“This is a world of suffering so horrifyingly bizarre that it defies a description sufficient for anyone else to grasp.”
These links give the information I wish had been known to me and my then GP thirteen years ago.
I am still searching for a video made by a carer of someone in Benzodiazepine withdrawal where she states that the sufferer is totally unable to cope with any basic tasks at all and needs constant reassurance. It’s a really well done resource by an American female if I remember rightly. If anyone knows about the video I’m referring to please let me know.
Video clips by Baylissa Frederick. Psychologist, benzo councillor and benzo survivor.
This is a good online resource. Life cannot be normal with benzo wd. “This is a world of suffering so horrifyingly bizarre that it defies a description sufficient for anyone else to grasp”.
Brain damage and benzos.
An account by a carer.
This was written by Dr. Jennifer Leigh and I think is excellent to share with our friends & loved ones to help them understand what we are going through:
What We Wish Family And Friends Knew About Benzo Withdrawal
by Dr Jennifer Leigh
If we had been diagnosed with cancer, our family and friends would know that we are sick. They’d make us casseroles, take us to our chemo appointments, and call us to see how we are doing. After all, cancer is a serious matter, They would be concerned. But family and friends have very little knowledge about benzo withdrawal so they don’t know just how serious it is. This is what we wish they knew about benzo withdrawal.
We trusted our doctors and took a pill, as prescribed, and it damaged one of the two main “circuit boards” that regulate our brains. We have damaged GABA receptors, which means our bodies and minds don’t have the ability to slow/calm down. We suffer from chemical brain damage that can take a long time (sometimes years) to heal. Many of us have severe physical symptoms: painful joints, bones, muscles, teeth, eyes, mouth, etc. Our skin burns. It feels as if we have bugs crawling under our skin, or that bees are stinging us. Our muscles twitch and spasm. Our legs are weak and our balance is off; walking is difficult. But some of us do walk, and walk, and walk, as we are suffering from akathisia, a movement disorder that causes an inner restlessness and a compelling need to be in constant motion. We have painful and frightening pressure in our heads, making it feel as if the world is sloshing around us. Many of us are bedridden for months at a time, unable to take care of the most basic of human needs. We can’t think properly, and our memory is impaired. There are countless other physical symptoms that we may have as this is not an exhaustive list. What we want our friends and family to know is that we are sick and in pain. It’s hard to manage our lives. Many of us are unable to work or to function in our roles and duties as a parent. On top of being physically sick, we have mental symptoms as well.
Without a functioning GABA system to calm the fight/flight/freeze response of our brains, we live in a state of fear, anxiety, paranoia, or terror. We may have depersonalization or derealization. Frequent panic attacks are common. In benzo withdrawal, we lose the ability to feel positive emotions. Love, happiness, and joy are not within our reach. We slog through our days feeling a zombie-like doom and gloom. Intrusive and looping thoughts are common. We have very little control over our minds. Visual, auditory, and olfactory hallucinations are not uncommon. We wish that our friends and family understood how frightening it is to lose the ability to think rationally and to no longer feel as if you are the same person you were before benzo withdrawal. It is hard to live in the altered reality that benzo withdrawal can create.
We want friends and family to know that we are scared and oftentimes feeling hopeless. We need a great deal of reassurance. When we get scared that we will never get well; that we will never be ourselves again, we want you to remind us that we are healing. We know that we tax your patience, and we feel bad about being so needy. But we hope that you can hang in there with us as we do the hard work of holding on and surviving. We want you to take care of yourself so that you have the energy to take care of us too when we need your help. Please don’t burn out! It’s okay to take time away from us to refresh and recharge.
We know that the only cure for benzo withdrawal is time, so your suggestions to “Go see a doctor” or “Get back on your meds,” or “Up your dose,” doesn’t help us. See, what you don’t know is that the medical community understands very little about the damage these drugs cause. We’ve learned from thousands of others who have lived through benzo withdrawal. There are no meds for withdrawal, nor should anyone be on a benzo for more than a few days. Please trust that we have educated ourselves about the healing process from benzos.
