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

[xrayspex]

ha I never took any oaths

 

[Googsta]

Are Cheney patients sworn to secrecy?

Im not sure if you are serious or just kidding. Either way it is not conducive to community spirit to say such a thing IMO.

Edit: I should have worded this alot better than I did, my apologies, I was out of line.

 

[leela]

Im not sure if you are serious or just kidding. Either way it is not conducive to community spirit to say such a thing IMO.

I'm not sure I follow you, Googsta. This thread was started asking specifically for input from Cheney patients, and I think Nielk is just wondering about the sound of crickets chirping from that direction. I didn't read any communtiy-spirit-crushing in her question at all. Some doctors do ask that their protocols not be discussed publicly.

 

[Googsta]

The comment that was made was confusing, which is why I said I wasn't sure if it was meant to be serious or kidding.

It could be taken in a derogatory way by someone who is a Cheney patient. That would not encourage open discussion as the OP wanted.
Note I am not saying this was intended.
This is my opinion. I never used the word 'crushing'.

Cheney has talked very openly regarding many of his protocols, especially excitoxicity & the use of Klonopin I hope that answers the question regarding secrecy.

 

[leela]

Aaw, Googs, sorry if I put you on the defensive
I was trying in my own (awkward) way to smooth things over, especially because I know Nielk
and how sweet and community-minded she is.

Yes, you made it clear that you weren't sure, and you did not use the word 'crushing', I did.
Sorry if I offended you--I was attempting to reframe what I feared you had misread.
Apologies if I was unskillful.:Retro redface:

 

[Googsta]

Thanks Leela, we'll blame the fog :tongue:

 

[xchocoholic]

Do those of you with excitotoxin problems get mentally tired easily when not on these toxins ?

I know I'm more alert and respond quicker while on these but at the same time, I'm
not thinking things through when I'm like this. I can't really comprehend what the other person
is saying.

I'm sure i came accross as self centered and obnoxious when I was eating gluten, sugar and caffeine. And maybe a little scarey .. Lol
I see this behavoir in myself when on other excitotoxins too tho.
I was on B6 yesterday. (imagine embarrassed / apologetic face here)

Without these toxins, I feel more fatigued tho. Weird ..

It's the push crash cycle but in my head .. Tc .. X

 

[xrayspex]

xchoc is B6 an excitotoxin? I have some in the house, don't use a lot, forgot why I got it, but I think it might be good for pain, have to look it up. Like all b vitamins I didnt tolerate it great, but I do worse on b12 than b6. N-A-C give me crushing headache.

hey in regard to the sworn to secrecy thing, googsta are you a patient? I am just curious tho at the dearth of people identifying themselves as a patient of his here and sharing info. I know one of his patients used to put out lots of info on his behalf its all over the net her writeups, and then I forgot why he decided to disallow that and then I think you have to pay to really use his website now, haven't gone there for a long time. I don't know how the stem cell stuff worked out, that came up right after I decided couldnt afford to continue. I can see both sides on that one, I felt/feel some sense that there should be some limit in a public forum on what is shared from the Cheney experience, ie personal details from private forums etc but I would think its fair game for any patient to discuss their treatment however they want. Not sure of the ethics on that one. How does that one English doctor make a living, doesn't she put out all of her stuff on her website, protocols etc? Does Klimas or Peterson, Dantini? Not sure. I always got something out of Bell's newsletters.

 

[xchocoholic]

B6 is an excitotoxin for me now but it didn't start that way. I started out taking small doses, then
gradually increased it to 250 mg. And never had any reaction to it.

It wasn't until I started juicing with it that it made me hyper
and caused insomnia. I went off juicing and b6 for awhile but i tried 250 mg b6 yesterday. Wow ..

 

[dannybex]

Hi rock,

I'm getting tired but wanted to post a short reply. I was prescribed klon for myoclonus and took it for 16 years. I never increased the dose past 1.5 mg, per doctors orders, from what I remember. I was prescribed trazodone and benadryl for insomnia. Sometimes I slept and sometimes I didn't sleep for a couple of days.

