Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

[heapsreal]

I have tried klon and gabapentin. Gabapentin wins for me hands down. No extreme sedation the next morning. Sometimes I get easily agitated (probably low gaba), and klon does nothing for this. It just puts me to sleep. Gabapentin at night puts me to sleep but the next day I am not nearly as on edge/agitated/angry. Gabapentin is basically high dose gaba that crosses the BBB well. If you guys tried gabapentin I think you'd throw klon in the trash.

They actually found gabapentine has minimal effects on gaba receptors, it appears to work as a calcium channel blocker,
Pharmacology

Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors. The mechanism of action that leads to its rapid analgesic effect is simply unknown.

Some of its activity may involve interaction with voltage-gated calcium channels. Gabapentin binds to the ?2? subunit (1 and 2) and has been found to reduce calcium currents after chronic but not acute application via an effect on trafficking[40] of voltage-dependent calcium channels in the central nervous system.[41] Another possible mechanism of action, reported by Ben Barres and colleagues in Cell in 2009, is that gabapentin halts the formation of new synapses.[42]
http://en.wikipedia.org/wiki/Gabapentine

If gabapentine helps it might be worth looking into other calcium channel blockers.
alpha 2 adrenergic agonists like tizanidine and clonidine might also be helpful for those who have anxiety, insomnia etc etc and also been used in POTS

cheers!!!

 

[taniaaust1]

I would really, really, really appreciate it, if some of Dr Cheney's patients can clue as in as to what he says about the " miracle" drug Klonopin - as far as being totally unable to taper off it. Does he have any recommendation as to a method of achieving this. (I mean without dying from seizures?)

I think I remember reading he didnt have any issues in his patients with the dose he prescribes.

I used to take his recommended lowest dose.. I cant remember now what it was. It may of been .25mg daily and it did help me. I nowdays dont need anything for the neuroexcitability and for anxiety.

At the time I was taking it.. probably was when my MCS was at its worst and I got no side affects from that drug (other then it exasserating some another condition I already had so was meant to be contraindicated for me). For me it was a huge relief to take at the time with the symptoms I had. I had no trouble stopping it (I think i was on it for a few months, maybe a bit longer).

Its interesting how this drug ME/CFS wise was great for me but Ive never managed to be able to take SSRI, SNRIs or quite a few other drugs.

No ideas if he's since changed his views but Ive never seen anything written that he has.

 

[hixxy]

They actually found gabapentine has minimal effects on gaba receptors, it appears to work as a calcium channel blocker,
Pharmacology

Gabapentin was initially synthesized to mimic the chemical structure of the neurotransmitter gamma-aminobutyric acid (GABA), but is not believed to act on the same brain receptors. The mechanism of action that leads to its rapid analgesic effect is simply unknown.

Some of its activity may involve interaction with voltage-gated calcium channels. Gabapentin binds to the ?2? subunit (1 and 2) and has been found to reduce calcium currents after chronic but not acute application via an effect on trafficking[40] of voltage-dependent calcium channels in the central nervous system.[41] Another possible mechanism of action, reported by Ben Barres and colleagues in Cell in 2009, is that gabapentin halts the formation of new synapses.[42]
http://en.wikipedia.org/wiki/Gabapentine

If gabapentine helps it might be worth looking into other calcium channel blockers.
alpha 2 adrenergic agonists like tizanidine and clonidine might also be helpful for those who have anxiety, insomnia etc etc and also been used in POTS

cheers!!!

I have a pretty severe intolerance of calcium supplementation. Overtimulation, sensitivity to bright like goes throught the roof. Maybe this is something applicable for me?

 

[heapsreal]

I have a pretty severe intolerance of calcium supplementation. Overtimulation, sensitivity to bright like goes throught the roof. Maybe this is something applicable for me?

med working on calcium channels i think is different to being allergic to calcium, may need to look into it abit more.

 

[adreno]

I have a pretty severe intolerance of calcium supplementation. Overtimulation, sensitivity to bright like goes throught the roof. Maybe this is something applicable for me?

