Hi all,
I suffer from sever CFS. I am MUCH better since I am on LDN therapy, over 7 months ago. My more disabling symptom aside fatigue is the chronic chest pressure (plus hands tremors, but this is not disabling, just unpleasant). Its not due to hyperventilation, anxiety or panic attack. Rather, I think its caused by a high degree of neurotoxicity I suffer since I followed a too hard DMPS chelation therapy 4 years ago.
I could manage well with the aminoacid GABA for a year or so. Then it stopped working, so I had to start Clonazepam. It worked great. I mean, it was not going to the root of the disease, but protected my nervous system in the meanwhile.
The problem is that I have developed much tolerance after a year and half (+-) to clonazepam, and right now I am on already toxic doses, so it is VERY URGENT for me to find some drug to replace clonazepam, by any other drug which works the same way for lowering neurotoxicity (not to sleep issues).
I DO know YOU ARE NOT MDs, and that no treatment fits to everyone. Juts need some alternatives to discuss with my neurologist the next appointment with her, as she is lost, as I am!
I am Spanish, and moving to the USA to be treated for what I think is the core of the disease (methylation cycle, detox and the needed terrain treatments needed in order to improve this cycle). BUT in the meantime, I really need help, in order to stop taking clonazepam, and continue calming down the so disabling effects of excitotoxicity I suffer, so that I can take care of myself while being abroad
So far, I have tried some antiepileptic drugs like Oxcarbazepine and Levetirazepam. Also tried time ago Gabapentine (and the other similar one I cant recall right now), but they disagreed with me, and didnt calm down my symptoms. Other Benzodiazepines are not an option either, as, once developed tolerance to Clonazepam, in some degree I have developed tolerance also to others drugs of the same family (e.g., diazepam does not work at all with me. Also the rest of Benzos are too anti-anxiety, and this is not what I need).
I think the difference between Clonazepam and the rest of drugs I have tried unsuccessfully, is that the former works mainly in the central nervous system, while the others do in the peripheral one. Of course theres a lot of other differences, and most of the time, the exact mechanism of action of the drugs are unknownSo I trust in knowing other options thanks to you, discuss them with my Doctor, and finally, doing a try and error process, find something useful
Thanks you so much in advance for your help,
looking forward to read some of your experiences,
Sergio
I suffer from sever CFS. I am MUCH better since I am on LDN therapy, over 7 months ago. My more disabling symptom aside fatigue is the chronic chest pressure (plus hands tremors, but this is not disabling, just unpleasant). Its not due to hyperventilation, anxiety or panic attack. Rather, I think its caused by a high degree of neurotoxicity I suffer since I followed a too hard DMPS chelation therapy 4 years ago.
I could manage well with the aminoacid GABA for a year or so. Then it stopped working, so I had to start Clonazepam. It worked great. I mean, it was not going to the root of the disease, but protected my nervous system in the meanwhile.
The problem is that I have developed much tolerance after a year and half (+-) to clonazepam, and right now I am on already toxic doses, so it is VERY URGENT for me to find some drug to replace clonazepam, by any other drug which works the same way for lowering neurotoxicity (not to sleep issues).
I DO know YOU ARE NOT MDs, and that no treatment fits to everyone. Juts need some alternatives to discuss with my neurologist the next appointment with her, as she is lost, as I am!
I am Spanish, and moving to the USA to be treated for what I think is the core of the disease (methylation cycle, detox and the needed terrain treatments needed in order to improve this cycle). BUT in the meantime, I really need help, in order to stop taking clonazepam, and continue calming down the so disabling effects of excitotoxicity I suffer, so that I can take care of myself while being abroad
So far, I have tried some antiepileptic drugs like Oxcarbazepine and Levetirazepam. Also tried time ago Gabapentine (and the other similar one I cant recall right now), but they disagreed with me, and didnt calm down my symptoms. Other Benzodiazepines are not an option either, as, once developed tolerance to Clonazepam, in some degree I have developed tolerance also to others drugs of the same family (e.g., diazepam does not work at all with me. Also the rest of Benzos are too anti-anxiety, and this is not what I need).
I think the difference between Clonazepam and the rest of drugs I have tried unsuccessfully, is that the former works mainly in the central nervous system, while the others do in the peripheral one. Of course theres a lot of other differences, and most of the time, the exact mechanism of action of the drugs are unknownSo I trust in knowing other options thanks to you, discuss them with my Doctor, and finally, doing a try and error process, find something useful
Thanks you so much in advance for your help,
looking forward to read some of your experiences,
Sergio