My inbox and text messaging has been exploding lately with people asking if their symptoms are withdrawal or something else? Some have gone to addiction specialists only to have been told one of these statements: Benzo withdrawal can’t cause that, you were on too low of a dose to have withdrawal, you weren’t on your benzo long enough to have any withdrawal symptoms, benzo withdrawal doesn’t last this long, I’ve never seen anyone be this sick from withdrawal, you have a serious illness causing your symptoms, you should reinstate your benzo, you have vitamin deficiencies causing your symptoms, stress is causing your symptoms, and my personal favorite….It’s all in your head!
One “expert” here in the San Francisco bay area stared me straight in the eye and challenged me, “Are you going to believe me, a doctor ( he emphasized the word) or strangers on the Internet?” I squirmed in my seat, uncomfortable to confront his authority to his face. I went home, and promised myself to never discuss withdrawal with him again!
The sad fact is that psychiatrists and even “addiction specialists” rarely understand the symptoms of withdrawal or how it can happen to people even on low doses and even on a short period of time. I’ve long ago stopped asking why the medical community is so frightened to look at the truth about these drugs, as it used to frustrate me terribly. Millions of us experienced the exact psychological and physical symptoms due to taking a benzo. It follows logic that we are suffering from the effects of the drug. And, yes, personally I trusted the thousands of benzo sufferers I met via benzobuddies.org. They were living the nightmare. They knew. They understood.
If you are experiencing symptoms that concern you and you want know that it is not caused by an underlying illness, then by all means, see a doctor. But be forewarned and prepared for the doctor to dismiss your claims that your symptoms may be from withdrawal. Know that having to defend yourself may make you anxious and frustrated or rev up your symptoms. Our CNS is quite fragile as we are healing, remember.
Please get support from others who are swimming in the same sea you are. Look for answers from people who are or have been in, your shoes and can share some encouragement with you. You are not going to be in withdrawal forever. Eventually the brain and the body rights itself from the damage the drugs caused.
Please know that I can’t legally tell you if your symptoms are withdrawal or not. I’m not licensed to practice medicine. I can share with you what I experienced and what symptoms have gone away without medication, supplements or vitamins. Time. That is what heals us. Time.
After a long clear window of almost a month, I am barely surviving a brutal wave of pitch black depression, off the charts anxiety, suicidal obsessive toughts, exhaustion…the whole combo.
I think it was my fault because I was feeling so good I put too much stress on my poor CNS and BAM!!
I know that it will have an end.But when?? Am I going to be able to endure this torment?
I don`t want to die.
I am sorry.
Jenn, I agree totally! !!
Brian sorry you got hit with a wave after feeling good for awhile. I had that happen at the three year mark and man, it was brutal. I wanted to give up. I mean, how much can a person take, you know? My wave lasted about five months, then faded off into the sunset. Your’s could lift very quickly. I made mine worse by fighting it and doubting if it was still wd, (it was!) and got myself all worked up. Do your best to not sweat it, and to take it easy. It will lift. You didn’t have a month of good to lose it forever.
Thank you sweet Jennifer.
I will hang on.
Im doing this alone. I’m trying to oversee my declining mother’s healthcare along with dealing with a mentally ill family member who is using her for financial support. I cannot be totally incapacitated. Were you able to “hold on” to reality and sanity enough to not lose everything ? Iam an executor etc on a Trust. Any advice as I know I’m not crazy but obviously I have a long road ahead of me.
I’m so sorry to hear of your suffering and life challenges. My advice as a friend, not a professional, would be to seek legal counsel for the decisions you need to make. Withdrawal is not a good time to make such important decisions on our own. Our minds are far too muddled from the damage the drugs did. We need time for them to heal.
Good! tie a knot at the end of your rope… and hold on!
I was proscribed klonopin by a GP after I told him I thought I was addicted to Vicodin. I had been given that for neck pain both before and after major neck surgery. No warning on weaning off an opiate. None. Then came the klonopin. :It will take the edge off” I even take it said the doctor! I started to really like the way it helped me get back to sleep because I have to get up during the night to go to the bathroom because I have a bladder condition called for short IC. So I thought the k was helping and I thought boy was .25mg a small dose. Well after about six years of of a sudden I started to feel really weird during the day. I learned from the internet it was inter dose withdrawel, told the doctor and she just stared at me. When I started to become insistent on switching to Valium for a taper she dropped me as a patient with a certified letter. After two false starts I finally found a doctor willing to proscribe but I’m stuck at 2.5 mg K and an inaccurate pill cutter. Not working and my wife almost fed up. It sucks but I want to live ans see my grandchildren. So on with my taper attempts ..
