Forum Replies Created
June 4, 2012 at 10:01 am in reply to: Self-Diagnosis #2336
Maybe these will help
So I raised the head of my bed by about a foot. After about 15 mins I felt like I was panicking. Like I needed to lay down, but I was. Anyone else experience that? Very strange feeling.June 2, 2012 at 6:22 pm in reply to: Self-Diagnosis #2319
Ok, to finally answer your question about curcumin.
I lost my notes on this. Nothing in life is ever as simple as I’d like it to be. So, from memory then.
Curcumin inhibits NF-kB transcription. I do believe it was higher up the chain than that, but can’t remember where. NF-kB basically controls inflammation, producing cytokines, etc. This gives it tremendous potential in affecting everything from cancer to arthritis to mast cells to Alzheimer’s, as well as pain and healing. Really, almost everything we hear about all the time but don’t have treatments for. It even affects the duration of a hangover.
Note that I said “affects”. In most studies it is found to reduce chemo-resistance of cancer cells or even eliminate the cancer itself, for instance, but in other studies it has been shown to do the opposite – it causes cancer, increases liver damage caused by alcohol, etc. This appears to be dose-dependent. In the case of alcohol, a “low” dose protects the liver from ethanol-induced damage, while a dose 50-100x higher increases the damage done. Such is the case with most drugs (don’t take the whole bottle of aspirin), but this increases difficulty for now as we don’t know what a “low” or “high” dose is for humans.
Curcumin is also complicated by the fact that humans metabolize it extremely effectively, making it pretty much useless for us. We would have to take about 12g of 95% extract, or 24 capsules, for a minimal effect. We also can’t absorb it all at once in this state. If we ate the plant it is extracted from, 250g or more is needed. Therefore, when you hear people advocating the addition of curry powder to your meals to treat every illness known to mankind, you will know that adding a little curry powder to your cooking is certainly not going to help unless the whole meal is curry powder. In addition, there is some question as to whether curcumin degrades after being heated to normal cooking temperatures.
On the other hand, curcumin extract with oil/fats and/or phosphatidylcholine is much better for humans. Different combinations produce different plasma and tissue concentrations, affecting how much crosses the blood-brain barrier. This would be a great time to have those notes I lost.
I did save some research related to two specific curcumin formulations, Meriva and Longvida.
20% curcumin extract (75% curcumin, 15% demethoxycurcumin, 10% disdemethoxycurcumin)
40% microcrystalline cellulose
has had excellent results in a human osteoarthritis trial at 1g/day for 8 months.
Longvida has some research on the acute concentration reached in humans, which I calculated to 0.04668uM per 500mg capsule. The concentration also increases over time, and if I remember correctly, can become around twice the acute concentration after chronic daily use. This knowledge will help in finding a proper dose range for specific purposes, such as effects on enzymes – “Inhibits SULT > CYP2C19 > CYP2B6 > UGT > CYP2C9 > CYP3A activities with IC50 values ranging from 0.99 ± 0.04 to 25.3 ± 1.3 μM.”
As for side-effects, they can be as numerous as the positive effects. For instance, inhibition of NF-kB results in inhibition of COX. Most of us know COX-1 and COX-2 very well; COX-1 is inhibited by asprin, causing blood thinning effects. COX-2 is inhibited by other NSAIDs such as ibuprofen (and also aspirin). Whether you consider any effects to be positive or negative will depend on your situation.
Is curcumin better than any other NF-kB inhibitors? It doesn’t require a prescription, and that’s enough for me.June 2, 2012 at 5:35 pm in reply to: Questions about Marfan's #2318
Our healthcare is great for critical care and acute illness. If you get stabbed a few times, they’ll patch you right up and send you on your way. Dx/Rx for chronic illness, however, is sorely lacking. Maybe within our lifetime? =DJune 2, 2012 at 2:39 pm in reply to: Self-Diagnosis #2316
Digestion/food/diet has always been strange. For instance, I could drink a litre of milk one day and be fine, but on another day, even a couple sips and I may as well be lactose intolerant. Completely unpredictable so far. The same goes for drugs, where pseudoephedrine seems to do nothing most of the time, but rarely it can increase my heart rate to the point where I have symptoms of a heart attack and nearly pass out. Other drugs work 99% of the time, but sometimes do absolutely nothing no matter the dose. I generally avoid the foods/drugs known to sometimes cause unpleasant experiences for me.
