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Klonapin: Theories- Why Effective For Pots/autoimmune/ans/sleep/fm/breathing?


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I first got sick 3 years ago, got into the medical grindhouse, and while looking for a "cure" was prescribed 5 meds that couldnt help me with my breathing problems including Ativan. I was desperate, because while feeling dizzy, weak, and brain fogged I could not really stand feeling like I had to work so hard to breathe. True memory-, one night in the ER I begged the Physician to put me to sleep so I could rest. Later I was able to rule out cardiac, blood, pulmonary, and endocrine problems.

After 4 months of that and a trip to Mayo Jacksonville (where i was still eating cheerios and milk everyday--bad idea b/c of sudden onset allergy to dairy and gluten) an older physician finally prescribed clonazepam. I finally had a shred of my life back with this sudden onset Dysautonomia and Sleep Apnea (I was to find out later) because I didnt feel practically panicked 24/7. Which naturally led to theories i was having panic attacks, except for later diagnoses of Autonomic problems/AI/Rheum. diagnoses such as heat intolerance, syncope, couldnt climb stairs, couldnt work, etc, bad adrenal function etc. The elderly Doctor that described Klonapin told me: Ive been around a long time but nothing compares to this drug for certain patients---its like the miracle drug aspirin in a lot of ways".

I got on the chronic illness forums (POTS, FM, Nervous System, HPA Axis, Vagus, MS, Inflammation, Autoimmune, etc) and noticed a strange correlation--a lot of people were made functional by its use. In fact, my wifes friend with MS had been on it for 25 years. Even famous docs like Cheney (FM pioneer) used it as a frontline drug against excitotoxicity. A benzo apparently it has universal value to calm--not cure-- many and varied ailments within the AI and Central Nervous Systems of many chronically sick people. And I started wondering- Why?

Im wondering what other theories are as to why it can be effective (although obviously prescribed cautiously and most times short term because its addictive for some, and very powerful) but wikipedia had the general statements:

1. drug having anxiolytic, anticonvulsant, muscle relaxant, sedative, and hypnotic properties.

2. enhancement of the neurotransmitter GABA via modulation of the GABAA receptor

There are tons of other theories on why and how it works in the chronic category, but Im curious to hear your own. My own is pretty lame--that it simply calms the central nervous system from its condition of hyperstimulation from a multitude of causes.

***If anyone has any information on the interaction between clonazepam and norepinephrine, id be very interested, based upon the studies of vasoconstriction and sudden BP spikes:

When norepinephrine acts as a drug, it increases blood pressure by increasing vascular tone (tension of vascular smooth muscle) through α-adrenergic receptor activation; a reflex bradycardia homeostatic baroreflex is overcome by a compensatory reflex preventing an otherwise inevitable drop in heart rate to maintain blood pressure.

Norepinephrine is synthesized from dopamine by dopamine β-hydroxylase in the secretory granules of the medullary chromaffin cells.[10] It is released from the adrenal medulla into the blood as a hormone, and is also a neurotransmitter in the central nervous system and sympathetic nervous system, where it is released from noradrenergic neurons in the locus coeruleus. The actions of norepinephrine are carried out via the binding to adrenergic receptors.

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Clonazepam has been extremely helpful to my son. He started taking it in June and his nausea has significantly improved. He is starting to get his life back. Dr Afrin, his MCAS doctor, prescribed it, so it must also help MCAS patients as well. Ativan, which is in the same drug class, did not help at all, but Dr Afrin said some patients see positive effects from clonazepam when Ativan wasn't helpful. I don't know what makes it help his nausea or MCAS issues, but it has certainly made an extreme difference in his daily life.

Christy

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Hi Spinner,

This is a really good question. I don't know the answer but hopefully someone else can shed some light. My son was on clonazepam for a long time. However, his vocal tic kept getting worse and would not keep it under control. So he was put on Intuniv. This medication helps regulate serotonin and dopamine. However, I am wondering if the clonazepam increases the norepinephrine levels. If it does than this would answer why my son had to stop using this medication. In the beginning it did help with sleep but that effect wore off quickly. He now takes the extended release clonidine which works the opposite of clonazepam. It helps lower the norepinephrine levels. He has been sleeping through the night for almost 2 months.