Yes, gabapentin will protect against exitotoxicity (which is basically too much calcium entering cells).

From wikipedia:

"Excitotoxicity is the pathological process by which nerve cells are damaged and killed by excessive stimulation by neurotransmitters such as glutamate and similar substances. This occurs when receptors for the excitatory neurotransmitter glutamate (glutamate receptors) such as the NMDA receptor and AMPA receptor are overactivated. Excitotoxins like NMDA and kainic acid which bind to these receptors, as well as pathologically high levels of glutamate, can cause excitotoxicity by allowing high levels of calcium ions[2] (Ca2+) to enter the cell. Ca2+ influx into cells activates a number of enzymes, including phospholipases, endonucleases, and proteases such as calpain. These enzymes go on to damage cell structures such as components of the cytoskeleton, membrane, and DNA."

http://en.m.wikipedia.org/wiki/Excitotoxicity

 

[xks201]

I mean it is not something I can really take during the day without being zoned out. Some people can take a ton of it though without problems. At night it's fine though. Still get anxiety during the day, but that is most likely from bad gut bacteria.

 

[Nielk]

Is there anyone on this forum who is a Cheney patient?

I have read from an article quoting Cheney that he recommends Klonopin for his patients. He even says that at time of clashes, it's ok to double your dose to get you through it.
He also says that he never had a problem withdrawing patients from Klonopin, once they were cured???????????????????????????????????????????????????????????????????????????

How many patients has he cured? It is amazing to me that I have not heard of a Cheney patient on this forum and I know they are not all doing well and not needing a forum.

Are you all sworn to secrecy and can't even divulge that you are a patient?

I wouldn't really care if you are hiding except for the fact that the Klonopin that I'm on is destroying me and no one has an answer for me of how to safely taper off of it.

 

[xchocoholic]

Hi Neilk,

I'm not a cheney patient but thought I'd respond anyways. FWIW .. I hadn't heard that he was curing his patients. I wonder what exactly he uses and if it's only certain PWCs. The definition of ME/CFS leaves a lot to be desired.

FWIW ... I weaned myself off Klonopin after 16 years of taking it but it took 4 months and I have to strictly avoid certain foods and chemicals that are toxic to me. At this point, gluten, hfcs, b12, p5p, b6, caffeine, "no salt" / potassium and juicing (I'm going to play with this again soon) cause me to feel like I'm buzzing during the day and keep me up all night long ... Fabreze nailed me once too so I avoid chemicals too.

Avoiding putting toxins in or on my body on purpose keeps my MCS down to the point where I can handle perfumes, etc when I go out. I notice more chemicals than others but they don't make me feel sick.

In case you just want off the Klonopin, I use SUN THEANINE in place of Klonopin if I'm wired and can't sleep or my myoclonus is acting up. I have used it during the day before too when I was being exposed to gluten 24/7 and felt jittery. Taking 100 mg every 3 -4 hours worked and didn't make me sleepy.

Granted, I'm just managing my symptoms but it's all I've got for now.

tc ... x

 

[Nielk]

Thanks xchocoholic for your reply. I'm glad to hear that you were able to wean off Klonopin which you were on for 16 years. It's a great feat.
I am on a sugar free, dairy free, gluten free diet.
I also have many sensitivities. I can't handle perfumes, most fabrics any anti depressants.
Did you use the Sun Theanine to help withdrawing from Klonopin? Were you a on a constant dose of Klonopin during these 16 years?

I tried to use the Ashton method of tapering but it directs you to slowly substitute to Valium. I tried it with under a doctor's care. It looks like I'm sensitive to Valium. It does the opposite for me than it is supposed to do. It makes me wired and I was up all night. I have tried many times a very slow taper but, it doesn't work for me.

Thank you for sharing your experience.

 

[hixxy]

med working on calcium channels i think is different to being allergic to calcium, may need to look into it abit more.

