27 replies to this topic

[EastofEden]

I just got out of a doctor's appointment, and once again, they have no answers for me. I have seen several doctors for this over the years, and the problem has been progressively getting worse over the past few months.

Symptoms:
- Hypersomnia - in the range of 12 - 15 hours a day; MUST nap
- Excessive Daytime Sleepiness - literally never alert, rested, fully awake
- Generalized Muscle Fatigue and Weakness
- Shortness of Breath
- Dizzy Spells
- Loss of Appetite
- Irritability
- Mental Confusion, Forgetfulness

Tests:
- Blood test - thyroid hormones, hematocrit, iron levels all normal; B12 marginally low (190), begun taking 1200 mcg/day
- Polysomnography Feb. 4; won't know results until March 31.


The doctors I have spoken to do not seem to realize the gravity of the situation. Their "prescriptions" have been to exercise more, eat better, set a sleep schedule, make sure the room isn't too hot, drink energy drinks etc.

Which would maybe be good advice if I hadn't SPECIFICALLY told them that, for a period of 3 months straight, I was eating extremely well, working a physically demanding job, spending 10 + hours a day outside in full sunlight, going to bed and waking up at the same time each day, not being able to nap, etc. etc. AND STILL BEING EXHAUSTED,CRASHING AND SLEEPING EXCESSIVELY

So, once again, I am on the internet, researching, trying to find a condition that matches my symptoms. Every step of the way I have had to be the one to ask for blood work, to ask for the sleep clinic test, etc. All the doctors want to do is label me depressed, despite my adamant protests that I only have the physical symptoms and I am not sad.

So, ImmInst, here is where you come in. I am hoping that someone here will be able to suggest legal drugs or supplements or any combination thereof, that can *significantly* improve wakefulness and prevent napping/excessive sleeping.

I am already taking:
- a good multi with lycopene, CoQ10
- fish oil (1000 IU)
- D3 (2000 IU)
- B-complex + Vit C
- B12 (1200 mcg)
- Calcium, Magnesium
- Gingko Biloba (120 mg)
- Green Tea Extract
- Lecithin (1200 mg)

Caffeine, generally 200 - 500 mg a day (to no effect).

Would love to try Ritalin, Adderall, Provigil, Nuvigil, etc. but I am getting so much resistance from doctors, who think I am just an overachieiving student looking for an edge.




I don't know what else to do. It is the middle of midterms and essays season, and I can barely drag myself out of bed. I am sleeping through classes daily and making careless mistakes in my schoolwork due to sleepiness. I do not want to see my formerly stellar (90%+) grades drop dramatically due to this problem.

Any help is greatly appreciated!

[caruga]

Sounds like chronic fatigue to me. Since November last year i've made myself into a guinnea pig to try and cure my chronic fatigue (had it since I was 14, i'm 26 now), with a willingness to spend what money I can in the hope I'll eventually hit something that works. Just in the last few days I'm getting quite a bit of progress, but since I'm taking so many things I can't pin my improvement on something specific. Sometimes taking a single thing in isolation will make a dramatic improvement, othertimes it won't do anything. I postulate that this is due to several "systems" being overworked in my body, and they all fail me at different times, which accounts for the unpredictability of my energy levels. Several substances that arrived just today appear to have helped me immediately after taking them, but it's hard to vouch for them on such early notice. I can't really say "take this substance" so much as: try everything. Aim for recovery rather than energy; give the body everything it can possibly need and then some more. Stimulating substances by themselves tend to just wring every last drop out of me and then make me feel worse than ever, particularly with brain fog. Many naturally occuring substances are not classified as nutrients but provide amazing benefits to the body, so much so that they really should be a part of everyone's diet and none should be called a rounded diet without them.

If I were to prematurely make a list, here are a few suggestions (almost all of these are powders):



200mg piracetam, 300mg guarana, 400mg dmae bitartrate, 800mg choline bitartrate. I have a theory that I have mitochondrial dysfunction. Before I had chronic fatigue at age 14, I was still a rather frail, sicky child with very poor stamina. Despite doing P.E. with everyone else at school I was always last when running laps, even vs, the fat kids (i'm skinny). I also have asperger's which implicates mitochondrial dysfunction. Piracetam can improve mitochondrial dysfunction. Of course by my untrained opinion this is a bit of a stretch, but my subjective experience is that piracetam greases the wheels for my mind and seems to enhance/enable other supplements that didn't work for me or didn't work as well. I also don't seem to require much of it, as you can see.

100mg grape seed extract, 100mg ginkgo biloba, 500mg saw palmetto (prostate issues have a higher comorbidity with CFS), 2g N-acetyl-cysteine, 2g MSM, 2g malic acid, 1.5g magnesium citrate. I take this all at once an hour or two after the piracetam, and it gives varying day-long supplies of energy without any crash.

Menaquinone 4 100mg, calcium 400mg, vitamin d3 5000 iu.

2x shizandra adrenal complex (see this thread, kelp (for iodine->adrenals), and coq10 (100mg ubiquinone, would have purchased ubiquinol if it weren't so expensive). Only been taking these a week or two--at least one of these, has been definitely stabilizing me and giving me more staying power, with less erratic energy levels. Before it was more like my energy came in spurts--every 10 seconds it felt like I was totally shattered or only mildly tired, which became a stressor in itself. This instability has been eliminated by one of these, or possibly more than one of them. Maybe with more time I'll convalesce even further now that I'm receiving "adrenal support" (The docs said my adrenals were fine as well, incidentally).

The stuff I received just today are: alma berry powder, nettle leaf powder, maca powder, cordyceps powder. It seems i've lucked out or something, since every single one seems to give a pronounced positive reaction (brighter, more confident, happier, the works). This means nothing at this stage.

