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Benzos for Chronic Fatigue Syndrome? The Klonopin/Benzodiazepine Survey Results

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by Cort Johnson

The benzodiazepines may be the most commonly used class of drugs in chronic fatigue syndrome and it's easy to see why. Their ability to enhance the effects of the 'feel good' neurotransmitter, GABA, makes them a nice foil for study findings indicating that the fight or flight response is turned on in ME/CFS. Look down the list of effects (sedating, sleep-inducing, anti-anxiety, anticonvulsant, muscle-relaxing) and you can see why they seem a good fit for a disorder in which Dr. Cheney once said, probably only half–jokingly, that inducing a coma might be very helpful.

Benzodiazepines can have their dark side, however. Long term use can lead to tolerance and dependence and problems with withdrawal. Even if they're not suffering from negative effects, some people who come off long term benzodiazepine use feel better.

Earlier this year, we combined a blog featuring the story of one chronic fatigue syndrome patient's struggle to get off Klonopin (clonezepam) with a survey. Already taking high levels of Klonopin (3 mgs/day), the person with the difficult withdrawal had been advised to up her dose by her doctor. She refused, but she still ended up in a detoxification center fighting to get off the drug.



Survey

We wanted to find out a couple of things in our survey. We wanted to find out how well others were doing on the drug, what doses they were taking, whether any had suffered withdrawal symptoms, whether they needed assistance getting off the drug, etc. First we asked about Klonopin and then about other benzodiazepines.

Here are the results…

Demographics

With 174 people taking the survey we had a robust response. Ninety-three percent of the survey takers had been diagnosed with chronic fatigue syndrome and sixty-three percent had been diagnosed with fibromyalgia.

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Reasons for Use

Klonopin was mostly prescribed as a sleep aid (66%) and as a calming agent (41%). Other purposes (28%) included stopping muscle spasms (3%), as a muscle relaxant (3%), to stop panic/anxiety attacks (3%), for restless leg syndrome (2%), as a brain protectant (2%), to stop sensory overload (2%), to stop tinnitus (1%) and pain relief (1%).

Dosage

Gabby had been taking 3mgs/day of Klonopin. With the vast majority of patients (83%) reporting that the maximum dose they had ever taken was 2 mgs/day or lower, we found her dose to be on the high end. However a significant portion of patients (17%) were taking Klonopin at doses (3 mgs/day or greater) that caused her problems.

The most common doses were 2mgs/day (29%) and I mg/day (29%).

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Duration

Long term use was common, with 55% stating they'd taken Klonopin for over 5 years and almost 20% taking it from 2-5 years. 15% had taken it for 1-2 years and 15% less than a year. The vast majority of patients (84%) took Klonopin daily and only 8% took it intermittently.

The common long term use suggested that the drug was helpful and, in general, when we asked about benefits and risks that's what we found.

Benefits and Risks

58% of respondents stated that Klonopin had been 'very helpful' and 22% stated it had been 'somewhat helpful'.

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With 4% of respondents stating Klonopin was 'somewhat harmful' and a whopping 13% stating it was "very harmful', the potential for damage was clear as well.

The doses of the patients who did not do well on Klonopin were unclear, but it was intriguing to see that the percentage of patients experiencing harm (18%) was very similar to the percentage of patients taking above 2 mgs of Klonopin a day (17%).

Tolerance/Addiction

Tolerance (the need to increase one's dose to get the same effect) and addiction (craving for the drug) are two possible side effects.

The results of this survey concurred with the generally accepted view that problems with addiction were relatively rare (8%), and signs of becoming tolerant were more common (29%), and most people (66%) did not experience signs of either.

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20% of respondents felt they noticed signs of 'tolerance withdrawal'; i.e. they thought they may have been having withdrawal symptoms while still on the drug. Anyone questioning whether this is happening to them should discuss it with their doctor.

Psychological Symptoms

Rates of negative psychological symptoms were relatively low, with 14% of the respondents (24) reporting they'd experienced them since going on Klonopin. The most common negative side effects were anxiety (67%), depression (50%), dysphoria (loss to capacity to enjoy life (42%)) and rapid mood changes (38%). Four people reported having suicidal thoughts.

While we don't know if these are the same people, note again that the 14% rate of negative psychological symptoms mirrors the percentage of people who had 'very harmful' experiences and is similar to the percentage of those (17%) who took 3 mgs or more of Klonopin daily.

Physiological Symptoms

19% (34) reported having new physical symptoms since starting Klonopin. The most common new physical symptoms were dry mouth (34%), fatigue/flu-like symptoms (35%), and headache, weakness, dizziness (24%).

Stopping Klonopin

Approximately 45% of the survey takers had stopped Klonopin at some point. While most got off the drug easily, a substantial number of people had significant problems doing so. Almost half (48%) had no negative side effects, 14% had minor side effects, and 12% had moderate side effects. Just over a quarter of those who stopped the drug had severe side effects (14%) or very severe side effects (12%).

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Most people who stopped the drug did so under a doctor's supervision (90%), 6% saw a specialist to help them get off Klonopin and one went to a detoxification clinic. 23% used other drugs to get themselves weaned off of Klonopin.

