Kooks make up new disease: Ashton Syndrome

Ashton Syndrome

http://www.heatherashtonsyndrome.org

“Ashton Syndrome is an iatrogenic illness caused by the therapeutic use (typically longer than four weeks, usually in low doses, for months or years) and cessation of benzodiazepine drugs that down regulate GABA receptors in the brain and body resulting a cluster of potentially severe neurological and physical symptoms. Patients who develop Ashton Syndrome are medication compliant, and take benzodiazepine doses as prescribed by their doctors (except the ones that don’t – Editor).  They unknowingly (believe there is a warning on the product insert – Editor) become dependent on the drug, experience significant illness and begin to experience unusual and/or worsening symptoms. The onset of the syndrome begins when the patient consistently grows tolerant to the various actions of their therapeutic dose of benzodiazepines. Tolerance is determined when the original dose of the drug has progressively less efficacy and a higher dose is required to obtain the original effect. Tolerance develops at variable rates and to different degrees and may vary between patients based on neurological and chemical make-up. Symptoms of the syndrome often do not end upon cessation of the benzodiazepine and while they can gradually recede after months to years, occasionally symptoms persist indefinitely. Patient outcomes may range from complete recovery to death (people are dying from benzodiazepine withdrawal? where? – Editor). The phases of symptoms experienced vary from patient to patient and the extent of damage and time of recovery appears to also vary widely from patient to patient.”

22 thoughts on “Kooks make up new disease: Ashton Syndrome

  1. Just want to note that you can have seizures if you cold turkey from benzodiazepines. Even people who don’t believe in long term withdrawal of benzos acknowledge this. Seizures, in case you didn’t know, can kill people.

  2. The Ashton syndrome is a crock of sh#%
    Some mamby pamby pussie who wants to take no responsibility for his own drug addiction. Who ever wrote that self serving nonsense should be ashamed. Virtually all the buddies I ever knew had abused drugs and alcohol. Most of them also knew damn well the benzos were addictive. What a joke! I hope we can find out who the jackass was who made that crap up. I feel badly that some poor soul might read it and actually believe it.

  3. A cold turkey scenario is a part of benzodiazepine withdrawal, though. And yes, shitty doctors and psychiatrists have recommended that to people. I also literally had a doctor tell me ( a psychiatrist) that I wasn’t going to get “addicted” because I wasn’t on for “that long” and I didn’t have “that kind of personality.” I was in a really desperate, acute stress type situation and thought “well people who get dependent are predisposed to addiction.”

    Now, it’s definitely true that there are people out there for whom actual addiction and abuse is a problem and complicates benzo withdrawal. But there are people who never abused their drug, and have no history of addiction, like myself, who have had a pretty difficult time trying to stop benzos.

    I will say I regret not doing more research about a drug that strong. That’s on me. But I find it hard to swallow that doctors can be so cavalier about withdrawal or prescribing in the first place.

    Ashton Syndrome or whatever you want to call it is merely a label for bad or protracted withdrawal, neither of which are made up. I don’t know the guy who got that off the ground so I can’t comment on how much he knows but I can’t blame anyone for wanting to give this a label that is more inclusive of people who aren’t “addicts” in the proper sense of the term.

    For the record: I’ve been on benzobuddies and I hate Scientology, and have found no connection to it and benzobuddies. I’m not sure why that trope gets repeated all the time.

  4. I guess I just don’t understand why you poke fun of people you say are innocent. The way in which you do it I think is harmful at worst and mean at best… Even the pictures here make it seem like anyone going through withdrawal is somehow “crazy.” Not to mention it won’t stop people from getting benzo withdrawal. Even some people on consistent doses of benzos get withdrawal symptoms/side effects… What are those people supposed to do? Increase their dose until those symptoms stop? What if that doesn’t work? Then they are either stuck on a med that’s making them sick or they have to get off the med…

    Most of the people I’ve seen on benzobuddies either are there to seek support because they have made the independent choice that they should not be on benzos or because they have cold turkey’d/ rapid tapered in a detox scenario and are then at a loss of what to do. Those seem to be the most vocal camps, anyway.

