1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Help with replacement of clonazepam for neurotoxicity. URGENT

Discussion in 'General Treatment' started by serg1942, Feb 2, 2010.

  1. serg1942

    serg1942 Senior Member

    Messages:
    298
    Likes:
    274
    Spain
    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
  2. Melodie

    Melodie Guest

    Hi Sergio, I don't know anything about medications and I realize you and your neurologist would know much more than me, but there is a supplement (practioner only brand) that I can't live without that is good for tremors-particularly in the chest. It is Bioceuticals' "Ultra Muscleze" which is made in New Zealand but I buy it from an online company in Melbourne Australia: www.emed.com.au . Iit probably isn't strong enough for what you are dealing with but you can look at the ingredient list on the emed website. All the best! Hope someone else gives you some good tips!
  3. serg1942

    serg1942 Senior Member

    Messages:
    298
    Likes:
    274
    Spain
    Hi Melodi,

    Thank you so much for your response. Well, the problem here is that I need to stop gradually Clonazepam, but to replace it by other drug, as the excitotoxicity is still there, and need to protect my nervous system, and of course, to feel well enough to take care of myself (without clonazepam I couldn’t get out of the bed, as my nervous system can’t handle the activity…).

    I have read the components of Ultra Muscleze: http://www.bioceuticals.com.au/product.aspx?function=displayproduct&productid=104

    And I think I am taking most of its ingredients already…Like you guess, it is not enough to calm down my high degree of neurotoxicity…Of course I’d like to treat it by natural remedies, but, they, unfortunately are not enough strong…

    A complicated picture…

    Thanks again,
    Best,
    Sergio
  4. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Hi Sergio,

    I wish I had a magic bullet to offer you. All I can say is that I am sure people on this list are reading your message and understanding what a difficult situation you are in. It sounds like you might need a bigger sledgehammer for your situation than the "natural remedies". However, I also believe that sometimes natural remedies can be very powerful but you might have to take them longer to get results.

    Good luck to you and I hope someone on the list has more advice to help.

    Take care of yourself,

    HW
  5. caledonia

    caledonia

    Messages:
    2,692
    Likes:
    1,288
    Cincinnati, OH, USA
    Have you retried the GABA to see if it might work again after a break?
  6. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    This organization is having great success with taper and supplements that virtually eliminate withdrawal from getting off of a myraid of drugs, including the benzos. They have a free e-book online: The Road Back

    I have followed their work, because it is fascinating, for many years, and they have been able to see the time cut for getting off these drugs to half or more. They used to be able to provide email support.
  7. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    174
    Victoria, BC
    a couple of suggestions....

    Hi, Sergio; a couple of suggestions, that probably won't do the job, but maybe might help a little bit. One is Theanine, and the other is a beta blocker, particularly perhaps something like Coreg (Carvedilol). Beta blockers are sometimes used by entertainers, etc. as a kind of substitute for tranquillizers, and certainly damp down some sympathetic nervous system reactivity. You might try a low dose, and see if it helps a bit. You may find a bunch of low dose substances that put together calm things down just enough to help--anway, best of luck--hope something helps.
    Best, Chris
  8. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Hi Folks: I had toxicity from clonazapam as well and from Xanax. Very severely in both cases even when on the tiniest doses. Those drugs are toxic to mitochondria which I found out only years later when my mitochondrial doctor did a muscle biopsy and gave me a positive mito diagnoses.

    I was able to get off Xanax by slightly increasing a prozac prescription. The prozac was liquid and I literally started with like 3 drops (probably 1/30th of a normal dose). I slowly increased one drop each week while decresing the xanax. It worked over the course of about six weeks.....then after a few months I backed down on the prozac as well.

    Good luck!!!With any mito problem one needs to stay away from all the benzo drugs like those. They are totally toxic to mito. ~FernRhizome
  9. Wayne

    Wayne Senior Member

    Messages:
    2,176
    Likes:
    1,240
    Ashland, Oregon
    Alpha-Stim Instead of Clonazepam

    Hi Sergio,

    Thought I'd give you a link that will take you to a discussion I was having with Chronicallyfatigued regarding my experience with the alpha-stim.