Most people (51%) did not experience withdrawal symptoms. Of those who did they mostly lasted a week (16%). One person with constant anxiety reported that Klonopin worked so well that she had no fear at all about anything…which was dangerous in itself.

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A significant portion of patients (22%), however, reported that they dealt with withdrawal symptoms that lasted over a month and in 14% the symptoms lasted from g3-6 months. One person wrote that a year later she was still trying to taper down the drug, sometimes with 'fairly severe' effects. Two other people reported that the withdrawal effects lasted longer than a year, and one person stated it took 2-3 years. One person who'd been on the drug for 20 years was struggling to taper it down, while others reported doing just fine for many years on the drug.

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Comments

About half the survey takers left comments and as expected they were very variable. One person said "Klonopin has saved my life. It has helped me cope with this difficult illness. I take it only when I need it". Another said it was the 'worst drug' they had ever tried. One tragic response was from a mother who believes that the 6 mgs/day regimen her son was on contributed to his suicide. Several people reported that Klonopin helped them greatly with their light sensitivity issues. Check out the attachment for all the responses.

Conclusions

Gabby's experience, thankfully, was not typical. Most chronic fatigue syndrome patients, at least in this survey, took lower doses than she did, tolerated it well and benefitted from the drug. The common long term use of the drug suggested that its benefits usually outweighed its risks. When Klonopin was taken it was usually taken regularly (daily). Klonopin clearly plays an important role in aiding sleep and reducing 'arousal' and anxiety in people with this disorder. It is clearly the benzodiazepine de jour for the ME/CFS community.

A significant subset of patients, however, do have trouble with this drug. While we can't draw conclusions, the percentage of patients (17%) taking higher doses (3 mgs or greater) of the drug; reporting 'very harmful' (14%) or 'somewhat harmful' (4%) experiences; and experiencing negative psychological side effects (14%) were remarkably similar. 14% of patients also reported that it took 3-6 months for their withdrawal symptoms to dissipate and 2% reported symptoms lasting over a year.

We can't tell whether these were the patients taking higher doses of the drug, but it's certainly possible. While not definitive, the survey results suggest that patients taking higher doses should monitor their symptoms to ensure they are not experiencing withdrawal symptoms while still on the drug. As always, check with your doctor when new symptoms of any type occur while on any drug.

Other Benzodiazepines

We also asked about other benzodiazepines that members of the ME/CFS Community were taking. About half of the respondents had taken other benzodiazepines, with Valium, Xanax and Lorezepam leading the list.

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Again, doctors usually prescribed the benzodiazepines as sleep agents, as calming aids or as muscle relaxants. (One doctor prescribed it to bring the heart rate down during exercise). Reflecting higher average doses for several of these drugs, the average daily dose was much higher (the typical daily dose for Xanax for anxiety is 5-6mgs and for valium it is up to 30-40 mgs.)

Again, most people had been on a benzodiazepine for long periods of time, with easily the most common duration being greater than 5 years (38%). Most people who took the drug took it daily as well (52%).

Once again, most people seemed quite pleased with the drug's effects, with 80% stating that it had been either 'very helpful' (55%) or 'somewhat helpful' (29%). 10% stated that the drug had been 'harmful' or 'very harmful'.

This benzodiazepine has been

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About a quarter (27%) stated that they had to up their dose to continue to get the desired effect - a sign that tolerance could be forming - and 8% felt they may have developed a craving for the drug (a possible sign of addiction). Most people (71%) did not, however, feel that they developed signs of 'tolerance withdrawal'. (17% percent felt they did and 13% didn't know.)

New psychological symptoms tended to be anxiety, depression, poor cognitive function and loss of enjoyment of life.

Getting off these benzodiazepines appeared to be more difficult than with Klonopin. Most people who stopped the drug (62%) experienced minor or no negative effects, but over a quarter (26%) reported that they experienced severe or very severe side effects. Most people withdrew from the drug under a doctor's care, but 10% used a specialist or a detox clinic to do so.

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Once again withdrawal symptoms either were absent or quickly disappeared for most, with 70% reporting that they were over within 2 weeks but with a significant minority (14%) reporting that it took more than six months for the symptoms to disappear. Four of the seven people with withdrawal symptoms lasting more than six months took from 1-3 years for the symptoms to settle down.

A Third Benzodiazepine


About 13% of the 179 responders had tried a third benzodiazepine, with most trying either Valium or Restoril. The responses were similar with a slightly lower 'very helpful rating' (43%) and a higher (26%) 'no changes noticed' rating. Again, most were able to get off the drugs quickly and easily, but again a minority had difficulty.

To see all the survey responses click here to download the attachment.




 

Comments

Thanks Cort for your hard work putting all this together. there is much information here to process and I appreciate the charts and the comprehensive way this was presented.
The more real knowledge we have, the better choices we can make.
 
Cort, your results seem 'within the margin of error.'

Wikipedia results:

Approximately 10% of patients will experience a notable protracted withdrawal syndrome, which can persist for many months or in some cases a year or longer.
PR results:

14% of patients also reported that it took 3-6 months for their withdrawal symptoms to dissipate and 2% reported symptoms lasting over a year.
 
