1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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  1. pamb

    pamb Senior Member

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    Quick comment on the white brain lesions and gluten. Good grief! Hubby had MRI's when this all started in 2003/04, and the docs puzzled over the white brain lesions.. and not knowing anything at all about our world, wrote it off to too many falls from a 45 year competitive cycling career. Hubby is GF now and doing better in many ways. Has managed to reduce the benzos, but not off yet. sigh. His French doc. had him on ever higher amounts - I think he just wanted to keep him quiet until he died. Canadian docs do NOT have that view.
     
  2. pamb

    pamb Senior Member

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    ps thanks for the reminder about theanine. need to stock up again.
     
  3. arx

    arx Senior Member

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    Nielk likes this.
  4. sianrecovery

    sianrecovery Senior Member

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    I used benzos dependently for many years, and still have congitive deficits associated with heavy long term use, after 15 years in recovery. Those dont impinge much on my daily life, and tend to be associated with judging spatial relationships. Obviously there were other factors affecting this damage, but addiction docs I have worked alongside seem to think heavy dependent use of benzos has a particular pattern in terms of permanent congitive deficits which is characteristic. Use in tandem with alcohol exacerbates this. It is a poorly studied area.
    My experience of benzo withdrawal, personally and professionally, is do it under good medical supervision and very slowly. Abrupt termination of large doses can lead to fitting and rarely, death. Of course, many people manage perfectly well with low dose use long term with few noticable effects, but in the elderly its certainly associated with worse outcomes in terms of morbidity and mortality. Its not necessarily a great drug for your liver to process either, so if you are a poor detoxifier, its not a 'light' option.
     
  5. Boost

    Boost *****

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    It disgusts me that people are touting this as an aide for CFS when my CFS was caused by these very drugs. I lost 9 years of my life to them(1 year use, 8 years of withdrawal and after effects). I use to be very active on the benzo withdrawal forums and I can tell you dependency can form in a couple weeks, months or even years for some. And just because you can stop for a couple of days and not have symptoms doesn’t mean you are in the clear, it can hit you weeks later, even if you are on a low dose like I was.

    If you want an expert opinion on benzo use ask the person who has dealt with users for 30 years(Heather Ashton) not mr fred of mr freds protocol or whatever other quack is recommending them. You're gambling with your physical health and your sanity. Even crack heads will tell you benzo addiction is harder to kick.
     
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  6. Nielk

    Nielk

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    When I was at the detox/rehab facility for 31 days withdrawing from Klonopin there were people there detoxing from alcohol and all kind of drugs and it was the people detoxing from Benzos who suffered the most from their withdrawal effects. Some even left the rehab early because they couldn't deal with it. If you would have seen what I saw, you would realize what kind of nightmare these Benzos can be. How can you explain having withdrawal effects two years after taking the last pill? It has left your body so long ago. These pills are known to cause damage to the brain. They actually took a spect scan of my brain and the results showed the damage that was caused to my brain - not unlike long term alcohol consumption. Alcohol and Benzos are CNS depressants. The brain can't distinguish between them.
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if it wasnt for benzo/z-drugs i would be alot worse. The first few years of cfs and not sleeping well at all was slowly destroying me. I tried every dam natural sleep aid with minimal help. It wasnt until i started using prescription sleep meds that i started to get some descent sleep. My sleep isnt perfect but its alot better then it was and has kept me functioning. I have been able to keep my doses low due to alternating different meds, benzo/z-drugs and non benzo's, this has helped me avoid tolerence to them.

    The problem i see people have with benzo's is many increase the dose when they stop working and get into a cycle of increasing the dose until its really high that anyone would have withdrawal symptoms. I think the problems is that doctors dont educate the patients on how to use them or dont know how to use them for people with chronic sleep problems.

    If i stopped sleep meds now i would have extreme problems sleeping but this wouldnt been much different to the first few years i had of cfs. I have kept my doses sane and when there is a cure for cfs/me, then i will look at a way to stop sleep meds. Until then i feel that cfs/me is the cause of my sleep problems not sleeping pills for me.

    Everyone is different when it comes to treatments and i think everyone needs to educate themselves on whatever treatments our doc suggests. Theres a risk to everything, for me the risk was much lower then the positive help i was going to be getting from sleep meds. I think its a personal decision for each to make and dependent on how bad their sleep is. To tell someone not to use sleep meds because they are dangerous etc is it anymore dangerous then someone living off 2-3 hours crappy sleep a night and driving a car sleep deprived as well as other activities that require someone to be alert. For me i would have lost my job which would have forced me to lose my house and it would have snowballed from there. The answer is, we dont know everyones circumstances and degree of disability from sleep/insomnia.
     
