Hey all! Hope everyone had a good weekend :)

I just have too many questions about this stuff. I could probably single-handedly increase the thread count x 2, but I'll try to control myself!

This is a much simpler question than my previous ones:

How did you know when it was working for you? Or, how did you know you were taking "enough," not too little and not too much?

My doctor keeps increasing my dosage and telling me it's important to make sure we find "my" correct dose, and I understand it's quite different for everyone and really has nothing to do with height, weight or anything like that. (Adderall is the only medication I am on. I drink crystal light daily, at least a liter, but not within an hour of taking the Adderall. I didn't do this for the first two weeks, but then my doctor told me it's only a minimal interaction and if I'm at my correct dose it shouldn't really make a difference. In the beginning I drank caffeine, but gave it up after the first week.)

I've also been told that it's the way the brain metabolizes the drug and not the digestive system that affects how we react to it, so my naturally faster metabolism is probably not the reason I feel like I only get about 3 hours out of each dose of IR.

But I'm a poet, not a scientist or a doctor, so I'm reading all I can, and hoping my inability to retain information will get better with treatment so I can actually remember what I'm learning. :p

I keep hearing about initial "superhuman" energy and focus effects that get toned down or taper off, and about it helping with motivation, stuff like that.

I also read about people who say that after taking a dose they can feel it "kick in." I have never felt this, and I would like to ask those of you with experience if that should happen if I'm taking the right dose? Is that how I'll know it's working as well as it can for me?

To date I've really had NO side effects. I happened to discover that my heart rate has increased, but I only know this because I started taking my pulse, not because I could feel an increase in heart rate. Other than that, of the long list of possible side effects I haven't really experienced any. Oh, except for initially I did get a litlte bit of a bad taste in my mouth. But I get that from most prescription meds. My doctor's respose to this was, "Well, that's great, but it could also mean you're not getting a good effect from the current dosage." She seems sure that if I find the right dose I'll get an energy effect.

The reason I was prescribed this was it was supposed to help both with the ADD and the fatigue and brain fog caused by the fibro/cfs. I wonder if it is starting to work for one thing (the ADD and maybe the brain fog), but not the other. Does anyone take Adderall and only get pretty good results with focus, but no increase in energy? I know some of you have said this particular stimulate actually had a sedative effect for you, but when you took it, did you notice any positive effect on your focus, thinking, etc?

Knowing that side effects differ for all and that my fibro and cfs may be a factor here because there's not a lot known about how or if Adderall helps with those (I'll post a ? on the co-existing board about that), I wonder how I can tell if this drug will be good for me or if I should move on.

So far I've had an increase in...I guess I'll call it clarity, meaning I no longer interrupt myself in the middle of every thought and move on to the next one without ever really finishing a thought. Well, that still happens, but not as much.

I find myself better able to focus on just one task for maybe an hour or so after my first AM dose. I would love to have that all day.

I still find my vocabulary is locked behind a wall in my brain. I know the words are in there somewhere, but I can't get to them. I go through periods where this is really bad, and then sometimes it gets better, but even on a good day I still have a hard time "finding the words."

At 10 mg a day I was finding my heavy eyelids creeping shut many times during the day. (Chronic fatigue syndrome, no fun). At 20 mg a day I was still bone tired. 45 mg a day and I don't sit down and fall asleep against my will during the day anymore, but I'm still as drained ever.

Now, of course I don't want to rely on a pill for any of this, but I've lived a third of my life already with a very busy brain that can't retain information very well, and the past four years I've had the fibro symptoms, so if upping my dose can get me to feeling some semblance of normal, I'll take it. Because it doesn't seem I'm going to get there naturally any time soon.

I'm going to ask my doctor about the heart rate thing, because I don't feel comfortable going any higher with the dosage until I know that's nothing to worry about.

But if I find that my heart is perfectly fine, I would consider continuing with small increases if it means I'll get to a point where I'm finding greater benefits.

Okay, my simpler question is annoyingly long. Sorry. I have to reign that in, which will come with time, I suppose. Wordiness is my downfall.

Seriously, here's the short and sweet: if I'm not getting bad side effects but only minimal good effects, then the chances of a higher dose being beneficial might be good, do you think?

I see my doctor this week. I was going to ask him about adding Provigil to the mix for the fatigue thing, but maybe I should give a higher dose of the Adderall a go first.

I'm a writer, too. I found that the higher the dose, the better the result. Currently I'm on 90mg a day, and can't write a word without it.

So glad to hear that! I haven't written any poetry in a few months, at least not since I was diagnosed.

I guess if my doc says my higher heart rate is not a problem, I'll try going up a bit higher this week.

At this point the benefits of being able to write outweigh the negatives like blood pressure and heart rate for me. I know this is an extremely unhealthy attitude and I don't recommend it to anyone.

Spoken like a true writer! I was actually a bit nervous to try the med, because I read some "patient reviews" and one said something like "I lost all creativity when I was on it." The prospect of that freaked me out, but everyone's got a different experience and I decided it was worth seeing if I could benefit.

