort day after day, month after month and sadly in some cases, year after year. The only cure for benzo withdrawal syndrome is time. We feel isolated and alone, misunderstood or disbelieved. We need our support people to remind us we are healing and that our lives will knit back together in a new, healed way.

We also need to be treated with respect. Most of us getting off of benzos  are not drug addicts in the normal sense of the word. We became chemically dependent due to a doctor’s prescription. We are sick because we trusted our doctors.

Please listen to, comfort, reassure, and encourage the person you are supporting through benzo withddrawal syndrome. Take care of your own needs and watch out for compassion fatigue. Take breaks when you need to and nurture yourself.

In benzo withdrawal syndrome, marriages fail, people lose their homes, business or jobs. Family and friends pull away or shame us for not “snapping out of it.” We need people to understand we are healing slowly from brain damage that is causing extreme symptoms in both mind and body.

Rarely do people have any idea the depths of hell I have survived and continue to survive as  I crawl out of benzo withdrawal syndrome. I have been told to stop talking about it, to snap out of it, and to just think happy thoughts and I would feel better. If only I could have done those things with a broken brain I would have. I am not at fault that I am sick and suffering as I heal, just as anyone suffering a serious illness is at fault for their disease.

Please educate yourself on this syndrome so you can better help your loved one. Here are links that may be helpful.

http://www.bcnc.org.uk/allison.html

http://www.drregpeart.org/reg_story.html

http://web.archive.org/web/20101213202428/http://benzowithdrawal.com/forum/index.php?topic=7.0

http://web.archive.org/web/20101214023234/http://benzowithdrawal.com/forum/index.php?topic=84.0

http://recovery-road.org/

http://www.benzo.org.uk/manual/

Please know that vitamin supplements, caffeine, sugar, msg and other food additives or medications can flare up symptoms. Alcohol must be avoided, as well as drugs that target the GABA receptors, such as Lyrica, Ambien, Lunesta, Phenobarbital,  and Neurontin or another benzo.  Quinolone antibiotics should be avoided as these can cause serious reactions.

As our lives start to come back together, our central nervous systems will be fragile for quite some time. Please understand that once our symptoms resolve we still need to take life easy and not over do things. Your patience with us is most appreciated.

It takes a long time for brains to heal from the damage caused by benzos. But they do heal. We need people to love us every step of the healing journey, for it is a lonely, frightening, and depressing time in our lives.  We need to know we still matter, that we are still loveable and loved.

17 thoughts on “How to support a loved one with benzo withdrawal syndrome

  1. I am so glad you posted this up Debs, it’s an eye opener and really knocks the nail on the head. I wll be with you on your long (or shorter) road to recovery, I have read and understand a little more now than I thought I did before…. x x x
    Bernie-Wernie

  2. Thank you for this accurate and amazing description. We’ve taken the liberty to translate the article for our Danish audience and with reference published it on BenzoStop.dk. We hope it’s okay.

    Sincerely,
    Alita & Peter
    BenzoStop.dk

  3. Thanks for writing this i am withdrawing from benzos and find my mood swings go crazy at least i can show this to my partner and children and maybe they will understand that its the benzos that are making me this way and am not a grumpy 56 year old woman .

  4. Thank you-Thank you-Thank you. Did you go into any kind of psychosis, paranoia, etc? My family member is in it right now and just wondering about how long we might expect it to last.

  5. Thank you Thank you Thank you. Did you ever experience psychosis, paranoia, hallucinations? If so, at what point and for how long?

    • I never had a true break with reality. (A friend of mine did after her CT from 75 mgs of Valium after 18 years on it) I had extreme paranoia. I had visual and auditory hallucinations that lasted about a month, right after my cold turkey. My intense, and I mean, INTENSE, fear started about 4 months out. I had had bouts of it right after the CT< but it came to roost every minute of every day, around 4 months. It was something I do not wish on any living human being. How I survived, I don't know. I really don't. I prayed for death many, many times each day. It was truly an awful thing to go through.
      I wish you all the best with your family member. It will take time, but the brain does right itself eventually. Suicide is a very real problem in withdrawal, so please keep an eye out for your loved one, and make sure they are safe.

      Best to you all on the journey. Sorry you have to go through it.

  6. I appreciate reading and better understanding what my loved one is going through. Though some times I feel under appreciated, I am always patient, understanding, and helpful towards his withdrawal. I show him compassion and love everyday, in fact, I always want him to know that I am there for him despite that sometimes I feel like I have to tip-toe on egg shells due to his unpredictable mentality. At times, I never know what mood he is in and fear that he might not love me but rather the idea that I’ve been by his side through this rough time when it seems like no one else would. It is an amazing feeling knowing that my love and support can help him while he undergoes the mental healing process, but it definitely takes a toll on my emotions and mentality as well.

    From a loving supporter to all of the unfortunate victims of benzo withdrawal: don’t forget who is there supporting you. Let them know you appreciate their love, support and understanding; I know they need it.

    God Bless to all of those on their way to recovery.