Rachel

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I had success with Tranxene (clorazepate), a long acting benzo like Klonopin but milder. For me it was able to keep my HR down without decreasing my BP, and I think that's the main reason it worked for me. Most of my symptoms come along with the high HR, whether they're actually caused by it is debatable but when my HR is under control the other symptoms usually are too. That's my only clue as to how it possibly worked for me.

I was originally prescribed it before I was diagnosed, when I had a severe episode in my doctor's office that included pretty bad shaking and a heart rate of almost 200, and my doctor prescribed this specific med because he thought it would help with the shaking. I feel like this would suggest that I have hyper POTS and the med was treating that but my norepinephrine levels tested out as normal so I can throw that theory out the window for myself. I haven't tried a beta blocker but my guess is if I found one that didn't make me fatigued it would have a similar effect as a benzo drug on me.

It really doesn't help me convince people that I'm not suffering from anxiety when the only drug that has ever helped me is an anxiety med, ha ha.

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One of the positive things that I read about klonopin (but I never really researched this aspect much) is that it's a mast cell stabilizer, so some people with mast cell issues may benefit from it.

If you find that the medication is helping you - good for you.

Edited by Alex
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Spinner - not a Klonopin fan due to bad experiences that Alex described, but glad something helps you.

Alex - I've been meaning to ask you, now that you know you have the positive antibody (sorry I forget which one) AAG? what are your thoughts on benzos relationship to POTS for you? Do you think it was just a bad coincidence that you came off around the time you developed symptoms or do you think the withdrawal could have triggered an autoimmune response or something?

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Alex - a wee bit confused. Do you not think the postive AChR is what's causing the POTS symptoms? And if so, do you think it's possible (and this may reaching a bit), but is it possible the trauma from the benzo withdrawal could have triggered an autoimmune response.

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I have no idea why Ativan acted like an adrenaline spike.

If I had that answer, I might have a lot more.

Its almost a crapshoot with many of these, trial and error.

1mg klonapin can be a heavy hit depending on your body weight. I imagine most people split them

in half, or do lower milligrams.

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Naomi,

There is some research that shows that some POTS patients have a low positive AChR antibody.

Is it possible for benzo w/d to have triggered an autoimmune response? I don't know and I don't think anyone has the right answer to this.

Edited by Alex
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I got on the chronic illness forums (POTS, FM, Nervous System, HPA Axis, Vagus, MS, Inflammation, Autoimmune, etc) and noticed a strange correlation--a lot of people were made functional by its use. In fact, my wifes friend with MS had been on it for 25 years. Even famous docs like Cheney (FM pioneer) used it as a frontline drug against excitotoxicity. A benzo apparently it has universal value to calm--not cure-- many and varied ailments within the AI and Central Nervous Systems of many chronically sick people. And I started wondering- Why?

Spinner,

Am glad Klonopin is helping you. As a patient with CFS and now hyper pots, it's helped me too.

Please allow me to make clear up a misconception about Dr. Cheney. He is not considered a FM pioneer as you suggested, he is in fact a CFS pioneer. CFS and FM are not the same, but often confused by MD's as being 'same'.

I was a patient of Dr, Cheney for 15 years, so please allow me to explain the difference between CFS and FM. While I can't begin to explain all the differences, I'll explain it simply. CFS is a complex disease that is both immunologic and neurologic. FM is neither of these. Some people have both, but FM has gained wider acceptance in the medical community because it does not involve the complicated neuro-immune involvement. This is not to say that some patients don't have both CFS and FM, but they are separate entities.

Dr, Cheney certainly knows about FM and treats it, but it's CFS that he's not only passionate about but has championed, and made himself known for.

You're correct that he prescribes Klonopin as one of his primary meds against CFS, and he prescribed it to me decades ago. I've been on it since. While some people feel it's 'addictive' I think that's an individual component. I've been on the precise same dose for decades, and have not needed to increase my dose to maintain the same benefit.

Dr. Cheney was interviewed and asked if he were on a desert island, 'What 3 medications for CFS would he take with him'. Klonopin was first and magnesium was also in the top three. Magnesium is essential for sleep and also muscle function.

