How many of you had to diagnose yourself with benzo WD?

How many of you were forced to diagnose yourself with benzo WD or that the benzo was causing intolerable side effects?

 

If a doctor DID diagnose you with WD, were you told that it wasn't possible to experience symptoms beyond 30 days off?

 

I ask these questions because I am concerned how many people there are out there who are suffering on OR off these drugs.

 

If the doctors lack the ability to diagnose benzo symptoms or tolerance WD while people are on these drugs then there must be thousands and thousands of people out there who are suffering. This suffering could be limited to mild irritability, anxiety, depression, etc, or as severe as psychosis, severely reduced functionality and so forth.

 

Not to sound like I am blowing my own horn but I'm a pretty smart guy. I am also the kind of person who has learned some hard lessons that showed me that life isn't what it seems to be on the surface, which has given me the ability to question things that other people might not think twice about. Such as the fact that you SHOULD be able to rely on your doctor to know what is best for your health.

 

If it took me as long as it did to figure out that my doctor was inadvertently poisoning me, there have to be a whole lot of other people out there who are being cheated out of life due to the negligence of the medical community.

I too had to diagnose myself.  My doctor won't even entertain the thought of benzo withdrawal.  He has repeatedly told me that benzo withdrawal would not last more than 3 weeks.  I have had a ENT specialist tell me it could be benzo withdrawal but there would be no way to prove it. It's very frustrating to not be validated by the medical profession.  I totally agree with you about the number of people out there who are suffering due to benzo withdrawal and they probably don't have a clue what's wrong with them. I'm sure their doctors are pushing more pills on them to "try" and cure the problem.  I have refused to take anymore pills other than blood pressure medication and Premarin (am looking to get off of this one also.) I have also tried educating my family and friends about the danger of taking benzos.

I diagnosed myself. Once I was this the throes of w/d...I knew I was in big trouble. I did the research which confirmed my fears...though I was panicked and was not quite sure what to do. I called a friend who suggested I try to ride it out. I took the pain and all those strange sensations as best I could. I finally called a health line; the operator thought it was nerve damage, after she talked to the resident nurse. I told them I was w/d from a benzo. They told me to get myself to the hospital...just to make sure it's not nerve damage. Got to the hospital, repeated that this was w/d from a benzo to the attending nurse...waited in the waiting room for a good 4 hrs taking the brunt of w/d. Got put into the psyche ward...did blood test...urine test and finally a social worker walks in. I tell him I am w/d from a benzo. He asks if I am suicidal...no I am w/d from a benzo. He leaves...I have to do one more urine test. The social worker and the doctor walk in...my test results are all good. I'm healthy as an ox. They can't find anything wrong with me...why am I there exactly. I stopped taking my benzo and am w/d from a benzo...the social worker pipes in that I am not suicidal. The doctor asks why would I do that...I just wanted off is my reply. The social worker pipes in again...I have been on a benzo for 27 years...there's nothing wrong with me as he is smiling with this glazed look in his eyes. Ok just take your next dosage when you get home and you should be ok. Next day I experience the worst panic attack ever. I am trembling like a mad man. I am running around like a nut ball. I go to see my psychiatrist...I explain my situation...what happened...I was w/d from the benzo. Really, did you wean off slowly. Not really...I didn't know we were supposed to wean. I tried to cut them off slowly though. Go to my doctor a few days later...what happened...I was w/d from the benzo you prescribed. That's not possible. Yes it is because I ended up in the hospital and now I have suicidal ideations. Did you wean? Not really...I didn't know we were supposed to wean. I tried to cut them off slowly though. Well then it's just you...you will probably need this medication for the rest of your life. Everything you described are all symptoms of depression, anxiety and panic attacks...haven't you been dealing with these most of your life. Yes...I say but it's never been this intense and I've never been hit this hard. Would you like something to take the edge off...perhaps Ativan. NO THANK YOU. I WANT OFF THESE DRUGS.

Yes, I had to diagnose myself as well. After being on Xanax for nearly 8 years (same doctor the whole time) I kept trying to stop--I now believe I was probably in tolerance and inter dose withdrawals. I called my doctor and asked him how to get off it and he gave me a 2-3 week schedule. Of course that didn't work even though I kept trying. At this time I started drinking wine at night thinking that would calm my "nerves". Little did I know there was a cross-tolerance between benzos and alcohol.

