Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 12, 2012.
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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.'
That's good news
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.
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!
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 Enid.. I love graphics as well...Its always fun finding them
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
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,
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.
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.
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.
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.
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
E.g. So maybe replace "Fish will tend become less active the longer this period remains" with poll results.
You can also try a Google Site Search
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