When last we met, my doc said try 35 to 45 mg for a while (up from 20mg). I'm comfortable adding 5mg every few days, so I did that, but I only got up to 40mg before I read something about heart rate and checked mine and found it had gone up. I got nervous so I've stayed put at 40 mg for now.

But now I've gotten some insight to convince me that increased heart rate alone (without pain, breathing trouble or any other bad side effects and no history of heart probs) is not abnormal, so as long as he assures me it's cool, maybe going up to 50 or 60 mg won't be a bad idea.

I can write volumes on it. I can't say enough about it. I hope you find the right dose and release its good effects.

Hmmm. You're a special case (i.e. Fibrosis/CFS) for sure.

I'll explain my experiences with Adderall and my knowledge of the drug (which I'll try to explain in simple terms; forgive me if it sounds 'dumbed down'). Keep in mind I'm not a doctor, so take my advice with a grain of salt.

Adderall is a special blend of amphetemines, which have been in use (for various purposes - everything from weight loss to ADHD to just as a general 'stimulant' pill - the US Air Force gives amphetemines (read: Dexedrine) to it's pilots as a 'go pill') for over 70 years.

They work (to the best of our current knowledge) by affecting chemical imbalances in the brain; those chemicals are Dopamine (affects mood, learning, attention, and other things), Serotonin (affects mood and other things), and Norepinephrine (affects attention and focus). Anti-depressants also affect these chemical imbalances, but in a different way. However, you will find that anti-depressants and ADHD medications have quite a lot in common (i.e. some ADHD drugs like Strattera and Wellbutrin are used to treat depression as well as ADHD, and stimulants can also be used to treat depression in some cases).

Generally people with Chronic Fatigue Syndrome (CFS) take anti-depressants or stimulants to treat their symptoms; it's not currently understood exactly well-understood yet how these drugs work for people with CFS, but they do know that they work. Strattera is a big thing right now for CFS treatment because it affects the Autonomic nervous system (and it also treats ADHD!).

You mentioned people that are 'sedated' by stimulants like Adderall. What Adderall does for me is that - it 'suspends' all of the ADHD symptoms in my brain; kinda like pressing the pause button. While the 'pause button' is pressed (i.e. while Adderall is active in my system) I am able to do my daily work and I feel 'calm/relaxed' and sometimes euphoric. I interpret this as 'sedated' but for other people YMMV.

Another thing to consider - (for a normal person, may not apply to you since you have CFS and Fibrosis) Adderall can be used to keep you awake. Some people though don't get enough sleep at night and end up 'relying' on Adderall to get them through the day. Then when they 'crash' their bodies are EXTREMELY tired and they feel lethargic and drained. It is very important to make sure you get good sleep at night.

Also, when taking high doses you have to be mindful that stimulants can wreck havoc on your heart, lungs, kidneys, etc. if they are abused. You can also develop an addiction to them if you're not careful.

FInally, for you specifically - if the Adderall isn't 'powerful' enough (since it IS having to fight against your body's CFS *and* Fibrosis) you might need a more powerful stimulant in the future - something like methamphetemine (read: Desoxyn).

ETA: The main thing to keep in mind with stimulants is this: When you're taking them be SURE to be mindful of a couple of things (which can affect how the drugs make you feel):

1 - Keep yourself hydrated. Due to the nature of the drug, it can be easy to become dehydrated.
2 - EAT! These stimulants will kill your appetite and you won't be hungry. But your body NEEDS energy. Make sure you don't skip meals!
3 - Just because it doesn't feel like it did the first time you took it doesn't necessarily mean it has quit working or that you need a higher dose. These drugs are kinda like perfume - you put it on and smell it at first, but you get used to it and you become numb to the smell. It doesn't mean the perfume has stopped working, only that you've gotten used to it being there. These drugs are the same way - just because you don't 'feel it' doesn't mean it's not working.
4 - Be mindful of other side effects - if your heart starts beating crazy (or you feel like you're tweaking) then stop taking the drugs and seek medical advice.
5 - Certain things WILL interact with the drugs. Generally you will get the most intense effects of the drug if you take it on an empty stomach. Also, avoid taking it with acidic things (like orange juice) and don't take your vitamins when you take your pill; take you multivitamin later in the day. I generally will take my pill on an empty stomach or with a light breakfast (i.e. a granola bar and a glass of water). This works the best for me, but again - YMMV.

If you have any specific questions, feel free to ask.