 

In this fog I realized that I somehow needed to be medically detoxed. I called the doctor, told him my situation and went to a friends to "detox". My doctor gave me a 5 day taper. I was awake for five days shaking badly. At this point I sensed I shouldn't be in this remote, rural area and needed to go to my hometown (a large city). I won't go into the withdrawals of the next few days but my sister and I decided I needed to go to ER. The doctors there were frightened and were calling around to find specialists who would know what to do. I was put in the hospital on a medical unit and sedated for 3 days.

 

I reinstated on Xanax 18 months later, (thinking it was the combo of the benzo + alcohol that was so bad)  not understanding the dangers of benzos by themselves. Of course I had fired my originating prescriber, but when I tried to come off of Xanax again, myself, I couldn't and the medical professionals I was dealing with then said maybe I needed to stay on them for a while longer (there had been a death in the family and tremendous stress).

 

I'm on my fourth doctor now spending time, energy and money to cross-over to Valium to come off of Xanax. I am doing a dry-cut taper off of Xanax now because I'm not waiting around for a medical professional to figure it out. Truly I believe most medical professionals think that it is in patients heads and not in their brains, because as long as you aren't having a seizure then you must have an anxiety disorder. I blame the pharmaceutical companies for marketing benzodiazepines to doctors who have no clue what these medications do long term.

 

Anyway, I don't mean to sound dramatic. I'm so grateful I found these forums, and I too, wonder how many people are suffering out there with no computer and/or researching skills. I cut 12.5% 2 weeks ago and am doing really well with that. In a few days I'm going to cut another 6.5% and keep tapering from there. I listen to my body now instead of the prescribers, plus I'm very determined and regimented about this so I'm sure I will be alright.

 

 

How many people go to their death bed experiencing side effects and tolerance WD from benzos?

 

"You will probably have to take these for the rest of your life"......hearing that multiple doctors have said something to that effect makes me SICK. It's like going to a doctor complaining about a small tummy ache and getting prescribed medication that gives you a bleeding ulcer. Then the doctor gives you more meds to help you deal with pain without stopping to think for one second that your problems might be caused by the original medication.

 

I had to diagnose myself. My doctor couldn't have been more clueless. Sure....she acknowledged that addiction was a possibility, but she failed to make any kind of connection to the fact that it might be the drugs that were making me more and more ill. "I think you need to be on something". That was her solution.

 

There is no doubt in my mind that had I not put 2 and 2 together that I might still be in the benzo loop. Even if I switched doctors (which I would have had no reason to do except for the fact that she stopped practicing) what would have been the chances that the new doc would have been able to come up with a proper diagnosis? More drugs, more drugs, more drugs. The quick, simple and easy solution that keeps you coming back every month.

 

So here I am, 6 months off of a drug that has substantially reduced my quality of life for the past four years, and I am still suffering. Just another painful lesson about having blind faith.

 

 

Florida - I have been thinking about this question myself a lot.  My doctor is considered benzo wise but still didn't diagnose me correctly.  He chalked it up to my sensitivity (which is I have) to meds.  I think a big part of the problem is that if benzos are used "correctly" for very short periods (6-8 weeks max) the instances of w/d are greatly diminished.  Since this is what the PI sheets on the meds say (along with "don't stop abruptly" and "some people will experience difficulty in withdrawing") when protocol is followed w/d is less common.  It is when the docs prescribe for longer periods (off label in a sense) do the instances of problems increase.  So, medical schools teach that benzo w/d is rare but don't teach that this is the case ONLY when protocol is followed.  Even then, some will experience difficulty but it is a lot less common.  Best, Bill

I went to see my Doctor because of issues with insomnia. After a very brief consultation, she gave me a prescription for Ambien and Ativan, with instructions "to take as needed". I followed her instructions. Why wouldn't I, she was a Doctor, she must be wiser than me.

 

The (take as needed approach), caused me to be in tolerance withdrawals for over two years. Of course at the time I had no clue as to why I was getting sick all the time. I was having neck and shoulder pain, the chills, and many other strange things that I had never experienced before.

