I’ve had more than a few phone calls and emails this weekend from people who were worried that *maybe* their symptoms aren’t benzo withdrawal anymore. They ask if it’s possible to be suffering from benzo withdrawal 18, 24, 30, 36, or more months out. The answer is yes! It is definitely possible to still be suffering from benzo withdrawal symptoms that far out. And, it is possible to get hit with a nasty wave after having had some measurable improvements. Benzo withdrawal is a very unpredictable syndrome.
I had a setback at three years out. A doctor I saw told me that there was no way that what I was experiencing was benzo withdrawal. I was incredibly sick, and as you can imagine, worn out from the whole process. It was very hard to not believe my doctor. Sometimes, my fear and doubt couldn’t be kept at bay. I reluctantly tried a few medications to see if they improved the quality of my life. They did not, and in fact, made me feel worse. When my wave lifted, it was obvious that what I had experienced was “just” benzo withdrawal. Of course, as the years went by and I recovered more and more, it was clear that benzo withdrawal can hang around for quite some time, and can wax and wane until it finally goes away.
If you are suffering from benzo withdrawal symptoms and you are quite a ways out from your last pill, please don’t lose heart. Please don’t worry that you’ve suddenly developed some new strange illness. (Of course, see a doctor to rule out anything and to give you peace of mind.) It may seem impossible that you can have symptoms so many months past your last dose, but it is totally possible. Not only that, but it is very common! It’s also possible to get hit with a horrible wave or setback many, many, months out. (not everyone does, but some do, and it’s just part of the healing process.)
Hold onto the reality that we do heal. Benzo withdrawal does come to an end. We go on to live happy and healthy lives. You are going to heal, even if you’re still symptomatic quite a ways off. You are still going to heal even if you were getting much better but have suddenly been thrown into a wave that feels like you’re back in acute withdrawal. These fluctuations are normal. They don’t mean anything other than they are a part of the recovery process. Keep your chin up. Remember to hydrate, eat clean, whole foods, avoid alcohol, caffeine, processed foods, etc. Avoid vitamins and supplements that are known to flare up benzo withdrawal symptoms. Avoid stress. Avoid strenuous exercise. Learn to distract. Have patience, Practice gratitude. Try to be of service to others in some way. Learn to practice acceptance. These things go a long way to help us reduce our suffering during benzo withdrawal. Keep going. You are healing. Don’t worry. Everything in this present moment is perfect! You are healing.
Hello Jen, haven’t been in touch for ages as I’ve been managing but enjoyed your post today… two and a half years out I still have symptoms. My main problem is that I have been unable to avoid stress!! My dad died when I was only a few months off Benzo, and my mom has dementia and I’ve simply had to help with her care. Young grandchildren too . I also had to have some breast cancer related surgery a year ago, so it was super helpful to read your post today and remind myself not to feel disheartened as I still feel quite exhausted and unwell at times. Much love and huge blessings from across the pond in Birmingham uk x
This is so important to understand. I’m just shy of 36 months from cold turkey, and have no choice but to acknowledge that symptoms can occur even at this juncture since if I come anywhere close to MSG or even a drop of alcohol I’ll be completely incapacitated for at least a day and a half. Needless to say, this was not the case before. The doubt can get you in real trouble because it can get you to seeing doctors who dont understand. Accepting what Jennifer says about us being brain damaged by benzos helped me overcome that doubt and start to see the healing process differently. I’m gentle with myself now, and symptom wise it’s night and day.
Thank you Jennifer! A very timely reminder. Needed to hear/read this today, at 5 years 2 months out from last dose. With my 20 years of daily dosing of Klonopin, healing is certain to take quite some time. I’m learning patience and acceptance among other things.
Thanks Jen!
I really do wonder if I will ever be “normal” again, and if we are permanently damaged?
I have had major, agonizing setbacks every single year since my last pill June 2015 (58 one mg. total pills from start to taper Jan.-June) and was fully recovered October 2015 with a full-blown setback starting March 2016 and lasting four months. All my setbacks each year have lasted 3 to 6 months with last year being the longest. My current setback is right now and I’m ending the third month and feel like I will never be well again, that I will never be me. I have gut wrenching depression, can’t feel any joy or pleasure, severe crying jags, severe weakness, constant body shakiness inside, constant queasiness, I have to force myself to eat, the fears and intrusive thoughts are worse than ever, I live alone but have to sleep at night at my sister’s house where I get a small reprieve until I wake up thru the night with knots in my stomach at dreading another day to have to go through this especially with the never ending morning gut wrenching crying jags. The mornings and after work (dreading going home) are the worst along with the weekends. I am able to make it to work where I feel safer and the distraction helps and I have a very understanding boss and co-workers who have been through this with me since the beginning. My hell of setbacks has been longer than the time I took benzos prescribed for sleep. Do I have patience and acceptance..no, sorry…I am very angry and feel very ripped off! This is my reality and it is so unfair!!!!
