I knew if I stayed in bed that I’d succumb to the depression and hopelessness I felt. But if I stood up, I had to battle lightheadedness, weakness, dizziness, and a racing heart. P.O.T.S.—Postural Orthostatic Tachycardia Syndrome (or something like it), seems to plague more than a few of us in benzo withdrawal. It was a hard choice: feel awful from despair (and the pain, burning, etc.) or feel awful from P.O.T.S. I did my best to live my life, but of course, there were some days when I couldn’t force myself out of bed. The sensations were too overwhelming. There were days that I went without showering, brushing my teeth, or eating because standing up was too debilitating.
I handled the P.O.T.S-like symptoms as I handled most of my symptoms in benzo withdrawal, I accepted it, and I did my best to live my life around it. Both strategies were often challenging. Over time, I became more skilled at acceptance and more skilled at pushing myself out of the door even with an elevated heart rate. I’ll always remember the time I needed to swing a pick ax to break up a patch of clay in my garden. The moment the ax was above my shoulders, my heart exploded into a rhythm that felt incompatible with life. I dropped the ax and stumbled into the house. I crawled into bed, and I lay perfectly still, my poor heart pumping like there was no tomorrow. When it finally calmed down, I went back out to the garden and picked up the ax again. I could only lift it a few inches, but I broke up the clay and planted some spring annuals. I was more than a bit shaky, but I got the job done. Looking back, I suppose that my innate stubbornness was helpful in withdrawal!
On top of the P.O.T.S., I had severe head pressure. It would come on like the surge of rising water; I could feel my body changing, giving way to dizziness that was frightening. The pressure was so bad that I often wondered if I was having a stroke or an aneurysm. I’d have to lie down as I was too weak to stand when it came on. In the beginning, I’d panic with the head pressure. I thought for sure it meant I was “buying the farm.” But as the months went by and I nothing serious happened, I learned to take it in stride. I didn’t like it, but I learned to accept it. One of the things I did was to always “get back on the horse that had thrown me.” If I had a bad experience somewhere and had to go home, I’d make sure the next day (or when I was well enough) to go back and rewalk my steps. Much like going back out into the garden and picking up the pick ax again, I was determined not to create phobias on top of the “normal” ones that withdrawal hands us. (I often returned to the “scene of the crime” after a major panic attack, as well.)
The best way to handle the big scary symptoms are the practice of acceptance and living your life around them as best as you can. Some days you won’t be functional enough to push through the symptoms. That’s okay. You can honor the need to rest, or the need to be away from stimulating circumstances. But on the days you can muster the strength and the courage, it’s good to push yourself even a tiny bit, to do what you need to do. Some days I had to push myself just to walk around the block as I was so debilitated. I was always proud of myself when I could accomplish it. (In the early days of withdrawal I had to use a walker, then I graduated to a cane. Finally, I could walk unassisted, even if I was dizzy as could be!)
I am a big believer in acceptance, patience, and pushing yourself to do a little bit if you can when the alarming symptoms of benzo withdrawal hit. Of course, I am talking about symptoms that are not life-threatening. Ignoring a seizure wouldn’t be a good idea, for example. How are you handling the scary symptoms in benzo withdrawal? Please feel free to share your thoughts with us.
When this first happened to me I didn’t even think it was from Benzo withdrawal. I was looking for a neurological issue and I even thought I may have brain cancer. After being checked out by a neurologist and given a clean bill of health, I still wasn’t convinced. I was diagnosed with vertigo and got treatment for vertigo which helped me recover. Once I realized what was going on, I forced myself to move. I would go for walks every day, no matter how short. I would force myself to go to work even when I was feeling bad. I would think of my brother who was battling cancer and it gave me strength. But most of all I taught myself to just “Trust Yourself”.