Also tried: tyrosine (I've taken doses up to 10 grams (!!), though since taking piracetam i can't even take a gram without massive headaches--it sometimes give me an energy boost--it can get converted in the body to coq10?), ashwagandha (very sedating the first time I take it, then completely immune to the sedating effect--I feel a bit hardier from long-term use of taking it but very subtle), rhodiola (very random whether it does anything for me, the effects are subtle--mood lift and faint energy lift/motivation. I'm not sure whether to take it sporadically or consistently, since adaptogens generally have a build-up effect but rhodiola specifically is considered to have a tolerance build-up--I struggle to discern what's going on with it). Theanine: not very impressed, hard to make out an effect, but the highest response is at the lowest end of the 100mg-1g scale. Glutamine: nothing consistent or reliable off of it. Taurine: makes me sleep longer, but not necessarily better, and *possibly* works well with caffeine. Glycine: supposed to improve sleep quality, but hard to tell. GABA: Well it definitely does something, the flush is very pronounced for one thing. Can make me feel a little drowsier, that's about it. Bacopa+gotu kola (got this in a 1:1 powder mix), not sure about this. Phenibut: great sleep aid but effect lingers into the next day, I haven't experienced the tolerance buildup since I've spaced the dosage from the beginning. Sometimes improves my confidence (or eliminates anxiety).

That's all I can think of for now though i've doubtlessly missed something.

Edited by caruga, 08 February 2011 - 07:34 PM.

[EastofEden]

Sounds like chronic fatigue to me. Since November last year i've made myself into a guinnea pig to try and cure my chronic fatigue (had it since I was 14, i'm 26 now), with a willingness to spend what money I can in the hope I'll eventually hit something that works. Just in the last few days I'm getting quite a bit of progress, but since I'm taking so many things I can't pin my improvement on something specific. Sometimes taking a single thing in isolation will make a dramatic improvement, othertimes it won't do anything. I postulate that this is due to several "systems" being overworked in my body, and they all fail me at different times, which accounts for the unpredictability of my energy levels. Several substances that arrived just today appear to have helped me immediately after taking them, but it's hard to vouch for them on such early notice. I can't really say "take this substance" so much as: try everything. Aim for recovery rather than energy; give the body everything it can possibly need and then some more. Stimulating substances by themselves tend to just wring every last drop out of me and then make me feel worse than ever, particularly with brain fog. Many naturally occuring substances are not classified as nutrients but provide amazing benefits to the body, so much so that they really should be a part of everyone's diet and none should be called a rounded diet without them.

If I were to prematurely make a list, here are a few suggestions (almost all of these are powders):



200mg piracetam, 300mg guarana, 400mg dmae bitartrate, 800mg choline bitartrate. I have a theory that I have mitochondrial dysfunction. Before I had chronic fatigue at age 14, I was still a rather frail, sicky child with very poor stamina. Despite doing P.E. with everyone else at school I was always last when running laps, even vs, the fat kids (i'm skinny). I also have asperger's which implicates mitochondrial dysfunction. Piracetam can improve mitochondrial dysfunction. Of course by my untrained opinion this is a bit of a stretch, but my subjective experience is that piracetam greases the wheels for my mind and seems to enhance/enable other supplements that didn't work for me or didn't work as well. I also don't seem to require much of it, as you can see.

100mg grape seed extract, 100mg ginkgo biloba, 500mg saw palmetto (prostate issues have a higher comorbidity with CFS), 2g N-acetyl-cysteine, 2g MSM, 2g malic acid, 1.5g magnesium citrate. I take this all at once an hour or two after the piracetam, and it gives varying day-long supplies of energy without any crash.

Menaquinone 4 100mg, calcium 400mg, vitamin d3 5000 iu.

2x shizandra adrenal complex (see this thread, kelp (for iodine->adrenals), and coq10 (100mg ubiquinone, would have purchased ubiquinol if it weren't so expensive). Only been taking these a week or two--at least one of these, has been definitely stabilizing me and giving me more staying power, with less erratic energy levels. Before it was more like my energy came in spurts--every 10 seconds it felt like I was totally shattered or only mildly tired, which became a stressor in itself. This instability has been eliminated by one of these, or possibly more than one of them. Maybe with more time I'll convalesce even further now that I'm receiving "adrenal support" (The docs said my adrenals were fine as well, incidentally).

The stuff I received just today are: alma berry powder, nettle leaf powder, maca powder, cordyceps powder. It seems i've lucked out or something, since every single one seems to give a pronounced positive reaction (brighter, more confident, happier, the works). This means nothing at this stage.

Also tried: tyrosine (I've taken doses up to 10 grams (!!), though since taking piracetam i can't even take a gram without massive headaches--it sometimes give me an energy boost--it can get converted in the body to coq10?), ashwagandha (very sedating the first time I take it, then completely immune to the sedating effect--I feel a bit hardier from long-term use of taking it but very subtle), rhodiola (very random whether it does anything for me, the effects are subtle--mood lift and faint energy lift/motivation. I'm not sure whether to take it sporadically or consistently, since adaptogens generally have a build-up effect but rhodiola specifically is considered to have a tolerance build-up--I struggle to discern what's going on with it). Theanine: not very impressed, hard to make out an effect, but the highest response is at the lowest end of the 100mg-1g scale. Glutamine: nothing consistent or reliable off of it. Taurine: makes me sleep longer, but not necessarily better, and *possibly* works well with caffeine. Glycine: supposed to improve sleep quality, but hard to tell. GABA: Well it definitely does something, the flush is very pronounced for one thing. Can make me feel a little drowsier, that's about it. Bacopa+gotu kola (got this in a 1:1 powder mix), not sure about this. Phenibut: great sleep aid but effect lingers into the next day, I haven't experienced the tolerance buildup since I've spaced the dosage from the beginning. Sometimes improves my confidence (or eliminates anxiety).

That's all I can think of for now though i've doubtlessly missed something.