 

I would go back to my Doctor, have some tests, and was told that everything was ok. Still trusting my Doctor, I didn't question her. The fact that the drugs could be the cause was never mentioned.

 

One night, while sleeping, I awoke with the most intense burning and wave of heat enveloping my entire body. I was really scared. I spent the rest of the night in a panic mode.

 

The next morning I went to the Doctor, explained to her about the intense hot flushes, her reply was, ''you had too many covers on".  I told her that it scared the hell out of me, and her reaction was to give me a prescription for Zoloft to ease my anxiety.

 

When I got home, I was so ticked off, I tore up the Zoloft prescription, threw away the Ambien and Ativan, and went cold turkey.

 

So yeah, I had to figure it out for myself. I have never been back to that Doctor. Her lack of knowledge about Benzos has taken over two years from me.

Hey Florida Guy,

I totally agree with your metaphor of the tummy ache to a bleeding ulcer. I was prescribed benzos for anxiety without any kind of search to find out what was causing the anxiety in the first place. Then the worst side effect of recovering has been .... you guessed it... ANXIETY. I mean for-pity's-sake. Talk about ironic.

Doctor said I couldn't be addicted after just a couple weeks. I knew something was wrong though when after the 10th day my anxiety started to get worse and I started to increase my doses. I felt kinda ill and nauseous too. Three doctors said the withdrawals shouldn't last after the drug is out of my system, so "Would I like some medicine to help with my Anxiety". Crazy stupid.

When I look back, it's all so very apparent what was going on with my body/mind. It's that old 20/20 hind sight.

But, on the bright side, this time my foresight has improved. I will never believe that a doctor knows any more about medicine, than I know about animation (What I used to do for a living).

It is disturbing the lack of knowledge in the medical community. I plan to spread the word to doctors I deal with in the future. I'm going to get an anti-benzo tshirt too.

-Tanya

 

My health started to go south after several years on benzos. I saw several primary care doctors, my OB/GYN, a general surgeon, an ENT, three GI docs, and when things started to get really bad, an infectious disease doc (they thought I had malaria or something). And of course a myriad of ER docs/visits. AND of course the psychiatrist who was prescribing the benzos.

 

Not one of them ever mentioned it could be the benzos. I figured it out on my own, years later. And I work in medicine and mental health. So, like Florida, I am very concerned about the general population.

 

Libby

I took Clonazeapm off/on for YEARS - not having a clue I shouldn't do that.  I would take one pill here, one pill there...just to get me through anxiety attacks (that were NOTHING compared to what I experience in w/d).  Then when I was about 30 years old, I was told to take it daily (1mg) for the rest of my life...and "take up to 3mg a day IF needed".  I just thought "ok...if my doctor says it is safe, then I guess it is"....never thinking to do my own research.  In the meantime, I got worse and was put on 2 a/d...Paxil, and then later Cymbalta.  THEN, Feb. 2010, I was giving up and not sure what was wrong w/ me, so my new family doctor tried putting my on Cipralex...I was fully suicidal w/in 48 hours on that drug.  The only thing that saved me was my husband reading the signs and knowing I was not myself.  My family called a pharmacist and told her what was going on, and she said to get me off of the SSRI immediately.  What a journey!  Then I was in what I think was tolerance w/d all last year b/c I continued to stay on the benzo (I was now 32 years old).  My doctor never warned me.  It wasn't until I saw a psychiatrist last year who gave me some GREAT therapy (CBT) and then suggested if I wanted to truly be "med free", lets get me off of Clonazepam.  So she made my first cut of .25mg off of the 1mg of Clonazeapam...and BAM.  I was hit w/ so many s/x for months before I thought to do my own research and found out about benzo w/d.  Initially my psych. thought it was all normal, but as the s/x continued she said that I should be getting better and ready for another cut and suggested I needed an SSRI and even ECT b/c I was so depressed.  It was a horrible time.  I thought I was losing it.  Eventually she gave in and agreed it could get this bad and I've taken HER along my journey and taught her about benzo w/d.  She's never taken patients off of them before successfully, so I was her "guinea pig" and her first patient to cross over to Diazepam.  I'm not angry w/ her to be honest.  She didn't know....simple as that.  I'm more upset w/ my old GP who prescribed it and told me I could take it for life.  At least my Psychiatrist has stood up to this and admitted she didn't know...she's even researched it more herself and PERHAPS I've helped her change the way she looks at Psychiatry.  She's been a good support even though she really doesn't get it. 