    I have always seen moderators tell people to call helplines or go to the ER if they are suicidal. Admins do this as well. I will say, though, that people don’t seem to have great experiences in psych wards. I don’t tell anyone what to do in general but if it were me, I’d be reticent for fear of forced drug cocktails that might make me feel worse (this happens). But people are told by admins and mods to seek medical help because sometimes the hospital is the best place assuming you don’t feel worse coming out of it and try to kill yourself after the fact.

    As for doubting people are told to abruptly stop meds, as recently as 2008/09, my current therapist was told she could “just stop” klonopin. Hopefully that’s not as common anymore but from what I’ve read on forums, people are still being told this.

    In any online forum (reddit, benzobuddies, etc.) you’re going to get some extremes.. Some people will give incredibly bad advice but that doesn’t make the forum itself bad. It’s the age of the internet. Plus, people who DO want to go off their meds need some place for support. I will admit that BB is not always filled with support but again, that’s the internet itself, not BB.

  5. I honestly don’t see the point of this site Mike. All it does is attack people’s character and make yourself look bad. Why are you even bothering?

  6. Sounds like I touched a nerve. I still don’t see how ridiculing people for saying things you think sound crazy is productive in the manner that you do it. It’s not your opinion on the subject that is the problem, IMO. You’re entitled to have your opinion. What is that saying? Opinions are like assholes; everyone has one. Doesn’t make you the arbiter of all that is good in the universe. Doesn’t make me the arbiter either. I just don’t make my crusades into personal attacks, which is what I see here… But, as you said, just my opinion.

    I don’t think BB is this great amazing savior, but I also don’t think there’s many alternatives for people going through horrific withdrawal. I can’t claim to know the specific scenarios you’re pointing to, but I do know benzo withdrawal can be so bad people take their lives. I don’t think that’s BB’s fault. I also do not think they are a cult. As I said, it’s the internet. Can’t control what people will say 100% of the time. I also have yet to see any real connection to Scientology other than some there are anti psychiatry but that doesn’t mean people are scientologists.

  7. I really dislike the whole accidental addict concept. I mean unless you have severe brain damage or were born with a very low mental capacity, you should know that powerful prescription meds used to stop seizures, induce sleep and eliminate anxiety just might be addictive…….ya think?

    Buddies, please give us all a break with the innocent accidental addict nonsense, all right? Because you take your sedatives in a pill makes you no better than a person who takes theirs from a bottle of booze, an injection, or inhales them. It is a delusion that is is better to be addicted to something from your drug store than off the street. Regardless of the source or delivery method, you are just as much an addict as any other addict.

    Once you accept this, you have a chance at a reasonable recovery.

  8. The juicy fruit thing could be psychosomatic but who am to be bent out of shape about it? Then again who am I to say it can’t cause neurological symptoms? I used to see warnings on gum packages about possible neurological affects linked with autism a symptom of which is sensory overload. Also blood sugar levels can affect how one feels with a normal CNS, let alone someone whose CNS is actually compromised, so it actually might not be as “kooky” as you think. But see, that’s not even the point. The point is people are hurting and mocking them doesn’t help ease their pain.

  9. Hi Angela
    Don’t you think it is good to point out the hubris that Colin and his stooges exhibit? They have time and time again shown contempt for medical professionals. They have the audacity to second guess doctors, setting up a site for mentally ill drug addicts to give one another medical advice. The whole site causes, as Mike points out, mass psychogenic illness, amongst other significant problems.
    I do not want to make fun of Colin, but his idea that he knows more about mental illness and its treatments than doctors do, deserves to be ridiculed.
    The preposterous fears of everyday harmless foods should also be pointed out as insanity. Something Colin and his henchmen would never allow. This keeps his followers sick and under his harmful influence.

  10. Also White Knight: there is a difference between physiological dependence and addiction. People get dependent on heart meds… Are they addicts? So because one is prescribed a psychiatric drug and whose body is then physiologically dependent on that drug, that makes them an addict? I don’t even think the term accidental addict is correct for many people with dependence on psych meds…my pill doesn’t comfort me. It’s not at all like booze. But then again you’re even criticizing the medicated and mighty camp so I feel as though talking to you more about this might be like trying to get blood from a stone. I bet you’re a “every man for himself” type of guy. I happen to not mix well with those people on the internet especially when that attitude is used mostly to insult or attack others.

