Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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I'm 100% better, can function again

Discussion in 'General Treatment' started by pdgoldinc, Feb 2, 2016.

  1. pdgoldinc

    pdgoldinc

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    I have been in search of something to help with this terrible brain fog and horrible sleepiness and exhaustion. I am now taking Modafinil and Phenylpiracetam. I can't believe the difference it makes. Has anyone ever tried this combination before? I recommend it and it's very inexpensive. Would like to get some feedback.
    I won't edit this post but instead make a correction, because some people already read it, I'm not taking Modafinil, I'm taking Adrafinil. Sorry about the mistake.
     
    Last edited: Feb 2, 2016
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  2. soofke

    soofke

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    Dutchy
    no experience with that but since it interacts with dopamine and GABA, and since my bugs were removed from my brain all sorts of neurotransmitters have been flowing again, I totally understand why and even a littlebit how this would work....you must be over the moon!! any sideeffects?
     
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Modalert low dose, with noopept, another racetam. I wouldn't say 100% but it helps abit more than modalert alone . Noopept alone was mild.

    The combo has helped with sleep deprivation and needed to function .

    Alpha gpc in the past i have found helps with cognitive fatigue but a recent order i didnt notice much at all.
     
    pdgoldinc likes this.
  4. Lillybelle

    Lillybelle Senior Member

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    Modafinil causes me severe crashes and even a couple of days can impact my immune system for months. It activates the sympathetic nervous system so increase heart rate and nervous system function as well as cognition.

    Most researchers advocate pacing and keeping heart rate below a certain threshold as aerobic or sympathetic nervous system dysregulation has all sorts of immune flow on effects.

    Hey it's great when you take it and if you don't crash good luck to you. But be really careful. I ended up with walking pneumonia for7 months acute breathing and asthma problems and heart arrhythmia.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I guess its a double edged sword especially if one has pots/oi issue. It may help low bp but no good for some with postural tachycardia etc. Everything seems to be a juggling act with us :(
     
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  6. Bansaw

    Bansaw Senior Member

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    What do you mean, "bugs from your brain?" Are you saying you had a bacterial infection? If so, what did you do that cleared tings out?
     
  7. soofke

    soofke

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    Dutchy
    regular antibiotics but for nearly a year, with big breaks, and homeopatic stuff for the viral part

    if you think ME is tough try getting cured (and I'm not even there yet) from it :nervous: the serotonin-buzz is fun but the others, that I can't quite place and my neurologist looked at me like I'm crazy so no help/guidance from there either, can feel quite horrible, and it goes along with a pressure that causes sore spots within minutes, but that often continues for hours :ill: think it's the affected metabolism (viruses don't have one themselves, they feed off ours) that's getting up and running again, like *hopefully* soon I will be too
     
    Last edited: Feb 2, 2016
  8. pdgoldinc

    pdgoldinc

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    I don't have any side effects from it at all. Two days ago, I was able to sleep through the whole night, I have not done that in month and month! I don't know how safe Modafinil, actually, it's Adrafinil and Phenylpiracetam are, my primary does not seem to be much help at all, she has no clue about ME/CFS but finally agreed to send me to a Neurologist after suffering for a year and a half. I had asked for help on every visit and never gotten any. My BP has not risen nor has my HR. I will give frequent updates to my improvements on this site. Today, I am working on the computer again and look forward to a life again. You should really give this a try if you are suffering from sleepiness and brain fog, Adrafinil and Phenylpiracetam are what made me improve.
     
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  9. drob31

    drob31 Senior Member

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    I think allot of people are worried about it making them crash. However, it's great to hear it's working for you.

    I know with HPA-axis dysfunction, modafanil can be a tricky drug.
     
    heapsreal likes this.
  10. pdgoldinc

    pdgoldinc

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    I have previously tried Noopept, it seems to help with brain fog also, not as well as Phenylpiracetam.
     
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  11. Hip

    Hip Senior Member

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    Thanks for your write up, @pdgoldinc. Interesting results.

    I have not tried phenylpiracetam, but as racetams go, there are reports of tolerance build up to phenylpiracetam in some people after a few days. How long have you been taking this combination of drugs?


    I have tried a number of racetams, including piracetam, aniracetam, coluracetam, and noopept (though noopept is not technically a racetam).

    I find they help a lot with brain fog, but I find some racetams have side effects that make them problematic. Piracetam I find works well for brain fog, but increases my anhedonia and emotional flatness symptoms. Coluracetam I find causes disturbed, restless sleep with disturbed dreams (even if you take it in the morning).

    Noopept and aniracetam don't seem to have side effects for me though. In fact aniracetam helps improve the emotional flatness symptoms a little bit.
     
  12. pdgoldinc

    pdgoldinc

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    I have been experimenting with this and that for about a year now. I started joining forums about 2 month ago and have tried more pills and supplements, nothing worked. I am not about to stay in bed all day long, not being able to get up to even brush my teeth or pet my cats. Life can be better than that! Everybody always told me: You have to force yourself! Well, if you feel the way I normally felt, you can't force yourself, you can't get out of bed, you hardly make it to the bathroom! I just hope the good time lasts and I don't build up a tolerance quickly. It is good to know that other people have tried "racetams" before, I never really heard of it before. Thank you all for the replies!
     
