A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Suicide vs Modafinil

Discussion in 'General ME/CFS Discussion' started by 62milestogojoe, May 21, 2018.

  1. 62milestogojoe

    62milestogojoe What's a forum then?

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    I think many of us with this disease have contemplated suicide and I think that contemplation is justified given the loss of our functional lives. Sadly, there are many cases where contemplation leads to the final act itself. All of us can understand it.

    Having been bed bound, house bound and now moving forward again after more than 6 years of ME/CFS, I am back from a day's work at the lab (the only day I will work this week) courtesy of 100mg of Modafinil which I take once a week.

    The motivation to post was sparked by whispers on the BBC in an interview with a member of staff from London School of Hygiene and Tropical Medicine who organise the ME biobank. There was the usual nod to immune studies and ATP production dysfunction but what caught my attention was a brief mention of post mortem brain pathology indicating inflammation in the basal ganglia.

    How does this tie in with Modafinil use? For several years I have suspected neuroinflammatory processes to be involved in this disease, my suspicions based on symptoms of ME/CFS. The original Osaka study suggested that this might be the case and we are all waiting with anticipation for the results of their second study.

    If you are not familiar with brain anatomy it would be worthwhile checking out the simplified diagrams I posted last year in the neurological forum here http://forums.phoenixrising.me/inde...vidence-of-cognitive-dysfunction-in-me.53421/ How can Modafinil open the window for very ill ME patients?
    1-increases hypothalamic histamine levels effectively helping to wake us up.

    2 targets the activation of orexin neurons in the hypothalamus and so increases dopamine levels so we feel better.

    3-increases norepinephrine levels in the hypothalamus so we feel more active.

    4- arouses brain function by upgrading signal efficiency so we can think through the normal fog.

    5-boosts serotonin in the amygdala so our mood brightens.

    There is a lot of information on the drug but self-hacked is a reasonable source with references
    https://www.selfhacked.com/blog/how-to-get-the-benefits-of-modafinil-without-taking-it/

    It is worth keeping in mind that this drug is a replacement for amphetamine sulphate in many military outfits and Modafinil should be used with caution and should not be used regularly. I relate my personal experience of using the drug. My first usage was whilst still housebound and I was overjoyed to walk 50 metres down the road. It is now 4 years or more since that time and Modafinil remains in my armoury of supplements.

    I guess my point is this: if a person is in a depressed state in which he or she has forgotten how it feels to be 'normal' then Modafinil can give access for 8 hours to a window on normality. That window is enormously encouraging to a psychology riven by ME. For me, it spurred me on to not give in to the disease and to fight on. Now, it enables me to work a full day. I have maintained a pragmatic attitude towards trying to get better. I am certain that the drug is not suitable for everybody and I do not endorse its use but I am happy to relate my own experience.
     
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  2. hmnr asg

    hmnr asg Senior Member

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    Hi there and thank you for your post ,
    I have somehow held on to my desk job in spite of the CFS but recently I have been getting exponentially worse and I was really considering modafinil.
    But for me there always seems to be a huge crash waiting for me on the other side of exertion . So I could take caffeine pills and maybe i would get a burst of energy but then I end up getting much worse.
    So I guess my question is, how can modafinil provide this boost without the crash ? And if that is the case, why not just stay on it indefinitely?

    Thank you
    H
     
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  3. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi. Caution is advised with modafinil regarding payback from the boost in energy. I have never taken the drug on consecutive days and anticipate a very quiet day for recovery the day after. I was pointed to a useful piece of supplement advice by Hip recently which has helped with ameliorating any approach to a crash. In fact I have just taken creatine monohydrate, d-ribose and cq10 in powder form in a drink.

    I have never taken caffeine pills so cannot comment but I do drink 3 cups of strength 4 filter coffee a day and appreciate the wake up. I take the Modafinil at around 9.00am and sense the come down about 7 hours later.

    I don't think it would be wise for even a healthy person to take Modafinil on a daily basis, certainly not a person with ME/CFS. I view the drug as a means to temporarily change one's perspective positively in a psychological sense and secondly to provide a very real crutch to get through a demanding situation such as work.

    I experiment a lot so if I was to consider taking 100mg of Modafinil for the first time I would definitely take it on a working Friday to give me 2 days in which to recover in case of a crash.
     
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  4. Hubris

    Hubris

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    The title of this post reminded me of my last psychiatrist who told me she would rather want to see me stuck in bed my entire life than give me modafinil.