Thank you for the reply. Fatigue is definitely a major component of whatever is going on with me, but I am not sure that I would go so far as to label it "Chronic Fatigue Syndrome". For one, in my experience that has been a catch-all diagnosis for when they have no clue what is wrong with you -- "idiopathic fatigue", etc. For another thing, with the exception of the tiredness and desire to sleep, the other symptoms are relatively mild. Outside of this problem, I am pretty damn healthy. I rarely get infections and generally recover well. I bounce back from injuries and physical exertion very well. The sudden worsening of symptoms in the past few months is also making me suspect that it is more pathological than general poor health.

Right now, a sleep disorder (narcolepsy, restless leg syndrome, other forms of parasomnia) is the most likely candidate. I have noted that I fall into a dream state (REM) within minutes of falling asleep, including when napping, which may indicate that my brain is not switching into the non-REM restorative portion of the sleep cycle. For these reasons, and somewhat ironically, I am also doing research on sleep aids. For example, narcoleptics are often given sedatives such as GHB (Xyrem) to facilitate deep, dream-free sleep. Right now I will be experimenting with Melatonin sublingual 5 mg tablets.

With regards to the supplements you posted, I have sent away for Piracetam and I am very excited to try it! Will be receiving it within a week or two. I'm not sure how it will help with the alertness issues, however. The other supplements I was considering were taurine, guarana,or tyrosine; the former two especially since they are additives to many energy drinks. I have no experience with any of these supplements.






Lastly, does anyone on ImmInst have any experience with neurofeedback? Although my mother is a practitioner, I have never used it. Supposedly it can be used to "train" the brain to enter certain states of mind over others (as measured by brain waves). She has suggested that I could practice getting my brain into a more highly aroused state and to lower the amount of alpha-theta waves. The research is still being conducted, but it has shown positive early results in people with attentional issues. Of course, biofeedback is already used very successfully for things like incontinence and high blood pressure.

[caruga]

Guarana is just "slow releasing caffeine", I use it to control the dosage and get fewer spikes and dips. Have you sought to get a sleep study done? I can't obtain one for myself here in the UK.

[EastofEden]

Guarana is just "slow releasing caffeine", I use it to control the dosage and get fewer spikes and dips. Have you sought to get a sleep study done? I can't obtain one for myself here in the UK.

I had a sleep study (known here as a polysomnography test) done on February 4. I will have my results March 31st, so at this point I can't comment on any results. It is frustrating to know that I will have to deal with these symptoms for at least 6 more weeks, since no doctor I have spoken to will prescribe me stimulants off-label.

Thanks for the tip about guarana!

[ajnast4r]

i had significant reductions in fatigue when i started taking vimmortal... likely from the choline.

[kilgoretrout]

Piracetam gives me and many others a sort of "brain fog" that can also include sleepiness. I would avoid with your condition.

Theanine tends to be "relaxing" so avoid that as well.

When you have tried Tyrosine, did you include 25mg B-6, an essential co-factor in the conversion to the neurotransmitters, as well as Vitamin C (or ester C even better) which acts as a catalyst to the reaction? I would end the piracetam and try the tyrosine+b6+c combination to build neuron stores of Norepinephrine and Dopamine ON AN EMPTY STOMACH, plus Rhodiola ON EMPTY STOMACH as well.... followed a little while later by food then just regular old caffeine, which will act to RELEASE the powered-up neurotransmitters.

You can also try as a neurotrans releaser & stimulant synephrine, also called "Bitter Orange Extract". A very good product called Minithin EF 25/50 contains 200mg caffeine + 25mg synephrine + rhodiola + ginseng. Synephrine is like a smoother time release version of its chemical cousin ephedrine. It can be found in my area at Speedway and other gasoline shops as well as truck stops.

Also, methylcobalamin, the active form of B12, taken sublingually in amounts of 5g (present in tabs made by enzymatic therapy and others) can supposedly INHIBIT daytime release of melatonin, so its possible this might help reduce your sleepiness.

Finally, how much co-q10 are you taking? I've read and also found myself a minimum of 400mg is needed to feel any boost in energy levels. Also, it needs to be taken with some fat for proper absorption.

Well a few possibly helpful datapoints anyway... good luck.

[niteinnyc]

You said your thyroid levels are "normal", but there are different standards. What are they?

Have you checked other hormone levels like testosterone?

If you really wanted to try the ADD meds and don't have a gp willing to prescribe, you need to go to a shrink and describe some of your ADD symptoms.

[adamh]

Piracetam is indeed a good candidate to try. It may not work for you but has worked for many others. Take a choline source with it and you will not have to worry about brain fog.

[outsider]

Try 50 mg zinc and try not to become manic with it.

Work with minerals. Don't focus on calcium, there already too much around.

Edited by outsider, 10 February 2011 - 05:11 AM.

[VampIyer]

I think you need further blood-work and analysis to approach this situation...
Did your doctor tell you that your thyroid / iron levels were "in-range," and thus normal, or did you conduct your own research and determine this to be true?

I wouldn't believe the doctor. Most doctors are idiots. They wanted to label me depressed as well - I had an autoimmune disease, downstream endocrine suppression, and labs inconsistently out of range just about everywhere... They couldn't do any trending analysis, and when I gave them my (accurate and corroborated) analysis, they disregarded it and told me my issues were "subclinical," and often associated with depression. This was coming from DOZENS of doctors over a period of a decade (I'm turning 26 at the end of this month). I just have to remember that the MCAT is not a difficult test, and that doctors, on average, don't have much an education (they go to school for many years, but much of that time is wasted learning the same damned things over and over. They don't learn at the pace/depth that scientists do).

I'd post the blood values here, and allow us to look at them - maybe someone will spot something.

TSH shouldn't be above 3.0, and ideally it shouldn't be above 2.5 as an average of multiple tests.
T3, free T3, and T4 should at least be at the middle of the range. Reverse T3 should be tested if these values are not optimal. I would also test ANA, and thyroid antibodies (Good luck getting all of these tests if your TSH is "in-range"). Fortunately, you can somewhat estimate your thyroid status using very specific body-temperature testing (at least that has been somewhat consistent in my case - I have high TSH + low T3 + high RT3, and low body-temp (compared to other people), yet nearly normal under-tongue and in-ear temperature).