All that time I also had ataxia (couldn't walk any distance so I had to use a motorized cart), brain zaps,
nausea, buzzing, narcolepsy, insomnia, oi, etc etc ... Once I took the toxins out of my diet, most of these symptoms vanished. But it took time.

The ataxia went away majically one year post gf without the use of supplements. Ataxia indicates brain damage. Even tho I can walk perfectly now, if I take benadryl or too much klon (i took it constantly for about a month after my tonic clonic last march) it comes back. I may be getting a mild case from gluten too. I still fall into things when walking every once in awhile.

I still get myoclonus and insomnia sometimes and from what I'm seeing these are from toxins like gluten, mb12, adb12 and now from over doing it on juicing. Everytime I've removed these toxins in the last few years my symptom go away again. Everytime .. Kow ..

I think you're on to several possible reasons why this 'neurotoxicity' or overstimulation occurs, and thus why some of us are put on klonopin/clonazepam and later have a difficult time getting off of it: We haven't found what things -- and they could be many -- are causing the overstimulation.

But they could possibly be:

Glutamates in food, both natural and/or added

The inability to convert glutamate to gaba, due possibly to heavy metal interference, and/or vitamin/mineral imbalances

Heavy pesticide exposures

Heavy metals -- interfering with cell signaling, electrolytes, other minerals, like zinc, copper, manganese, iron........

Vitamin or mineral deficiencies or imbalances: High copper or low manganese for example (According to Dr. Eric Braverman, M.D., manganese can help convert glutatamate into gaba, along w/b6)

High ammonia levels

Infections, especially strep (possibly an excess or imbalance of strep in the gut as well?)

ETC., etc., etc..

Of course finding and/or identifying these triggers or 'causes' is the hard part, but it would be nice if docs, including Cheney would work with the patient at the start so that maybe some of these could be addressed ASAP so that one might not need to be on the drug for so long.

Just my two cents.

Edit: Here's a link a good link w/a summary by Dr. Usman:

http://www.autismone.org/content/excitotoxicity

Edit 2: Dr. Hyla Cass M.D. says in her book 'Supplement Your Prescription", that benzos deplete biotin, folate, vitamin d and k, calcium and magnesium.

 

[dannybex]

B6 is an excitotoxin for me now but it didn't start that way. I started out taking small doses, then
gradually increased it to 250 mg. And never had any reaction to it.

It wasn't until I started juicing with it that it made me hyper
and caused insomnia. I went off juicing and b6 for awhile but i tried 250 mg b6 yesterday. Wow ..

I can't tolerate b6 at all without sufficient b2 -- riboflavin. That's why I'm interested in Christine Huebner's hypothesis as stated in the Hair Mineral Analysis thread. I don't know if b6 depletes b2, or if it's just that perhaps an overall b2 deficiency may exist in the patient population because it's needed in so many other enzymatic conversions/reactions, but again, I could not tolerate b6 for the last 6-7 years, but read elsewhere that b2 helped, and started it about four months ago, and sure enough, I could finally tolerate small amounts of b6.

 

[Nielk]

Im not sure if you are serious or just kidding. Either way it is not conducive to community spirit to say such a thing IMO.

Googsta,

I meant this very seriously. It is true that Cheney was open about his advice of using Klonopin and why he thought that it would benefit patients with ME/CFS who have neuro-toxicity problems. But his remark about getting off the medicine was very murky.

I find that many CFS specialist followed his lead and advised their patients to take Kolonopin and no one (or I should be more clear and say I) was never warned as to the dangers of withdrawal.

I know for a fact that most doctors DO NOT KNOW HOW TO HELP PATIENTS TAPER OFF KLONOPIN.
I am very interested to find out first hand, what Cheney does with his patients who are in the same position as I am. I have had no such luck. No one is talking.

Cheney is open about "some" of his information but, very secretive about most of it. If you go to his website, there is very little information there. If you want to find out anything, you have to subscribe to his newsletter for the year. (and it's not cheap)

How is it that no doctor can give me advice that makes sense as to how to get out of my very dangerous position I find myself in.