    Her "rationale" for this is that me/cfs is the same diagnosis as psychosomatic syndrome which "puts you very close to psychosis". She is "100% sure that anyone with me/cfs who tries modafinil will develop psychosis. I would rather see you stuck in your bed your entire life than give you modafinil". She was only willing to prescribe antipsychotics which predictably only made me worse.

    She once told me her greatest fear is developing psychosis, isn't that funny. I'm sure that didn't play a role in her absurd beliefs at all.

    It's been a year since and i've asked modafinil to over 10 doctors and they all said no. Cognitive issues are the biggest problem in my me/cfs and i also have extreme adhd symptoms that keep getting worse, i'm at the point where i'm unable to literally do anything which requires even the smallest amount of attention/concentration(like sending a mail). I'm also housebound from being physically disabled but plenty of housebound people can still do quite a decent amount of mental work, i'm literally unable to do anything. For someone that used to be(and still is...) very ambitious i don't think there can be anything worse.

    Lately i've been asking for bupropion which is technically an antidepressant but also used to treat adhd (i don't have depression but since stimulants are taboo in my country i'm trying to scrape for what i can get. Though, if i was depressed i would have every reason for it). Even then everybody said no. Sometimes all of this makes me think that doctors just dont give a flying fuck about their patients.
     
    Last edited: May 21, 2018
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  5. 62milestogojoe

    62milestogojoe What's a forum then?

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    Brain fog is a crippling, horrible facet of ME. There have been times when I've dribbled over my fingers trying to spell my name. You have my sympathy Hubris. My doctor refused to prescribe Modafinil too and offered fluoxetine. Chalk and cheese, apples and oranges. No comparison. I sourced the drug online. Whilst there remain doctors who will not accept the terrible reality ME patients suffer it is places like PR that can provide sources of help and support where we do give a flying fuck.
     
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  6. Hip

    Hip Senior Member

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    One thing you can consider as an alternative to modafinil is sulbutiamine, a synthetic derivative of vitamin B1. Sulbutiamine is a supplement available without prescription. I found sulbutiamine has potent stimulatory effects, perhaps even stronger than modafinil.

    I find sulbutiamine 300 mg gives me a very clear and energetic mind for one day; however, the next day I feel mentally depleted and a little depressed, and so need to take a day to recover. For this reason I rarely take sulbutiamine, as I don't like the next day payback. But I have seen reports from some people who say they do not feel depleted the next day, and can take sulbutiamine for long term periods.
     
  7. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Hip. What you report is interesting and helps reinforce the fact that different reactions occur in individuals to the same compound. I had an unpleasant reaction to sulbutiamine mentally, feeling anxious and claustrophobic and very 'heavy-headed'.
     
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  8. Sushi

    Sushi Moderation Resource Albuquerque

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    Interesting Hip. I got interested in sulbutiamine and tried it for quite a while and didn't notice anything! Our individual responses are so weird.
     
  9. Eneia

    Eneia

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    Modafinil was one of the first drugs I ever tried (a friend was narcoleptic) and it didn’t do anything noticeable, in spite of me thinking this would be my saviour (as you want to believe when you first hear of something after not knowing what you have).

    This friend by the way was taking it daily as he had to use it to be able to drive (he fell asleep at the wheel).

    That’s over 20 years ago so maybe now they’ve realised it’s dangerous (from what I’m reading here I’m getting this impression), but then it was presented to me as totally inocuous. No psychosis for me!
     
  10. robinhood12345

    robinhood12345 Senior Member

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    Modanafil is dangerous. Usually the people promoting it are selling it. IMO admin should now allow it to be promoted
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    It is not being promoted it is being discussed by members who have had either positive or negative experience with it. It is an FDA approved medication and, as we have all experienced, we cannot predict our individual response to medications. As a group, we tend to be more sensitive to medication so most of us are cautious about trying new drugs.
     
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  12. robinhood12345

    robinhood12345 Senior Member

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    I didn't know it was FDA approved I just thought it was an internet nootropics thing, have read very bad things about it, and noticed the only people saying it is good are ones who make nootropics videos on youtube, and they have websites selling it.

    About sulbutiamine- I took it or a while, and got sick on it, and there are a lot of negative reports like mine about it on reddit, and amazon sulbutiamine reviews. It is structurally similar to known thiamine transporter inhibitors, and there is studies showing it messes around with various neuro transmitters so those things may explain why it acts like a poison. I don't believe it is possible to have a positive experience with it.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I find modafinil a great drug for myself. I dont find it stimukating as such but feels like all my neurons works compared to 20% working and helps concentration. 50 or 100mg ive found effective. The bigger the dose ive found isnt necessarily strong but just lasts longer.