Thanks Cort for your hard work putting all this together. there is much information here to process and I appreciate the charts and the comprehensive way this was presented.
The more real knowledge we have, the better choices we can make.
For me this survey, while not as fine tuned as it could have been, suggested that low doses work for many people - which is very good news and bears out the experiences of the doctors on the web. The survey suggests you should be carefull, though, when you get in the higher dose range...and you start experiencing new symptoms or you feel like you need more of the drug to get the same results. If that's happening its probably a good idea to look elsewhere for help..

'When you do get stuck with these drugs you can really get stuck. Thankfully that only happens to a minority but it was still a significant minority and even one person having to go through what Gabby went through is too many.

I attached the complete report from the survey on this post....Among other things the comments are always interesting. We're a very supportive group .and many people provide comments - which is really nice.
 

Attachments

Thanks Cort for your indefatigable work as we try to understand ME and uncover the very best in research (or indeed what may not aid). You are a marvel. Love the graphics which cheer with humour - can you send to psychiatry UK perhaps, like they have not passed out like us ordinary mortals.
 
One thing that would have been interesting to know is how many patients were taking more than one benzodiazepine or z-drug (i.e. ambien or lunesta, which work on a subtype of benzo receptor) at the same time.

Patients who think they are taking a low dose of each of these drugs and their doctors sometimes deceive themselves. Even though 1mg/day is a moderate dose of Klonopin, the effect on the brain might be more similar to a high dose regimen if you are taking 1mg klonopin + 12.5 mg Ambien CR for sleep.

Risk of side effects, or experiencing withdrawal while still on the drug, also depend on whether you take all these drugs as a single dose at bedtime, or divide them throughout the day.
i.e. .5mg klonopin twice a day can be different than 1mg klonopin at bedtime.
 
Finally, one thing that was missing from the original article and this survey was an accurate discussion of "addiction." How common is Klonopin addiction, really?

Addiction is a very serious label. The cardinal symptom of drug addiction is commonly described as "inability to control use, despite harm." This manifests by a variety of behaviors such as taking escalating doses of the drug, repeatedly using the drug for the purpose of getting high or escaping reality, taking doses higher than a medically useful dose to induce intoxication or even overdose, and lying to doctors, friends, and family to obtain as much of the drug as possible.

Benzodiazepine addiction does happen. For example, there are reports out of the UK of patients who injected 1500 mg of Temazepam daily (addicts call the pills "jellies" or "eggs".. a dose of 30mg daily is typically prescribed for sleep). But true addicts of these drugs are quite rare, compared to other drugs that commonly cause addiction (i.e. Oxycontin).

Thus, I think we should be hesitant to talk about ME/CFS patients who are having an adverse reaction to Klonopin and develop some tolerance as "addicts". I don't think the person described in Cort's post was an addict- she consistently took the 3mg dose of Klonopin prescribed by her doctor and did not seek increasing amounts of the drug. The maximum FDA approved dose is 24mg for epilepsy. I think she was experiencing adverse effects (i.e. serious depression) from Klonopin, she had developed a tolerance, and needed medical assistance in order to withdraw safely.

It can be unsafe to stop taking benzodiazepines cold turkey, just like corticosteroids or many other drugs doctors prescribe. It is a good idea to talk with an informed doctor if you want to stop taking them.
 
What I DO know is that without intercession with 40 mg/day of Valium, decreasing to 6 mg/day over 30 years and then switching to Klonopin 4 mg/day decreasing to 2 mg/day, I would never have been able to lead a productive life as an Engineer, let alone learn to walk again or play tennis again!
 
What I DO know is that without intercession with 40 mg/day of Valium, decreasing to 6 mg/day over 30 years and then switching to Klonopin 4 mg/day decreasing to 2 mg/day, I would never have been able to lead a productive life as an Engineer, let alone learn to walk again or play tennis again!

Glad to hear it Bob...I think out little survey suggest that used and dosed correctly this drug works....Interesting that you started out high and then went lower; the opposite of the pattern we were worried about.

Your story makes me think I should start taking it :)
 
Thanks Cort for your indefatigable work as we try to understand ME and uncover the very best in research (or indeed what may not aid). You are a marvel. Love the graphics which cheer with humour - can you send to psychiatry UK perhaps, like they have not passed out like us ordinary mortals.

Thanks Enid.. I love graphics as well...Its always fun finding them :)
 
Cort,
Yes, it was a true lifesaver for me. As my symptoms have decreased over the past 46 years, I find myself to keep reducing the dose. I have to admit, my GP in Midland, MI was a PhD, MD from the University of Michigan and was willing to really dig to diagnose my condition..and this was in 1967, when most MDs were blowing people off as psych patients with ME/CFS. He tried many things, including antidepressants that made the symptoms worse, 40 mg of Librium, which might as well been sugar tablets --- no effect, good or bad.
It wasn't until I was tried on 40 mg/day of Valium that the symptoms suddenly subsided enough that I could start learning to put one foot in front of the other and learn to walk all over again.
I think my MD stuck with me because he knew I had been varsity football, basketball and tennis in HS and later varsity tennis and 50 mile road bike racer in college. Of course I had to learn all of these things all over again, but did it.
The benzos also improved my mental sharpness which was further improved by DHEA and vitamin B-12 injections closer to my University days. Unfortunately, I now have prostate cancer controlled by androgen blockers and DHEA might be contraindicated, so I live with a little less mental sharpness unless my MD and I find no adverse effects from it's use. I do have an Rx for injectable B-12, taken 3 times a week.
So I would recommend trying clonazepam if you are functioning very poorly, maybe not if you are marginally disabled. You will know within 2 or 3 days whether it is improving your condition or not worthwhile continuing.
 