-Ben

Wow, Ben, awesome, thank you for the thorough response! ETA: The main thing to keep in mind with stimulants is this: When you're taking them be SURE to be mindful of a couple of things (which can affect how the drugs make you feel):

1 - Keep yourself hydrated. Due to the nature of the drug, it can be easy to become dehydrated.
2 - EAT! These stimulants will kill your appetite and you won't be hungry. But your body NEEDS energy. Make sure you don't skip meals!
3 - Just because it doesn't feel like it did the first time you took it doesn't necessarily mean it has quit working or that you need a higher dose. These drugs are kinda like perfume - you put it on and smell it at first, but you get used to it and you become numb to the smell. It doesn't mean the perfume has stopped working, only that you've gotten used to it being there. These drugs are the same way - just because you don't 'feel it' doesn't mean it's not working.
4 - Be mindful of other side effects - if your heart starts beating crazy (or you feel like you're tweaking) then stop taking the drugs and seek medical advice.
5 - Certain things WILL interact with the drugs. Generally you will get the most intense effects of the drug if you take it on an empty stomach. Also, avoid taking it with acidic things (like orange juice) and don't take your vitamins when you take your pill; take you multivitamin later in the day. I generally will take my pill on an empty stomach or with a light breakfast (i.e. a granola bar and a glass of water). This works the best for me, but again - YMMV
Yeah, I learned early on that this drug seems to have a diuretic effect of sorts. I lost 9 pounds in the first few weeks, and I think it's a lot of water weight.

I was nervous because I know in the past I once lost too much weight all at once (long story short, I was young, first love, bad breakup, couldn't eat) but then when I could eat again, boy, I gained it all back and then some! So in an effort to keep from losing too much too fast, I continued to eat as I always have, which is six mini meals a day with a good mix of protein, carbs, and good fats. And since I gave up caffeine I really only drink water and crystal light (but not with the meds or within an hour of taking them). Like you I tend to take it on an empty stomach or just with some toast or something. And I take my multi and omega 3, b6, selenium and calcium at bedtime to make sure nothing interacts.

Come to think of it, this medication has actually forced me to have a little added routine and structure, which might be a good thing. :p

Anyway, my vigilant meal structures don't seem to matter, because I don't think I'm going to have to worry about weight loss on this drug the way others do! I can say that my appetite has really decreased, and I am making sure to eat often, but I'm definitely taking in a lot less in terms of fat and calories. But since the initial nine pounds, I haven't lost any more, and in fact I gained one back. Oh well.

One thing you said about it not feeling the way it did the first time--that's the thing. I've never really felt anything on this. I didn't have any initial euphoria or that "superhuman" thing I've read about. I don't feel it "kick in," and I don't feel it any drop off that I can attribute to the drug wearing off. (Hard to say with the constant fatigue from cfs/fibro). Aside from the appetite decrease, I haven't experienced any side effects.

So my doctor says when I get to "my" correct dose I'll not only experience the benefits, but most likely will experience some side effects too. But I find that theory a little hard to understand, because I'm already taking in about 40 mg a day of a stimulant, so wouldn't I figured I'd have at least some side effects from it.

Unless it's just that I tolerate it well, but I'm not taking enough of it yet to get the best benefits. That's my doc's theory, anyway.

I get some increase in focus for a short period after I take it, so I know the med is in there and affecting something. And it has raised my heart rate, I am sure of that, but still within a normal rate. It's not racing or palpitating. I don't sweat. I don't get dizzy or have any reactions that make me nervous to keep taking it. So far, anyway, and I hope it stays that way.

I guess an increase is the only way to really find out what the deal is. You know, I think I'm spending so much time trying to get this right because it's at least an answer. With fibro and cfs there really are no answers, and so to avoid that frustration of the unanswerable, I'm getting fixated on what I'm taking that people do know some things about.

Thanks for sharing your knowledge. It's enormously helpful!

You're welcome; anything I can do to help. I was in your shoes once (that is, I was clueless about the medications for this disorder) and I learned (and am still learning) from asking lots of questions, so it only feels right to pass my knowledge on to others who ask.

Not everybody feels like a 'superhuman'. I normally only feel the effects if I've taken a drug holiday and am taking a pill for the first time in a week or so -or- if I feel bad from lack of sleep (i.e. only got 6 hours of sleep or less and am nodding off in class) I can take an Adderall and feel it 'prop me up' and I'll become instantly alert (as if I were going on a full night's sleep). But the rational part of my brain knows it's just a 'trick' and that later in the day I'll feel like **** when the drug wears off.

The main thing I notice just on a daily basis is I feel that sense of 'calmness' which some people interpret as feeling sedated. It's really a strange feeling - just feeling extremely at peace with myself and generally content - no stresses or anything like that. But that's just me - again, YMMV.

[QUOTE=ben72227]You're welcome; anything I can do to help. I was in your shoes once (that is, I was clueless about the medications for this disorder) and I learned (and am still learning) from asking lots of questions, so it only feels right to pass my knowledge on to others who ask. [QUOTE]

Clueless about medications? :o hahahahaha...How about clueless about this disorder, period? I wasn't even sure what to call it. I used disorder because you did, but I'm still learning what it is, and still unclear about what things about me are really ADD and what things are due to other things.

So thanks again. Oh, and I bravely ventured into 45 mg territory today. 20 mg on waking, 15 at noon, 10 at 4pm. I don't know, maybe it's me, but I don't notice much difference. Had a good span of at least 3 hours after my first dose where I was pretty focused, but not so much this afternoon (though still slightly better than what I'm usually like) and I'm not falling asleep in my chair, but I also don't have the energy to get up from my chair. But it was worth trying the 5 mg increase, I suppose. Luckily I see my doctor on Friday!