  11. I think some doctors need to be second guessed. I wish I had second guessed mine. You can’t tell people they are personally accountable on the one hand and then say “but don’t second guess a doctor.” Independent thought necessitates a bit of second guessing

  12. I do want to elaborate a little on why it’s so important. I have literally had several different doctors openly admit to me that much of determining what med a person should be on is “guess work”- one couldn’t even tell me the side effects of an antipsychotic she was going to prescribe me off label for insomnia. She told me she’d have to look it up… I have a friend who is a social worker that was blown away by that. She told me “Even I know the side effect profile to that!” And she’s had to go through less schooling, take less science based courses, and jump through less hoops in general than a medical professional. I mean,
    you tell me not to second guess a psychiatrist who knows less than a young social worker?

  13. As for “doctors help people.” Yes. That is their vocation. Not all doctors are created equally and not all fields of medicine operate the same way. I’d love to believe that most doctors are good people. I happen to know of a few good doctors and a few bad doctors so I’ve had a sampling. But I feel as though I’ve addressed some of the problems with psychiatry above.

    I think people become enraged when they find out how serious their withdrawal symptoms are and when their doctors should have known better than to prescribe a benzo long term or than to put them on a drug they knew little about. I’m not saying that this means people should be out to get doctors, but if you had one that rendered you disabled, would you not want some action taken? What about one of your children?

    The only reason recompense cannot be had is because in legal parlance there’s something called the standard of care- if a doctor hasn’t violated this standard, a malpractice suit doesn’t go forward. The problem arises when a standard of care established by protocols put into place by the APA no longer works or doesn’t take into account how dangerous these drugs can be… Then essentially a patient is SOL. It’s kind of the corollary to “just following orders.” Following orders doesn’t make it morally right. Similarly, going along with standard, bare minimum protocol doesn’t mean you are doing right by your patient, just that you won’t have to deal with a lawsuit.

  14. TL;DR all my comments:

    People deserve informed consent from their healthcare professionals. Doctors should have a base understanding of the drugs they are prescribing. People get angry when this doesn’t happen. I don’t blame them for their anger.

    I do not think attempting to take away a place on the internet where they can vent their frustrations and fears with other peers in the same boat will help the problem. That is just my opinion with which you very obviously disagree.

  15. Hi Angela

    Heart medication dependence is very different than benzo addiction or alcoholism. I am sure if you are honest you will admit mood altering drugs like alcohol and benzos, which are both depressants and can be taken on a regular basis with the sole purpose of altering ones psychological state, are very different than non mood altering medicines taken to regulate heart rhythm or kidney function, etc.etc.

    Why do addicts on BB want to claim that is some small way they are better than a street drug addict? Both are simply trying to alter their mood by ingesting a drug, right? Isn’t this commonality the most salient point?

    I am sorry to tell you this, but the typical Benzo buddy blaming his doctor for not knowing how each patient will react to any given medication is unfair and pathetic. This is an impossible task. Know one could know which person will be in that rare minority of patients who will have a problem discontinuing their benzo.

    There are warning inserts for each medicine prescribed in the US that can detail patients about these rare possible side effects. No doctor should be expected to memorize these things.

    I am a “every guy for themselves guy” if that describes a person who has dedicated 8 years volunteering to work for a children’s cancer non profit. I hope you might see how silly it is to project onto me what you hope I am, just because I have a different perspective on your BB site and it’s ideologies.

  16. Angela
    I get a kick from your coining the phrase “camp” with regards to the # medicatedandmighty
    I can help but imagine a bunch of stupified drugs addicts sitting around a campfire singing kumbaya
    ” I’m on drugs my Lord, kumbaya” ?

