A few people have reached out and asked how do you explain withdrawal to friends and family? How do you convince them the symptoms are not “all in your head?” Of course our symptoms come from a damaged brain which is located in our heads, but that’s all.
I kept two stories from the now defunct Benzowithdrawal.com website. (You can still access information from it via the way back machine. Simply put in the website in the search bar and presto!)
Here is one of the posts that helps me a lot when I feel my recovery is not happening, or never ending.
“This is the worst addiction there is. These drugs should be banned.”
It was right after my 25th birthday. I drank too much in my teenage years and carried over into my early twenties. I wanted to make a positive change in my life so I quit drinking. About two weeks later I had an anxiety attack. I ended up in the ER not knowing what it was and they said I was fine and sent me home.
I started having a lot of these attacks and went to see a psychiatrist (This, as I look at it in retrospect was the biggest mistake in my life.) I went to see this doctor and explained that I had a problem with alcohol in the past and did not want to take anything addicting and was basically looking for some type of therapy to help. Well, this guy explained that this was a “chemical imbalance” and that I was self medicating by drinking. (Funny, I never had this before the drinking.) Then he recommended Klonopin which he said was the least addicting drug for this condition and that I would have no problem stopping it if I wanted to. (What exactly does “least addicting” mean?)
Well, he started me out on 2mg a day which would work for a while and then stop working. He would then up the dose. I was a zombie on this crap. I could barely remember anything and would often get lost driving in areas I knew well. I was going to school at the time and not doing too well. I wanted off this crap so I stopped on my own. All kinds symptoms started happening and I had no idea it was withdrawal. I lasted a few months and went back on the Klonopin. This did not help much but my psychiatrist said: “This is all due to your anxiety disorder and you need this medication like a diabetic needs Insulin.” (Funny how there is no test for this imbalance.)
After 4 years of this crap and numerous attempts that ended in failure I started losing weight and having problems with my esophagus. I was also having incredible anxiety attacks and the Klonopin was doing nothing for them. I was hospitalized for a heart arrhythmia known as bigeminal PVCs for which they could find no cause. I was also hospitalized for extreme abdominal pain. I went to see a gastroenterologist, had all kinds of expensive and unpleasant tests, and nothing wrong was found.
After 2 more years of this, multiple doctors (who all said: “Klonopin does not cause that” and of course the psychiatrist and his whacko chemical imbalance, diabetic, insulin theory) and a worn out welcome in the emergency room I just gave up. Over the next few months I got much worse. I was having reverse peristalsis which is when the muscles in the esophagus go in reverse making it almost impossible to swallow. I lost another 50 pounds and looked like a skeleton. I was so sick I went on disability and went back to the emergency room where the doctor told me this was from depression. Well, at this point I was suicidaly depressed. He gave me Xanax and on the next visit, Ativan. I just wanted to die.
I have twin boys and was wondering how they and their mother were going to get by without me. They were 6 months old at the time. I was also completely going insane, I had fits of hysteria and I cried all the time. I went to see a supposed expert psychiatrist who put me on Remeron. I broke out in a rash and itched from the inside and felt like peeling off my skin. I called him and he said to keep taking it and see what happened. That was it for me and psychiatry! This is a professional, “one of the best”! What a sad state of affairs!
I then went to a gastroenterologist that a friend of my wife recommended. This was the first good doctor I had seen since this all began. He gave me tests for cancer, aids, an endoscopy and a colonoscopy, all kinds of blood tests and tests for parasites. All were negative. I did not want any more tests so they gave me the maximum dose of meds during these tests and could not put me under. It was horrible.
A few weeks later I went back to the emergency room and was given another prescription for Xanax. By this time I was almost too weak to stand up and spent most of my time in bed. By chance a miracle happened, or at least I think it was. My wife pulled a muscle in her back and went to see a doctor she had picked out of the blue on her health plan. During her visit, she was explaining my problems to him and then mentioned the meds I was taking. He said: “Wait, back up, he’s been taking what? For how long? You need to get him in my office right away.” I was not too optimistic at this point and was mentally ready for my death but went to see him anyway thinking what could it hurt now anyway.
I went into his office on Monday, October 22, 2001. I was shaking like a leaf all the time at this point and completely psychotic. He explained that all my problems were from the benzodiazepines. He then told me he was a recovering addict himself and took Dalmane for 20 years and knew first hand what benzo withdrawal was. He told me that he did not feel any better for 18 months after stopping and that this was not going to be easy. He said that I could taper over a 8 month period and it would be less intense but, from my current condition, he did not think I would make it that long. I was sent to Las Encinas Hospital where I almost died that first night. I had seizures, hallucinations, my body burned like it was on fire and every muscle in my body twitched. I was loaded up with Phenobarbital and Neurontin for two months. But, almost immediately the esophogus thing stopped and I was able to eat. I put back on 50 pounds in the first 2 months. I stayed there for 16 days and spent 6 months at home, mostly in bed.