I wasn't considering that to be a sensitivity / allergy reaction, more a raising extraceullar calcium reaction therefore my calcium to flood into said calcium channels.

 

[xchocoholic]

Thanks xchocoholic for your reply. I'm glad to hear that you were able to wean off Klonopin which you were on for 16 years. It's a great feat.
I am on a sugar free, dairy free, gluten free diet.
I also have many sensitivities. I can't handle perfumes, most fabrics any anti depressants.
Did you use the Sun Theanine to help withdrawing from Klonopin? Were you a on a constant dose of Klonopin during these 16 years?

I tried to use the Ashton method of tapering but it directs you to slowly substitute to Valium. I tried it with under a doctor's care. It looks like I'm sensitive to Valium. It does the opposite for me than it is supposed to do. It makes me wired and I was up all night. I have tried many times a very slow taper but, it doesn't work for me.

Thank you for sharing your experience.

Hi again ...

I'm not sure what you mean by constantly. I took it every nite up until April ? 2006 , per my doctors instructions, for nocturnal myoclonus (jerking when entering rem) so I could sleep. I typically had to take Benadryl, Trazodone, etc too and these didn't always work. During the day I just buzzed and felt horrible all the time. Brain zaps, nausea, ataxia, moodiness, etc etc ... I never thought to take it during the day.

I didn't start out to wean myself off Klonopin, I just noticed after 7 months on the elimination diet that I was feeling like a zombie during the day and related it to taking Klonopin. I wasn't taking anything else at the time. I had eliminated all common food intolerances + all chemicals + anything I knew bothered me per my doctors instructions.

I started weaning myself off of it very slowly. I reduced it by 1/8 of a pill at some points and if I felt bad, I went back up to the previous dose. It seemed to take forever, esp the last 1/8 - 1/16 of the pill.

I used valerian root tea to help with this. It tastes horrible but it worked. I bought it in bulk at my hfs and made it super strong so I only needed a few sips. I used it for the psychological angle too cause I read that weaning from Klonopin could be dangerous and I have a seizure disorder. And I was doing this AMA ... ; )

I didn't try the sun theanine until about 3 + years ago. I was still having myoclonus from gluten cross contamination (which is freaking everywhere) and read that theanine was the alternative for Klonopin. It worked great ...

That was up until last week and I had to take a Klonopin to sleep. I think the juicing is nailing me now. I started juicing in March and had to come off the B6 I'd been taking since Dec ?, so I could sleep a few weeks ago. I stopped juicing 2 days ago and slept like a log last nite without klonopin .. knock on wood ... (I have a thread on good energy versus bad energy where I'm looking at this. It appears that nutrients in excess are excitotoxins for me.)

I took 100 mg theanine every 3 - 4 hrs a few years ago during the day cause I was being exposed to gluten 2/4 7 by company and I just had to deal with it. I'm such a good host ... lol .. But I didn't take theanine during the day this time because I want to see what's bothering me. So far, it looks like it was the juicing.

Sorry this is so long. I hope it helps ... tc ... x

 

[xchocoholic]

Thanks X-Choco -- excellent points regarding identifying and removing potential contributing factors to excitoxicity. Weird question, but do you know if the sun theanine -- is that made from green tea, and if so, does it still have tannins?

Hi Danny,

I can't take credit for identifying all excitotoxins, my doc started me looking at this. She has a sister with FM and was trying to help her. It wasn't until I started feeling calmer that I was able to identify these on my own tho. And even then I totally missed out on Caffeine for 5 years ... duh ... lol ... I was only using a tiny amount but even that wired me for at least 24 hours. Something, either my heart or adrenals would just shake, rattle and roll when I use caffeine ... lol ...

I never thought to look at tannins. It just worked like a miracle the very first time I took it so I kept on taking it. I'm using Suntheanine by Enzymatic and have for several years now.

tc ... x

Ps If I'm having a rough nite for any reason, upset stomach, anxiety over stress, etc ... I have to take melatonin and 5htp for sleep too. My body isn't producing those if I'm stressed anymore.