  17. I don’t mean to make fun of drug addicts, but let’s not try and elevate them to folk hero status either, OK? Drug addiction is nothing to brag or boast about.
    I ridicule the idea that prescription drug addicts are for some reason “mighty” and should let people know about their drug use. These poor souls are posting pictures of them selves inebriated and holding prescription drug containers because they are proud of it?!?

  18. Let me ask you this, white knight:

    Is someone who is on an antidepressant a drug addict? That is a mood altering substance for sure. I don’t love medicated and mighty because I think their reaction to anyone who has had a bad experience on a psych drug seems uncalled for. I wouldn’t call them drug addicts, though.
    Maybe some are. I don’t know. But the movement itself is trying to “destigmatize mental illness” not promote getting high, though pot certainly has it’s medicinal properties. That is the point of the hashtag, so I just found it amusing that you’d be on a site such as this which proclaims to protect the innocent mentally ill.

    By “every man for himself” I meant the sort of conservative “pull yourself up by your own bootstraps.” You can volunteer at a children’s hospital and still have that mindset. If I’m wrong about that, then I’m wrong but generally those types of people tend to go right for victim blaming/gas lighting. Not saying liberals don’t do it at all, but it seems to be less prevalent among that group.

    Of course nobody can know how a drug will affect everyone, but to be clueless on any side effects of a commonly prescribed antipsychotic when you are a psychiatrist? That is reasonable to you? Give me a break.

    Also I’d like to point out that these leaflets point to “side effects” and simply state to a consult a doctor before stopping. How many people do you think, especially when under extreme amounts of stress, would think that meant “horrific withdrawal that can last months or years”? I certainly haven’t seen any warning label that mentions time frames… You’d only be able to know that if you searched “protracted withdrawal” which I’m sure you’ve noticed but that’s not a term many people even know to search. But someone in the medical community not ever hearing about this and even worse, laughing at their patients or denying their concerns? That’s unforgivable. That’s far worse than any sort of doctor bashing on an online forum or Facebook group, IMO.

    You and “mike” obviously do not agree with the basic premise that people should not be made to feel less than, regardless of one’s profession in the medical field.

    I’m about done though because the admin of this site is right when he points out that I don’t like it… Plus I forgot some key things I’d previously learned about the same and I’m not sure I’m comfortable interacting with him knowing some of these things.

    I honestly hope that you can see the other side in a more reasonable light someday. I’ve been on both sides of the argument in my life and there are too many mistreated people too ignore or ostracize.

  19. Angela,

    If the idea is to destigmatize a persons choice to use street or prescription drugs that have caused them to become mentally ill, or in some cases, more profoundly mentally ill, then I think the movement should be exposed as a bad joke.

    To me real heroes face life on life’s terms. When life gets tough, a coward hides behind a bottle, or pops a pill. Can people under the influence really be relied upon in any capacity in our society? You would not want a person on drugs flying the plane you are on, right? Or even driving in the car next to you? This is because these poor souls are in a bad and unnatural impaired state, one that should not be destigmatize, but recognized as a danger to them selves, and in some cases others.

    Also please note that no legitimate medical professionals recognize benzo WD lasting more than 18 months, which is what the BB’s call PAWS or protracted WD. It does not exist, yet Colin allows the poor kooks over their to drone on and on about this nonsense. People who read their horror stories soon feel as though they to have PAWS!

  20. A Dr put me on benzos long term after telling me they were addictive and wouldn’t prescribe them. Anyone that prescribes these for longer than two weeks should be throw in jail and be gang raped while there. Nothing more to be said about that, they are dangerous just like all big pharma meds.
    Seriously, they shouldn’t be prescribed longer than 2 weeks and my Dr was famous for putting people on meds and just leaving you on them. My health was destroyed by his ignorance and lack of attention, Dr’s cover their asses very well too. In jail though, their asses won’t be protected and that’s a beautiful thing. Has anyone ever heard of a Dr going to jail for killing anyone? Me neither. The whole industry is more corrupt than most believe and unaccountable to the max. Psychiatry kills and anyone that disputes that is misinformed, naive or both…I wish I never followed my Dr’s orders…I’m screwed and not much to do other than pray God takes me out. Like, I’m sure that’ll happen anytime soon.

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