Would really like to know if anyone is still having dizziness and balance issues at 5 1/2 years off,and still get over anxious from minor problems?
Dear Dr. Jennifer,
This doesn’t really belong in the comments section but I don’t know how else to reach you. After 30 years of prescriptions with no knowledge of side effects, I successfully did the crossover from 3mg of Ativan to 30 mg Valium a little over 2 years ago and have managed to taper by only 30% since that time.
My constant daytime fatigue was consistently judged to be a side effect from the longer half life of the Valium. It wasn’t, at least not directly – I suffered from severe sleep apnea for well over a year before finally insisting I be checked for it. By that time I could barely walk due to the oxygen deprivation. As a petite older lady, I didn’t fit the typical body type so it was never suspected. Please let your clients know about this possibility.
Also, the importance of a clean healthy (organic, non-GMO) diet to the gut microbiome should never be underestimated. Many of our neurotransmitters are produced there, a little known fact only found in cutting edge research and not yet recognized by the medical community (with the possible exception of some ‘renegade’ functional medical practitioners and a number of those educated in Traditional Chinese Medicine, neither of which are covered by insurance.) These facts are fully backed by reputable, documented scientific studies and are being kept from public knowledge by Big Pharma.
I agree that many of us cannot tolerate vitamins and supplements but that is because they are chemically mass-produced and largely unregulated for quality. Whole food based supplements are a completely different story but much less affordable.
Your writing has helped me immensely and sent me on my own path of research. I hope you will accept my note as an attempt to give something back.
Sincerely,
Helen Hills
BC, Canada
After almost 26 months since my last benzo and being hit by an intense setback at 21 months out, I am living proof that this can and does occur. I was feeling totally healed for many months until this happened. It has been a very difficult journey, but does make me appreciate how good life can and will be. I am starting to feel better and am hoping that a permanent window will open very soon. My heart goes out to everyone who is suffering. I do know that healing is the end result. Thank you Jen for your always timely blogs. I look forward to each and every one of them.
Thank you Jennifer. I’ll probably ask you the same question tomorrow. And the next day. And the next…..
I am tapering Valium right now and close to being done…. I guess I thought that if you tapered you would not have bad withdrawal symptoms afterwards? I was on a very low dose for 4 months but was hit very hard with interdose withdrawals and paradoxical reactions from xanex when I asked my dr to change me to Valium so I could taper myself off! He had no clue and seemed to think I should just be off it in a few weeks! I was in a living hell trying to get off the xanex before switching to Valium for a water taper . I’m really scared now that when I am don I will get the terrible withdrawal symptoms back I guess I thought that tapering would stop this? Can you give me any insight into what it’s gonna be like although I know everyone is different
You will be better than your old normal self. In time. We all heal.
Short term users, please respond…have you been completely healed for 6-8 months or more and then later experienced a major setback that lasted months and felt like you were back in the pits of withdrawal? How about experiencing setbacks every year after healing that has lasted months?
Deb, I still have all that you mentioned at 5 years 2 months. Not EVERY single day but most of the time. The best I can tell is that the dizziness is brought on by stress and the balance issues come from the dizziness. Vicious cycle! My brain, constantly overthinking things, gets me in a lot of trouble.
Thanks Angie,I appreciate it.It helps to know I am not the only one having these symptoms after this long.This stuff is making me crazy,seems to drag on way too long.I’m so sorry it has been the case for you too.
I am starting to realize that all of this is permanent damage.
Would love to hear from someone who is farther out than 5 years!
Pam, yes I was only on about six months, from June to December of 2017. As I said in my previous comment, I am almost three years out and still get hit with bad waves if I do too much or dont take care of myself. As Jennifer says though I am a much better person than I was. The coping skills you learn thru the process go deep. I know how important it is for you to hear that someone else was only on for a short time and is still experiencing symptoms because that was one of the most hellish parts of my journey. I’d read stories of people suffering after decades on and be overwhelmed with doubt that I could be experiencing it after only a short time. The thing is everyone’s system is different and we all sustain different damage that will heal at its own rate. My dosage was a half mg lorazepam nightly for sleep and nightime panic attacks. Even with such a low dose, though a hundred times better than I was when I stopped taking them, I admit that I’m still somewhat fragile today. If I get dehydrated or eat wrong or don’t sleep enough I’ll get hit with a wave that’ll leave me dizzy, extremely anxious, and pretty well bed ridden. Again it appears I’ll never be able to drink alcohol again. I had a steak with a whiskey based sauce at a restaurant a few weeks back, by the time I made it home the room was spinning and all I could do was just grab a bottle of water and crawl into bed for the rest of the day, I could even walk. So although doctors will tell you you’re nuts, mine literally walked me out of her clinic, know that it is benzos withdrawal.
Where can I get the help I need without the fools killing me? I have been in chronic pain 50 years. I have been on benzos 10 years with my pain meds dating back nearly 50 years. I am off the painefs two months. Would it be possible to detox off benzos now?