Fasting Glucose? Some people get by with 70-80, but I believe these values to be slightly low. I was hypoglycemic with 40-70, however my doctors just attributed this to normal variation. Even during a glucose tolerance test, I barely broke 100. I think optimal fasting glucose is really 85-95.

Ferritin, for a physically active male, should not be below ~40, and ideally, it should be 100+ for an athlete. In order to make use of iron, Vitamin A levels should not be low either. Serum Iron is important as well.

Cortisol? I'm assuming you had your AM-cortisol tested: That shouldn't be anywhere near the low-end of the range, and this does not tell you much about your daily cortisol cycle (whether it takes a significant dip during the midday). You DID say that caffeine had no effect, however, which would lead me to believe that your cortisol and glucose are ok.

Good luck...

Things that have helped general "wakefulness" (I DO NOT think these will magically "cure" your condition):

- Alpha-GPC and/or CDP-choline + Oxiracetam or Piracetam (Oxiracetam is more effective. Smart Powders has a good deal, and it was just as good as any other I've tried). Lecithin granules are also somewhat effective, but not nearly as potent.
- avoid vinpocetine: http://www.mindandmu...showtopic=32864 + http://en.wikipedia.org/wiki/Reserpine
- Taurine (a few grams is ok) and Creatine monohydrate (micronized creapure - or maybe trinitine; I'd avoid other creatines) seem to help somewhat
- ginkgo and B6 (as p5p) may test if you'd benefit from a dopamine boost.
- Milk Thistle if you're taking many supplements, and are worried about your liver. This decreased my liver enzyme levels - "Liver Juice," from primordial performance, works great, according to my best friend, who has chronic hepatitis B (he can tell the difference).
- Whey protein Isolate: protein-factory or just Jarrow's protein is good enough. This will increase glutathione levels, and fill in some nutrional holes (esp. if you're a vegetarian)... it seems to keep me slightly more alert for workouts.

- I NEED b-vitamins + extra Biotin to get through the day (and even then just barely). It seems that infections and/or gut-dysbiosis can cause biotin deficiency, low taurine, somewhat of an intolerance to beta-alanine, and a need for more b-vitamins in general. I have ALL of those issues... I've completely discontinued Beta-Alanine because I now know that I wasn't imagining the intense "fog" it seemed to cause. - I tried a prescribed 10-day antibiotic (5-6 different types) regimen, followed by high-potency probiotics (VSL-3 + S.boulardi + inulin) - but that hasn't resolved these particular issues. I'll have to look into that again - I'm going to have to compile all of my relevant medical history and analysis, and strategically ask those here and at M&M if they can draw any conclusions.

As for sleep:

- Mg glycinate (bluebonnet brand uses albion chelate), 300-600mg elemental Mg
- Zn glycinate (Now) or Zn Orotate, 30-50mg elemental; requires Copper (bisglycinate is good) in the mornings... perhaps every other morning at a 1:10 - 1:15 ratio.
- Lithium Orotate (5-10mg elemental)
- Tryptophan (1.0 - 2.0g)+ B6 as p5p (Source Naturals (inexpensive) and Dr's Best have inclusive formulas)
- Glutamine (5g, bulk tastes fine) + possibly 2-3g of Arginine (capsule). I'd avoid AAKG, esp. at night.
- Melatonin: up to 1mg (I use 750mcg), slow-release.
- Theanine (suntheanine is good): 300mg (stop if you experience any chest pain)

And then I take some other meds and adaptogens (I cycle these) that help me sleep... Just a big damned experiment...

General:


- If you're lacking iodine, that'd be an easy fix. Eat some kelp/seaweed, take iodine, etc... some people use transdermal iodine (lugol's iodine, 5%) on the bottom of their feet. I'm not sure if this works, but my current doctor told me to do this. I doubt that I'm iodine deficient after all this time, but my thyroid hormone levels are still terrible (probably autoimmune induced euthyroid sickness syndrome - suppression).
- The methyl-B12 dosage Kilg intended was 5mg sublingual (regular oral won't absorb this much), not 5g
- Popular Adaptogens that have some effect (different extractions and strengths available): Rhodiola Rosea, Ashwagandha, schizandra, cordyceps, ginsengs, etc)... some of these will help you adapt to stress, but they are not a cure for serious and specific health issues (unless perhaps you consult an Oriental Medicine researcher (one who integrates both eastern and western medicine) - this type of person (though rare) may have some different insight).

- DIET (Vegetable Juice for minerals): If you're lacking minerals, then vegetables are a great source. I hate eating. I rarely have a decent appetite, but I know that I need to be eating frequently to get through the day (or I'll crash). Thus, to consume the majority of my vegetables, I just BLEND them into a vegetable juice (lasts 3-4 days in the fridge at 40F). Use: cucumber (high water content), celery, tomatoes, kale (other vegetables and lemon will neutralize the bitterness, so you can use a lot), spinach (a lot), parsley, other leafy greens, carrots, lemon, small amounts of ginger + garlic + raw onion (very small amount). Add sea salt (necessary for taste, IMO) and a bit of water (to desired consistency) = DONE. This is a great way to get your vegetables. I suppose I do a similar thing with my frozen berry shakes in the morning, however that one tastes like a dessert (frozen berries, coconut milk, vanilla whey protein, lecithin, coconut oil)


Other than that, I don't know how to proceed...

Edited by VampIyer, 14 February 2011 - 03:57 AM.

[Pittguy578]

I just posted a thread asking for help with this. I am having the same symptoms..I am 32 years old..I had a very high energy level until around December then things went downhill. I am healthy and take vitamins, but I can't stay awake.

[EastofEden]

I think you need further blood-work and analysis to approach this situation...
Did your doctor tell you that your thyroid / iron levels were "in-range," and thus normal, or did you conduct your own research and determine this to be true?