Good survey. I know it would have been difficult, but would have liked to seen it to have multiple allowable answers on the continuum of "it was very helpful to me" to "it was very harmful to me," and then see if there was a correlation between any individual's opposing results and length of time on the med.
 
I am in that position to side with everyone who has had benefit (as I initially did) but bear forewarning to all those that may consider it for long term use or are trying to get off of it. I am currently at about a month off Klonopin, with about a three month taper from 1 mg to 0 mg, after being on it for 20+ years.

I thought that the bulk of withdrawal would be neurological/psychological. I ended up in the ER earlier today with tachycardia and racing high blood pressure. I had initially considered it the result of perhaps thyroid issues (including Synthroid use) or maybe even high doses of B12 (via injections and sublingual). The ER doc did not rule out the thyroid issues but given the chronology of events and how the symptoms were manifest, thought it was likely from Klonopin withdrawal. I think he may even have been a bit surprised that I was not seeking Klonopin, as many will do via an ER visit.

He was nice enough, but was not prepared to do anything with BP @ about 170/120 and pulse at @ 110 resting. He just said, look, your body is waking up. It was on a CNS depressant for 20+ years and now it has to find a new normal. That it throws many things out of whack; it may not be pleasant but can surely be expected. Sure it will be best in the long run, but it may take some time to get there.

- follow up with a doc

Well, I was just tired of seeing docs after that, came home, went off the very low carb diet, had some pizza and beer. Much better.

I would not dwell on it, but also found that klonopin withdrawal may cause POTS (or at least pseudo POTS) as well as a host of other symptoms. Granted, one can find just about anything to support an argument via the Internet, but here is a rather comprehensive list I found for Klonopin Withdrawal (below). I woud add that I am not a Search Engine Optimization Guru, but I see it conceivable that the sympotms are tagged with the phrase "Klonopin Withdrawal" to pair them more aptly in a Google search. Like most things on the Internet, there is typically motive beyond benevolence, so am not saying there is none from this site either. All things being equal, I still find it an interesting list.

Klonopin Withdrawal Side Effects
CARDIAC DISORDERS
Palpitation - Perceptible forcible pulsation of the heart, usually with an increase in frequency or force, with or without irregularity in rhythm. Klonopin Withdrawal
Tachycardia - Rapid heart rate. Klonopin Withdrawal

EAR AND LABYRINTH DISORDERS
Ear pain - Any pain connected to the inner or outer portion of the ear. Klonopin Withdrawal
Tinnitus - A sound in one ear or both ears, such as buzzing, ringing, or whistling, occurring without an external stimulus and usually caused by a separate condition, such as the use of benzodiazepines. Klonopin Withdrawal
Vertigo - A sensation of irregular or whirling motion, either of oneself or of external objects. Klonopin Withdrawal

EYE DISORDER
Blurred vision - Compared to normal, a distortion of vision. Klonopin Withdrawal
Mydriasis - Prolonged abnormal dilation of the pupil of the eye induced by a drug or caused by disease. Klonopin Withdrawal
Photophobia - An abnormal sensitivity to or intolerance of light, especially by the eyes, as may be caused by eye inflammation. An abnormal fear of light. Klonopin Withdrawal

GASTROINTESTIONAL DISORDERS
Abdominal pain - Pain between the chest and pelvis, stomach, intestines, liver, spleen, and pancreas. Klonopin Withdrawal
Constipation - Difficulty having normal bowel movement. Klonopin Withdrawal
Diarrhea - Excessive and frequent evacuation of watery feces. Klonopin Withdrawal
Dry mouth - When the mouth is dry beyond what might be normal. Klonopin Withdrawal
Dyspepsia - Disturbed digestion; indigestion. Klonopin Withdrawal
Dysphagia - Difficulty in swallowing or inability to swallow. Klonopin Withdrawal
Nausea - A feeling of sickness with the urge to vomit. Klonopin Withdrawal
Pharyngolaryngeal syndrome - Of or pertaining to the larynx or pharynx. Klonopin Withdrawal
Salivary hypersecretion - A continual or excessive amount of saliva that is uncontrollable. Klonopin Withdrawal
Vomiting - Ejecting all or part of the stomach contents. Klonopin Withdrawal