At first I could only walk up and down the street and was exhausted. My skin and scalp burned, I shook all the time, I had muscle spasms and everything looked like it shimmered. I had hallucinations, felt like I was going insane, had wicked nightmares that I would wake up screaming from, barely slept at all, had anxiety and panic attacks that were indescribable, jaw pain, tooth pain, derealization, depersonalization, electric shock feelings in different parts of the body. My brain felt as if it was moving around in my head. I had fatigue, irritable bowel (though nothing like when I was on), squeezing pains in the center and under the right side of the ribcage.
I am now 10 months off and I am much better and slowly recovering. I still get waves of symptoms but just had a window of relief that lasted a week where I felt pretty good. I get windows of feeling fine and know I will recover in time. I go to 12 step meetings for emotional support although these people can in no way understand benzo withdrawal. Coming off alcohol was a piece of cake. This is pure hell.
This is the worst addiction there is. These drugs should be banned as I can see no legitimate use for them unless there is a market for brain damage. When in rehab I saw the speed freaks and heroin addicts get better. They were playing basketball after a few days while I could barely move. The GP I have now is great. He understands first hand what I am going through. He does not prescribe them past 2 days and says even people not prone to addiction get hopelessly addicted to them. The drug companies are indiscriminate destroyers of lives, driven by profit and hidden by lies.
I have faith this will all end and I will get better. It is slowly going away. I pray to God to get me through this and that all who are suffering can find the truth about this medication and start their recovery.
Take care and God bless,
Corey
Heres an update on Corey’s story he just emailed me today.
“I am fine now, took awhile though. It took about 3 years before I was completely symptom free.”
Corey
I carry this letter with me in my purse. I read it often. We do heal. It just takes time. A lot of it.
Jennifer
I can relate to this on so many levels. I was a long term user and started to have numerous medical problems. I had many doctors treating me as a hypochondriac because they could find nothing wrong with me. I have come to learn that I was in a constant state of withdrawal because I was an as needed user. Last year I tapered myself and it was one of the hardest battles of my life. What am I left with? Five month out I developed heart PVC’s. I am told they are benign but they are still very unsettling. I also have a constant hissing in my ears as well as my startle reflex is in over drive. I get muscle twitches from time to time still but nothing like it was.
I cringe when I hear someone is taking a benzo and cannot believe how many people around me are on them and act like it is not a problem. Its a great drug for short term use, less than two weeks in trauma situations. Other than that people need to realize it is a powerful drug that will alter the entire central nervous system and organs.
Thanks for being brave enough to come out.
hey. last summmer of 13 I had a traumatic health scare that was never figured out and lasted for the rest of the year. during this time I was put on klonoplon 1mg a day. it was my crutch for when things got bad. I had them in my pockets like breath mints and popped them when something came up. I went to drs and got thouroughly tested. didnt want to leave the house for days but was encouraged to force my self to do stuff. so I did and got back into alot of my old activities but always had the klonoplin as my crutch when I felt something was wrong. it was odd cause it was the only thibg that worked for anything like pain. so life started to feel good again but I still had the klonoplin. I took less frequently and started drinking again on social occasions. so I decided I wanted to get off klonoplin and my doc said I should have no problem getting off at the frequency and the amount I was using. so I kust wet from 3xs a week to 2xs week and then to as needed. I felt everything was going good. then one day I started having palpitations when lying down. I had these in the past but not often and lasted a short time. I still managed to exercise and get out but they got worse. I took my klonoplin and they wrre still pretty bad with arrythmia. now granted I had a full cardio workup just 6 months prior when I was trying to figure out what was going on. then the arrythmias became persistent and all day and it was debelitating. couldnt work couldnt focus just wanted to lay down all the time but yhat made the irregular beats worse. so then I thought I had a serious heart condition that was coming out cause I thought between that 6 months drs had me try so many medications. yet when I see the drs they say it cant be from klonoplin but I tell them if I take a high dose, like 1.5mg (high for me) I feel comfortable. still get the pvcs but feel ok. but it doesnt last long as when the drug wears off I still get these and it makes you think all sorts of things about your health. still the drs dont think it has to do with klonoplin but yet cant explain anything physically but say theres anxiety and stress. I then took a cortisol am test that shows a compound that the adrenal glands produce in yhe blood when high anxiety or stressed. mine came back very low so y hat says I wasnt chronically stressed. but now from self diagnosing that I am physically addicted to this and it causes all kind of issues when lessening the usage. the arrythmia is the worse, especially when its constant evenv at sleep because you just dont know if this is escalating to something serious. just wondering how you guys cope? how do you get work done and everyday activities? I have family to support but this is holding me down to where I cant do anything. I see a psych soon but after reading comment on others, not sure if thats recommended now. thanks in advance but my big deal is coping and being productive while trying to figure out how to get off this stuff
I had skipped beats so often. I learned to ignore them. They aren’t usually dangerous. They often appear during withdrawal. Mine were so bad at times it was if a gorilla was thumping around in my chest. They are better now. Much better. If you can relax about it you will feel better.
Hey
Thanks for reply.
Thats the thing. My place of relaxing is when they seem the worse to me. And sleep is disturbed by these. Had a very thourough testing 6 months prior and then I never had a issue. So im not really sure how I can ignore them or how to. Seems difficult when they change the way you feel and are persistent. You know what mean?