 

[leela]

Nielk, could you be more specific about how Klonopin has become a nightmare for you?
Do you mean coming off it is nightmarish? Why are you wanting to come off?

My interpretation of Cheney's statement was that once it is no longer needed the patient has no trouble tapering off. If your brain is still under siege from excitatory neurotoxicity, it's possible the body will make a fuss when you try to stop the thing that's protecting it.

If I were to taper (I've been on a small nightly dose of c-pam for about three years now) I would personally not chose do it with valium. Somehow valium feels "yuckier" to me than c-pam, even though they are in the same family.

Theanine is really my friend, you might want to give it a try as you taper. I use it to thwart attacks of that tired/wired feeling--or when I've overdone it on the green tea

I have never ever felt the urge to take more c-pam, in fact am taking less than my original dose. I occasionally take a quarter tablet (.125 mg) if I get a bad exposure out in the world of chemical yuck.
I do not feel at all addicted, not remotely, though dependent in the sense that I feel it helping, and don't want to give up that gain. I am a very non-Rx kind of person, so this is saying something!

However, we are all different. Investing in a bottle of theanine won't break the bank, and is a useful one in my personal toolbox.

Oh and hixxy, a whole 1mg is a lot! I take my .5 at night because I get quite floaty from it. It really helps me sleep. I could never function during the day, even on the .5mg. But a quarter tablet and I can still drive, think, function, yet avoid a sensory storm from a chemical exposure.

my 2

 

[Nielk]

Hi Leela,

The reason that Klonopin is a nightmare for me is because I have slowly increased the dosage throughout the years because each time I became tolerant to it and it didn't help anymore, my dose was raise until it worked again. I am now taking 3mg every evening and it does nothing for me. It doesn't make me sleepy. It doesn't calm me down. I have been at this dose for at least a year and my body/brain has been screaming for more but, I refuse to raise the dosage since long term usage of this drug is very dangerous and I've been on it for 6 years. I take in addition, to be able to sleep somewhat, Ambien CR 12.5 which gives me 4 hours of sleep. I take 2 Benadryl almost every 4 hours because of my terrible allergies causing excrutiating sinus pain along with 4 advil. At times that is not enough for the pain so I take in addition Vicodin.

I'm looking at what I'm doing and I have become a drug addict. I am very emotional/sensitive/edgy - I think because I'm not raising the level of Klonopin. I'm addicted to it.
Anyone, who would do any research on this will see tons of forums on line for people who are addicted to Klonopin and can't get off. Some people die from withdrawal. I don't know how people here don't realize the dangers involved here. I also think (can't be sure) that my level of pain is so increased and unbearable because of the Klonopin withdrawal state I'm in - just by not increasing the dosage.

Am I the only one with this problem?

 

[hixxy]

How vicious can nocturnal myoclonus get? Is this purely a muscular thing, or can you get a full nervous system "jolt"?

I've had this problem when falling asleep since the end of 2010. Only seems to happen during the day thank god. As about the nod off to sleep I get like a jolt through my body. I completely gave up on daytime naps about a year ago. It developed not long after I developed really strong intolerance of dietary glutamates.

hixxy

 

[leela]

Oh, dear Nielk, what a shame! I guess I'm very fortunate to require such a tiny amount.
I can completely understand why you would want to get off it, much less keep increasing.
But don't call yourself a drug addict--be so so gentle with yourself and remember you are doing the best you can to live with a very cruel taskmaster.

Certainly some more research into other things that are neuroprotective is in order. (I'd go on a research jag for you but I'm in the middle of moving. This brief visit to the forums was a reward for having gone through two boxes of moldy old receipts and stupid paperwork. I burnt it all--totally satisfying

I'll PM you if I think of something genius.
In the meantime, know you are loved and right this very moment you are okay

 

[hixxy]

Neilk: Is there nothing that you can switch to that is easier to withdraw from? (I'm ignorant of long term benzo problems for good reason, I've avoided them as best I can, I don't want to find out!)