GENERAL DISORDERS
Asthenia - Loss or lack of bodily strength. Klonopin Withdrawal
Chest tightness - A feeling in the chest of contraction. Klonopin Withdrawal
Edema - An accumulation of an excessive amount of watery fluid in cells, tissues, or body cavities. Klonopin Withdrawal
Fatigue – The body feeling drained of energy. Klonopin Withdrawal
Feeling drunk - Feelings associated with drinking too much alcohol. Klonopin Withdrawal
Feeling hot or cold - An uncontrollable feeling of being too hot or cold that is abnormal for the temperature. Klonopin Withdrawal
Feeling jittery - An uneasy feeling often associated with the inability to remain still. Klonopin Withdrawal
Hangover - Feeling like the day after consuming too much alcohol. All or a few hangover sensations may be present. Klonopin Withdrawal
Increased energy - An abnormal amount of energy bordering on hyper. Klonopin Withdrawal
Loss of control of legs – Inability to control legs, such as restless leg syndrome. Klonopin Withdrawal
Malaise - A vague feeling of bodily discomfort, as at the beginning of an illness. Klonopin Withdrawal
Pyrexia – Fever. Klonopin Withdrawal
Rigors - Shivering or trembling, as caused by a chill. A state of rigidity in living tissues or organs that prevents response to stimuli. Klonopin Withdrawal
Sluggishness - A fatigue type feeling or dull. Klonopin Withdrawal
Thirst - An abnormal sensation of needing liquid. Klonopin Withdrawal
Weakness - A reduced state of normal energy and stamina. Klonopin Withdrawal

INFECTIONS AND INFESTATIONS
Influenza symptoms - The body feeling and at times the manifestation of flue like symptoms. Klonopin Withdrawal
Upper respiratory tract infections - Infection of the nose, sinuses, pharynx (part of neck and throat) or larynx (commonly known as the voice box). Klonopin Withdrawal

MENTAL DISORDERS
Abnormal dreams - Nightmares or dreams that are upsetting to the individual. Klonopin Withdrawal
Aggression - Hostile or destructive behavior or actions. Klonopin Withdrawal
Agitation - A feeling where something or anything could set a person toward anger or combativeness. Klonopin Withdrawal
Anger - Uncontrollable and volatile emotion with rage; usually an attempt to stop someone or something. Klonopin Withdrawal
Anxiety - A state of uneasiness and apprehension, as about future uncertainties. A state of intense apprehension, uncertainty, and fear resulting from the anticipation of a threatening event or situation, often to a degree that normal physical and psychological functioning is disrupted. Klonopin Withdrawal
Apathy - A feeling of no hope, such as if anything can be done it would not work. Klonopin Withdrawal
Bradyphrenia - A slowness of the mind. Klonopin Withdrawal
Confusion - An impaired orientation with respect to time, place or the form of an event. Klonopin Withdrawal
Depersonalization - A state in which the normal sense of personal identity and reality is lost, characterized by feelings that one’s actions and speech cannot be controlled. Klonopin Withdrawal
Depressed mood - A lowering of the state of mind or emotion compared to what a person normally feels. Klonopin Withdrawal
Depression - A feeling of no hope. Klonopin Withdrawal
Derealization - The feeling that things in one’s surroundings are strange, unreal, or somehow altered, as seen in schizophrenia. Klonopin Withdrawal
Disorientation – A loss of sense of direction, position, or relationship with one’s surroundings. A temporary or permanent state of confusion regarding place, time or personal identity. Klonopin Withdrawal
Dysphonia - An emotional state marked by anxiety, depression, and restlessness. Klonopin Withdrawal
Euphoric mood - A feeling of great happiness or well-being, commonly exaggerated and not necessarily well founded. Klonopin Withdrawal
Hallucination - False or distorted perception of objects or events with a compelling sense of their reality, usually resulting from a traumatic life event or drugs. Klonopin Withdrawal
Homicidal ideation - The formation of the idea or having the mental image of murder. Klonopin Withdrawal
Hypomania - A mild form of mania, characterized by hyperactivity and euphoria. Klonopin Withdrawal
Impulse control - A sudden pushing or driving force. A sudden wish or urge that prompts an unpremeditated act or feeling; an abrupt inclination. Klonopin Withdrawal
Insomnia - Chronic inability to fall asleep or remain asleep for an adequate length of time. Klonopin Withdrawal
Irritability - 1. The capacity to respond to stimuli. 2. Abnormal or excessive sensitivity to stimuli of organism, organ, or body part. Klonopin Withdrawal
Libido decreased - Sexual desire decreased. Klonopin Withdrawal
Libido increased - Sexual desire increased. Klonopin Withdrawal
Logorrhea - Incoherent talkativeness. Klonopin Withdrawal
Mania - A manifestation of bipolar disorder characterized by profuse and rapidly changing ideas, exaggerated gaiety, and excessive physical activity. Klonopin Withdrawal
Mood swings - The up and or down movement of emotions that are uncontrollable. Klonopin Withdrawal
Nervousness - Easily agitated or distressed. Klonopin Withdrawal
Nightmare - A dream creating intense fear, horror, and distress. Klonopin Withdrawal
Psychomotor retardation - The retardation of movement and or mental process. Klonopin Withdrawal
Restlessness - An uneasy feeling of not being able to be where one is located comfortably. Klonopin Withdrawal
Suicidal ideation - The formation of an idea or mental image of killing one self. Klonopin Withdrawal