I think that if you would just have a little inkling of the severity of my situation, you would understand why I am so desperate to find an answer.

I do think that patients who have shelled out $7,000 for a consult with Dr. Cheney are not going to go and share in detail what went on there.
Have you heard any detailed account of any of his patients?

There is also no way of reaching him that I know of.

Does anyone know if there is a way to reach Dr. Cheney??

If I sound bitter, it's because I am. I am very frustrated to find myself in this position and the root of it is Dr. Cheney's advice.

How am I affecting community spirit?

Is this not a forum where you can be frank and post your problems?

I am sorry that I disturbed the community spirit. I will try never to do that again.

Nielk

 

[heapsreal]

Googsta,

I meant this very seriously. It is true that Cheney was open about his advice of using Klonopin and why he thought that it would benefit patients with ME/CFS who have neuro-toxicity problems. But his remark about getting off the medicine was very murky.

I find that many CFS specialist followed his lead and advised their patients to take Kolonopin and no one (or I should be more clear and say I) was never warned as to the dangers of withdrawal.

I know for a fact that most doctors DO NOT KNOW HOW TO HELP PATIENTS TAPER OFF KLONOPIN.
I am very interested to find out first hand, what Cheney does with his patients who are in the same position as I am. I have had no such luck. No one is talking.

Cheney is open about "some" of his information but, very secretive about most of it. If you go to his website, there is very little information there. If you want to find out anything, you have to subscribe to his newsletter for the year. (and it's not cheap)

How is it that no doctor can give me advice that makes sense as to how to get out of my very dangerous position I find myself in.

I think that if you would just have a little inkling of the severity of my situation, you would understand why I am so desperate to find an answer.

I do think that patients who have shelled out $7,000 for a consult with Dr. Cheney are not going to go and share in detail what went on there.
Have you heard any detailed account of any of his patients?

There is also no way of reaching him that I know of.

Does anyone know if there is a way to reach Dr. Cheney??

If I sound bitter, it's because I am. I am very frustrated to find myself in this position and the root of it is Dr. Cheney's advice.

How am I affecting community spirit?

Is this not a forum where you can be frank and post your problems?

I am sorry that I disturbed the community spirit. I will try never to do that again.

Nielk

Your asking a legitimate question, i dont think your disturbing community spirit. U may have problems similar to others and sharing your experience helps us. I know i asked my doc about klonopin and he was very negative towards it but was ok with valium??? he has treated many cfs patients, so maybe he has had patients with issues on klonopin??

cheers!!!

 

[leela]

Nielk, you did not do anything to community spirit, not in the least, besides being of benefit to the community as you naturally are. If an individual felt disturbed, that is a different issue.

You do ask a legit question, and it's true that Cheney now keeps his cards close to his chest, for whatever his reasons--we don't know. The Klonopin article quoted was from many years ago. There has been little since.

Many ME docs have had to keep quiet for political/professional reasons. Some for financial reasons. (We could only speculate here.) It could well be for exactly this kind of reason, though--patients took the above quote to their doctors (I did) doctors prescribed without full understanding, and some patients, like you, got into a pickle. This is possibly why he is "unavailable" to patients that are not in his care, and why he no longer makes public his treatments/thinking. He may have been advised to avoid being in a position of legal liability for the "uninformed use" of his protocols.

Of course you are bitter, and desperate, and you need answers. Asking for them here and wondering aloud why you are not getting any is simply straightforward IMO. No offense to Googsta, who may have a different POV, but it is my personal opinion that you are asking a serious question for a serious reason, and I do hope you get a serious answer, somewhere, and soon.



I wonder if someone from a detox/rehab clinic would be willing to consult with you or your doctor, given that there's no way you could be (or would want to be) an inpatient in one of those places. Surely there is a specific protocol for safely weaning off that could be shared with your doctor.

 

[hixxy]

Do those of you with excitotoxin problems get mentally tired easily when not on these toxins ?