I am currently trapped in the benzo prison. I have tried multiple times to quit, only to become so sick, I would end up in an emergency room, for a temporary benzo fix, or, in my worst moments of overdosage or withdrawal,I ended up in a pychiatric hospital.I am 43,with three fabulous kids, a awesome husband, and I have been on and off XANAX for 10 years. What was originally an answer to prayer, quickly became the near ruination of my marriage, even my children begged me, to please get of Xanax, stating it changes me from a fun happy mom, to a stuck in my room emotionally unavailable drag. The problem is no one warns you about KINDLING. And this takes place, when you take XANAX longer than 3 months, I have even read it can occur sooner. ONCE KINDLING OCCURS, WITHDRAWALS CAN LAST UP TO TWO YEARS. SO NATURALLY, PEOPLE TRYING TO QUIT, BEG TO GO BACK ON THE DRUG. My former psychiatrist who prescribed it for PANIC DISORDER, had me on 4 mg as day, for so many years, when a new doctor took me off it, I went crazy. I could not eat, walk, speak properly, my heart felt like it was bursting out of my chest, my blood pressure skyrocketed, chest pains set in, then sweats, then chills, then as you described, a feeling of intense intercranial pressure. And no doctor would give me anything to ease the suffering, lest I landed myself in the hospital. My family kept telling me, JUST QUIT!But, I always returned to the drug, so that I could be a wife and mom again, not a basket case. This drug is on my WORST DRUG EVER list, and I truly believe due to short term memory loss, resulting from the long term use, it has stolen years from me and my family, some years I barely even remember. It makes me cry inside. I believe we all should work together, FIND A SAFE HEALTHY WAY TO GET OFF THESE DRUGS, MOST ESPECIALLY THE STRONGEST BEING XANAX. I believe this drug should be made illegal. I know many besides myself who are in agreement to the ruination this drug leaves in its wake. Lets all spread the word. Even if you have PANIC ATTACKS, THESE PILLS IN THE LONG RUN, MAKE IT FAR WORSE. Jesus be with us all, as we try, and try again, to STAY away from BENZODIAZEPINES. Amen.
“But on the days you can muster the strength and the courage, it’s good to push yourself even a tiny bit, to do what you need to do. Some days I had to push myself just to walk around the block as I was so debilitated”
That is where I am right now. I have to push myself to even do the smallest things, like even writing this. But, I find that it has it’s benefits when you push and accomplish the task.
And, Stefanie, Benzo Prison is a great phrase! That’s just what it feels like!
Dan
One of the most important things you need during withdrawal is a supportive family and household. If your family cannot be supportive and is only pushing you down, you need to cut them off. You cannot heal when you’re around abusive people.
As for me, I am most fortunate in that aspect. My wife is very loving and supportive.
To Dan,
You are blessed because there still exists a stigma against those suffering from mental illness. People don’t take benzos to get “high”, they have a legitimate medical issue.
Thank you so much for your encouragement. Reading this gives me comfort in knowing that I’m not alone and I’m not crazy! Some days are almost too much to bear as I’m only 5 months off of klonopin, and it seems like it will be forever before I get my life back. So every story I hear of successful recovery gives me hope. Thank you and God bless you!
Having been prescribed valium for breaking my back 14 years ago 8mg per day, the doctor took me off them c/t. I have been extremely ill since Sept 2016 and cannot get out of bed only to go to bathroom. My life is disintigrating before my eyes. I am dizzy have spots in front of my eyes and my brain feels like it is doing sommersaults. I never get any support from my doctor who prescribed me these nor will he expain what is going on. I am petrified!! I have been off work and it looks like I will loose my job. I have experienced things that no human being should ever endure, this is barbaric I don’t know how long I can go on.
I have POTS pretty bad. Sometimes all I have to do is bend over to pick something up or just get out of bed. My heart thumps so hard and fast it’s scary, but I know what it is so I either ignore it, tell it to go away or just sit or lay down till it passes. I can’t sleep on my left side because of the thumping in my ear. It seems to calm down alot in the early hours of the morning, like 4 or 5:00. Don’t know why, but I welcome it. It’s annoying and debilitating but I know I won’t die. Haven’t seen a doctor in almost 3 years but while on Klonopin I had every specialty doctor you can think of. Nothing in my body worked properly. But now , being off 31+months, things are “clearing up” like Hypothyroidism, Mitral Valve Prolapse, Hypoglycemia, Gastrointestinal problems, high cholesterol, unexplained weight gain, vision problems, etc . etc. The country thinks that if you are not on 5 or 6 medications by the time you’re in your 60’s, you aren’t normal. I’m happy to say I’m not on any meds now and I feel like I will actually have a LONGER life. I do have a question though. Would exercise help us to overcome the POTS, like would it help to strengthen the heart muscle? I exercised more a year ago than I am able to do now. Also how do people get “high”on a benzo when it’s a depressant? Thanks Jennifer, for addressing this symptom. I have not commented for awhile as I have been in a “worse than normal” wave for a couple of weeks. Oh I forgot to mention that if I consume sugar my heart rate soars and I get the “whole body on fire” thingy going. Will be soooo happy when we all get out of Benzo Prison!
I’m so glad to read this as at 33 months off a low dose of valium. I am forever (or my brain is) looking for reasons why I’m still like this, and POTS is the latest. Especially as feeling more beaten up as time goes on. It is so hard sometimes to believe a drug that has not entered my body for over 33 months now has done this. Hoping one day it will not just be surviving each day.
I’m so glad you wrote this and thank you for doing so. At 33 months off a low dose of valium I am (or my brain is) forever looking for reasons as to why I’m still so sick. POTS is the latest and I’ve had all the others too. It’s so hard to accept that a drug that has not entered my body for over 33 months has done this. No CT either or years and years us (2). Evil, evil drug and the non recognition is a massive sting in the tail.