    Currently i might use it twice a week but have used it as much as 4 to 5 days a week to keep working. I couldnt really say i got any pay back from it but i guess it depends on what one does.

    I recall reading a study showing its neuroprotective in sleep deprived people. Sounds like its made for cfsme??

    Recently been using some nootropics on a few other days for work to help concentration when needed. Phenylpiracetam and noopept either alone or together. They can be used on alternative days to modafinil ive found but dont last as long as modafinil.

    Id also encourage males to look into testosterone replacement therapy . Low T on its own can cause depression in men as well as a host of other health issue like poor insulin sensitivity, low energy and poor general recovery. It plays a big role in dopamine metabolism. HIV men trt is shown to improve immune function and control inflammation. Another treatment that sounds like its made for guys with cfsme. It can be that link between neuroimmunity issues we have??
     
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  14. robinhood12345

    robinhood12345 Senior Member

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    I don't know the exact brain chemistry of modanafil but it would block receptors or enzymes or transporters aka a poison. Phenyl piracetam would interfere with GABA metabolism it being a GABA analog. Noopept would be a poison too.

    Why not plug some natural nootropics like choline, inositol, bakers yeast, sea food, or one of many other safe, and effective molecules or foods. There seems to be a trend that "nootropic" salesmen don't like safe, and effective things, and so make slanderous claims about them to deter readers from trying them. It has happened with choline on this forum. It seems to be those in the mental health field pushing the analog "nootropics". Proof of this is psychiatrists giving lithium to mental illness patients when lithium stop inositol synthesis, and SNPs in inositol genes have been found in bi polar, and schizophrenic patients, and multiple studies show inositol is good for a range of mental illnesses because it makes all the other nuero transmitters, and some hormones bind to the receptors in the CNS.
     
    Last edited by a moderator: May 24, 2018
  15. Kenny Banya

    Kenny Banya Senior Member

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    Modafinil is what caused my #mecfs to slide from mild, for 24 years, to moderate within 3 days.
    That was over 2 years ago. Never recovered.
     
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  16. Eneia

    Eneia

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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not sure how you can say something is poison when you stated you dont know the exact brain chemistry of these substances.

    Never heard or read racetams interfering with gaba receptors. They mostly work on cholinergic receptors and glutamate receptors. Theres plenty of research showing they are neuroprotective, hardly a poison.

    Mentioning the dangers of lithium has nothing to do with this thread at all. Sounds more like scare mongering on anything pharmaceutical and 'natural' is the only way.

    Do they work for everyone? Probably not, but they can be very helpful for many. If it improves ones quality of life, too bad, just suck it up and stay curled up in the corner in the fetal position i guess.
     
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  18. robinhood12345

    robinhood12345 Senior Member

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    Modanifil is a non naturally occurring molecule therefore it has no place in the body, and will interfere with metabolic processes by definition.

    Racetams are analogs of GABA, so likely interfere with GABA metabolism. The research on them are fake studies same with sulbutiamine, and modanifil. They are neuro damaging. Most of the amazon reviews on such products are fake, but search 1 star reviews, and there are a lot of negative experiences with them. Taking several grams of GABA is a million times better than taking the racetams.

    Lithium is well known to block inositol monophosphatase 1 enzyme which inhibits inositol synthesis 30-75%. Not scare mongering just science. Some use science to harm strangers, and make money. Others use science to try to help strangers with no profit for themselves.

    The best "nootropic" which is just a category name for marketing purposes would be choline, inositol, yeast, lecithin, huperzine a, PEA, GABA, fruit, banana skin (high in dopamine, adrenaline, and nor adrenaline), and any other foods high in b vitamins, antioxidants, or minerals.

    One way salesmen of anything try to hock their garbage product is pretend they take it or use it themselves, and it gives benefit to them so it is the same for the analog/non naturally occurring nootropics.
     
    Last edited by a moderator: May 25, 2018
  19. panckage

    panckage Senior Member

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    Just to throw it out there modafinil makes me extremely paranoid so just be aware if anyone is trying it out for the first time. Ritalin works ok for me as long as I don't use it when my body needs rest
     
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  20. L'engle

    L'engle moogle

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    I tried it for a couple of weeks some years ago. I got a very tense and unpleasant feeling, then got some kind of neuropathic feeling in my foot. It was a relief to stop taking it.
     
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