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Neurologist says he's never heard of such symptoms?


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Really?! I saw a neurologist last week for my headaches and visual distortions. I asked about withdrawal symptoms from Klonopin and was told he's never heard of someone going through such symptoms. I just love hearing that. Makes me feel like I'm so abnormal or that maybe there's something else wrong with me and it's not Klonopin withdrawal at all.  :-[
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Unfortunately, physicians in general are not trained in any substantial way (usually not at all) to take people off medication and to recognise and treat withdrawal symptoms. A neurologist looks for physical proof that something is wrong with you, and with benzo withdrawal all tests usually come out normal. They are also brought up with the idea that pills only cure people and not make them worse and create more problems. I also went to a neurologist a couple of times and each time I was referred to a psychiatrist because I couldn't sleep. I was in accute benzo withdrawal. Of course you neurologist must have seen other patients going through benzo withdrawal but he has never recognised or treated the symptoms as such and probably sent them to the loony bin. Mine actually did say withdrawal from benzos is real but it could only last for a couple of days and it's no big deal with low doses he added. He was so wrong.
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Really?! I saw a neurologist last week for my headaches and visual distortions. I asked about withdrawal symptoms from Klonopin and was told he's never heard of someone going through such symptoms. I just love hearing that. Makes me feel like I'm so abnormal or that maybe there's something else wrong with me and it's not Klonopin withdrawal at all.  :-[

 

I had exactly the same thing said to me by a neurologist who was treating me for a migraine type disorder and dizziness and RLS .. he dismissed the medication as being a contributor stating that he had never seen anyone have difficulty on it or coming off it ... he did prescribe it to me for RLS and blamed everything but the medication for the deterioration it caused .. so you are not alone ..

 

T

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I would think a neurologist would know better.  My otoneurologist (specializing in balance and hearing) regularly tapers his patients off 2mg valium over several months to diminish s/x such as tinnitus (ear ringing), vertigo (dizzies and inner ear balance issues) and yes, I talked to him about visual tracking issues I had when I did a c/t and rapid taper off valium and it's pretty well documented.  Might be time for another doctor or second medical opinion.
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Just because a doctor has never heard of it or never seen it in a patient doesn't mean a damn thing. There aren't a whole lot of studies out there but there are enough that corroborate the experiences of the 10,000 member here that you should feel pretty confident that you aren't imagining things.
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The neurologist I saw published articles on benzo-withdrawal.  I think your neurologist slept through one too many lectures while being a student.  There is a really good reason why benzos are only recommended for 2-4 weeks max.  and are schedule IV drugs.  What does he think are withdrawal symptoms?
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I use to see a Neurologist, and she was clueless.

 

Strange how their label has "neuro" in it, and they know not as much as they think. Not too goddamn smart.

 

I don't put too much faith into any doctor these days. There are good Neurologists out there, but yours isn't one of them.

 

My guess is when someone your Neuro is treating tries to discontinue the drug, he sees their symptoms as something else, and prescribes something else to cover that. It gets the patient out of his hair, and more money in his pocket!

 

I would find another Neurologist, and dump this one.

 

 

 

 

 

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Klon181

Your neurologist is a dip shit.

Sorry, but I'm just so tired a doctors not knowing a damn thing about this poison they give to people.

 

!!!!

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The first time i tapered off benzo and straight after tapered off a/d i started to feel very dizzy,lightheaded,and when i closed my eyes i had that boaty feeling,off rocking side to side.also i couldnt walk in a straight line,my balance had got really bad.i kept walking into things,so i went to see my doctor and she sent me for a ct scan of the brain.the results all came back normal.i told him i had tapered off benzo and a/d,could that have anything to do with it.he said no way,it must be migrain.now iv had migrain most of my life and they were deffo not the sx i used to have with a migrain....................what a waste of time.

 

after that i got really sick and had to go back on the tablets again for a while,then had to do all the tapering again,im now off benzo 3 yrs and 1 year off a/d..............and guess what,all those sx have come back again.. :idiot: :idiot:

 

                            luv chrissy xx

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This really is a serious problem. Mostly because it's bad medical care and feels crappy to us but also because benzo ignorance is expensive to our health care system.

 

I just got done totaling my medical expenses for 2012 for tax purposes - they are over $22,000. This includes two ER visits, an inpatient psych visit, outpatient psych treatment, countless neurology visits, MRIs, CT scans, a visit to a major teaching hospital, acupuncture, massage, physical therapy, ENT visits (to measure vertigo which kicked everything off) and blah blah blah.

 

Fu&king klonopin man, derailed a mid-career person and all these medical geniuses could not figure it out until I got a benzo-wise shrink. And since then it's been the hell of taper and now post-taper. But at least heading in the right direction now.

 

Almost makes me want to launch a lawsuit. Because these expenses don't cover the lost time, relationships, personal reputation, and of course the insane pain and suffering which are intense (though not the worst - terminal bone cancer looks worse to me.)