    I use my alpha-stim everyday (2-3 times), and find it to be very helpful in being able to stay off benzodiazapines. Before discovering it, I had contemplated going back on clonazepam to try to settle down some of the hyperactivity (probably excessive neuronal firing) in my brain.

    Good luck finding something that works well for you. It was very difficult for me to taper off my own use of clonazepam. I took a year to do it. I discovered the alpha-stim about a year after I quit. I wished I would have had it while I was going through withdrawal as I feel it would almost certainly have helped a lot.

    Let me know if you have any questions about the alpha stim. I got mine refurbished with a warranty for around $500 or so.

    Best, Wayne
  10. Gerwyn

    Gerwyn Guest

    hi Sergio I hope this helps
    How slowly? Well, it depends on the medicine, the dose, and the individual. There is no easy answer. Some people may need to decrease, say, clonazepam very gradually over 2 months or more. Others can probably get off of it in two weeks. Clonazepam is one of the longer-acting benzos, so two weeks is probably the shortest and fastest. For example, you could cut the dose down by one-fourth for 5 days, another one-fourth for 5 more days, another one-fourth for 5 days, and then stop.

    I found a very nice web site called benzobuddies which has an interesting and very slow program of discontinuation. They begin by decreasing the medication by tiny amounts—say less than 5 % of the daily dose every several days. This might be better for many people. Good luck.
  11. Gerwyn

    Gerwyn Guest

    I,m ok with .5mg any more and i feel poisoned but I cant stay asleep for linger than two hours without it
  12. caledonia

    caledonia

    Messages:
    2,692
    Likes:
    1,288
    Cincinnati, OH, USA
    How about this - a whole cocktail of calming substances - GABA, theanine, magnesium, Relora, 5htp, etc. Maybe Seriphos, which dampens cortisol.

    If the GABA stopped working after a year, I would think you would just increase it at that point. Were you maxed out on the dose and unable to increase?
  13. Alesh

    Alesh Senior Member

    Messages:
    176
    Likes:
    0
    Czech Republic, EU
    Non benzodiazepine substitue for the clonazepam

    If I understand you well you are trying to find something against the neuronal excitotoxicity but not avail the potentiation of GABA by benzodiazepines. One suggestion would be to try antihistamine drugs that cross the blood brain barriers. Promethazine comes to my mind. It is relatively safe and not addictive sedative. I use it quite often for sleep induction but in my experience tolerance develops quite fast. Another possibility is hydroxyzine. In my experience it is more anxiolytic than promethazine but less than clonazepam. Tolerance also develops quite fast. Another possibility is some anxiolytic and sedative antidepressant like mirtazapine. Next possibility is some anxiolytic antipsychotic, perhaps quetiapine or sulpiride. Another possibility is to go via the melatonin receptors, i.e., agomelatine or ramelteon. Perhaps memantine. Perhaps opioids but these are more dangerous as to the addictiveness than benzodiazepines. Myself I would try to very slowly switch to: promethazine alternated with hydroxyzine. Something like 1st day 25mg of promethazine, 2nd day 50mg of promethazine, 3rd day 25mg of hydroxyzine, 4th day 50mg of hydroxyzine, 5th day 25mg of promethazine etc. Or to slowly switch to mirtazapine or trazodone (I have negative experience with trazodone but everything in this field is to large extent individual). Keep in mind that I am not an expert and consult everything with you MD and especially keep in mind that sudden withdrawal of chronic large doses of benzodiazepines can often have fatal results.
  14. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    It's really odd to see how different meds effect people, especially PWC's. Clonazepam works wonders for some people and terrible for others. I've tapered off of it a couple of times without any major problems other than muscle pain slowly came back and my sleep wasn't as good. I only take .5mg at bedtime and .25mg in the morning, but I have heard of people being prescribed 4mg 2x/day (not sure if they could walk or not). When I did taper off I still had to cut my doses in half for 4-6 weeks, then quit the a.m. dose and halved the night time again (pill splitter) for 4-6 weeks. The last week I would start in with benedryl for a few days, then to melatonin and gaba or theanine.
  15. Freddd

    Freddd Senior Member

    Messages:
    4,403
    Likes:
    744
    Salt Lake City

    Hi Sergio,

    I believe I know what the problem is. If you read this post, contact me and we can talk about it.

See more popular forum discussions.

Share This Page