Joshua…thank you so much for validating our short term use…long term hell. When you get hit with your bad waves, are they only for a day or so? Have you had major setbacks where they last months and months? I can’t emphasize enough how I get hit every year, mine aren’t waves…they are major setbacks and they last 24/7 for months and months…the shortest was 3 months…the longest was 6 months. But when I’m not in my yearly setbacks, I feel perfectly fine, completely healed and have no reminders or waves at all…ever! I go right back to living life as if the setback didn’t happen. My setbacks are no physical debilitation other than extreme weakness. It’s all mental with no reprieve. This setback I’m in right now is scaring me to death.
My sympathy Bif,
Can’t answer your question but can offer some advice. I was on pain meds (codeine) for 40 years, various antidepressants off and on for 20 but on Benzos for 30+.
I tapered off the codeine and had kicked the antidepressants before trying to get off Benzos. By that time I was nearly 70 and had only just learned how harmful they ALL were, especially in combination and often with alcohol as well!
I had done some cutting down on my own over the years after retirement and was semi stable (though miserable with inter-dose withdrawal) at 3 mg Ativan daily. Switching to the longer acting Valium (30 mg equivalent) using the Ashton Method method really helped. With the support of the doctor who educated me on all this, I managed to cut an additional 30% before hitting a brick wall. I feel sane and can control the odd bit of anxiety (rare) with deep breathing exercises.
Our bodies aren’t as resilient as we age and I doubt I’ll try to reduce more.
So my suggestion would be to try a self paced, very small-at-a-time taper in dosage, stay with it till you’ve been comfortable a few weeks, then try another reduction. You’ll know when you’ve gone as far as you can!
Best of luck from a fellow victim.
I crossed over to 3.5 Valium from .35 mg Ativan about 2 weeks ago. It was brutal. I’m now on valium only and in such despair. I’ve always had fibro/CFS and migraines amongst some other things but everything is 10 times worse now. The body pain wakes me
Every night as I lower the dose. Shoulders, arms, hands, legs, knees and more so HORRIFIC!! My dr said it’s my new normal of pain…..central
Sensitization. I also have RLS which he feels
Has worsened and progressed to the arms. I guess the benzos was keeping it at bay and now it is going crazy because of the taper! Maybe I should try something for the RLS. magnesium, iron, folate and B12 not helping. Maybe it’s that I’m getting more sick. I am
Bedridden and debilitated. Non functional and in despair. So many other symptoms too. I do t know what to do
Just curious as to whether there is actual damage done to the CNS and if so, could be permanent? I’m 3 years out and no windows yet as far as I can tell – has just been a nightmare. What led me to get off it was just after having had an OD of Nembutal and Klonopin. I was at a fairly high dosage ~ 6-8mg/day which was partially supplemented by getting it from MX. I am 61 so it doesn’t matter so much as it would have 20 or 30 years ago. It is what it is.
I am toward the end of a slow micro taper of Ativan. Currently at 0.04mg twice a day. I started the taper last December (2018).
My question to any one-does anyone else have terrible chest pain? I have seen several cardiologists, had multiple test and they always come back good. But this chest pain is very scary. I have tons of other symptoms-some horrible-but the chest pain is the hardest one to convince myself that it is withdrawal. I do have windows of not having it.
Does anyone else have chest pain with withdrawal? Weaning off Ativan since December 2018. Have seen cardiologist, mulitple test, etc. everything normal. Please respond.
Hi Pam, how old are you? I’m coming off taking a load for about a month and feel terrible.
This blog helps me a lot at the moment. I am now benzo free for six months after only six weeks of use. And last night suddenly symptoms returned that I hadn’t had in three months. Then I start to doubt again whether it is withdrawal. I sometimes can’t believe that after six weeks of use, I can still feel so bad … Your blogs help me a lot in this difficult time. Thanks! Greetings Eefje from the Netherlands
Eefje, what did you take for 6 weeks and at what dose? What for? Wondering what age everyone is too and if that has an effect on length of healing?
Thoughts?
Thanks
Tamra Bevill,
Yes I too have had very painful internal chest pain like angina/heart pain only mine was Right sided. I had 2 EKGs & 1 contrast CT = all negative for heart disease. But, I will say be slow with strenuous exercise, no rushing or running, avoid caffeine & alcohol. And consider acupuncture treatment & trying Hawthorn Berry extract (get solid/no alcohol). The above has “cured” my chest pain, although I still feel occasional short of breath & tightness. Do stretching & slow deep breathing. Hope this helps. Big LOVE
Jack…I am 65. Are you also a short term user? Are you in a setback or have you just finished tapering? I am still in my setback…four months now! Severe gut-wrenching crying jags remain the worst right now and the alone in the world feeling! All my other symptoms are still very present, too. I have NEVER had a reprieve of a full day window during this time! Yesterday I truly felt like I just could not go on!!! It was the worst! I still can’t believe this has happened to me!