I know I'm more alert and respond quicker while on these but at the same time, I'm
not thinking things through when I'm like this. I can't really comprehend what the other person
is saying.

I'm sure i came accross as self centered and obnoxious when I was eating gluten, sugar and caffeine. And maybe a little scarey .. Lol
I see this behavoir in myself when on other excitotoxins too tho.
I was on B6 yesterday. (imagine embarrassed / apologetic face here)

Without these toxins, I feel more fatigued tho. Weird ..

It's the push crash cycle but in my head .. Tc .. X

For many of us, no matter how many dietary excitotoxins we avoid, we are still going to be excitotoxic. There are excitotoxic cytokines, excitotoxic biotoxins from infections.

On those odd occasions we don't feel as excitotoxic, yes I switch to being even more fatigued.

This comes back to the whole "normal energy" and "nervous energy" thing that there was another thread on not so long ago. In the absence of normal energy, the excitotoxicty can sometimes give you an unhealthy boost, much like having a caffeine hit, but not quite.

hixxy

What we all need is a switch from nervous energy to healthy controlled energy. Don't ask me how this is achieved!!!

 

[hixxy]

xchoc is B6 an excitotoxin? I have some in the house, don't use a lot, forgot why I got it, but I think it might be good for pain, have to look it up. Like all b vitamins I didnt tolerate it great, but I do worse on b12 than b6. N-A-C give me crushing headache.

B6 causes major excitotoxicity for me. My very severe neurological problems started almost overnight trying to treat pyroluria/KPU using 200mg of B6. My brain has never been the same and gets worse any time I try to take a therapeutic dose of b6. I developed shaking/convulsing type reactions from my MCS immediately after this.

hixxy

 

[hixxy]

I can't tolerate b6 at all without sufficient b2 -- riboflavin. That's why I'm interested in Christine Huebner's hypothesis as stated in the Hair Mineral Analysis thread. I don't know if b6 depletes b2, or if it's just that perhaps an overall b2 deficiency may exist in the patient population because it's needed in so many other enzymatic conversions/reactions, but again, I could not tolerate b6 for the last 6-7 years, but read elsewhere that b2 helped, and started it about four months ago, and sure enough, I could finally tolerate small amounts of b6.

What were your symptoms of b6 intolerance dannybex?

 

[hixxy]

Neilk,

I think it's quite reasonable for you to be frustrated and upset with the lack of information that was provided to you regarding benzodiazepine withdrawal. You would also think that if a doctor of Cheney's stature is making a blanket recommendation for the use of klonopin for a very wide number of patients with excitotoxicity, that all aspects should have been considered and methods of withdrawal should have been included in that initial recommendation.

This obviously hasn't happened and I'd also say it's a bit irresponsible on his part. Have you tried contacting the clinic directly regarding this (this might be a laughable suggestion)?

hixxy

 

[Googsta]

Googsta,

I meant this very seriously. It is true that Cheney was open about his advice of using Klonopin and why he thought that it would benefit patients with ME/CFS who have neuro-toxicity problems. But his remark about getting off the medicine was very murky.

I find that many CFS specialist followed his lead and advised their patients to take Kolonopin and no one (or I should be more clear and say I) was never warned as to the dangers of withdrawal.

I know for a fact that most doctors DO NOT KNOW HOW TO HELP PATIENTS TAPER OFF KLONOPIN.
I am very interested to find out first hand, what Cheney does with his patients who are in the same position as I am. I have had no such luck. No one is talking.

Cheney is open about "some" of his information but, very secretive about most of it. If you go to his website, there is very little information there. If you want to find out anything, you have to subscribe to his newsletter for the year. (and it's not cheap)

How is it that no doctor can give me advice that makes sense as to how to get out of my very dangerous position I find myself in.

I think that if you would just have a little inkling of the severity of my situation, you would understand why I am so desperate to find an answer.

I do think that patients who have shelled out $7,000 for a consult with Dr. Cheney are not going to go and share in detail what went on there.
Have you heard any detailed account of any of his patients?

There is also no way of reaching him that I know of.