Before getting out of bed, BP is borderline at 115/80. But it’s actually higher than my average, 105/65. Pulse is ~10 lower than mid day. I’ll play around with it more once I find something to raise the angle of the bed to compare results.
I didn’t take my health seriously when I was diagnosed with EDS ~10 yrs ago. Like a normal teenager, I thought nothing would happen until I was old (30!). I’m paying for that now, and have discovered that 23 is old, not 30 =DJune 2, 2012 at 2:32 pm in reply to: Questions about Marfan's #2315
It’s more likely to be “just” appearance, but always be wary. The conditions are quite related in presentation, but “the fragile tissues and skin and unstable joints found in EDS are due to faulty collagen, while the features of Marfan syndrome are due to faulty fibrillin-1 and an over-expression of TGFβ.” I’m borderline with my clinical presentation. In the end, aortic and eye problems decide whether it’s Marfan or EDS.
“Many individuals have skeletal features that are similar to Marfan syndrome, but do they not have the aortic and eye problems that are characteristic of Marfan syndrome. This is called Marfan Habitus (or Marfanoid or Marfan-like Habitus). Often the skeletal features are inherited in families and can result from mutations in the same gene that causes Marfan syndrome.”
“It is recommended that individuals with major skeletal manifestations of Marfan syndrome have a thorough evaluation for the condition, including echocardiogram and ophthalmologic examination. Continued cardiac follow-up with echocardiograms every few years is recommended.”June 2, 2012 at 2:07 am in reply to: Self-Diagnosis #2310
Tolerance seems to vary between individuals. Modafinil induces its own metabolism over time; it causes the body to become more efficient at getting rid of it.
“After 3 months of daily use, all effects of Waklert have faded slightly. This includes negative effects, as well as the duration of effect, which may support the theory of long-term tolerance being caused by changes to liver enzyme concentrations affecting the metabolism of Modafinil. Most importantly, sustained daytime wakefulness remains, but may best be described as sustained not being asleep. It continues to be effective enough for my uses, but I do not believe it would be effective against sleep deprivation at this point. Following abstinence, the effect of reduced sleep need as well as a reduced daytime wakefulness continues for an additional day. This effect is drastically reduced on the second day without the drug, and eliminated on the third. Abstinence for a full week from last dose, followed by a re-dose, provides limited, increasing effect until the third day of re-dosing. This suggests a CMax is reached within 2-3 days, confirmed in literature, as well as eliminated in the same time frame following chronic use. The effects at this point appear to be the same as those experienced a week prior, suggesting that tolerance is influenced by a medium- or long-term process.”
It is also known to cause ulcers on mucous membranes, which I have unfortunately experienced:
“Waklert produced spots in mouth after the first week of 150mg daily. These appeared to be small, flat, white discolourations, 3-4 in total, spread out within 1″ on the right inner cheek. With no change in dosing, these were observed regularly over the course of a couple days and appeared to disappear. Two mouth ulcers formed in the following days, also on the right inner cheek. After 3 days, these had grown to approximately 1cm each, and a new ulcer formed on the right inner lip. About two days later, or 2 weeks from first dose, the lip-ulcer had grown and merged with one cheek-ulcer to create a 1″ square-shaped ulcer, while the other ulcer did not change in size. Over the course of the next 4 days, one ulcer was discovered at the back of the throat (too high to cause pain during eating) as well as one in the left nostril, which is when the medication was stopped. Specific dates were not recorded after this point. Ulcers did not appear to change in size, however the large 1″ ulcer appeared to be causing significant damage to the tissue as it was forming a noticeable indentation. High-dose curcumin (SLP – oil, phosphatidylcholine, curcumin extract) at approximately 3g/day was taken orally, as well as applied directly to the 1″ ulcer. Assuming linear gains and correct research data written in my notes, this would approach 0.2uM concentration in humans. All ulcers soon retreated, showing only a slight indentation caused by the lone cheek ulcer and a pit accented by discoloured black ridges left by the large ulcer. Curcumin supplementation was dropped to 1g/day, and Waklert restarted as the cheek healed. Concomitant use of both drugs from that point onwards has not produced ulcers. Discontinuation of curcumin for one month ended with the formation of 6 new mouth ulcers, each approximately 1cm in diameter.”