  13. Hip

    Hip Senior Member

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    @pdgoldinc
    What dose of phenylpiracetam are you taking, by the way? Are you taking phenylpiracetam just once daily, or several times a day?
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Phenyl sounds interesting . Ive tried other racetams. Piracetam made me sleepy , aniracetam was good, pramiracetam was energizing but quick tolerance, oxiracetam did little.
     
  15. Hip

    Hip Senior Member

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    Looks like there was a study in Russia examining the benefits of phenylpiracetam for ME/CFS:

    ME/CFS patients were treated with phenylpiracetam (50 mg twice daily), piracetam (400 mg thrice daily) and placebo. The scores of the ten-word memory test and attention switching tests for the phenylpiracetam improved relative to those of piracetam and placebo.

    83% of ME/CFS patients responded well to phenylpiracetam, whereas just 55% ME/CFS patients responded well to piracetam.

    80% of ME/CFS also experience "increased sexual activity" while taking phenylpiracetam.

    So phenylpiracetam looks like it works better for ME/CFS than piracetam in this study.



    The 2004 Russian study:

    Efficiency Phenotropil the treatment of asthenic syndrome and chronic fatigue syndrome, Akhapkina, AI Fedin, AS Avedisova, RV Akhapkin.

    [Эффективность фенотропила при лечении астенического синдрома и синдрома хронической усталости, В.И. Ахапкина, А.И. Федин, А.С. Аведисова, Р.В. Ахапкин]

    The study is slightly confusing to read in that they treated both chronic fatigue syndrome patients, and also asthenic syndrome patients.
     
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  16. Hip

    Hip Senior Member

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  17. picante

    picante Senior Member

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    The title is confusing to read, for starters. The Russian says "The Effectiveness of Phenotropil in the treatment of ...."

    Just glancing at the study, it looks like the word order is Russian, that is, it's not always subjet-verb-object; it varies. Lots of mistranslations there. Maybe it's a machine translation. It's cool :cool: that the original Russian appears when your cursor is over the text. Not that I understand it!o_O
     
  18. Hip

    Hip Senior Member

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    I just copied that title directly from the Google translation of the original Russian. I imagine it might be better translated as "The Effectiveness of Phenotropil in the treatment of asthenic syndrome and chronic fatigue syndrome."
     
  19. pdgoldinc

    pdgoldinc

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    I just took my "stash" out to see the directions. I take Adrafinil Bulk Powder 300mg/day and Phenylpiracetam 100 mg/day. I just got this stuff in last Monday, they provide a little measuring spoon but you are supposed to weigh it for accuracy. I don't have a scale. I get it from www.powdercity.com.

    I know that Adrafinil comes in pill form too, I only tried the powder so far. Adrafinil is supposed to be taken 2-3 time per week when you are the most sluggish. Well, I am sluggish every day, so I have taken a dose every morning, first thing when I wake up, before my cup of coffee and cereal. You should eat something with it. I actually got the tip from the company itself, somebody by name Tisha. I had written to them that I had not been diagnosed yet, but after many hours of research, I believe to have ME/CFS, I had ordered the sample pack and nothing really worked, except the Noopept seemed to work for brain fog. When I took Noopept, I would take a dose around 5 am and go back to sleep. Then when I would wake up, I surprisingly did not have any brain fog but still was exhausted.

    Tisha recommended Adrafinil and Phenylpiracetam. I followed her advice because I was open to try anything. I have been on street drugs (meth) for about a year. I needed about 2 lines right after I woke up and then I was good for the whole day. I wanted to get off that drug and asked my doctor to help me out. She told me, I had to quit taking meth and I would be fine. I told her if I quit taking meth, I would not be able to visit her in her office, she would have to make a house call. She did not get this at all and after me asking and asking for help, I never got anything, since my blood tests were normal. It is unreal how doctors react when you tell them you wake up exhausted with a very heavy cloud over your head. They tell you to go to bed ealier, I complain about sore throats and they tell me, it's the season, everybody has allergies, for all symptoms I explained I had, she had an explanation.

    I have watched videos on youtube.com about people which have ME/CFS and I seem to be a duplicate of these people.

    I don't know how how many people of the ones which read my posts, forget so easily, my short term memory is just gone. My husband helps me out a lot, he is my notebook, because if I write notes to myself, I can't find my notes when I need them. There has to be made an end to this suffering, and I truly hope that Adrafinil and Phenylpiracetam would work for you too. And if it does work, please plaster it all over the Internet and on the ME/CFS forums so other people can benefit from this too! Believe me, I know what you all are going through! It's pure HELL!
    Often I was thinking that I may not be able to continue my life on this Earth, because I am bedridded without any drug/help/ what ever you wanna call it and I won't stand for staying in bed if you don't have to. I have always been active all my life until I had the Epstein Barr Virus, I believe that's when I started to have problems. Thanks for reading, I hope you will improve soon too, you deserve a break!

    Daniella
     
    Last edited by a moderator: Feb 3, 2016
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  20. pdgoldinc

    pdgoldinc

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    I just saw new replies in the meantime. This is funny, I translate from Russian and Japanese and what ever else language often into English, because I was desperate for an alternative to meth. I write in simple language, often when I read reports about studies, I would be clueless at the end and even more confused. This ME/CFS is a horrible thing to have and nobody understands what you are going through. I did not know that phenylpiracetam was used in studies, I think more people should try it! What does it hurt to try new things? You don't have a life anyways suffering from ME/CFS!
     

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