I was also prescribed Klonopin for my CFS when I switched from Dr Cheney to a Mayo Jax doctor. It's very well known drug for controlling pain without being addictive in the sense that opioids are addictive. It's a complicated function, but Klonopin is not a scheduled drug.

Just needed to share that Dr. Cheney is first and foremost a CFS expert, and very much a player in the ongoing investigation of neuro-immune involvement in CFS, and also that Klonopin is a well recognized drug and very safe drug for pain management.

Am glad it's helping you, and am not at all surprised a Mayo doctor prescribed it for you.

Wishing you the best,

K

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Interesting Alex. I would think it's possible that since you don't have the typical AAG symptoms and there is some research that some POTS patients show low levels of this auto-antibody, then maybe you fall in that camp. I guess time will tell with the IVIG - if you respond, then I would think the AAG is significant.

Sorry to intrude on your thread Spinner. :)

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Dr. Cheney states:

15. Klonopin

Klonopin or Clonazepam is a sedative hypnotic of the benzodiazepine class. Klonopin was first approved for use in children as an anti-seizure drug. It raises the threshold for neuronal depolarization and is therefore inherently neuroprotective. It is used in CFS for sleep induction and has interesting additional properties as an indirect antioxidant through receptor binding within the mitochondria that reduces RIRR (ROS Induced Release of ROS) by the mitochondria. Klonopin seems to work better then Clonazepam.

So Klonopin is inherently neuroprotective,
As some of you may or may not know, Dr. Cheney had a heart transplant a number of years ago, and has a great deal of expertise in the treatment of POTS, as well as CFS. He has spoken and written a great deal about heart issues in CFS patients.
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Thanks for that distinction re FM and CFS.

I seem to be like you in that Klonopin is not addictive, nor does it give me a buzz of anykind. If anything, it can make me sleepy.

I realize that many people have gotten addicted to it and had a nasty time of it getting off it. It can also be dangerous mixed

with alcohol or going off "cold turkey". Very bad idea.

Fortunately each med seems to help us individually, which must unmask the truth of the correlations between autimmune,

neuro, endo, gastro, etc.

Physicians were confounded when i refused to use Ativan, lol, because at first i got the old "you have anxiety" **. But

when I refused meds, it got their attention. They see so many druggies in the course of a day.

I wouldnt be here without Klonopin.

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Hi Kitt,

I also have had a positive long term experience with a Benzodiazapine. However, mine has been Ativan. I do not have any sedation from it, however, I do have a response in lowering my heart rate significantly combined with my other medications.

I wanted to ask you a couple of questions from your recent posts regarding klonopin simply for clarification.. I'm going to quote what you mentioned, " Klonopin seems to work better then Clonazepam." ..Isn't clonazepam a generic for klonopin? Do you think the name brand works better than the generic?

Also, I know that Klonopin is a controlled substance. Atleast that's what the labels say on my bottles I get filled monthly as well as the pamphlets that come along with it. It's not just in NYS where I live, it's a federal law that it's controlled. That is for all types of benzodiazapine's as far as I know.

I'm glad you have also had a good experience regarding the use of a benzo, it has really helped me also. Good luck with everything!

Sarah

Dr. Cheney states:

15. Klonopin

Klonopin or Clonazepam is a sedative hypnotic of the benzodiazepine class. Klonopin was first approved for use in children as an anti-seizure drug. It raises the threshold for neuronal depolarization and is therefore inherently neuroprotective. It is used in CFS for sleep induction and has interesting additional properties as an indirect antioxidant through receptor binding within the mitochondria that reduces RIRR (ROS Induced Release of ROS) by the mitochondria. Klonopin seems to work better then Clonazepam.

So Klonopin is inherently neuroprotective,
As some of you may or may not know, Dr. Cheney had a heart transplant a number of years ago, and has a great deal of expertise in the treatment of POTS, as well as CFS. He has spoken and written a great deal about heart issues in CFS patients.
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Hi Sarah,

Am glad you've had a good experience with Ativan. Both Klonopin and Ativan are benzodiazepines but they are very different animals. Klonopin is an anti-seizure medication. Ativan is an anti-anxiety medication. Both medications (like most meds) have off label uses. I don't have experience with Ativan but years ago had a script for Xanax (also a benzo) and it made me feel 'drugged' but everyone is different. Am glad it's helping you.

