I’m seven years into my recovery from taking a benzodiazepine as prescribed. That’s a long time to be having to accommodate one’s life around health issues. Of course, I am better than I was when I was tapering, and I’m better than I was for the first few years after my cold-turkey (at the hands of an “addiction specialist.”). I am even better than I was at this time last year when I had a very unexpected setback and was bedridden for many months. I’m better, but not yet healed. At least not as healed as I was before the setback.
We hear that our symptoms come from down-regulated GABA receptors. But is that all, especially in protracted withdrawal? I’m not so sure that it is, even though I have no scientific evidence to validate my opinion. But I do know my body, and I feel that at this stage of my healing, more is at play than “just” GABA receptors not working correctly.
I’m aware that histamine may play a role in my symptoms. My high viral loads, as shown by my blood work, also might play a part. Perhaps my thyroid is a bit out of whack—not an uncommon occurrence in withdrawal. Although my lab work doesn’t show any known autoimmune issues, I feel reasonably confident that my immune system isn’t functioning at its best. I believe the stress and trauma of benzo withdrawal cause all sorts of issues that take time, proper nutrition, and impeccable self-care to heal.
I’ve been tested for most of the illnesses that benzo withdrawal mimics, and nothing has been found. It’s not a bad idea to get tested to rule out other causes of your ill health if you are in protracted withdrawal, however, I’m not a big fan of a lot of medical intervention, as that is how I got harmed in the first place. But I am a fan of creating stress-free environments for ourselves, eating organic whole foods, avoiding foods or supplements that rev up our symptoms, avoiding drama, exercising gently, being of service to others, having a spiritual practice, having a victim-free, positive outlook, and working with medical professionals who think outside of the “Big Pharma Box,” or working with alternative healers (I now work with a wonderful bodyworker who is helping me immensely).
Even though the road is long for many of us, I do think that we ultimately heal. When I read about Dr. Reggie Pert’s traumatic benzo withdrawal and recovery, he said that his symptoms were either gone or that they were so mild as to be incorporated into everyday life. I think that sums it up best. If we do have any lingering symptoms, they will be so minor that we can overlook them. That’s how I felt before my setback. My symptoms were so minor that I didn’t even think about them. I know that I will get back to that baseline, and better, in time, especially if I address my body’s need for rest, quiet, gentle movement, and proper nutrition, and my mind’s need for service to others, a belief in something greater than myself, and positive thoughts.
I’ve shared this before, but I’ll share it again as it is such a powerful tool to use: I ask myself every day, “What is the most loving thing to think, feel, or do?” That question guides me to my highest and best. Learning to treat myself with love, care, and compassion goes a very long way toward healing. I’ve learned that even on the days when I don’t feel my best, I can still be loving to myself and others. I’ve learned to keep moving forward and to be grateful for my life, whatever shape it is in at the moment.
By the way, I floated the idea of a private group/forum for healing with love (spirituality) but unfortunately, I haven’t been able to create all of the framework for it on the back end of my website. I got delayed with family obligations. I’ll let you know when I have everything in place. Thanks for your patience.
Hi Jennifer. I agree with you completely that withdrawal is more than just GABA receptors Damage. I also believe that Benzos act as an antihistamine and hence we are very sensitive to histamine when we come off them. When I reduced my histamine my stomach settled down a lot and although sleep is still a big problem I am more restful at night. In addition my constant mind chattering has calmed down too. The dizziness and disorientation, the vision problems and irritable stomach the fatigue remain but hopefully in time this settles down. It is hard when so many healthy favourite foods are high in histamine.
I am interested in how you measure your viral load with blood test. I also think the benzos did a good job of effecting our gut flora which takes time to heal and rebuild. As you always say so well it takes time to heal and as hard as it is we just have to be patient.
Oh I also wanted to ask what a body worker does?
If I was you I would have micro nutrient testing as well as neurotransmitter testing. At 6 years off you might be depleted in a vitamin or two. We do know that coming off a benzo depletes our vitamins and it’s important to eat a very clean diet no gluten, histamine, carbs, etc. Please read SSR1975 posts on Benzo Buddies, I think you will find her recent success story very interesting. IMO after one c/t’s off a benzo it takes 6 months to 1 year for our GabaA receptors to up-regulate and Glutamate to prune back, however this is just a small part of the benzo domino effect that alters our brain. Benzo’s can change our subunits, and sometimes they can come back slightly altered. Sadly healing is beyond complex. Sending you good karma!