I must stress that Modafinil is explicitly contraindicated for almost everything talked about on this forum. I exacerbates many symptoms we already have. It increases histamine release, and it causes autoimmune reactions/inflammation. In the worst case scenario (very rare) it can cause life-threatening drug rashes. Of course no drug is perfect. One could draw a comparison to antidepressants with possible side-effects of increasing suicidal thoughts. If you are considering taking this drug, it is important that you research its effects and side-effects, and most importantly, learn to recognize a problem before it develops and stop taking it if necessary.
L-Deprenyl (Selegiline) is an irreversible MAO-B inhibitor; it boosts dopamine. It was slightly effective at keeping me awake for maybe a week or two at a time. It’s not for EDS/CFS/etc, it’s for “Parkinson’s disease, depression and senile dementia”. Of course that didn’t stop me from using it until I got Modafinil. Do not take them together, ever. Honestly best to avoid this one altogether unless you’re out of options.
Haven’t noticed anything from DHEA 25mg or 50mg. Just using that to increase my very low DHEAS levels.
Curcumin, I’m using to prevent/reduce mouth ulcers caused by Modafinil. It does have an incredible number of other uses, most related to reducing inflammation. It’s worth mentioning, but I’m much too tired to do it any justice right now.
I hope that helps you!June 2, 2012 at 2:04 am in reply to: Self-Diagnosis #2309
I use it for enhanced productivity, simply due to being awake for a normal amount of time. Without Modafinil I would wake up after 12-16+ hours of sleep and make it no longer than 8 hours before sleeping again. If I actually did something during that time such as wash clothes, I could barely get everything into the washer without needing to lie down. A great inconvenience for sure, but not the source of my misery. Every time I did lie down, I would fall asleep for hours. After every shower I would sleep on the bathroom floor for about 2 hours. When cleaning a room the priority would always be something I could lie down on, because I would be there in about 10 minutes, and fast asleep. This shortens each day considerably. Even in the best case scenario of having no “chores” to do, a shower and dinner cuts off another 4 hours, leaving me with just 4 hours before I had to sleep again.
Try to imagine being awake for only 4 hours every day. What could you do in that time? If something involves standing for more than 10 minutes, subtract 2 hours. If it involves moderate exercise, that’s all you’re doing today.
I could function like that on a basic level. I tried to limit myself to one room to reduce cleaning needs. With careful planning I spaced out my use of cookware and dishes to reduce the time lost. The rest of the time was spent getting groceries and then recovering from that. But life is never that simple.
People expect you to be as you appear. Normal. Someone in his early twenties is supposed to go out and party all the time, spend time with friends and family, and still be ready to do something at a moment’s notice. All while working full-time or going to school. They look at you and see that you don’t look sick. Maybe a little tired, but not sick. Your family mistakes your exhaustion for boredom, happily suggesting to do something exciting and then feeling distanced and unloved when you turn them down. Your friends think at best you’re boring, at worst you think you’re better than them. So it comes to a simple decision. One that can result in significant regret, hardship and stress. Do you push everyone around you away so that you can keep functioning the way you have been, or do you try to hold those relationships together at your own expense? I chose the latter. I did just enough to keep contact. I went to special events and celebrated birthdays, had weekly lunch with my grandparents, left the instant messenger on all day and kept the phone next to me to stay in contact with everyone else. And every time I did something, it set me back. Everything in my life suffered to keep these relationships afloat. I couldn’t think clearly enough to remember what I did 5 minutes prior. Priorities shifted considerably and I only did what I deemed to be absolutely necessary. I didn’t clean for months at a time, and I didn’t shower or change clothes unless I had to go out. Often I wouldn’t eat because I didn’t have time nor energy to make anything, and when I did, the dishes were never clean. Sanitation held a lower priority than sustenance. I was exhausted nearly every waking moment of my life. But I looked fine.