I wouldn't believe the doctor. Most doctors are idiots. They wanted to label me depressed as well - I had an autoimmune disease, downstream endocrine suppression, and labs inconsistently out of range just about everywhere... They couldn't do any trending analysis, and when I gave them my (accurate and corroborated) analysis, they disregarded it and told me my issues were "subclinical," and often associated with depression. This was coming from DOZENS of doctors over a period of a decade (I'm turning 26 at the end of this month). I just have to remember that the MCAT is not a difficult test, and that doctors, on average, don't have much an education (they go to school for many years, but much of that time is wasted learning the same damned things over and over. They don't learn at the pace/depth that scientists do).

I'd post the blood values here, and allow us to look at them - maybe someone will spot something.

TSH shouldn't be above 3.0, and ideally it shouldn't be above 2.5 as an average of multiple tests.
T3, free T3, and T4 should at least be at the middle of the range. Reverse T3 should be tested if these values are not optimal. I would also test ANA, and thyroid antibodies (Good luck getting all of these tests if your TSH is "in-range"). Fortunately, you can somewhat estimate your thyroid status using very specific body-temperature testing (at least that has been somewhat consistent in my case - I have high TSH + low T3 + high RT3, and low body-temp (compared to other people), yet nearly normal under-tongue and in-ear temperature).

Fasting Glucose? Some people get by with 70-80, but I believe these values to be slightly low. I was hypoglycemic with 40-70, however my doctors just attributed this to normal variation. Even during a glucose tolerance test, I barely broke 100. I think optimal fasting glucose is really 85-95.

Ferritin, for a physically active male, should not be below ~40, and ideally, it should be 100+ for an athlete. In order to make use of iron, Vitamin A levels should not be low either. Serum Iron is important as well.

Cortisol? I'm assuming you had your AM-cortisol tested: That shouldn't be anywhere near the low-end of the range, and this does not tell you much about your daily cortisol cycle (whether it takes a significant dip during the midday). You DID say that caffeine had no effect, however, which would lead me to believe that your cortisol and glucose are ok.

Good luck...

Things that have helped general "wakefulness" (I DO NOT think these will magically "cure" your condition):

- Alpha-GPC and/or CDP-choline + Oxiracetam or Piracetam (Oxiracetam is more effective. Smart Powders has a good deal, and it was just as good as any other I've tried). Lecithin granules are also somewhat effective, but not nearly as potent.
- avoid vinpocetine: http://www.mindandmu...showtopic=32864 + http://en.wikipedia.org/wiki/Reserpine
- Taurine (a few grams is ok) and Creatine monohydrate (micronized creapure - or maybe trinitine; I'd avoid other creatines) seem to help somewhat
- ginkgo and B6 (as p5p) may test if you'd benefit from a dopamine boost.
- Milk Thistle if you're taking many supplements, and are worried about your liver. This decreased my liver enzyme levels - "Liver Juice," from primordial performance, works great, according to my best friend, who has chronic hepatitis B (he can tell the difference).
- Whey protein Isolate: protein-factory or just Jarrow's protein is good enough. This will increase glutathione levels, and fill in some nutrional holes (esp. if you're a vegetarian)... it seems to keep me slightly more alert for workouts.

- I NEED b-vitamins + extra Biotin to get through the day (and even then just barely). It seems that infections and/or gut-dysbiosis can cause biotin deficiency, low taurine, somewhat of an intolerance to beta-alanine, and a need for more b-vitamins in general. I have ALL of those issues... I've completely discontinued Beta-Alanine because I now know that I wasn't imagining the intense "fog" it seemed to cause. - I tried a prescribed 10-day antibiotic (5-6 different types) regimen, followed by high-potency probiotics (VSL-3 + S.boulardi + inulin) - but that hasn't resolved these particular issues. I'll have to look into that again - I'm going to have to compile all of my relevant medical history and analysis, and strategically ask those here and at M&M if they can draw any conclusions.

As for sleep:

- Mg glycinate (bluebonnet brand uses albion chelate), 300-600mg elemental Mg
- Zn glycinate (Now) or Zn Orotate, 30-50mg elemental; requires Copper (bisglycinate is good) in the mornings... perhaps every other morning at a 1:10 - 1:15 ratio.
- Lithium Orotate (5-10mg elemental)
- Tryptophan (1.0 - 2.0g)+ B6 as p5p (Source Naturals (inexpensive) and Dr's Best have inclusive formulas)
- Glutamine (5g, bulk tastes fine) + possibly 2-3g of Arginine (capsule). I'd avoid AAKG, esp. at night.
- Melatonin: up to 1mg (I use 750mcg), slow-release.
- Theanine (suntheanine is good): 300mg (stop if you experience any chest pain)

And then I take some other meds and adaptogens (I cycle these) that help me sleep... Just a big damned experiment...

General:


- If you're lacking iodine, that'd be an easy fix. Eat some kelp/seaweed, take iodine, etc... some people use transdermal iodine (lugol's iodine, 5%) on the bottom of their feet. I'm not sure if this works, but my current doctor told me to do this. I doubt that I'm iodine deficient after all this time, but my thyroid hormone levels are still terrible (probably autoimmune induced euthyroid sickness syndrome - suppression).
- The methyl-B12 dosage Kilg intended was 5mg sublingual (regular oral won't absorb this much), not 5g
- Popular Adaptogens that have some effect (different extractions and strengths available): Rhodiola Rosea, Ashwagandha, schizandra, cordyceps, ginsengs, etc)... some of these will help you adapt to stress, but they are not a cure for serious and specific health issues (unless perhaps you consult an Oriental Medicine researcher (one who integrates both eastern and western medicine) - this type of person (though rare) may have some different insight).