Hi Jennifer,
I’ve been following your blog for the past two months. I haven’t posted a comment on anything yet, but I kind of wanted to give you a little bit of background and ask a couple questions…
First off, I think it is great what you are doing. There need to be more personal blog sites that sort of journalize the benzo journey. You provide valuable information and a sense of hope and I really appreciate it.
Now, I want to tell you a little bit of my background.
I’ve had some anxiety and panic attacks in the past, but most very brief and nothing too serious. I discovered that I had Lyme disease for about 6-8 years without any knowledge and I found that many of the neuro issues I was originally having were based on this fact. To make a VERY long story short, I went through about 4 years of continuous antibiotic/antifungal treatment and that doesn’t include all of the other antibiotics taken prior to a treatment plan or diagnosis (which i have since found out has been a huge issue to my gut flora).
Fast forward to about 7-8 months ago, I was doing alright. I was maintaining. I had some hiccups on that side of my health, but I was holding down a full time job and doing well in most regards. THEN about September 2014 rolled around and I started to sleep deprive myself a little bit with work. Long nights, early mornings, and I started to see my health slip a little.
I then took the initiative to start a juice only fast for one week. Yeah, an autoimmune disorder, and depriving the immune system of nutrients, probably not the best choice, but nevertheless I did it. THIS really kicked off some issues. Slight insomnia, irritability, and anxiousness.
SO… I make the decision to go to the doctor to see if he can help me with my sleep.
AND HERE WE GO… BENZO TIME. Klonopin .5mg twice daily. So, I do what any naive and trusting person would do. I took it. He was just a normal practitioner. No psych background or anything. Just hands it over and says take it, so I did. What a mistake.
Making again another long story short, I took it for about a week and started feeling weird. Heart issues (orthostatic and tachycardia), exercise intolerance (I’m an athlete), elevated anxiety, mood swings, and above all else the sleep WORSENED. I was a clinical insomniac. Sleeping maybe 4 hours a night on and off.
So, I didn’t link anything to the idea that this could be side effects, so I call my doc and he says up the dose to 1mg at night and just do .5mg in the afternoon. So, like a good patient, I do this. Worked for about 4 or 5 more days, then BAM same side effects, but worse and more of them. I knew I was in trouble and I was worried about myself.
I decided to do a little research. Man, what an EYE OPENER. I was living in the hell everyone was talking about and I didn’t know what to do. So, I stopped trusting this doc or seeing him for that matter and decided to try a naturopathic. She had little experience with the drug, but basically told I was OK to just go ahead and cold turkey. Again, very little research done on my part about the dangers, but HERE WE GO…
I stopped C/T. Two days later, I knew I was in trouble once again. I re-instated day 3. But only to 1 mg. Having more issues and after seeing that this lady shared no understanding, I decided to fend for myself. I saw some things online and they motivated me to try the C/T again because I was not on a high dose (any dose is a high dose) and so I really pushed it this time, knowing what to expect and went 5 days before having to almost admit myself. Day 6, I re-instated at 1mg.
So here I was after about a month of screwing with this and I was up to my eye balls. I couldn’t work or function throughout the day. I was a mess and nobody understood me because my family didn’t believe me until I later on after I showed them how dangerous this drug really is.
So a few more months of trying to do my own makeshift taper and mild C/Ts, which I know probably caused a lot of damage to my brain within itself, I decided to take the advice from another practitioner that had VERY LITTLE but some experience. So, I started a taper. 1mg to .5mg to .25mg to .125mg in 3 and a half weeks. Little quick you think? Yeah, I’ll say.
I was so sick. The laundry list of symptoms. I just kept pushing through with my athlete mentality. I was told by this new doc at the time that the symptoms shouldn’t last more than a couple of months at most. Well, I believed her and so here I am 110-120 days from my last .125mg dose and yeah most of the physical symptoms have drastically improved, but the mental not as much.
I was in a dark dark, doom and gloom depression for about a month. This started about 50 days after my last dose. I started having very morbid, intrusive, and obsessive thoughts and felt like I had to purpose to meaning to existence. This has NEVER happened to me. I’ve been a Christian for about 15 years and never felt this way.
I sought out treatment reluctantly, but I had to do something for the suicidal thoughts and I got a very low dose of SSRI. Lexapro 5mg. I’m still currently on it, but I don’t know what all it is doing for me anymore.
Ever since I got this help at the end of February, I’ve been up and down with how I feel. Some of it was getting use to the lexapro because I did have some side effects, but most of it was just the waxing and waning of the withdrawal syndrome I believe.