It was obvious this was a problem to me. So what did the many doctors have to say? Lead a less stressful life. Eat Better. Nothing’s wrong. You have an anxiety disorder. Take a B-Complex. You’re already taking a B-Complex? Take it for another month. You’re depressed. And finally, perhaps ironically the most helpful answer of all, “I don’t know.”
At the next doctor, I convinced him to give me a 2-week supply of Modafinil. They allowed to me function, but that wasn’t long enough to get a true feel for the drug. He refused providing any more after that, telling me I’m depressed and I just need to accept it. Those words were nothing new by this point.
After a few months and hundreds of dollars in shipments lost to customs, I finally amassed enough to take the drug regularly. So what did it do? Without mincing words, it saved my life. It kept me awake. I was still completely exhausted all the time. I still had to lie down after doing anything. But instead of immediately falling asleep, I stayed awake. Within 10 minutes I could get up again and carry on. I could decide my next task while lying down, and then do it. I still remember the first day I was able to do 2 loads of laundry on the same day. That may seem like nothing, but it meant the difference between eating and not eating the next day. I had about 8 hours each day, but that no longer meant 4 tasks. I could have a shower, lay down for 10 minutes, and then carry on. 20 minutes, instead of 2 hours. I didn’t let that time go to waste, and immediately started improving my situation. It felt like it took a month to finish cleaning, but it was actually a week. Within about 2 weeks from starting the drug, my main block of sleep slowly began to decrease from ~14 hours. I regularly checked the date on my computer, often shocked that it was still the same day and yet I had completed a week’s worth of housework. Every time, it was a great boost to my willpower. I felt incredible. Every day I was catching up. Every day I had less stress.
Eventually, not only had I caught up, I actually had free time. I began to improve my life. I started exercising, and even took up Yoga for something different; something I once thought I would never have time to do. When I had to lay down, I used the time to research as much as I could about sleep. For so long my doctors focused on the sleep component of my situation, and then so did I. The efficacy of these pills seemed to confirm a sleep disorder. It took quite some time for me to finally step back, look at my life, and once again see fatigue as the cause of the sleep. On to studying fatigue-related illnesses.
Modafinil is not a miracle drug. All it does is provide you with more time in a day. The miracle is in what you choose to do with that time.June 2, 2012 at 2:02 am in reply to: Self-Diagnosis #2308
Pheo or Carcinoid?
visual chart in RAINBOW colors
You may be shocked how a doctor who doesn’t seem to listen may quickly take heed when they SEE the data. Good luck!
Thanks for the tips and links, I’ll look into that! A rainbow chart may actually work =D
As for Hydroxyzine, I can’t tolerate any of the first-generation antihistamines. They make me incredibly drowsy and even more dysfunctional than usual, which is really saying something. Although I’d consider trying it combined with Modafinil for academic purposes, as the worst that should happen is I’d waste a day.
Finally, someone with EDS who takes modafinil! I read it’s used off-label for CFS so I was thinking of trying to get it from my doctor. what does it do for you? And are the other drugs worth looking into as well?
In short, it keeps me awake. Which keeps me alive and moving forward in life.
For the more detail-friendly among us, I’ll copy-paste my notes below. Looks like it’ll be a few posts in length.
I’ve been on Armodafinil regularly for a few months now. It took a while to get used to it. There is some discrepancy concerning sources and possible counterfeiting, which is to be expected when buying drugs “on the street”.
I have taken both legitimate Canadian Modafinil (Alertec, 100mg) obtained via prescription, and Indian Ar/Modafinil (Sun Pharma Modalert 100mg, Waklert150) obtained via other means. Modalert results were inconclusive as they produced no change. In comparison to Alertec brand, Waklert feels “dirty”, contaminated, or otherwise sub-par. It reliably produces more side-effects and less positive effects, limiting its potential for recreational use. It should be noted that Waklert150 is Armodafinil, not Modafinil.