Yes, Clonazepam is the generic for Klonopin. Dr. Cheney was stating that he feels the brand Klonopin works better than the generic. I used to take Klonopin but switched to Clonazepam when my insurance changed. In my experience Klonopin is the stronger of the two. Many people notice a profound difference between brand medications and their generic form. (Those were not my statements regarding Klonopin, I was quoting Dr. Cheney.) I notice such an extreme difference between Zanaflex and the generic that I pay over 125.00 out of pocket for the brand.

In the U.S. controlled substances are 'scheduled'.

Narcotics are considered Shedule I. Benzos are Shedule IV.

Shedule IV drugs can be phoned in by a doctor, unlike Schedule 1 drugs, (which include opiates), and Schedule IV drugs can be refilled 5 times in a 6 month period.

Tramadol is also a Shedule IV drug in some states. Another Schedule IV drug is an antidiaarheal drug called Difenoxin, so go figure.

Schedule I drugs are very heavily monitored in the state where I live, (because of so many pill mills) and a recent news story tells of people who need pain medication driving to dozens of pharmacies who will not fill their scripts. Pharmacies are being scrutinized that heavily.

Schedule IV drugs are not monitored that I've noticed. I've had to get six months at a time before when I was going overseas for a long period, and it was a non-issue to get that much at one time.

Glad you're getting some relief with Ativan.

I think everyone is different when it comes to benzos. I don't discount peoples negative experience, but Klonopin/Clonazapam was and continues to be life changing for my CFS.

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I've been on both Ativan and klonopin. They were not prescribed for my CFS or hyper pots. I was diagnosed at Mayo Clinic in Rochester mn by in the pots clinic. My main neurologist there is Dr. Fealey.

Originally I was given in Ativan pre diagnosis when I was admitted to a local hospital. It did very little to lower my heart rate or blood pressure, however I was able to sleep.

A month or so later my EP changed my script to Klonopin. It seemed to help with fear and I did sleep better with my nighttime dose.

I was on klonopin for somewhere between 2-3 years. At some point it did not help me sleep any longer. Dr. Fealey also told me that it wasn't recommended to pots patients that it could increases dizzyness and orthostacic intolerance. I decided on my own to stop taking klonopin and thankfully had no issues with doing so.

Initially I truely thought klonopin was the best "treatment". In retrospect it worsened my brain fog as well as my short term memory. It also can slow reaction times which can be an issue.

For me Klonopin didn't "fix" anything and did give me additional problems. At the time I thought it helped me, but now I realize long term I'm better off without benzos.

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Alex,

This is a well known article among CFS patients, and the doctors commenting are all leading CFS experts, and yes, the article is specific to CFS patients. I personally find the comments by the doctors to be more compelling than the survey. I didn't participate in this survey, and can't guess as to what cross section of people did.

This patient is taking what's considered a MASSIVE dose. 3mg a day is LOT. (Dr. Klimas, my current CFS doctor points this out in her commentary in this article.)

Quoting Dr. Bateman from the article:

Clonazepam, like any other drug, it neither Evil nor Good. One must simply learn about how the drug works and use it with expert guidance.

Indeed!
I've taken 1.5 mg for 20 years, and have never developed a tolerance issue. But everyone is different. I think that's key.
Also, different people have very different variables for developing 'dependence' or addiction. Some people develop addictive behaviors to all kinds of things...Food, drugs, internet habits, (including forums) and just about anything.
So each person much know their own strengths and weaknesses in terms of medication. We need good guidance from doctors but we also have to be aware of our own nature, and biologic strengths and weaknesses.
K. jay, am glad you discovered that Klonopin was not a good fit for you, and glad you're satisfied with not taking it.
As a CFS patient, I've had a different experience.
Klonopin was prescribed to me for over ten years by a Mayo doctor for CFS when I stopped seeing Dr. Cheney (when he stopped taking insurance.)
We all are different, and some of us have illnesses and conditions in addition to pots alone, and are balancing treatments to achieve optimal health. My attitude toward all medication is that if you can do without it, don't take it.
Best,
K
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