There does seem to be some people who can withdraw without any problems. I know of someone in Australia who goes through 50 pack of 5mg valium a month (I know this isn't klonopin), but often runs out earlier in the month, but doesn't experience withdrawal for the rest of the month.

hixxy

 

[leela]

How vicious can nocturnal myoclonus get? Is this purely a muscular thing, or can you get a full nervous system "jolt"?

I've had this problem when falling asleep since the end of 2010. Only seems to happen during the day thank god. As about the nod off to sleep I get like a jolt through my body. I completely gave up on daytime naps about a year ago. It developed not long after I developed really strong intolerance of dietary glutamates.

hixxy

hmm this is interesting to hear, as i did not know of the connection with the jerky-things and glutamates. theanine crosses the blood/brain barrier and acts as a glutamate receptor antagonist,
proteting the brain from the harmful effects of high glucocorticoid levels.

 

[xchocoholic]

Myoclonus can be mild or severe. I've had them in my abdomen before and I swear I cleared my bed ... .. There are different types of myoclonus including one that causes your hand to jerk when you try to write. I have that one still .. It's not as bad now but it makes writing a nightmare. Actually, I don't have that in my hands anymore. I just have problems with fine motor skills and writing.

The only reason I thought theanine would work for myoclonus is that I knew Klonopin worked for me and theanine is the natural alternative for klonopin. I don't understand how it works and if it's actually working on glutamate receptors when it solves myoclonus because I could'nt find anything that I could understand on the web about the mechanics of myoclonus. Besides, once I had a solution to this problem I needed to move on to try to understand my other symptoms.

Nielk,

I'm sorry to hear that you're struggling with this ... HUGS ... I wouldn't be concerned over your med usage either. If you need them you need them. I was on quitea few when I first came down with this dd too. And I'm not sure I coud've gotten off them in the beginning. ALTHOUGH, I'd give anything to have known about holistic medicine / gluten / excitotoxins back then.

fwiw tho ... It may help you to go on the WAHLS diet. Over and over again I'm, seeing how diet is helping people regain their health. The paleo diet and now the wahls diet with plenty of veggies is helping me. I missed the boat when I went on the paleo diet by not eating plenty of veggies and eating too much meat. We have a thread here on the diet if you're interested. It eliminates toxins and provides mega nutrients in the proper form. And IMHO, we need both .. tc ... x

Ps please don't think i'm trying to push a diet change on you. I understand how stressful this dd can be. I was just suggesting it as an option ..

 

[richvank]

Hi, NeilK.

Please remind me as to whether you have tried methylation treatment, and if so, what happened.

We are of course talking about excitotoxicity, which is caused by overexcitation of the NMDA glutamate receptors on neurons, and Klonopin helps to quell that, but does not deal with the root cause.

I think the root cause is that too much glutamate is being left in the synapses. It's supposed to be pumped out by the astrocytes, converted to glutamine, and sent back to the presynaptic neurons to be used again by conversion to glutamate.

But not enough is being pumped out and being recycled. Why?

This requires ATP, for both the ion pumps and the glutamine synthetase reaction.

I suggest that in ME/CFS, and especially when there is MCS, the astrocytes are not able to produce ATP at up to a normal rate.

Why not? Because of mitochondrial dysfunction.

What causes that? Glutathione depletion, mainly. Note that Dr. Shungu and colleagues at Cornell Medical Center in NYC recently reported that they had found glutathione depletion in the brain in ME/CFS, using magnetic resonance spectroscopy scanning of part of the brain. If glutathione is depleted, it is a natural consequence that there will be mito dysfunction, so I think all of this fits together.

What can be done about it? I know I must seem like a stuck phonograph record, but methylation treatment has got to be the answer, because it has been found to raise glutathione.
Hence my question: Have you tried it, and if so, what was your experience? I know it hasn't worked for everyone, but I think we are making progress in figuring out why.

Best regards,

Rich