    • Rose
      its wonderful that your loved one has your support. Many of us get shunned by our friends and family because it is a grueling illness to recover from, and patience grows thin as the months and years wear on.

      Please know that MOST Of us in wd, DO appreciate the help. We may not be able to verbalize it at the time, as our minds are far too messed up. You may not get your thanks the way you believe you are “owed” until your loved one is more healed.

      I understand that you feel you have to walk on egg shells at times, but please try to put your feet in the shoes of your loved one. HE or SHE cant walk away from the illness. They are stuck in wd, 24/7, and it is exhausting. You, on the other hand, can take a breather from being a care taker.

      I understand it takes SO much out of everyone involved, but I assure you, the person suffering from wd is suffering the most. It does take a toll on caretakers, no doubt. That is why it is important to take good care of yourself.

      I recently had a neighbor stop by my house and tell me that the reason he stopped coming by was that I talked so much about my illness and he got tired of it. I was saddened to hear his reason, but I understood on some level that he was not capable of being compassionate at the level I needed. I realized that he is a neighbor, and NOT a friend. Because friends stick it out with you. Many of us have lost people that we thought were good friends because we were sick. And unfortunately, the sickness of having down regulated GABA receptors causes us to be VERY SELF FOCUSED. Every waking moment is consumed with how sick we feel, how frightened or depressed we are, because the INTENSITY of those feelings is unlike ANY level of anxiety or depression ANY of us have ever felt. It is such a cruel illness, to attack us on all fronts, mind, body and spirit.

      I THANK YOU On behalf of your loved one who may not be able to thank you right now. They may be doing all they can to simply survive. And I mean that literally.

      Take breaks, go get your battery recharged, and keep standing by your loved one.
      I know its hard. But I can assure you, your loved one is doing something even harder… trying to recover from damage done by a pill we trusted to help us. Not harm us. :(

  7. Thanks so much for this beautiful post. I’m a 3 month CT,I’ve been through hell. Reading this helped me get some distance and understand better what’s going on.My caregiver is amazing and I worry about him constantly .He stays next to me constantly and I realize it’s not healthy for him.Heaven knows, I don’t want to be with myself!

  8. I sob reading this. I was diagnosed with Generalized Anxiety Disorder 11 years ago… was put on klonopin. If someone, anyone, would have told me that this would be my life 11 years later, I would have NEVER started it. Doctors would either stop my med cold turkey or refuse to help me get off of it! I went into this journey trusting my Dr’s… I took my med believing it would fix me. One unsuccessful suicide and several attempts to get off the drug has brought me to this place. I gave myself a special gift for my birthday last year…. I agreed to allow myself to fail at being a good patient. I stopped seeing my Dr… broke my 90 pills into fourths and began the downward spiral through hell! After Thanksgiving last year, my meds ran out. To this date, I have not talkin anymore. I have just learned to cry again. I have flashes of memories I did’t know I had. I frighten myself when I laugh. At times, I can almost feel myself. I still suffer with withdraw symptoms on a daily basis. But, I’m alive. Today is not a good day, but tomorrow might be.For all of you who are searching for answers and reading this….love yourself, forgive yourself and trust yourself.

  9. I am 32 days out from my last benzo. I was put on them 2 years ago when my husband was diagnosed with terminal liver cancer. He is still receiving treatment. I have been given so many different meds for things I don’t think I had. When by the grace of god I had a rare moment of clarity and realized the meds had made everything worse I wanted to get me back easier said than done. I tried twice to stop the benzos cold turkey and both times had grand mal seizures but I refused to give up I wanted off this ride more than I ever wanted anything. Be careful what you wish for. I did a rapid taper only five days and the nightmare began. Every side effect you can have I did at times I felt death would be better nothing prepared me for this no amount of readind blogs from others could help me wrap my brain around the absolute hell that would become my life. Agonizing minuets that seemed to last for hours my mind and body was no longer in my control. My husband refused to read anything about my illness and rolls his eyes when I mention it he is put out by my problem because the world is not revolving around his cancer and no matter the topic at hand will find a way to make it about his illness. I hate to complain buecause he has had to assume some extra responsibilities due to my illness but he constantly tells meall the things he has to do even though he has cancer. I feel like I have failed him and my daughter. I want my old self back no matter had damaged I might be. I know that I can handle what life has in store for me but only if I am in control. I pray that the worst is behind me there are times when I recognize real emotions and clear thoughts with no pain and I almost believe their is an end to this nightmare they don’t last long but they give me hope.sorry this post was so long I read this whole page three times and bawled like a baby it was the first time that my pain had an accurate discription and a sympathetic voice it was like a soothing balm on a raw wound. Thank you to all that posted on this site my heart feels lighter because of your honesty. We are all worriors we are batterd and bruised I wish those around me understood the battle I’m in and celebrate my courage instead of seeing me as weak. Mabey tomorrow will be better mabey I will be better. God bless my fellow worriors I understand your courage and am guided by your wisdom.

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