Oh and the head pressure too. Thankfully this is not listed as a symptom of actual POTS.
To Catherine,
Why were you put on Valium in the first place? It may not be the drug, but that your original symptoms are coming back. When I first started college, I suffered from extreme test anxiety, but I just lived with it. As a result, my grades suffered and I didn’t realize my goal to become a physician. So for 20 years I dealt with anxiety issues until they became unbearable. As I withdraw, I am expecting these issues to come back. As with any drug, there are side effects, and before age 40 I avoided ALL prescription medications. As we age, it’s going to be more and more likely that we will need some sort of medication, it’s our choice whether or not to take it. I blame myself for getting on Ativan, because I knew about the addictive properties, I was just so miserable that I became desperate for help and I tried multiple alternatives, none of which worked for me. Ativan was my last resort and it worked for me at least for awhile…
When my brother was diagnosed with cancer, he was told that there was no cure, but he could live longer with chemotherapy. He chose to go on chemotherapy and live with it’s side affects, but on the plus side it gave him three extra years to be with his family. No one can force you to go on a drug, keep that in mind when any doctor offers that option.
I am 3 months off of a Xanax addiction. Used the RX for approximately 2 months daily, and it took more than 15 months to taper off (through the prescribing psychiatrist). The taper was extremely difficult – GI disturbances, nausea, palpitations, insomnia, tinnitus. Symptoms have continued in the current withdrawal period. Now, I sleep every other night and am basically non-functioning every other day as a result. Can you speak to your sleep-related issues? I am looking for hope. Thank you.
Barbara,
I can relate. I was put on Ativan for insomnia and now that I’m tapering I am having trouble sleeping. I tried cold turkey and after one night without sleep, I went back on. My guess is that your sleeping issues predated your Xanax use, so now that you’re off they are coming back. You need to find some other way to get you to sleep, like weight lifting, meditation or prayer. One thing I did was to sleep in a separate room than my fiancee, her snoring made it difficult for me to get any sleep even on a good night.
If you need to go back on a Benzo, try a longer acting one like Librium or Klonopin and see if that helps. I suffered with insomnia for 20 years before I started on a Benzo, so I know what you’re going through. There is no simple answer I’m afraid. But know that you’re not alone in your suffering.
It’s not a good idea to go back on a benzo. Klonopin is very, very powerful and wouldn’t be one to reinstate with, IMHO. Just because someone had problems with insomnia in the past doesn’t mean that they will continue to have problems once they heal from withdrawal. Let’s not assume that the past issues will return and be a problem. Let’s think positively!
My biggest issues are cluster headaches, brain sensations and low blood pressure. I feel my brain firing trying to figure out this scattered mess. I think my low bp has to do with all the overstimulation in my brain. And, my heart is working so hard attempting to function normally with a scattered brain. The endless search for remedies, insight or slight relief is frustrating. I have always been very sensitive to my body, and I feel every uncomfortable minute. Acceptance is so so hard.
In response to Jennifer:
My post was not negative. And I did not recommend going back on a benzo. Barbara did not tell us why she used Xanax. And yes it is very common that past issues with insomnia will return. I respectfully disagree.
I wakeup everyday terrified of my symptoms. Scared of what the day will bring. My headaches, and just feeling so so sick. It frightens me. I fear feeling this way. It is so scary for me. I seem to have far more symptoms then other people. I’ve tried acceptance, and each day my ability to handle the intensity get’s less and less. Distraction doesn’t do much. This is so hard. I pray for relief.
I know how hard it is to accept the illness of benzo withdrawal. All you can do is to do your best at acceptance. It will become easier, in time, most likely. We learn to live with our “new normal” until our real, permanent normal arrives. I am sorry you are suffering so much. Some of us get hit hard, I know.
The worst symptom I am experiencing after being on a low dose of clonazepam for 4 months is complete lack of sleep. I simply cannot doze off. My psychiatrist has prescribed trazodone but I am just so scared to try anything else. I fear I will never sleep again. I go on 1 hour walks and I have quit all caffeine and coffee. I had my last dose of clonazepam beginning of January.
Temporary doesn’t feel temporary. I need to work, and can’t. Trying to do this alone is so hard. Even my doctor’s are concerned about my level of suffering. I’m no spring chicken, and it’s really taking a toll on my health.
I know. Temporary can be a long time in benzo withdrawal. I’m well aware of that. Our suffering can be quite severe, I know. Mine was awful. But we do recover, in time. Not much we can do except to hold and wait it out. There are no drugs that alleviate benzo withdrawal or to force our brains and bodies to heal any faster than they are hardwired to heal. IT’s frustrating, I know.