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  8. Nielk

    Nielk

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    Heapsreal,

    I understnd that Benzo medications are helping you with your sleep problems when all other nedications didn't. I was in the same spot 6 years ago.
    I think the key difference is that you say you don't take it every day and you don't need to increase the dose. That is great. This way, you know that you are not becoming tolerant to it.
    Many people can take these medications and as long as it helps them with their problem and they don't become tolerant to it, I think is okay. By okay I mean that it's great that it's helping and I agree noone can functin with just 2-3 hours of sleep at night but, it's still not clear how long term use of these drugs effect the brain - even if one doesn't become tolerant/addicted to it.
    I would personnaly exhaust EACH and EVERY other avenue to my disposal before I would embark on even small doses of these drugs.
    Of course if nothing else works, what other option does one have.
    I would become very leary though as soon as I need to increase the dose or if and when I HAVE TO take it every day.
    I don't think that anyone is telling you or anyone what to do. we just want to make sure that everyone is aware of the dangers and they know how to recognize the problem when it arises.

    Nielk
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Nielk i understand where you are coming from and sorry u have had to go through all the crap u have. U seem to understand that using benzo's isnt black and white, just like alcohol , not everyone who drinks becomes dependent on it etc My post was directed at others who say that benzos have no place in medicine?? For some there use is a blessing and others its a curse.

    Klonopin doesnt seem to be used as much in australia as it is in the US, i spoke to my doc about klono a few yrs ago after reading how it helped cfs people alot. My doc basically said that this was a benzo he has seen more problems with then any other benzo, he didnt elaborate but probably refering to people like yourself who have had terrible times with it.Xanax was another he mentioned people have had problems with, he said he was alot more comfortable prescribing z-drugs and valium.

    Nielk i wonder if u had read a thread like this before u had started klono if things would have been different for you. Hopefully others can learn from this thread u have started and can identify drug tolerence and can take steps to avoid it. Its a pity that many doctors dont understand much about benzo's and can see a patient developing benzo tolerence. It sure sounds like they should have picked up on your problems alot earlier. I hope u keep improving now off benzo's. Can u elaborate more on things u do for sleep now?

    cheers!!!
     
  10. Nielk

    Nielk

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    Thanks heapsreal,

    It's hard to know for sure but, I think that had I heard the warning about Klonopin before I started it, I think at least I would have been very weary about increasing the dosage at all. I thought that it was just a natural augmentation of the medicine until the right dosage is found. I had read Dr. Cheney's interview about Klonopin and thought that it was a safe drug for all ME/CFS patients to take.

    This past two weeks, I have tapered myself off the Trileptal and am not taking any drugs for sleep now at all. I do fall asleep natuarlly but sleep a few hours a night. I seem to be able to manage with it.

    I am also feeling my pains a lot more now that I'm not taking any Benzodiazepines or pain medications. I am taking advil for that.

    The unbearable headaches that I have been living with for the past 7 to 8 years have dissapeared. This alone is such a blessing for me! Everything else pales now compared to that torture that I lived with constantly. I don't know what the explanation for this is. Was it the Klonopin that was causing my terrible headaches? I don't know.

    I saw that someone mentioned that Ambien was the cause of all my problems and my suicidal thoughts. The reason that I know that this was not the case for me is that I di not take ambien all the time. when I took it, it definitely helped me sleep but I ws not tolerant or addicted to it. I went for periods without taking it. Maybe for others ambien might be a nightmare of a drug but I don't think it was for me.

    I guess by putting myself "out there" with my story, it gives people an opportunity to knock me down with it and I expected some of this but, all I can do is tell my story as honestly and openly as I could. I'm not sorry I did it. I beieve that for some people Klonopin really works well and I wouldn't want to take that away from them. I just want people to be aware of the dangers that it poses to some.
     
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  11. sandgroper

    sandgroper

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    from memory, i think cheney does not recommend over 2mg and usually most start with .05mg. he is specific about the use of klonopin rather than generic. Not sure that this makes a difference but he is talking about treating a specific problem.
     
  12. arx

    arx Senior Member

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  13. arx

    arx Senior Member

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    How is Diazepam(Valium) when compared to Clonazepam? From what I have gathered, it is less powerful and probably less damaging benzo in the long term?
    Need suggestions.
    Thanks.
     
  14. arx

    arx Senior Member

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    After 10 days of taking diazepam 5 mg and clonazepam 0.25 mg daily, is going cold turkey the next day a good idea? Are any withdrawal symptoms possible in a ten day duration with the above mentioned dosages?
     
