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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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  1. arx

    arx Senior Member

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    Also, has anyone faced any tooth and/or gum problems because of Benzos?
     
  2. Nielk

    Nielk

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    I think, in general, one will feel in any part of the body after withdrawal. While the Benzos are working, it acts as a
    numbing of pain. After withdrawal, there might be a rebound effect and/or un-masking of problems.
     
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  3. AFCFS

    AFCFS Senior Member

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    Personal opinion is that would be a tough call, although I had found that University of Maryland Medical Center states that anticonvulsant medications, including benzodiazepines, may cause the body to use vitamin D faster. Talk to your physician about supplementation.

    Digging around search results, also found:

    If Klonopin is used for a prolonged period of time the Klonopin will deplete the B vitamin biotin from the body. A deficiency of biotin will cause numbness or tingling of the extremities, a reaction to loud noise or a reaction to bright light which could also include seizures.

    Anecdotally, my vitamin D was low after long term Klonopin use, on several occasions. Vitamin B was in range but on the low side. My pdoc wanted me to supplement with D3 5000iu and B12 5000 mcg. However, these also could have been caused by other factors as I believe also a relatively common finding in non-Klonopin users.

    With just those two examples, it would seem that coming off of it may eventually help the body with body with vitamins D an B.

    Interesting enough, this has been suggested:

    Vitamin D and Sleep

    One of the many roles of vitamin D is to regulate the pineal gland's secretion of melatonin, a "master control" hormone that regulates circadian rhythms and controls the cascade of other hormones and chemicals needed for falling asleep and waking up, according to "Biochemical, Physiological and Molecular Aspects of Human Nutrition." With the help of vitamin D, melatonin is released into the blood during periods of darkness or episodes of reduced sunshine. This explains why many people have such restful sleep during a night that follows spending time in the sun. Some researchers believe that insomnia and sleep apnea are due in part to vitamin D deficiency and that spending safe amounts of time in the sun can reverse many sleep irregularities.

    It may be a pretty broad sweep of logic and think it is more complicated than this, but it then seems conceivable why, aside form tolerance, that Klonopin may ultimately mess with sleep in the long term (via possibility of lowering Vitamin D).

    As we all present different symptoms, that tend not to be isolated, my pdoc also suggested I go on N-Acetyl-L-Cysteine (NAC) 2400 mg and gave me an Rx for a low dose of lamotrigine. That and doing the L-Tryptophan, Melatonin, and GAB for sleep as helped quite a bit.

    In any event, given that Klonopin is a CNS depressant - not just working in the brain, coming off of it could cause some additional along that route.
     
  4. arx

    arx Senior Member

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    AFCFS

    I know it's a tough call, but I read something about Vitamin C being depleted during benzo withdrawal, and that got me thinking..
    I've heard that many anticonvulsants deplete B and D vitamins. But I haven't read any good findings and articles about them. Thanks for the links.

    Once you read the list of Benzo Withdrawal symptoms(from any good source), you'll find A LOT of symptoms which one can attribute to specific deficiencies of vitamins. Can't help but think that it's all related. Vitamin C Therapy is quite useful in drug withdrawal, I've read at many places. Don't know how right they are..

    My doc also initially started off with Lamotrigine. I took a very low dose, 25 mg but I couldn't tolerate it at all. I got headaches,nausea,dizziness,irritability, weird dreams and thoughts, and a feeling that my nerves in spine and brain were being attacked. They felt contracted and agitated. I tried it four times on different days, but had to drop it. And my doctor had prescribed 200 mg per day. I couldn't tolerate 25!
     
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  5. AFCFS

    AFCFS Senior Member

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    Yep, taking these (any) meds can be a slipper slope. For whatever reason, Lamotrigine and Prozac was not a good comb for me, but if take away the Prozac then Lamotrigine seems to work well. I have seen where some people take Vitamin C during withdrawal, and it has seemed to help them. I was mega dosing on Vitamin C at the same time of withdrawal for other reasons (mostly bromide detox from Iodine Protocol) so it may have helped without me considering it. I know Vitamin C mega dosing can be a heated topic, but had a doc tell me to keep it at 500 mg max, suggesting this: Cancer-Causing Compound Can Be Triggered By Vitamin C.
     
  6. arx

    arx Senior Member

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    Yeah, there are varied opinions on Vit C mega dosing.Some say it works, some say it is a placebo effect.

    Max at 500 mg!?
    Fred's protocol mentions Vitamin C at 4000+mg per day. That is protocol dosage. Mega doses.. I've heard 7000+ mg/day easily.

