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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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 ..
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 ..
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
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
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.
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.
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