  15. AFCFS

    AFCFS Senior Member

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    I have used this formula and method - for klonopin taper only - and it seems to be working for me. It is my opinion and not medical advice. Out of my system in 10.41666667 days (50*5/24). My rational was to find the longest suggested half-life of klonopin, or any its metabolites. After researching that, I came to my own conclusion of a 50 hour half life. Then, I took the "5 half-life" model - 5 half-lives and a med is generally out of my system, and then divided it by the "24 hours in a day" to see how many days it would be to get the klonopin out of my system.

    So that is how I get the 10.41666667 days, that I then round round up to 11 days. That is the time - in my non medical opinion - it takes to get klonopin out of my system. But just because a med is out of the system, does not mean that it still does not have an effect on the system. I was told by a doc that the brain has to re-adjust to not having it and that takes some time. So, I tacked on an additional 11 days, for a total of 22 day per taper increment, which I set at .25 mg for myself. For me, I started out at 1 mg and then after 22 days went to .75, then 22 days and went to .5 mg, then 22 days and went to .25 mg, etc.

    I understand some people like to do it in smaller increments and also use the diazepam. The way I understand it is that diazepam has a longer half-life, so theoretically it is supposed to be a smoother ride. I never tried it so do not have any anecdotal input on it.

    I had tried a faster taper of klonopin under a pdocs supervision last year - he said I could halve it - 1mg to .5 mg and be off it in 10 days to 2 weeks. That was hellish and I ended back on klonopin. At the time, I seemed to have very little "filter" from thought to word. I recall telling - no it was yelling - at a used car salesman, telling him he was full of **it. He was, but the point being for me is that when going through my longer taper, I might think someone is full of **it, but I do not feel the need to yell it at them.

    Even on the taper, I have noticed a pretty heavy punch at about day 3-5, or so. Then it starts to get better for me, slowly, but better. When I did the faster taper, I literally could not get to sleep for nights at a time and when I did, only for a few hours, it was just a blur with no real rest. I have gotten to using a consistent OTC supplement cocktail that gets the lights out and also maintains a pretty good sleep cycle for me.

    There is a a lot of information on getting off of benzos and doctors will have their own take on it. Also, it may not be the best choice for some. I think it is important to read up on it, take what you can from it, talk to a doc about it, do not be afraid to challenge a doc on it, but do it under a doctor's supervision if that is the choice being made.
     
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  16. arx

    arx Senior Member

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    AFCFS

    Thanks for your reply. Really helpful. The very reason I asked the question above is because after 8 days of taking Diazepam 5mg + Clonazepam 0.25mg at night daily, I had stopped taking them two days back. It was because I had developed a cold and sore throat, because of the weather here. So I started treating that with Benadryl and Cetrizine. Knowing that these anti-allergics induce sleep, I stopped the benzos, thinking of possible over-sedation.


    So in that two days after leaving the Benzos, I developed two major issues: mood issues and shortness of breath.
    Mood issues can further be described as irritability,anxiety,frustration. Laughingly so, in my mind I have been calling everyone I meet "a little piece of sh**". I have also been feeing really mad and at moments I think I could become really violent. But the enormous energy I have been pouring in self control and the arduous effort to maintain sanity, I have not yelled that very phrase at people, but have said other disturbing and irritating things. So I think you understand what I mean. The exaggerated irritability and as you so rightly mention, the loss of control between thought and expression ..I can feel it. It's not their fault, the people around me. I am still in that zone only, so I'll let you know if at all I yell at someone with the same phrase as you did. Maybe we can Hi5 then?

    So coming back to the problem,I consider the following as the causes for the symptoms which I describe above:

    1. Benadryl/Cetirizine: I have faced issues like sedation, confusion, and little irritability with Benadryl before,but this was way too much. I started thinking about possible effects of anti-histamines,leading to what is called overmethylation. I posted a thread yesterday on this: Histamine and MethylationI even tried 500mg of Niacin, only to find insignificant relief.

    2. Benzos: I did not consider Benzos causing this because after just 8 days of use and after stopping them, having these symptoms in just a day looked to me like a no-go. So after considering the possibility of it, I posted here. After reading your experience, I think Benzos might be it. So you really think after 8 days of usage,going cold turkey and facing such symptoms the very next day are withdrawal symptoms? I have read things about interdose withdrawal but in such a small duration of 8 days, I have not read anywhere that tolerance can be developed.

    3. Electrolyte Imbalance: As I had stopped taking B12 a while back, I was also looking at potassium imbalances or something of that sort.It is difficult to estimate how much potassium is required after stopping B12 take. I am taking a bit of potassium and magnesium,hoping that it helps calm me down.