Does anyone know if there is a way to reach Dr. Cheney??

If I sound bitter, it's because I am. I am very frustrated to find myself in this position and the root of it is Dr. Cheney's advice.

How am I affecting community spirit?

Is this not a forum where you can be frank and post your problems?

I am sorry that I disturbed the community spirit. I will try never to do that again.

Nielk

Hi Nielk,

I sincerely apologise for what I said/assumed. I STUFFED UP.

I have PM you also to apologise & explain. It was never meant to be a personal attack, I am having a difficult time but I shouldnt have brought that to the boards.

This stuff-up was nothing to do with you personally or with Klonopin tapering. I agree with your thoughts on all those issues.

I admire you very much & am deeply grateful for you sharing your experience with us all.
I love your frankness & the only one who disturbed community spirit was me. Please don't let that upset you or keep you from sharing your experiences & opinions.

Googsta

 

[K2 for Hope]

Neilk:

Thanks for asking this question as I am trying to do the same thing and haven't found much help even from the websites/clinics/Psychs Dr's.

Most want to substitute something that will still be addictive and, therefore, have withdrawal issues. Or suggest a holistic way, which due to the amount of meds I'm on, wouldn't even phase my brain. Or send me away to some kind of institution that doesn't deal with this kind of withdrawal. I didn't take these to get "high", just to sleep at night like normal people. (Please do not ask who, how or why I got here. It mostly worked at the time.) I've been on some kind of benzo for at least 10+ yrs.

Although starting slow on benzos, I, eventually was at 8 mg Xanax during the day for stress and the following combo for insomnia:
1) 4 mg Xanax
2) 4 mg Klonopin
3) 30 mg Temazepam

I had 2 sleep studies as sometimes they worked and sometimes they didn't. I averaged 4.5 hrs sleep with no Delta sleep still using all those meds.

After working dilegently to reduce or cope with some of the stressors in my life, I slowly took myself off the 8 mg daily Xanax.

I am working with a Dr who together we came up with the following protocol for the insomnia:

1) Sleep Hygiene - Dark room, no TV, Dark curtains on the windows, etc.
2) Do something non-stressfull before bed. I read something.
3) Meditation - I'm starting slow as my mind races. I found several books for novices. I don't get mad if I don't "do it" correctly. I'm trying and that's what counts. I do at least 5 mins every morning and 5 - 10 mins every night. This seems to be helping the most.
4) Taper slowly, start with the Xanax due to the length of time it stays in the body. I have been able to go from 4 mg to 2 mg and ready to drop down again. (About 2 - 4 wks? Don't dwell on how quick it happens.)
5) Understand the first couple days or more, when you first lower your dose, you will have a physical withdrawal. Treat yourself good those days and just take care of your self. Sometmes I am lucky to just eat. (I try not to get into any heavy discussions...)
6) Try not to bounce the dose back up unless you feel like you absolutely need to as you will have to go through the withdrawal again. (Some nights sleep is not good. I don't worry about what I'll be like the next day as some days are horrid, but, some days are not bad at all.)
7) Try, as best you can, to go to sleep around the same time.
8) I'm doing this a day at a time as I really don't know what the correct outcome will be.

After the Xanax, I will start tapering the Klonopin the same way. It is not easy and I may not make it, so if you find a good answer, please let me know. At least I'm trying and I give myself credit for that.

I did take myself off most supps for right now as they seem to hype me up, but I added 25 mg DHEA around 9 - 12 at night and lowered the Melatonin to 10 mg which I take at least 2 - 3 hrs before sleep. I take both of those together.

I take the 30 mg Temazepam 1 hr before sleep and the 2 mg Xanax and 4 mg Klonopin at the same time and around 30 mins before sleep.

I also am adding some LDN for the pain. I think if this works, there are less side effects and easier to come off of.

The biggest thing I need to remember is we have all gotten here through different paths and will probably get out through different paths as well. And, fortunately, we are all different. (Cause I don't think any of you would want to be with me the day after I cut the dose down.... )

Best of luck from a friend,
Karen