- DIET (Vegetable Juice for minerals): If you're lacking minerals, then vegetables are a great source. I hate eating. I rarely have a decent appetite, but I know that I need to be eating frequently to get through the day (or I'll crash). Thus, to consume the majority of my vegetables, I just BLEND them into a vegetable juice (lasts 3-4 days in the fridge at 40F). Use: cucumber (high water content), celery, tomatoes, kale (other vegetables and lemon will neutralize the bitterness, so you can use a lot), spinach (a lot), parsley, other leafy greens, carrots, lemon, small amounts of ginger + garlic + raw onion (very small amount). Add sea salt (necessary for taste, IMO) and a bit of water (to desired consistency) = DONE. This is a great way to get your vegetables. I suppose I do a similar thing with my frozen berry shakes in the morning, however that one tastes like a dessert (frozen berries, coconut milk, vanilla whey protein, lecithin, coconut oil)


Other than that, I don't know how to proceed...

Thank you very much for all the suggestions! It will sure take some time to sort out.

Generally, I have had a hard time getting test results back from doctors - as a "healthy" female in my early twenties, I couldn't possibly need to keep track of them. I will email the doctor and ask for a copy of the basic tests they did.


The supplements I have taken so far have had no effect, but it has only been a week or so and my diet was pretty atrocious before.

I did seven intensive neurofeedback sessions to correct the amount of alpha-theta activity (which makes people drowsy) with a beta protocol and a bipolar beta protocol for a combined 30 minutes. If it works, I will begin to see some effects within a day or two. I am hopeful that this will help with my issues, as it is often prescribed for narcoleptics, epileptics, etc. And, if it works, I also have unlimited sessions as my mother is a practitioner. It needs a lot more research at this stage though, so I am still skeptical.

Hopefully, something will give. Maybe the piracetam will make enough of a difference to get me through this semester.







And as far as the MCAT goes...it is pretty damn hard to score in the 95th percentile - which is about what you would need to get into medical school in Ontario.

[VampIyer]

And now to introduce my highly skeptical side:
I'd like to note that I'm somewhat skeptical about using tryptophan. I'd offer an explanation, but it'd be ridiculously long with many studies over which to pore, and that'd require an entirely new discussion.

Fish oil has oddly inflammatory and anti-inflammatory effects. I've been taking it because I was told to, but I feel that I need to revisit the research on this to properly assess what is really happening. Yep - I've become skeptical about the purported beneficial effects of EPA and DHA. At the very least, I'd be cautious about taking high doses and/or cheaper brands that don't use anti-oxidants to prevent rancidity (though there's going to be some significant lipid peroxidation regardless).


I neglected to mention estrogen: it's a complex topic, but in short, I think many women (esp. those who suffer increased issues (even issues that seem unrelated) nearing their cycles, or peri/post-menop.) can benefit from at least small doses of liposomal progesterone and perhaps even a little oral pregnenolone. I'm not a supporter of oral conjugated estrogen therapy (for the most part) - I feel that it likely causes many problems.

Calcium D-Glucarate seems to be great for estrogen metabolism: http://www.mindandmu...showtopic=41621 - but I wish it weren't so damned expensive (Beyond a Century has the powder, but I bet it's awful. Source Naturals seems to have the best price on pills).



As far as dietary suggestions:

- I'd restrict PUFA consumption as much as possible in favor of saturated fats such as EV coconut oil (Nutiva brand is good) and animal-based foods. EV olive oil may be an exception, but the junk oils found in many bread-like products (safflower, cottonseed, soy, corn, "vegetable," etc) = highly inflammatory.
- For some reason I want to try eating collagen and/or gelatin protein and more meats containing these in my stews... I'm not going to say why, again because it'd require another entire thread, but I just wanted to throw that out there - perhaps someone else has done this.
- I can only HOPE that all of the highly varied vegetables and spices I consume are good for me... I'll continue to consume them until I find convincing evidence to the contrary.

[kilgoretrout]

- The methyl-B12 dosage Kilg intended was 5mg sublingual (regular oral won't absorb this much), not 5g

Oops, yea, thanks... I was thinking 5000mcg not mg. I recall reading somewhere that you would need that much to have a significant reduction in daytime melatonin levels. Here's a good summary I found somewhere:


Vitamin B12 is a water-soluble vitamin necessary for energy production; for nervous system function as it is needed to produce myelin, the fatty substance that forms a protective sheath around nerves; for the production of acetylcholine, a neurotransmitter that helps with memory and learning; for the synthesis of red blood cells; for producing the genetic materials, DNA and RNA. It can help depression and give you energy. Most vitamin B12 comes from animal source foods and is deficient in strict vegetarian diets.

Vitamin B12 works with folic acid to control homocysteine levels. Research shows that high levels of homocysteine may dramatically increase the risk of heart disease and stroke. However, many of us may not be absorbing the vitamin B12 as effectively from food as we could and others, such as vegetarians, may develop outright deficiencies in this important vitamin. Studies show that supplemental vitamin B12 can help us in other ways, too.

Many elderly people suffering from neurological impairment find that B12 supplementation greatly improves their cognitive function. Published studies show that vitamin B12 in supplement form is absorbed better by elderly people than vitamin B12 that is bound to food.

Shift workers, too, can benefit from sublingual methylcobalamin. It’s well established that shift workers have more trouble falling asleep and staying asleep. Poor sleep quality is probably why they have greater susceptibility to illnesses, including cancer, and have more accidents than other sectors of the population.

In a recent study, subjects taking methylcobalamin experience improved sleep quality and increased daytime alertness and concentration, and in some cases they also reported improved mood. Much of the benefit appears to be a result of methylcobalamin’s influence on melatonin secretion and resetting the biological clock. Specifically, methylcobalamin causes a significant decrease in daytime melatonin levels while increasing nighttime levels.

B12 methylcobalamin makes adrenaline from norepinephrine, and melatonin from serotonin. It is crucial for the transcription of DNA, and other entities. To convert harmful homocysteine into the beneficial antioxidant, methionine, a methyl group is required. Methylcobalamin provides it thereby protecting your cardiac system.

[EastofEden]

An update!