METABOLISM AND NUTRITION DISORDERS
Anorexia - Loss of appetite, usually including a fear of becoming obese or a aversion toward food. Klonopin Withdrawal
Appetite decreased - A decrease in the feeling one needs food for survival. Klonopin Withdrawal
Appetite increased - An increase of the desire for food for survival. Klonopin Withdrawal

MUSCULOSKELETAL AND CONNECTIVE TISSUE DISORDERS
Arthralgia - Severe pain in a joint. Klonopin Withdrawal
Back pain - An unexplained pain anywhere in the back. Klonopin Withdrawal
Muscle cramps - Muscle being contracted to the point of discomfort. Klonopin Withdrawal
Muscle twitching - A rhythmic or irregular involuntary movement of any muscle. Klonopin Withdrawal
Myalgia - Muscular pain or tenderness, especially when nonspecific. Klonopin Withdrawal
Pain in limb - Pain in arm or leg. Klonopin Withdrawal

NERVOUS SYSTEM DISORDERS
Amnesia - The loss or impairment of memory. Klonopin Withdrawal
Ataxia - Loss of the ability to coordinate muscular movement. Klonopin Withdrawal
Coordination abnormal - Maintaining balance of the body difficult in comparison to what is normal for the person. Klonopin Withdrawal
Disturbance in attention - Not able to remain as focused as one was able to in the past. Klonopin Withdrawal
Dizziness - A disorienting sensation such as faintness, light-headedness, or unsteadiness. Klonopin Withdrawal
Dysarthria - Difficulty in articulating words due to emotional stress or to paralysis or in coordination of the muscles used in speaking. Klonopin Withdrawal
Dyskinesia - An impairment in the ability to control movements, characterized by spasmodic or repetitive motions of lack of coordination. Klonopin Withdrawal
Headache - A continual or time specific duration with pressure or pain within the head. Klonopin Withdrawal
Hypersomnia - A condition in which one sleeps for an excessively long time but is normal in the waking intervals. Klonopin Withdrawal
Hypoesthesia - Drowsiness. Klonopin Withdrawal
Hypotonia - Reduced tension or pressure, as of the intraocular fluid in the eyeball. Relaxation of the arteries. Klonopin Withdrawal
Memory impairment - Not able to recall an instance from the past as well as before. Klonopin Withdrawal
Mental impairment - The ability to think and reason diminished. Klonopin Withdrawal
Paresthesia - A skin sensation, such as burning, prickling, itching, or tingling. Klonopin Withdrawal
Sedation - An over expression of reduction of anxiety, stress, irritability or excitement. Klonopin Withdrawal
Seizures - A sudden attack, spasm, or convulsion, as in epilepsy. Klonopin Withdrawal
Sleep apnea - A temporary cessation of breathing while sleeping. Klonopin Withdrawal
Sleep talking - Speaking words while asleep. Klonopin Withdrawal
Somnolence - A state of drowsiness; sleepiness. A condition of semi- consciousness approaching coma. Klonopin Withdrawal
Stupor - A state of impaired consciousness characterized by a marked diminution in the capacity to react to environmental stimuli. Klonopin Withdrawal
Syncope - A brief loss of consciousness caused by a sudden fall of blood pressure or failure of cardiac systole, resulting in cerebral anemia. Klonopin Withdrawal
Tremor - An involuntary trembling movement. Klonopin Withdrawal

RENAL, THORACIC, AND MEDIASTINAL DISORDERS
Difficulty in micturition - Difficulty with urination or the frequency of. Klonopin Withdrawal
Urinary frequency - An abnormal frequency of urination. Klonopin Withdrawal
Urinary incontinence - Involuntary leakage of urine. Klonopin Withdrawal

REPRODUCTIVE SYSTEM AND BREAST DISORDERS
Dysmenorrhea - A condition marked by painful menstruation. Klonopin Withdrawal
Premenstrual syndrome - A group of symptoms, including abdominal bloating, breast tenderness, headache, fatigue, irritability, and depression. Klonopin Withdrawal
Sexual dysfunction - A non-normal, for the individual, behavior or ability to have sex. Klonopin Withdrawal

RESPIRATORY, THORACIC AND MEDIASTINAL DISORDERS
Choking sensation - A feeling of choking with or without cause. Klonopin Withdrawal
Dyspnea - Difficulty in breathing, often associated with lung or heart disease and resulting in shortness of breath. Klonopin Withdrawal
Epistaxis - Nosebleed. Klonopin Withdrawal
Hyperventilation - Abnormally fast or deep respiration resulting in the loss of carbon dioxide from the blood, thereby causing a decrease in blood pressure and sometimes fainting. Klonopin Withdrawal
Nasal congestion - A stoppage or restriction of the nasal passage. Klonopin Withdrawal
Rhinitis - Inflammation of the nasal membranes. Klonopin Withdrawal
Rhinorrhea - A discharge from the mucous membrane, especially if excessive. Klonopin Withdrawal

VASCULAR DISORDERS
Hot flashes – A sudden, brief sensation of heat, often over the entire body, caused by a transient dilation of blood vessels of the skin. Klonopin Withdrawal
Hypotension - Abnormally low arterial blood pressure. Klonopin Withdrawal