We want our friends and family to know that benzo withdrawal will come to an end one day, (even if we don’t believe that ourselves). Our brains and our bodies will heal. We will start new chapters in our lives. We want everyone that we love to go the distance with us and to celebrate the dawning of the new day when we are recovered. Until then, we just need you to listen to us, to be there for us. We don’t need you to try to fix us; we know that you can’t. Just love us, exactly as we are, and where we are on our journey. We thank you and love you for being there for us while we battle an invisible, and medically ignored illness of great magnitude.
A great link on the timescale involved.
Benzodiazepine Recovery Tips – 1. Recovery from being an accidental addict to benzodiazepines (Xanax, Klonopin, Ativan) is serious business. It takes time for the central nervous system to heal and for neurotransmitters to stop being sensitive. None of us had the faintest idea that this kind of situation lay in front of us. So we are dealing with shock at what has happened as well as the real physical and mental/emotional symptoms of withdrawal.
2. Recovery is not linear, as it is with other illnesses or injuries. If we cut our hands, we can actually see the cut heal and the pain diminish over time. In benzo withdrawal we can be well one day and very sick the next. This is normal and we have to look at our healing differently.
3. Recovery is an individual thing, and it is difficult to predict how quickly symptoms will stop for good. People expect to be completely better after a certain period of time, and often get discouraged and depressed when they feel this time has passed and they are not completely better. Most patient support programs tell clients to anticipate 6 months to a year for recovery after a taper has ended. But some people feel better a few months after they stop taking benzos; for others it takes more than a year to feel completely better. Try not to be obsessed with how long it will take, because every day you stay off benzos, your body is healing at its own rate. If you do not follow this particular schedule, it does not mean there is something wrong or you are not healing. Even if you are feeling ill in some respects, other symptoms may disappear. Even people in difficult tapers see improvements in symptoms very early on. So don’t let these time-frames scare you. The way you feel at one month will not be how you will be feeling at three months or at six months.
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 beginning. Setbacks, if they occur, are a normal part of recovery.
5. When people are in recovery, they have a lot of fears. One is that they will never get better. Another is that their symptoms are really what they are like — perhaps what they have always been like. Both of these fears are stimulated by benzo withdrawal. In other words they are the thought components of benzo withdrawal, just as insomnia is a physical component.
6. There is no way around benzo withdrawal and recovery—you have to go through it. People try all sorts of measures to try to make the pain stop, but nothing can shortcut the process. Our body and brain have their own agenda for healing, and it will take place if you simply accept it.
7. When you are having a bad spell, healing is still going on. People typically find that after a bad spell, symptoms improve and often go away forever. Try to remember this when times are hard.
8. There is no magic cure to recovery, but you can help yourself by comforting and reassuring yourself as much as possible. Read reassuring information, stay away from stress, ask your partner, family and others for reassurance, and go back to the things you did at the beginning if you are experiencing really tough symptoms.
9. When we start to feel better, it is very typical to try to do too much. We are grateful to be alive and we have energy for the first time in weeks or months. But this can be a dangerous time. When we do to much and take on too much too early, it re-sensitizes the nervous system. It doesn’t prevent healing in the long term, but it can make us feel discouraged. So try to pace yourself, even if you are feeling good.
10. You do need to respect your body during recovery, although you don’t need to make drastic changes to your lifestyle. Exercise, in any form is critical—even if you can only walk around the house or to the end of the block. Eating well and avoiding all stimulants is crucial. Regular high-protein snacks can help with the shakes and the feelings of weakness we have during withdrawal and recovery.
11. Recovery is all about acceptance, but this does not mean passive acceptance. Set small goals for yourself that are achievable. Try to keep exercise happening. Work at your recovery even if that means accepting you are sick—for now. You wouldn’t be hard on yourself if you were in a traffic accident and had injuries; you would work at rehab. Try to take the same attitude and approach to benzodiazepine withdrawal.