I had my appointment with the Sleep Specialist yesterday. Officially, he diagnosed me with idiopathic hypersomnolence (ie, excesssive sleeping of unknown origin). However, he did say that he thinks I have narcolepsy, and that I am probably in the early stages (EDS yes, hypnagogic hallucinations, yes, sleep paralysis no, cataplexy no and hopefully never). He prescribed Modafinil for me: 100 mg x 4 a day. Hopefully, this will be effective for me, and I will be sure to keep ImmInst up to date on all changes.

I did complete an intense, six week courses of neurofeedback training. At one point, I was training three times a day for a total of 1.5 hours/day. Based on my assessment, I was trained in the Beta range to increase arousal levels. The base range did not produce results, however, so the frequency range was increased from 12-15 to 20-23 Hz, which is quite high. As a result, I stopped napping during the day and was productive for the first time in weeks. However, the desire to sleep did not disappear - I merely became better at fighting it.

I have also been attempting to address my lifestyle as well. My diet was absolute garbage - often I would have nothing more than a bagel with cinnamon and sugar for each meal. Yikes! To address this, my mother and sister and I got together and made 40 pre-made meals, all of which are healthy and easy to make. I have been feeling a lot better since I have been eating regularly. Before, I was too tired to cook anything, and this system allows me to eat well with no work. Literally, put in oven/microwave, take out in an hour.

I have been taking Piracetam irregularly for a few weeks now, and no real noticeable differences. I am hopeful that this will change once the sleepiness and fatigue is dealt with.

Thank you very much to all the ImmInst members who gave advice and encouragement.

[Delta Gamma]

Sorry to hear about your possible case of narcolepsy, perhaps it would be beneficial to look into augmenting your orexin system or waiting 3-5 years for orexigenic drugs to come onto the market.

I too recently saw a sleep specialist though for the opposite reason, and was given pregabalin to see if that would help my insomnia. I've noticed that it has made my sleep much more restful (though as a hypnotic its garbage), so that I can function much better on what little sleep I can get. Perhaps you could notice a similar reaction from increased deep sleep.

There are also several journal articles out there on its use in insomnia if you want to take a look.

[EastofEden]

An Update:

*Sorry for the novel. Tl;dr below*

When I received my sleep study results, I was prescribed 400 mg of Modafinil a day to address the daytime sleepiness. The doctor wasn't very informative at the time, however. He gave me a brochure on narcolepsy, but when I spoke to my family physician recently she said that the formal diagnosis was idiopathic hypersomnia.

Having done quite a lot of research lately, I am less and less convinced that the disorder is narcolepsy. My naps are neither short nor refreshing. Narcoleptics normally sleep a reasonable number of hours at night, whereas I don't seem to be able to wake up before 12 hours. I also have never had a cataplexy attack or sleep paralysis.

Unfortunately, while "idiopathic hypersomnia with long sleep time" may be an accurate diagnosis, it is even more rare than narcolepsy and has less successful treatment.

I have been home from school for the past 2.5 months, and things have spiralled out of control. Looking back, I don't know how I made it through the exam period. I can no longer wake up unassisted before 2-3 PM. When I am woken up earlier than this (a difficult feat, according to my mother), I am incredibly irritable, even rude, and extremely confused. After I wake up, I walk around like I'm drunk for an hour or so - extremely poor coordination. I slur my words, can't call people's names to mind, forget what I am saying mid-sentence, etc.

I am starting to worry what will happen in September if nothing changes - I am going into my fourth year at university and will be completing a thesis. I had signed up to write the MCAT at the end of the summer, but I have done almost no studying over the past 2 months and I am not sure if I can put things into overdrive for the final 2.

This condition is also taxing on my family and my social life. It is incredibly isolating to not be able to make plans to go out for periods of more than an hour. And I think my parents are frustrated with what they perceive as laziness.

While I had a strong reaction to the Modafinil the first time I took it (chills, cold sweat, heart palpitations), these symptoms have now passed. I can take 200-300 mg of Modafinil and fall asleep right afterwards. Now that I have taken a break from caffeine for a month, it is now working again. Currently, it is the only thing that makes me feel awake, but it also gives me nasty headaches and I know the habituation will be a problem again.

I truly feel that the problem is not one of daytime sleepiness so much as it is a problem of non-restorative sleep. I am convinced that I spend too much time in REM and not enough time in NREM Stages 3 and 4. Any time I am woken up it is from a very vivid dream, and I dream within minutes of falling asleep. I just *feel* incredibly run down, sluggish and tired.

The supplements, the exercise (weight training 3x/week, cardio 2x/week, daily jogs, yoga), the meditation, the sleep schedules - none of it is working. I have a follow-up appointment with the sleep specialist on Wednesday, July 6. I have been doing some research on alternative therapies for hypersomnia, and have stumbled across GHB (Xyrem). It is prescribed to narcoleptics to improve sleep efficiency and increase the amount of time spent in stages 3 and 4. It functions as a REM suppressant. I am hopeful that it could be effective, since only after consuming alcohol do I wake up at a normal time (8-10 AM). For obvious reasons, I don't want to rely on getting wasted every night, and alcohol induces a REM rebound anyways. So on paper GHB looks good, but some very negative side effects have been brought to my attention. In addition to dependence/abuse and withdrawal with DTs, chronic GHB use is associated with severely decreased spatial and working memory. As a student, and hopefully a medical student soon, I can't afford to engage in any practice that will cause cognitive deficits to such an extent.

Are these fears overblown? Is there anyone with personal experience taking GHB regularly who can comment on how the drug affects cognition? Is there reason to believe that sodium oxybate functions differently in people with hypersomnias?

Is there any other drug or therapy I should be speaking with the doctor about? Ritalin/Adderall? Light box? At this point I just want to get some reprieve from the constant sleepiness and mega sleep sessions.