    Cancer-causing compounds reminds me of folic acid. It's said that too much folic aid is linked to cancer. I wonder if it's the same for l-methylfolate/metafolin.. as I've read that Deplin at 7.5 mg/day is fine to take. Sounds like a risk when you read such things.

    Also, doctors are never in favor of high doses, maybe it's because they believe that the human body absorbs vitamins at a slow rate?
    I've seen doctors prescribe a softgel that contains ALA,B1,B6(Pyridoxine) in decent amounts and MB12 1500 mcg.
    Sounds so stupid to me when I'm following a protocol that takes p5p instead of Pyridoxine and MB12 sublinguals at the range of 4000 mcg. That's WAY higher than 1500 mcg in a softgel, which you might not absorb from at all.
     
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  7. AFCFS

    AFCFS Senior Member

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    Yea, had one doc said 5000 mg was fine and then the other said 500 mg. I think the concern comes from long term use and also interactions with metals/supplements like Chromium Picolinate. I think the general rationale is that we should be able to get all our vitamin needs from food sources. However, this may not always apply to people whose systems are compromised in some way, the goal then being to facilitate some stabilization with supplements and then either re-adjusting dose as improvement is seen or moving back to natural intake as desired outcome.
     
  8. alwayshopeful

    alwayshopeful

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    AFCFS...2400 mg of NAC?!! NAC is a huge heavy metal detoxifier and at that dose could really cause some terrible detox symptoms. Have you been able to tolerate that amount? Also, high doses of Vit C are used to counteract the heavy metal detox.
     
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  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    My understanding of the article is that vitamin C causes hexavalent chromium to become more carcinogenic. I do not know how common hexavalent chromium is.
     
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  10. arx

    arx Senior Member

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    Valency of Chromium in Chromium Picolinate is +3

    Quoting fromhttp://www.livestrong.com/article/139871-chromium-picolinate-vitamin-c/

    Considerations

    Vitamin C used in conjunction with chromium picolinate may increase the absorption of chromium, according to the Linus Pauling Institute at Oregon State University. The institute says increasing chromium to the level of toxicity could lead to DNA changes, as well as kidney damage and liver failure. Research at the University of Alabama in 1999 found that taking chromium picolinate in combination with ascorbic acid, found in vitamin C, may lead to cancer caused by these DNA changes.


    Warning

    As noted, chromium combined with Vitamin C may have a link to increased cancer risk. It is suspected that the pair may accelerate damage done to DNA, leading to cancer. As conclusive tests remain incomplete as of 2010, the long-term effects of chromium picolinate remain unknown. The Annals of Pharmacotherapy journal found that ingesting large amounts of chromium could also lead to kidney damage.


    Expert Insight

    The Science Daily website reported in March 1999 that the U.S. Department of Agriculture conducted a study in which rats were fed a combination of chromium picolinate and vitamin C for 24 weeks. At the end of the study, researchers did not see any difference in the rats given this mixture. This study is limited, as it does not address effects over a longer period of months or years. Generally, until long-term effects of such a significant risk are studied, it is recommended that users of this supplement proceed with caution or consider stopping its use altogether.
    -------------------------------

    So, that means Vitamin C is useful for chromium absorption,but the increased level should not reach toxicity. Too complicate to implement in real life!

    I've seen so many multivitamin softgels with Chromium Picolinate. I guess many users of those will also be taking Vitamin C, but will be unaware of this.
     
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  11. AFCFS

    AFCFS Senior Member

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    Yea, my pdoc, who is actually pretty much against many prescription psych meds, said to take the 2400 mg NAC for overall psych/brain health. Any liver/hevy metal detox is a plus. Have been taking it for about 3 months and has been going well. I have also been on Iodoral for hypothyroidism and its associated protocol w/5000 mg of Vit C, and about once a week would do a salt flush. Am backing off the salt flush and Vit C for a while.
     
  12. Bunchy

    Bunchy

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    Benzos are known to deplete B vitamins.

    arx - are you off benzos or tapering? I am nearing the end of my taper and have found Fred's Active B12 protocol very helpful along with lifestyle adjustments.

    Love Esperanza x
     
  13. arx

    arx Senior Member

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    Hi Esperanza,

    I'm almost off them now. Be it anticonvulsants,antihistamines,antibiotics... I'm super sensitive to these medicines now and the side effects I face are WAY more than the actual effects, which makes it taking those medicines a pain.
     
  14. Bunchy

    Bunchy

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    arx - yeah, stay away from benzos - they only create more problems than they originally solved eventually.