 

May we all heal completely and rise stronger than we were,

 

M

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Is nothing wrong with you . Doctors have milions of medical book , internat  to know about benzo withdrawal . Yet , they soooo dumb , cannot even read .  :idiot: :idiot Idiots

I hear this from my idiot 12 years ,  no w/d from benzo .

He lied to me .

Doctors in ER , everybody know about benzo withdrawal .  I meet maby 20 , all have knowledge  about benzo . Only who dont; was my idiot  family physic.

He know , but play game  12 years  on me , because make lots of money from me .

IS NOTHING WRONG WITH YOU , IS BENZO WITHDRAWAL , if you have symptoms like more people on BB. :smitten: :smitten: :smitten: :smitten: 

 

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Well, if it is NOT benzo withdrawal, have we gotten a case of "mass hysteria?" I dont know the numbers but theres quite a lot of active members here. And most of those who post talk about very similar symptoms.......VERY similar!!!

I used to really worry about this. I was SURE I was somehow "different" from everyone here. Now I know better, and its such a relief.

When my own doctor let me know last week that he's aware benzo withdrawal can last this long, I cant tell you how reassuring that was. Granted, I didnt give him a symptom list, (that would be a fairly big book!) but I did mention insomnia, anxiety, tinnitis and DR...He didnt blink an eye. Now, if the 3 psychiatrists I saw within the last 10 monthes knew, maybe I wouldnt be in the mess I am today.

    The last one I saw "informed" me that I was going immediately to sign into an 8 day detox...or she'd....(she didnt have to say it - she'd Baker Act me. I knew!)  And that was detox from Klonapin 6 mgs/day - its just NOT ever recommended to do this!!!!!  NEVER! Life threatening!!! The prescribing psychiatrist closed his practice, leaving me high and dry after 12 continuous years of being his patient...and I never heard from him again.

Am I bitter? Am I angry?? You BET I AM.

I usually tone this down but after reading this thread I have a case of benzo rage. Thanks for letting me vent!

east

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Really?! I saw a neurologist last week for my headaches and visual distortions. I asked about withdrawal symptoms from Klonopin and was told he's never heard of someone going through such symptoms. I just love hearing that. Makes me feel like I'm so abnormal or that maybe there's something else wrong with me and it's not Klonopin withdrawal at all.  :-[

We have to educate THEM. Once you get to that point it is OK. Just assume the next doctor you run into knows nothing about benzos and you will not be disappointed.

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I do just that, and all I get is the infamous "blank stare."

I don't get a blank stare. First of all, I'm 64. It's hard to play dumb to someone my age who knows what he is talking about. Second, because I have never had any documented "psychological" problems, I can play that card. I have almost 40 years of steady employment and lots of respect from my friends and colleagues. So if a doctor - any doctor - seems not to want to listen to me, he is going to get a tongue-lashing on the spot.

 

The reason I wanted off of K is that it gives me freedom. I can literally say to my physician, adios m-f-. Then I don't have to. :)

 

I like my doctor. But he does listen to me. If he didn't, I would have already been gone.

 

The same thing happened last fall when I decided I never wanted to take Trazadone again to help with sleep. I was done with it, and my doctor was very pleased. That is good. But he had no idea why my BP was not as low. I had to educate him. Trazadone has the side-effect of lowering BP. Sometimes it can do so dangerously. I found that out by doing research.

 

Then I found out that caffeine is a trigger for headaches when I cut that, again looking for an answer to the higher BP. Stopping trazadone raised it, I need to find other factors that lowered it. And I did.

 

But when I dumped the caffeine, for the first time being ultra-careful not to touch it any form (because I wanted to get to the bottom of the issue), headaches stopped. Now, when I talk to my doctor he will be suprised. Most likely none of his patients has ever had such a bizarre reaction to caffeine. So far no one else I know has.

 

The same thing will happend when I tell him I am off K. He will be surprised and pleased. But before I leave, I am going to educate him. And he WILL listen. Seriously.

 

I have told doctors before: "I have valuable info, and if you listen to someday you will save lives. If you do not, someday you will kill someone. Now, if you can live with that, just tell me to be quiet and you can get on with killing people."

 

That's why I have gone to such great care to never be harsh with people here, and why I never will be. The members of this forum collectively know more than anyone else, anywhere. That's just a fact. It only took me about 4 days to get that right.

 

You too, East. You know a ton. Never forget that!

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Well, if it is NOT benzo withdrawal, have we gotten a case of "mass hysteria?" I dont know the numbers but theres quite a lot of active members here. And most of those who post talk about very similar symptoms.......VERY similar!!!

I used to really worry about this. I was SURE I was somehow "different" from everyone here. Now I know better, and its such a relief.

When my own doctor let me know last week that he's aware benzo withdrawal can last this long, I cant tell you how reassuring that was. Granted, I didnt give him a symptom list, (that would be a fairly big book!) but I did mention insomnia, anxiety, tinnitis and DR...He didnt blink an eye. Now, if the 3 psychiatrists I saw within the last 10 monthes knew, maybe I wouldnt be in the mess I am today.