TL;DR ---- Still sleeping > 12 hours a night. Sleep time, desire to nap, and drowsiness have only gotten worse in the past 2.5 months. I think it is idiopathic hypersomnia with long sleep time, not narcolepsy. Supplements, exercise, NFB - you name it, I've tried it and it didn't work. Going to see sleep specialist this Wednesday. Should I ask to be prescribed GHB (Xyrem)? What are the negative side effects of this drug, specifically on cognition? Any other drugs/therapies to ask him about?

[thedevinroy]

Have you tried valerian root or phenibut? Valerian root has valeric acid, which is similar in structure to GABA, as well as valerenic acid, a GABA agonist. Phenibut is also similar in structure to GABA. Valerian root I know to work to increase depth of sleep, not sure about phenibut. The reason I mention these is because GHB is a very dangerous GABAergic drug, whereas valerian root is pretty awesome in all aspects, once you get past the stench of valeric acid.

Edited by devinthayer, 02 August 2011 - 03:54 PM.

[nupi]

GHB is dangerous how

[nupi]

Biggest danger with GHB is that its no longer legal in most jurisdictions, other than that the safety profile looks very good to me as far as those types of compounds go - definitely much better than booze if thats the only other option.

Edited by nupi, 02 August 2011 - 04:19 PM.

[thedevinroy]

GHB is dangerous how

It's a recreational drug with similar effects to alcohol and ecstasy. In the USA, it was a schedule III as the prescription drug Xyrem and schedule I drug if made in a lab or caught transporting Xyrem. Now it is a Schedule IV drug like Modafinil. Without prescription, it is as illegal as being caught with marijuana. It has moderate to serious withdrawal symptoms as well as some toxicity issues aforementioned. Thus, I would rather someone try the valerian root than have to go through the hassle with potential withdrawal, memory isues, and getting a prescription.

Edited by devinthayer, 02 August 2011 - 06:36 PM.

[nupi]

As for the legal aspect, I tried covering that, but it somehow made it to the second post (not quite sure what happened)

Trust me, I know how it feels. The main reason why it become schedule I was that whole date rape scare but to this day it remains a mystery to me how one could spike a drink with sufficiently high dose of Na-GHB and the victim would not notice a seriously weird taste in it... All in all, I would think memory issues would still be a better trade off than what he described as his current condition but I agree, if Valerian can do that job instead, then by all means go for it (it never did a thing for me, so I am skeptical on that one).

[thedevinroy]

As for the legal aspect, I tried covering that, but it somehow made it to the second post (not quite sure what happened)

Trust me, I know how it feels. The main reason why it become schedule I was that whole date rape scare but to this day it remains a mystery to me how one could spike a drink with sufficiently high dose of Na-GHB and the victim would not notice a seriously weird taste in it... All in all, I would think memory issues would still be a better trade off than what he described as his current condition but I agree, if Valerian can do that job instead, then by all means go for it (it never did a thing for me, so I am skeptical on that one).

Really? The valerian root didn't slow your thoughts? It made me stupid slow. Gotu Kola actually made me stupid slow too, but I had to take like 4 tablets (a gram). I took it before a party and people thought I was drunk. Picamilon does the same thing to me. That's so weird... I always am amazed by the difference in people's drug metabolism. I used to take it before blood pressure tests because I heard it lowered blood pressure. That's GABA for me, I guess I'm just really sensitive to its increase.

Perhaps he could just double up on some GABAergic herbs like Lemon Balm, Gotu Kola, Valerian Root, Passionflower, Kava, Noni, and Dong Quai. Obviously find the right synergy (or interaction) of agonists, receptor modulators, reuptake inhibitors, and release agents. Dong Quai, Valerian, and Noni all have GABA-A agonists from what I gather. Lemon Balm inhibits GABA-T, thereby raising GABA levels. Gotu Kola and Valerian stimulate GAD, thereby raising GABA levels. I guess chamomile and hops both strongly inhibit GAD, but chamomile has Apigenin (a monoamine transporter) while hops has 2-Methyl-2-butanol (20x stronger than ethanol).

http://www.ncbi.nlm....pubmed/18066140

Edited by devinthayer, 02 August 2011 - 09:05 PM.

[nupi]

I tried a Valerian / Hops blend for sleep. Did zilch for me (although in fairness, I only tried it two or three nights, maybe it would work better if taken continuously). As for OTC sleeping pills, only Melatonin has a definite effect on me, even the antihistamines are sort of a hit and miss (all three can help me fall asleep, but my issue is more staying asleep). Benzos always worked (but are scaring me due to dependency and addiction - Valium just feels too good if you dont have to do anything, sure it makes me dead slow, but in a pleasant way), I never tried any of the Z drugs

Edited by nupi, 03 August 2011 - 02:15 PM.

[thedevinroy]

I tried a Valerian / Hops blend for sleep. Did zilch for me (although in fairness, I only tried it two or three nights, maybe it would work better if taken continuously). As for OTC sleeping pills, only Melatonin has a definite effect on me, even the antihistamines are sort of a hit and miss (all three can help me fall asleep, but my issue is more staying asleep). Benzos always worked (but are scaring me due to dependency and addiction - Valium just feels too good if you dont have to do anything, sure it makes me dead slow, but in a pleasant way), I never tried any of the Z drugs

Valerian should work the first time. It just doesn't work for ya, but Valium does? Valium is a positive allosteric modulator of GABA-A. It works on the same system. Maybe you, in particular, have enough GABA-A activation, so the only way to increase that for you would be to take a benzo like Valium. The only thing I can think of is that you got a bad extract of Valerian root.

[nupi]

This was a pharmaceutical grade extract, I cant remember who made it but definitely fell under the group of regulated OTC drugs in Switzerland (also came with the regulated leaflet any medication needs to supply here)

[thedevinroy]

This was a pharmaceutical grade extract, I cant remember who made it but definitely fell under the group of regulated OTC drugs in Switzerland (also came with the regulated leaflet any medication needs to supply here)

Wow it must be you! You must have enough GABA to go around. Mind if I borrow some?