I have much improved, but again the insomnia still comes and goes. I never sleep through a whole night. And now the obsessive thoughts are my worst enemy. I try to exercise and stay busy to combat these thoughts, but its not working as much as it use to.
HERE IS WHERE I HAVE A COUPLE OF QUESTIONS
My obsessive thoughts are about the universe and other weird thoughts pertaining that I don’t want to mention in case someone else is reading. These thoughts prior to withdrawal were not a big deal or anything that really scared me much. But, it didn’t start until about 60 days out from last dose, but have you heard of this? In your opinion, is this a withdrawal deal and will it eventually go away?
I want to believe that things will get better, but I think I’m kind of in a down spell right now.
Is it common to have a couple good days and then a rough week? I feel like my windows are good when they are there, but they just don’t last long.
Sorry for the long post. I’m just looking for some hope and help with my questions. I want to believe that these thoughts will go away, but it is just so hard to wake up everyday with these thoughts on my mind and go asleep with them.
Thank you for your support and care,
Connor
Sorry, one more question.
Did you also have thoughts that make no sense that pertained to your obsessive thought?
Thanks.
Hello again Jennifer 🙂
I am approaching the 7 month mark off klonipon…my worse symptom has been almost constant muscle pain, weakness and numbness into my legs and feet. It is excruciating! Along with that horrid dizziness. I know you spoke of of leg weakness and I was wondering if you experienced the same. Also did how did you cope? I am sure I could deal with the other annoying symptoms uf I could get this to be more manageable. Thanks for your blog : with warm regards,
Cari
Hi. Hoping I will get the posts again..they stopped. It’s hard @ xs 🙁 c others stuffing here..But hold on n I 2..
Oops..suffering not stuffing..my kitty cats 2 year Birthday 2day 🙂 😀
So if even after 1 n a half years or so off, the stress make it worse? N will go away?
Hi Jennifer, I hope you are well. I am approaching 21 months and just got slammed with a wave as I started a new job. I still run and lift weights everyday but I am not as strong or as outgoing as I used to be. Will I ever be the same?
Yes, eventually you will most likely be able to enjoy life as you once did. Keep the faith.
Yes, stress can make things worse even at 18 months off. Even at 5 years off. We don’t deal with stress all that well once we have been hammered by benzo withdrawal. Nothing bad about that, it simply means to be conscious of your lifestyle and to avoid drama etc.
Amy if you sign up for the posts you will start to receive them again. The old email list didn’t transfer over to the new hosting account. My apologies.
Cari
Hi! I emailed you an answer, but wanted to address is here so others can learn too. I had the same weak legs and dizziness. I coped by staying as busy as I could, taking into account my limitations. I gardened almost every day. It was a true life saver in every sense of the word.
Absolutely! Weird thoughts are a hallmark of benzo withdrawal.
Yes, its normal to have ups and downs. Its the way healing is in withdrawal. No one has figured out why, but we do know that it is a very real phenomenon. The intrusive thoughts and weird thoughts will eventually fade away. Give it time.
I have a question for you Jennifer. I think this may actually be my second withdrawal and want to get you thoughts. I had surgery when I was 23 and woke up during the operation. I know I was given benzos and I think it was a large dose. I did not get w/d symptoms until about 6 months after or so but they hit hard. I was bed ridden for 3 months and nobody knew what was wrong with me. I slowly got better but I took about 5 years to get fully better but I did fully heal. Can a single large does cause withdrawal?
I am not an expert on that. Maybe someone with more knowledge will read and post their thoughts.
Very vague question… But besides the fact that this is well said and relateable… I dont want to go to the e.r because of these wothdrawl symptoms, cant afford it and its away from my safe zone it will make me worse, and im very iffy on letting my gaurd down to a doctor about it only to be told its all in your head and to take some anti depressants… How should i go about this, doctor or hospital… It seem thats there really isnt another option because ive only been prescribed ativan but abused benzos heavily and illegally for a solid year and have done them for years.
I’m sorry, not sure what you are asking here? If you are in a cold turkey state and in danger then you must seek medical help. This site is for educational purposes only and no one here, me included, can diagnosis or treat any benzo symptoms. Can you ask the question again? Thank you, Jennifer
Yes, sorry for the late response, im in a state of limbo trying to stop cold turkey but still restarting the cycle, when the symptoms get too strong… Like ive seen mentioned on this page doctors really dont understand the feeling and the process of finding a doctor and what to be prescribed is hectic when they make you feel like a science expirament, i want to stop and im running out of time before i have no choice but to stay cold turkey(less than a week) and i just want to know your opinion on what type of medical help i should seek, emergency room help, or a doctor that might feel like he doesnt even understand and risk the help taking longer for me to recieve