    Love Esperanza x
     
  15. kelly138

    kelly138

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    I agree
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    not for everyone, lack of sleep reduces immune function, hormones, mood etc the list go's on.
    WHat we should be saying is that we need better treatments for sleep issues and or better ways to use sleep meds. esciliting doses of benzo's is what causes problems which can be avoided by alternating different treatments and regular benzo holidays.
    There is a way to use them effectively but either docs dont know, dont care or just dont explain things to their patients.
     
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  17. kelly138

    kelly138

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    lack of sleep is a problem but treating it by throwing drugs like benzo or z-drugs at the patient is worse than having the insomnia in my opinion and based on my experience

    what has helped me most is getting on xpap

    have you had to deal with protracted benzo withdrawal and/or kindling? the z-drugs that act on GABA-alpha will cause these same problems
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    we dont have anything else to throw at the problem. xpap i take is like cpap, that will help if u have a breathing disorder causing sleep problems but wont fix insomnia.
    Its easy to say dont take sleep meds but when one doesnt sleep or is only sleeping a couple of hours a night, it doesnt get much worse.
    One problem i see with sleep meds is that they arent always used for severe cases. I have seen people say they had a terrible time sleeping and that they only got 6 hours sleep, really, these people dont need sleep meds and these people may end up with worse problems being on sleep meds then their original condition. But people who arent sleeping and find relief with sleep meds will tell u it makes a big difference. its not a cure but symptomatic relief. People with ME have damage to their sleep centre in the hypothalamus, there are no treatments other then sleep meds.
     
  19. kelly138

    kelly138

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    I am on APAP myself - XPAP can be used for various kinds of sleep disorders not just Obstructive Sleep Apnea - I happen to have OSA myself but also have a long history of insomnia as well as PTSD that causes at least part of it that goes back into childhood

    Fancy machines such as the ones Krakow uses (see his talk link below) are used to treat Central Sleep Apnea -- yes there is a breathing problem but it is neurologically based (brain farts) not caused by air passage blockage

    I have been on sleep meds - was on them for years - have been destroyed by them - this is just my experience as we all know our experiences do not necessarily reflect everyones.

    I was diagnosed with Fibro shortly after I was diagnosed with OSA only because it took forever to see a board certified rheumy. I was told I had MCS long before these.

    for me first of all getting on XPAP treatment was a big step and getting off the z-drugs was another and I have still not recovered from that even though I have been off for over 2 years - I know personally I can not take another benzo or z-drug ever again -- I saw the destruction from benzos over 30 years ago - I knew not to return to them and was lied to about how the z-drugs worked - again some ppl can take benzo holidays and return to being able to use them again but not everyone can

    not sure you would be interested in listening to this but I will post it anyhow - it might not be appropriate for your case but someone else reading this thread might find it interesting (and it is a very recent discussion)

    http://sleeptreatment.com/index.php...nsomnia-and-sleep-apnea&catid=954&Itemid=1805
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When it comes to sleep and meds theres always 2 ends of the spectrum and alot of things in between. Like u have mentioned there needs to be other causes of sleep problems ruled out.

    My experience is that once apneas and movement disorders in sleep were ruled out then your left on your own. I do think there are other things one can do that can help sleep besides benzo's as well as using these things as well as benzo's which helps one stay on a lower dose. Generally most GP's have nothing else to offer and some just dont have access to say an intergrative doctor who might be able to help.

    From what i have read in cfs/me and sleep/insomnia problems is that it can be from the hypothalamus being damaged from infections etc that is causing the sleep problems. Even those ME sufferers who have never used sleep meds end up with worsening insomnia as the disease progresses. I think in some cases when people say that when they stop sleep meds and they just cant sleep, not only could it be withdrawal/rebound insomnia from benzo's but also that part of the hypothalamus that controls sleep is still broken??

    Something i have found searching to help sleep problems was that the paraventricular nucleus (PVN) which is in the hypothalamus controls cortisol rhythm. I think this can have alot to do with sleep in cfs/me as frequently its seen that adrenal hormones are dysfunctional and they are controlled by the PVN. SOmething i have found helpful and wish i came across it along time ago was phosphatidylserine which helps improve cortisol sensitivity and this can lower high night time cortisol. I still have some difficulty getting to sleep but once asleep im sleeping through the night or if i do wake up for a pit stop, then i can easily fall back to sleep.

    The link you posted is interesting and sounds like it will be helpful for some, but i think its different to the text book sleep problems with cfs/me. breathing disordered sleep does need to be ruled out.

    One thing i dont understand about the link u posted was that how do they explain apnea affecting people who just cant fall asleep, as u need to sleep to have sleep apnea?? I think sleep issues in cfs/me is something they really need to research alot more, i just think there is maybe something unique in us compared to other sleep disorders as well as maybe multiple sleep issues going on.

    cheers!!
     

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