SKIN AND SUBCUTANEOUS TISSUE DISORDERS
Clamminess - Abnormally moist, sticky and cold to the touch.
Pruritus - Severe itching, often of undamaged skin. Klonopin Withdrawal
Rash - A skin eruption. Klonopin Withdrawal
Sweating increased - Abnormal increase of perspiration. Klonopin Withdrawal
Urticaria - A skin condition characterized by welts that itch intensely, caused by an allergic reaction, an infection, or nervous condition. Klonopin Withdrawal
 
AFCFS - When I was at the clinic detoxing from Klonopin, my blood pressure kept rising and they gave me medication to keep it in check. They did not release me from the medical detox until my blood pressure was stable. I had some spikes later on and they treated me as needed with high blood pressure meds. Even though they know that it is due to withdrawal, the high blood pressure still needs to be treated until it is stable. I'm a little worried that your doctor chose not to treat it. Do you have a bp monitor at home? If not, maybe you can go to the nearest drugstore to have it tested? If it continues to be this high, I would insist for the doctor to prescribe you meds until it stabilizes.

I am 8 months out now and I have been through the gamut of many of these symptoms that appear on the above list. It has not been an easy road but. I am focused on getting better and winning this battle. Thank God, the past two weeks, I have seen a major improvement and hope for more of the same.

wishing you good luck with this,
Nielk
 
I am in that position to side with everyone who has had benefit (as I initially did) but bear forewarning to all those that may consider it for long term use or are trying to get off of it. I am currently at about a month off Klonopin, with about a three month taper from 1 mg to 0 mg, after being on it for 20+ years.

I thought that the bulk of withdrawal would be neurological/psychological. I ended up in the ER earlier today with tachycardia and racing high blood pressure. I had initially considered it the result of perhaps thyroid issues (including Synthroid use) or maybe even high doses of B12 (via injections and sublingual). The ER doc did not rule out the thyroid issues but given the chronology of events and how the symptoms were manifest, thought it was likely from Klonopin withdrawal. I think he may even have been a bit surprised that I was not seeking Klonopin, as many will do via an ER visit.

He was nice enough, but was not prepared to do anything with BP @ about 170/120 and pulse at @ 110 resting. He just said, look, your body is waking up. It was on a CNS depressant for 20+ years and now it has to find a new normal. That it throws many things out of whack; it may not be pleasant but can surely be expected. Sure it will be best in the long run, but it may take some time to get there.

- follow up with a doc

Well, I was just tired of seeing docs after that, came home, went off the very low carb diet, had some pizza and beer. Much better.

I would not dwell on it, but also found that klonopin withdrawal may cause POTS (or at least pseudo POTS) as well as a host of other symptoms. Granted, one can find just about anything to support an argument via the Internet, but here is a rather comprehensive list I found for Klonopin Withdrawal (below). I woud add that I am not a Search Engine Optimization Guru, but I see it conceivable that the sympotms are tagged with the phrase "Klonopin Withdrawal" to pair them more aptly in a Google search. Like most things on the Internet, there is typically motive beyond benevolence, so am not saying there is none from this site either. All things being equal, I still find it an interesting list.

Klonopin Withdrawal Side Effects
It sounds alarming. Those numbers are really scary. I'm glad you came through the experience okay. I don't doubt that your Klonopin withdrawal played a role in your trip to the hospital.

I would like to possibly suggest another contributing factor though. When I was sitting in Dr. Klimas office a few years ago, I had a brief conversation with a 16 year old pediatric patient, who was there with her mother, to see Klimas. I asked her what was the "one thing" that impacted her the most negatively, or caused the most symptoms. Without hestiation, she told it was changes in the barometric pressure. Not just high, or just low, but the whip-sawing back and forth.

I have been getting idiopathic periods of rapid heart beat too. I don't know if my BP has gone up, but it certainly feels like it. I also get phases of extreme agitation. I always assumed it was just unexplained POTS/adrenal reactions acting irrationaly, as they do from time to time.

But based on comments like the young lady's, and a few other ME/CFS patients I've spoken to, I started checking the barometric pressure on a regular basis lately. And it does seem that there is some correlation between my general POTS/OI symptoms, and the back and forth between low-pressure rainy, windy periods-- followed by the obligatory cold snap, where the pressure goes back up. For some reason, the negative effects during the winter months seem worse than those of pressure change during the spring and summer.

The differences between low and high aren't huge. On a scale where 1000 to 1010 seems to be normal, we are talking about going from maybe 1007 or 1013-- up to 1025. But it is in the matter of one day. Given that we have extreme sensitivity to OI/ POTS, I wonder how much this has to do with triggering your cardiac dysautonomia? If we accept that we have low blood volume and poor circulation, I wonder if such barometric changes don't trigger dramatic adrenal panic phases. BP shoots up, as the body fears not enough oxygen is circulating. The ME/CFS body does not react well to pressure change.

http://www.usairnet.com/weather/maps/current/barometric-pressure/

But I'm glad you are feeling better. Take care of yourself.
 
Nielk - thanks, yes, I do have a BP cuff. My BP and HB had come down while in the ER, not to where they would most liked to have bee but in a safe range. Also, the ER doc wanted me to do followup with a regular doc this week.