    So,what do you think? I think it's either the anti-histamine or the benzos.Or it could be both? After reading that both of us are thinking of other people as sh**, I am inclined to think of Benzos being the possible cause. But then again, in just 8 days??

    I really want to solve this case as I'm really frustrated, and also need to manage my cold. I'm so frustrated that I'm tempted to tell everyone around me to go f*** themselves, storm out of the house, and drink myself to oblivion.
    You know the feeling when because in that moment you are so irritated and frustrated,everything around you and everything that has happened to you also feels the same way. That is the climax stage, when I can do anything and am really on the edge. Thankfully till now I have controlled those moments in a good manner, and those around me might not even know that, because this is the inner world after all. I really need a fix for this.
     
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  17. MishMash

    MishMash *****

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    AFCS,

    Since when is yelling at a used car salesman unusual? Just kidding.

    I'm not sure of the basic logic behind all of these people "trying to come off benzos".

    My question is: why bother? Is there some moral reason? Once you have come off, where do you from there?

    Many folks on this forum have had their lives destroyed by an unusual neuroimmune illness. They no longer work. They can't even sleep more than three hours per night. The slightest exercise makes them sick for days. Many of them have no job, no place to go.

    I fail to see how it could be made worse by taking benzos? If people are robbing banks to get money for them, I could see. But those are most painkiller addicts (so I thought).

    Was your Klonopin addiction interfering with your life, or making you feel worse? I guess everybody has to make their own risk-reward ratio.

    It doesn't sound like many of the folks "living clean and sober" are actually enjoying their new-found sobriety at all. You get the monkey off your back, but then you still have to deal with feeling sick anyway.
     
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  18. Nielk

    Nielk

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    It is true that us who have gone off Klonopin are still ill with our original illness but, that does not mean that all of us should stay on these Benzodiazapines. Some of us have had horrible experiences from taking Klonopin.

    With me, at first, it was very helpful. It helped me sleep when I could hardly sleep on my own. What I should warn some people though is that the side effects from taking Klonopin could be very similar to ME/CFS side effects so that when one is taking Klonopin and lets say, they are sleeping well now, their other symptoms of ME/CFS might have worsened with no realization that this could be due to the Klonopin. They might just think that their illness has worsened with time.

    After a few years on it, I started having a paradox reaction to the Klonopin. Instead of making me calmer, I was feeling very edgy and nervous which lead to dangerous suicidal thoughts. This is not unique to me. There are others...many others who have had this happen. Sadly, some have gone ahead and acted on these thoughts. Because of this, a few years ago the FDA has gone ahead and sent out a warning to Doctors about the possible dangers of taking these drugs.

    This drug changes your brain...not for the better. Your GABA receptors become useless. They forget how to function. This is why when one discontinues taking the drug, they usually have so many adverse effects long after the drug leaves the body.

    These symptoms that arx and AFCFS talk about, like rage and anger are very common withdrawal effects. The brain has a lack of the calming effect of the GABA neurotransmitters which in turn renders one very edgy. The more rapid the withdrawal, the more pronounced these effects will be.

    One should take the warnings about discontinuing these drugs cold turkey very seriously, even when one has been taking it for a few days.
     
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  19. arx

    arx Senior Member

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    There should be cannabis drugs available. I doubt they will be as dangerous as benzos are.
     
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  20. AFCFS

    AFCFS Senior Member

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    For me, I was on klonopin for 25+ years (nighttime dose) for anxiety/sleep and would say like Nielk that there was a parodox reaction to klonopin after time. My doc said this could also happen because I was withdrawing during the day from the tolerance that I had developed. arx - I have heard so much variation in benzo use/response that I would not discount anything. I had a friend who took the orally digestible form (think it was .125 mg) and she would have a bad time if she missed a dose. On the other hand, her husband would pop the 1mg throughout the day like they were m&ms and seem not to have much of an effect.

    MishMash - I would not hesitate to take anything that works, the one final thing for me was that they can kind of make you a slave to a doc. I had initially seen a pdoc on regular basis and when I did not want to spend money for the CFS he could not treat, he politely gave me a call and essentially said: if you want your script you need to come in and see me more often. I said that it seemed a little odd that this would be necessary after being on the same dose for 25+ years and having been a regular patient of his for some time, and he was not prescribing any other meds to consider - that essentially he was asking me to pay for a $150+ for a visit to get a $4 generic script at Walmart. He just said that is the way it works. At the time, my Internist said it was not a problem to just call in a script when I needed a refill, so that was no longer a direct issue but it bothered me that it came up in the first place.
     
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