 

So LONG story short...lol...I had to "Google" to find out what was wrong w/ me...otherwise I was convinced I truly was crazy. 

 

All the best,

Schatje

An RN told me what was going on--he, himself, had gone through Klonopin withdrawals. He had to tell me on the sly though. I also found this site--a wealth of knowledge--a life-saver--a beacon of light. No telling how many people are suffering these horrific symptoms, because they trust  medical "professionals" with their health. T2

How many of you were forced to diagnose yourself with benzo WD or that the benzo was causing intolerable side effects?

 

If a doctor DID diagnose you with WD, were you told that it wasn't possible to experience symptoms beyond 30 days off?

 

I ask these questions because I am concerned how many people there are out there who are suffering on OR off these drugs.

 

If the doctors lack the ability to diagnose benzo symptoms or tolerance WD while people are on these drugs then there must be thousands and thousands of people out there who are suffering. This suffering could be limited to mild irritability, anxiety, depression, etc, or as severe as psychosis, severely reduced functionality and so forth.

 

Not to sound like I am blowing my own horn but I'm a pretty smart guy. I am also the kind of person who has learned some hard lessons that showed me that life isn't what it seems to be on the surface, which has given me the ability to question things that other people might not think twice about. Such as the fact that you SHOULD be able to rely on your doctor to know what is best for your health.

 

If it took me as long as it did to figure out that my doctor was inadvertently poisoning me, there have to be a whole lot of other people out there who are being cheated out of life due to the negligence of the medical community.

 

I am also one of those who figured out myself that have got into a deep trouble with my doctor help. I started my benzo adventure after a bad motor car accident in 2003. i was given Dormicum for a year for sleeping, ativan for anxiety and many addictive painkillers. Somehow I managed to quit it once I start to walk and attend physiotherapy. I had occasionally some benzo sleeping pills for a month, than a month break. I found out that I am chemically poisoned when doctor start to give me different antidepressants. Than I started to read about medications I was given. Funny enough if you will go to doctor and ask for more xanax, he will prescribe you without any doubts, but when when you tell, that you are addicted than they wash their hands off and will send you to psychiatrist or rehab.

I personally know people who are taking 4 mg of xanax daily, ambien for sleeping and some other antidepressants, it is so common these days and the worst is that young 20-30 years old people just living on those drugs, and this is all thanks to growing pharmacy  industry and commission doctors are getting for prescribing the drugs. Sad but true. English is not my first language, sorry for the style I am writing.

Bill- great post. I would be willing to bet that if these drugs were prescribed properly, for SHORT periods of time, then none of us would be here.

 

pj- That is another thing that doctors are clueless about that compounds this problem 100 fold- the fact that taking these drugs "as needed" is wreaking havoc on our nervous systems, sending us into a state of WD. We yo-yo back and forth, the half life of the drugs often masking the true cause of the symptoms.

 

Tanya- I worked in the electronics business for years. I knew a lot about it and still know more than 95% of the general public but then someone who had an INTRICATE knowledge of them would come along and remind me of just how little I knew. The problem with doctors is that a lot of them think they know everything. They are put on a pedestal by society which in some respects they deserve but there is a huge difference between being able to pass a test to get your medical license and being able to think beyond what is in the books to help you truly heal people. In most professions this isn't that big of a deal but we are talking about people's lives here. Doctors today are like car mechanics. The only difference is that mechanics are part changers and doctors are prescription writers. At least when a mechanic changes a faulty part he IS fixing the problem. Writing prescriptions is like putting a plastic bandage on a leaky radiator hose.

 

Libby- a dozen doctors and not one of them figured out that your problems were being caused by the benzo? Malaria? Really? My point exactly.

 

Shatje- another example of the "take as needed" directions sending someone into tolerance/interdose WD and the doctors are clueless. Good to hear that you finally found a doc who seems to be open to learning what they failed to teach her in school.