Waklert (Effective dose 150mg, Taken in morning, Continued for 4 Months+)
+Sustained wakefulness, ~12 hours with little difficulty
+Slightly increased mental stamina
+Reduced overall sleep time needed.
~Ability to sleep 2 hours after dose: Requires calmer surroundings than usual.
-Slight headache, pain type. (rather than pressure)
-Sensation of fever, but low measured body temperature.
-Dry mouth, sore throat
-Loss of appetite.
Dosing prior to sleep: 75mg, 150mg
-No perceived effect on sleep.
Faded side-effects after 3 months:
~Changes in taste. Not for better or worse, but a different taste altogether.
-Inability to focus on tasks – Forgetting what the task was, not racing thoughts.
Faded side-effects after 2 weeks:
-Sensitivity to light, sound.
Faded side-effects after 1 week:
Faded side-effects after 2 days:
–Intermittent double-vision / visual distortion. Text on computer screen sometimes warps / displays in a different location than where it actually is for a second or two. Reminded of Contact (1997 movie) wormhole scene. -> http://www.youtube.com/watch?v=Z8axMaBL4uo @ 2:16, 2:22, 2:30, etc.
Modafinil is a racemic drug. To simplify, 50% of Modafinil is active, and the rest is (in this case) inactive. Armodafinil is enantiopure; it is made of only the active part of Modafinil. Therefore a dose of 150mg Armodafinil ~= 300mg Modafinil. To be more accurate, studies show Armodafinil leads to a 1.8x higher concentration than Modafinil in humans.June 1, 2012 at 4:21 pm in reply to: Self-Diagnosis #2286
They tell you depression does that!? doctors are so useless just like teachers.
They do their jobs. They just don’t do them as well as we expect them to.
what medication have you tried so far?
L-Deprenyl, Modafinil, Curcumin, 7-Keto DHEA. That’s all I can think of off the top of my head (I’m currently taking the latter three).
maybe try diam-ox and see if you feel better?
Sadly Diamox is one of those “prescription medications not sold on the street”. It’s easy to get recreational drugs, difficult to get Modafinil, and downright impossible to get anything useful for treatment.
Perhaps other similar drugs would be effective(1). I’ll have to see if any are OTC / non-prescription, or otherwise not seized by customs. If that fails, pomegranate extracts are “highly active carbonic anhydrase inhibitors”, but I’m not looking forward to days of researching to determine if they are even remotely effective as such in humans. Not that it isn’t interesting, but I’m getting bored with my lack of progress on my condition. That’s why I posted here. It’s more efficient than going off on research tangents to solve relatively small, but time-consuming problems.
1) “Carbonic anhydrase inhibitors, loop diuretic agents, osmotic agents and fibrinolytic therapy are discussed. The most suitable drug seems to be acetazolamide, alone or in combination with furosemide. At present, osmotic agents are no longer used in the treatment of hydrocephalus.”May 30, 2012 at 3:54 pm in reply to: Two weird eye things #2251
The original post is a year old now, but this may help new visitors with similar problems. I have 20/20 vision and despite having some sort of translucent floater in my right eye, there’s “nothing wrong” on clinical exam.
1) I have found that doing ‘eye exercises’ for a few days, specifically looking at and focusing on objects in the far edges of the visual field, reduces this problem for me. I generally focus on something, then slowly turn my head right (for instance) until experiencing some nystagmus. I then try to focus without my eyes shaking, which works for a short time (~20s) until my eyes are exhausted, then repeat the process in the other directions (left, up, down, etc). This causes significant exhaustion, nausia, and an overall uncomfortable feeling, so I would only do this at night before going to sleep. Over-doing it will make for a bad morning, too. It seems to increase the visual area available before nystagmus starts, and after doing this for about 3 days my eyes stop shaking for no reason during the day. I have to repeat the process once every few months when the random shaking returns and gets in the way of my life. This may or may not work for you as we all have different problems. As for cause, Dr. Diana would have to comment on that!
2) See “visual snow”. I have also had this for as long as I can remember, and have never noticed seeing anything in perfect clarity in my life. In extremely dark or bright environments, these “spots” take on a primarily red colour, whereas the rest of the time one could say they’re black or otherwise “not coloured”.