I too am in a setback for several months now. Life was so much easier (still hard but easier) in the mornings. Now the anxiety/depression/fatique each day makes it very hard to get up for my precious kids and the dread of not being connected to life for years now. I really outdid myself to the point that I did not leave much time for myself with a travelling husband and no family support because I live away from them . I believe that played a big role in my setback.
Massage therapy. It’s very helpful for me. But I need Very gentle touch otherwise it sets off my tingling and other symptoms.
Exactly. I’ve read the benzos suppress mast cells. So when we stop taking the Benzo they go a bit nuts, hence the histamine reaction. I’m able to eat more foods high in histamine, but I’m still cautious.
I spoke to someone whose friend was doing research on cow’s GABA receptors. They claimed it took three years for damage to be repaired. No idea how they were measuring it. And we aren’t cows. However, I thibk It takes quite a long time for our receptors to heal. And even then, they aren’t as strong as they were originally. Not for awhile at least. That’s why we shouldn’t jump back into life so quickly. Our receptors are still fragile even though we may feel better.
I had Tests for EBV, and other common viruses. They look at your immune response to them. I’ve got a high viral load. Hence my fatigue at times. But I refuse To take anti virals. So I eat Clean. And I drink Beet kvass and eat fermented foods to heal my gut so my immune system can be healthier. Those foods are high in histamine so it’s a balancing act at times. But I manage
I’m so scared about the future. I worked in the Music industry before this. I toured and travelled and it was my passion and income. My only other experience was in hospitality. After this I don’t know how or what I can do. My cognitive function is so low I won’t be able to study. The stress of hospitality and the loud music and flashing lights of the music industry. Will i ever be able to do these things again.
I was only on ativan for 3 months including taper and I feel it has stripped me of my future.
I’m sorry to hear you’re suffering. Once you are recovered and your CNS is once again strong, there is no reason that you can’t go back to work. It may take some time, but you’ll be well again. Keep the faith.
In my case it may be about the GABAA receptors. I had a diagnosis of myoclonic epilepsy over 40 years ago so clearly these receptors were malfunctioning and that is why I was prescribed a benzodiazepine. Withdrawal from that drug has devastated my body … particularly my spine, legs and arms. I now require a walking frame and wheelchair. I don’t know if my brain will recover or not but my body is unlikely to recover, too much damage has been done. There may of course be other things going on but I am not aware of them.
I think at some point it’s definitely not about damaged GABA receptors anymore. I think it is very individual and has to do with already excisting health issues, genes, etc. My mother has used Valium many times for back pain and never had any issues, not 1! I used it for 2,5 months, tapered for 4 months and had a lot of issues. I avoided absolutely everything for 1,5 years after my taper because of all the things I read in the benzo groups and it gave me a lot of anxiety. When I started using supplements again I could feel the difference very soon and regreted listening to others about what my healing journey should look like. We are all different and there’s not 1 cure for everybody. I can take drups containing alcohol with no issues, drink small amounts of green tea and be fine, but gluten will set me off. I left the benzo groups and try to go my own way now. I’m close to 2 years being off and don’t want to compare myself to others anymore. I was already delaing with healt issues before benzo’s and I’m still dealing with the same issues now. I feel there are a lot more reasons why we get so sick after using benzo’s, than just damaged benzo receptors. But that’s just my humble opinion of course…. 🙂
I do hope that you continue to heal. You were also on other psych meds, if I remember your story correctly, so perhaps that is what slowed down the process (???). Your body is needing extra time. You’ve been through a great deal and have suffered terribly. Your story is heartbreaking. Praying for you!
We all must find our own way. We are all so different. Vitamins and supplements can rev some people up and make them feel worse. It’s trial and error for many of us. I’m glad you’ve found what works for you and are working towards healing. That’s all that matters. I’ve talked to a few people who used a benzo for decades and they came off without any problems, so yes, we are all very different! DNA must play a role in our reactions. Thanks for your comment.
Do you know if withdrawal can cause hyperthyroidism? If so should it be treated during withdrawal?
I am not in a position to answer that. I prefer to let benzo-wise doctors answer medical questions. I do know withdrawal can affect many organs/systems. You can also post your question on benzobuddies.org and find out what others have experienced with their thyroid and/or thyroid meds.