 

teacher- sad when your diagnosis has to be whispered to you by a medical professional who only knows about the evils of benzodiazepines because he had to suffer through it himself.

When I told my dr. i was experiencing w/d he couldn't understand why.  He asked me, why now, after all this time.  I brought to his attention times I came in and perhaps they were w/d symptoms...like, when I lost eyesight in my eye for two minutes, when my jaw locked but it wasnt lock jaw,  When black spots turned into spiders, when I could fall asleep at a traffic light, when the fatigue is as bad as the pain and you can't tell which one is worse.  His solution, go on Elavil.  Said it will help me get off the benzo and will help with insomnia and fibro pain.  I had taken a while back.  Remembered how after sitting with my back facing the sun, I got a horrendus sun burn, bad dreams and still suffered with pain, a lot of fatigue etc.  Don't think I want to go down this path. Pretty much on my own.  I just want the doc to record, in case I need to go on Social Security for being disabled.  I still have a full time job (summers off) and it was pretty hard to maintain this past year.  At certain times, I couldn't remember what I did seconds ago (another w/d symptom).  My memory is gone. 

Lookingahead, Are you a student or a teacher, perhaps? I, too am tapering from Klonopin. T2

Hi t2, I work in a school as a student secretary. I thank God that I have this job because of the time off.  It's still hard but it helps to have time to unwind, and rest mentally a d physically.  How bout u.? 

Teacher Thought I'b be able to get off K this summer and be all better. It's slower than I ever realized. Am getting a bit afraid that I won't be able to handle all the pressures when school starts...or that I will have an episode at school Wish we were healed already :'(

T2, wrote a reply but somehow lost it..Its hard to type on an iPad .  Anyway, I was saying, yes we can do it! Weve come so far and experienced so much.  And what we have to remember is when we are experiencing these dreaded feelings, we have to remember there is a way out. It doesn't last forever.  Hollym was having a bad day, I was feeling same way, but after reading responses from other buddies, I felt inspired.  When, I have a setback, or I think back, I get dreaded feelings that feel they will never go away.  I have to read positive feedback and find the faith thread very helpful.  Somehow, I feel good right now after a morning of despair.  Go figure, but I'll take it.  Going to spend some quality time, even if it's five minutes with my family.

I, too, had to diagnose myself.  Being a college student, it was a doctor at school that prescribed Klonopin to begin with for insomnia.  I was on 0.25 mg for about 5 weeks and 0.5 mg for a week and a half when I came home after taking a summer class and went to see my family doctor because I was ready to taper off the stuff.  

 

He instead wanted me to go off cold turkey and prescribed Ambien for sleep.  The Ambien gave me a panic attack, so I was at the doctor's again right away and he threw me on huge doses of Klonopin (I didn't even go as high as he wanted, but I was at 2 mgs for 3 days, then 1.5, 1.25, 1) and he wanted me to cut cold turkey from there!  It didn't help me sleep that much (I was sleeping brokenly during those days of high doses, I know now it's because my CNS was a wreck) and the next night, after trying to sleep with nothing unsuccessfully, I took 0.5 mg.  I took that for a couple days, finally slept well one night, and cut down to 0.25 for a couple nights.

 

This past Wednesday I started to get a bunch of other symptoms.  Did some research and sure enough, I figured out I was in benzo withdrawal. I couldn't handle it at 0.25, so I'm now stabilizing at 0.375 for a few days and planning to go on a titration taper once my stuff gets here on Wednesday.  Unfortunately, I have to go back to see the same doctor who messed me up in the first place in hopes of getting another prescription so I can complete a taper successfully.  That'll be Tuesday -- wish me luck.  I've got all the information on hand ready to go.

 

I'm ready for all of this to be over so bad -- it's my senior year of college coming up and I don't want to spend the entirety of it suffering through benzo withdrawal  

ajm, you're going to make it through senior year.  Hopefully, you have a few good buddies there as well as on-line here to make it a good year.  Go slow, get plenty of rest (even if its just resting quietly if you can't sleep) and if I could suggest, no heavy partying ...  Good Luck!