I think one problem for me, as my body has been waking up from the CNS depressant effects of the Klonopin, everything has a new ultra sensitive feeling - not always, but sometimes in waves; it may feel for a time like I am walking on egg-shells because the soles of my feet have new sensation in them. The ability to appreciate smells has been noticed. Even the sensation of a breeze or zephyr upon the skin, a feeling that had been more callous, has been felt again. So then, is the sensation of having a BP cuff squishing around my arm; it feels somewhere between a la Mac Truck slowly rolling its tires over my bicep or a python constricting about it. In any event, I then get the feeling of a kid both apprehensive but excited about going on a roller-coaster for the first time, with BP and HB shooting up.

I was glad that the ER doc actually had a good sense of benzo withdrawal and was open to talking about it for a bit. Today, feel much rested. If I did not need to lose some weight and was not treating moderate nonalcoholic fatty liver, I would think that my one night of pizza and a few beers might be the advent of a new protocol, but think it really has been a combination of getting adjusted to no Klonopin in the system and likely the benefit of the B12 injections + sub-lingual.

I would like to possibly suggest another contributing factor though. When I was sitting in Dr. Klimas office a few years ago, I had a brief conversation with a 16 year old pediatric patient, who was there with her mother, to see Klimas. I asked her what was the "one thing" that impacted her the most negatively, or caused the most symptoms. Without hestiation, she told it was changes in the barometric pressure. Not just high, or just low, but the whip-sawing back and forth.
Thanks. Well, as I had just written the above, I also find this quiet interesting and a very plausible contributor. I never understood why things may happen in waves. It could be the way the body adjusts, but it also makes sense that there would be a "wave-like" or "whip-like" external factor such as the barometric pressure. Its a bit amazing that a 16 year patient would hone in on this, but I have also met people that are very attune to their sensitivities and what causes them; a bit like having a canary in a coal mine - it is good to be able to learn from them.

I needed to refresh my knowledge of barometric pressure after reading this, but did come across this table for barometric pressure and fishing. The site, Effects of Barometric Pressure on Fishing, lists some caveats about it, but wonder if OI/POTS could be similarly related.

Fishing.jpg
 
AFCFS

Interesting about the fish!

I notice big changes in symptoms in relation to barometric pressure. I hadn't tied it with BP fluctuations though.

Generally, all symptoms are worse for me when the pressure is falling or low.

Sushi
 
It sounds alarming. Those numbers are really scary. I'm glad you came through the experience okay. I don't doubt that your Klonopin withdrawal played a role in your trip to the hospital.

I would like to possibly suggest another contributing factor though. When I was sitting in Dr. Klimas office a few years ago, I had a brief conversation with a 16 year old pediatric patient, who was there with her mother, to see Klimas. I asked her what was the "one thing" that impacted her the most negatively, or caused the most symptoms. Without hestiation, she told it was changes in the barometric pressure. Not just high, or just low, but the whip-sawing back and forth.

I have been getting idiopathic periods of rapid heart beat too. I don't know if my BP has gone up, but it certainly feels like it. I also get phases of extreme agitation. I always assumed it was just unexplained POTS/adrenal reactions acting irrationaly, as they do from time to time.

But based on comments like the young lady's, and a few other ME/CFS patients I've spoken to, I started checking the barometric pressure on a regular basis lately. And it does seem that there is some correlation between my general POTS/OI symptoms, and the back and forth between low-pressure rainy, windy periods-- followed by the obligatory cold snap, where the pressure goes back up. For some reason, the negative effects during the winter months seem worse than those of pressure change during the spring and summer.

The differences between low and high aren't huge. On a scale where 1000 to 1010 seems to be normal, we are talking about going from maybe 1007 or 1013-- up to 1025. But it is in the matter of one day. Given that we have extreme sensitivity to OI/ POTS, I wonder how much this has to do with triggering your cardiac dysautonomia? If we accept that we have low blood volume and poor circulation, I wonder if such barometric changes don't trigger dramatic adrenal panic phases. BP shoots up, as the body fears not enough oxygen is circulating. The ME/CFS body does not react well to pressure change.

http://www.usairnet.com/weather/maps/current/barometric-pressure/

But I'm glad you are feeling better. Take care of yourself.
I wonder if that could explain the problems so many people have with flying...(?)
 
I wonder if that could explain the problems so many people have with flying...(?)
If people were able to ascertain a difference in the barometric pressure and there was some sense of polling criteria in place of "Fishing Trends," it might make for a useful chart.

World Health Organization: International travel and health
Cabin air pressure
Although aircraft cabins are pressurized, cabin air pressure at cruising altitude is lower than air pressure at sea level. At typical cruising altitudes in the range 11 000–12 200 m (36 000–40 000 feet), air pressure in the cabin is equivalent to the outside air pressure at 1800–2400 m (6000–8000 feet) above sea level. As a consequence, less oxygen is taken up by the blood (hypoxia) and gases within the body expand. The effects of reduced cabin air pressure are usually well tolerated by healthy passengers.
E.g. So maybe replace "Fish will tend become less active the longer this period remains" with poll results.