Few mention the lack of sleep. I’m ‘tired’ (ha ha) of not being able to lie down and just sleep like I used to do. Get in a bed and float away. Now I ‘sleep’ on my couch (feel ‘safer’ there, like the close surroundings somewhat keep me contained in my suffering). Well I don’t “sleep” I shake, pass out maybe for 3 hours and awake with heart pounding, head hurting and cursing the world, wondering when this will kill me. I WANT to sleep. I’ve tried histamines. I might, just might get 5 hours of being knocked out but after a few days it seems they don’t work. I’ve tried a ‘cocktail’ of an herbal tincture, supplements like tryptophan, GABA and yes the small glass of wine. Might get 4 hours of being knocked out. (can’t call it sleep, that state is NOT sleep) I’m holding at 3 mg of Valium and can’t imagine taking less even though I’m supposed to be tapering, as the symptoms are horrific. You state “we do recover”. So we are supposed to suffer for what? Months? Years? My life is being ruined, I’ve lost years to benzos. No one understands that is in my personal life (IF you can call it a life). Am I bitter? Yes. Mad, yes.
I’d hazard to guess that most of us have felt the bitterness and the anger you felt. I sure did! If you read my posts from the start of my recovery, you’ll see that I was right there with you. It’s only natural to feel that way as we realize we don’t have control over our lives. However, as time goes on, we learn that being angry and bitter don’t help us heal. We have to let go and begin to look at life through a more compassionate and kind lens. Some of us do take years to heal, that’s true. But that doesn’t mean that we suffer for years. When we practice acceptance and gratitude, we can rise above suffering. We have a choice to view our lives with a bitter heart or to accept life on life’s terms and be okay. I finally got so tired of the anger and bitterness in my life that I wanted to let it all go. I made the choice to experience gratitude even in the hard times. IT wasn’t easy. I am not saint. That’s for sure! But learning to let go and accept life and to find ways to keep an open and loving heart did wonders for me. It helped me heal. You may not be in a place where you are ready to move on past the anger and bitterness. That’s okay. It’s a journey. We make spiritual progress, we don’t reach perfection. I still have to work at it myself!
Working towards acceptance and gratitude is so very very hard. My main symptoms are in my brain. Every sensation terrifies me. The suffering is unbearable. I’m praying that the suffering will pass and I can get to a tolerable level in this process. I sleep, but have unpleasant dreams that impact me psychologically. I’m certainly not the person I used to be. My family doesn’t like or understand this “new” me. I look for progress, but haven’t found any. I’ve lost so much in trying to get this drug out of my life. I would settle for having more tolerable symptoms. I feel as if I wasted two years tapering, only to find myself worse off. I wish for the day when things ease and I can open my heart to acceptance and gratitude.
You say that klonopin is very very powerful and that would be a bad benzo to reinstate on , now I’m concerned because I’ve gone from xanax 8 Mgs to valium 20 Mgs which nearly killed me and now I’m taking klonopin but find in very hard to reduce on , do you think it would be better to reduce from valium , even though u find valium is to weak and does notning , what to do , even the klonopin doesn’t work very well , should I try and reduce from klonopin or slowly switch to valium ??
I think our symptoms are due to drug induced autonomic (sp?) dysfunction. Our nervous systems are slammed to such an intense degree. From head to toe. The impact varies from person to person. This benzo class of drugs impacts our receptors in very severe and different ways. Even the different types of benzos act differently. For me it’s been horrible. My list of symptoms is endless and beyond unbearable. I pray for strength and things to become more tolerable-for ALL of us.
Also praying for you as well. I will never look at taking meds the same again. I never imagined that coming off klonipin, even only after a few months of taking it would become a nightmare. I didn’t know i could become an unwilling addict. I think the only good thing about this is that I have more compassion for others and their suffering, self inflicted or not. I no longer judge.
So, this is what is slowly killing me. 23 and I am never going to see my thirties; I live in the body of an 80 year old, and I think I can tie most of it back to klonopin. The thing is, so many people make a profit over this drug either from money or making someone calm enough to deal with, that I was never taken off of it only a few weeks after I started raising the alarm. Now I am dependent on this poison, which is slowly destroying my brain (memory loss, dysautonomia, inability to sit down, migraine that never really ends).
This drug should be banned from the market, and marketing it should become a criminal offense. People shouldn’t have to die in their twenties, or become so crippled and heartbroken that their lives are effectively ruined for how many of those years they have left. This drug is poison and a dangerous substance not meant for human consumption, period.
I am so sorry that you are so benzo sick. Please know that you will get better. IT just takes time. But you will feel like a young person full of joy and passion for life again. Please take good care of yourself. You are worth it!