Yeah, I have several good friends that will help me through, and hopefully the withdrawals won't be so bad that I can still function normally.  I just want to have an enjoyable year and have it affected as little by benzo withdrawal as possible.  I'm upset too because it's my last real summer (probably) and I didn't want to spend it feeling like this.  In reality, I guess I haven't started cutting yet, but since my last stable dosage was at 0.5 before I was on that erratic dosage schedule, I guess I have made a cut in a way and that's why I'm going through withdrawal.  Hopefully as I make smaller cuts, they'll be less noticeable.

 

Trust me, I was never a partier, and won't be this year, either.  I just want to be able to get through classes normally, be able to do little things like go out to dinner with friends, go to sporting events, that kind of thing, without feeling too gosh-awful.

 

The good news is I feel like I'm starting to stabilize at 0.375 mg (still having withdrawal symptoms, but they're not getting any worse) and I'm almost eager for my titration supplies to get here Wednesday so I can start (not to mention I think my inaccurate dry cutting isn't helping anything, I'm probably going between 0.35-0.4 mgs as it is!)

I diagnosed myself when I finally woke up to the fact the doctors were never going to figure out what was causing such a vast array of symptoms.  You are right FloridaGuy when you said they will never suspect it is a medication you are taking.

 

My Mother-in-law always says "Doctors...they will either cure you or kill you."  So much wisdom.  In my case they almost killed me, I had to save my own life.  Every single solitary thing made sense once I looked into the benzos.  I wonder how many people have committed suicide, or died living in years of hell before they died because the doctors are so clueless.

 

WE NEED TO GET THE PRESCRIBING LAWS CHANGED!  I just can't stress enough how important it is for victims to write letters to their state representatives and tell their story.  Just telling the doctors may help a handful, but this problem is much much too big to solve without government intervention.  The only way to ensure prevention of vast quantities of new victims is to get the prescribing laws changed.  The only way the government will know what's happening is if WE tell them.

Yeah, it took the other symptoms kicking in for me to realize what was going on.  The only thing I had at first was insomnia, which I thought had to be something else.  Now that I know it's benzo withdrawal, I'm not as afraid of it anymore.  I've accepted the fact that I'm going to be sleeping rather poorly for at least a few months, if not longer.

 

I hate to think the recovery time after getting off may be longer than I was actually on the stuff (I hit the 9 week mark Friday, and my taper, once it starts, will take probably about a month and a half to 2 months to complete, depending on how well I do and how many times I have to hold.)  But you're right, if someone had told me -- if I'd known when that doctor told me to updose like that, I would have said, NO WAY, I am going back to my last stable dose, stabilizing there, and then tapering off...I probably would have lost less sleep that way! 

 

I keep telling myself not think about what if though.  Instead, I've realized I've got to accept the withdrawal symptoms, not think about them, and try to live as normal of a life as possible.  I've really noticed that if I just go about like I was before all this happened, I barely notice my withdrawals.  I know, like I said, I haven't really started a real taper, but when I look at how much Klonopin I had in my system a week and a half ago versus now, there's quite a difference and I've already got the symptoms so I know what they're like (though I'm ready to accept they're going to get worse when I start tapering in a few days.  Oh well.)

I wholeheartedly agree Pers. I have had the last 5 years of my life severely hindered because of medical mismanagement. These drugs are some of the most sinister substances on the planet. I will definitely be writing an enlightening piece to my state representatives. Of course I have a big beef with Ear Nose Throat doctors too

 

As to the original question- like almost everybody else, I had to diagnose myself. I've had more than a few doctors tell me to just take Klonopin "as needed" throughout the day. Like they are damn Pez candy or something... This last run my interdose withdrawals were so extreme I felt like I was living a dream. I paid more attention during this last reinstatement, and I found that these drugs are like anxiety steroids. I'm actually very dismayed by the stupidity/ignorance/arrogance that I have encountered from doctors regarding these drugs.

 

I have had a board certified endocrinologist tell me that these drugs don't disrupt the endrocrine system... He also told me that anxiety doesn't affect it too much, and that a 250 ng/dl serum testosterone reading is normal for a 22 year old male... I hate to be so undiplomatic, but these doctors are morons.

 

Is there a part of the site dedicated to being proactive?If there isn't,  I really think we should create a "being proactive" section that encourages people to contact their state representatives regarding this issue.

Me... went to countless doctors, and none of them had a clue.