    The last one I saw "informed" me that I was going immediately to sign into an 8 day detox...or she'd....(she didnt have to say it - she'd Baker Act me. I knew!)  And that was detox from Klonapin 6 mgs/day - its just NOT ever recommended to do this!!!!!  NEVER! Life threatening!!! The prescribing psychiatrist closed his practice, leaving me high and dry after 12 continuous years of being his patient...and I never heard from him again.

Am I bitter? Am I angry?? You BET I AM.

I usually tone this down but after reading this thread I have a case of benzo rage. Thanks for letting me vent!

east

 

 

 

I am livid too , he had 3 letter from me  my doctor , terrible  what he done to me . 12 years for no reason , only he make money from me .  I never had any  med. problem , just need sleep aid for month , because  change from night to 4 am . for month  at work .

second month on Clon attacking co worker with knife  and fired after 12 years job . Sick for 12 years .  I am livid every day

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Wow, Erika! That's some bad reaction you had...Im glad youre better now.

 

gaer - Im 63, and have been an RN for 30 years...not a slouch, myself...and yes, I have gotten the blank stares. My own medical doctor DOES know more about benzo withdrawal than most, which means Im damn lucky.

If I ever go back to work, you'd best believe that I will take any opportunity ot educate my fellow medical professionals. I look forward to it!

east

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East, I'm so happy there is another nurse on here that understands. I too have been an R N for 25 years.  I can of believe the ignorance in the medical community. My previous psychiatrist told me he wanted me off the Klonopin because I could get a DUI and just cut it in half for a week then be done. I was only on 0.5mg for 2 months but the wd symptoms were awful. I kept calling him and asking if there was another way to taper slower, he basically dismissed me and said yes getting off it can kick you in the butt for a few days!! I kept trying but felt so alone and thought I was going crazy. I ended up in the psych ward after taking an OD. It was the worst experience of my life.  Anyway thank God I found this forum and my new doc tried to tell me to cut too fast again. I told him that I am titrating with milk and he supports however I want to do it.  I'm still getting mild wd sxs but better than before. I'm going very slowly. I come on here often for the moral support and I'm also off work right now as I'm still not well enough to go back to my stressful job.  Good thoughts to all of you, Jules
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I'm in my 50s, have worked steady since graduating from college, and then developed severe vertigo. Could not stand, much less work. Ran from doctor to doctor for six months until this got sorted out. At one point was prescribed Ativan *on top* of Klonopin because it was said to be more "nausea specific". You cannot imagine how angry I got from all the BS and idiotic diagnoses. Virus, migraine associated vertigo, MRI for MS, etc. etc. And the entire time this was starting them in the face.

 

And you know what, they will never know they were wrong unless I contact them and tell them. Because I kept doc-hopping until the one cool Pdoc figured it out, so as far as they are concerned, this dude with vertigo showed up one day and never came back.

 

So maybe we should send letters to the bad docs and simply tell them what happened - to raise awareness, not punish.

 

M

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Klon181

Your neurologist is a dip shit.

Sorry, but I'm just so tired a doctors not knowing a damn thing about this poison they give to people.

 

!!!!

Could not agree more...

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I've seen 4 neurologists. 3 said they've never heard of my symptoms and the fourth (at Mass General Hospital- currently rated best in the USA) says Benzos are "archaic" and should only be used in the history books right next to leeches, letting blood, and lobotomies! He agrees that all my symptoms are very common in withdrawal and is helping me get off them. He treated me as if I'd been subjected to torture. Certainly knows his stuff. So my point: most doctors are clueless about withdrawal effects. Keep searching and you'll find someone with proper training. Try talking to a psychiatrist. They are starting to brighten up to the dangers if these evil drugs.
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Don't forget about mercury. That was used to "cure" things like syphilis.

 

My view: in a century or two the time we live in will be considered not much better than the dark ages. It all goes so much further than benzos. It is up to us to get informed. There are good doctors out there, but the average doctor is average. And average is, by definition, only average.

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i went to 5 Neurologists after the c/t. not one of them could understand what was happening to me and labeled all my sxs "bizarre".

i went to my original neurologist who diagnosed me with MS and he told me that he didn't want me to talk to him about my benzo withdrawal symptoms because "I only treat neurological disorder's" he said. i said, 'you're kidding me right?" this whole benzo withdrawal--mostly every symptom is neurological!! that pissed me off!

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Next time a neurologist says he hasn't seen anyone having trouble getting off benzos, tell him this: yes you have, you're looking at one!
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Next time a neurologist says he hasn't seen anyone having trouble getting off benzos, tell him this: yes you have, you're looking at one!

And add to that:

 

If you had a brain you would already know that if this happened to me, with a world population of 7 billion the chances of my being unique is rather low - HELLO!!!!!!!!

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