Adderall for Energy Boost in ME/CFS: January 15, 2010

[myronhoffman]

I am a 79 year old retired professor of engineering. I came down with CFS about 5 years ago and have tried many supplements to try to get an energy boost. None of the supplements including D-Ribose helped me as far as I can tell.

Then one of my doctors suggested that I try the ADD (Attention Deficit Disorder) medicine Ritalin, because it seems to give adults more energy. I gradually worked up to 2 x 20 mg generic Riitalin ER (methylphenidate Extended Release) taken first thing in the morning. This way it has worn off by bedtime, and I have been able to sleep well using only 1 mg Melatonin pills once or twice a night.

The generic ritalin worked wonderfully for a while, but then I developed a tolerance to it after about 16 months. [I read on the web that many adults with ADD (Attention Deficit Disorder) also develop this tolerance and the effectiveness decreased significantly.]

I then tried the next strongest ADD medicine, Adderall. I gradually worked up to an effective dose of 2 x 20mg Adderall XR (eXtended Release) taken first thing in the morning. This has worked very well for me for about 5 1/2 months. In order to avoid developing a tolerance to the Adderall, I only take 1 x 20mg Adderall XR on days where I do not have any urgent or important things to do. (It's surprising how many urgent or important things one has to do even at my advanced age.)

The energy boost I get from the full dose of 2 x 20mg Adderall XR gets me up to about 80% of my former energy (factoring in the fact that I am almost 80 years old). Even at this high dose, I take one or two rests a day of 1/2 to 1 hour long. I do not sleep during these rests; I just relax and let my muscles and brain unwind.

The Adderall is NOT a cure for ME/CFS, but it does help me to get my important chores done and live a reasonably full life.

Because the Adderall is more powerful than the Ritalin, it is extremely important to take the Adderall first thing in the morning.
I now have to take 2 or 3 of the 1 mg Melatonin pills to get a reasonably good night's sleep. (At my doctor's suggestion, I try to avoid sleeping pills like Ambien and Lunesta even though these worked better than the Melatonin for me.)

Have any of you tried these ADD medicines? Have you had any success?

Myron A. Hoffman - January 15, 2010

 

[Esther12]

Hi there.

I've not heard of this. Do you know if there are any studies into the use of ADD medications for CFS? Google's turned up some stuff I'm just reading now.

I'd be instinctively fearful (some people can find me a bit too focused anyway) but I'm pleased to hear they're working for you. Have you noticed any big behavioral changes other than reduced fatigue?

 

[Samuel]

What I think they do is make your body think that you have more energy than you do. So you overdo it without realizing it.

Just my opinion. Can't point you to any research studies.

 

[Marylib]

For Myron,

Stimulants like ritalin and addreal are used by several ME/CFS docs. Some people benefit, some don't. You have to find what works for you. Sounds like you have a good relationship with your doc?

 

[Denn]

Adderall works great for me! I have been taking the 30mg XR once a day. Unfortunately, my insurance does not cover it (I guess they figure I am not a kid with ADD and so don't really need it ) and it is very expensive. However, more generic versions will probably be released in the near future (12-18 mos) and the price will come down. In the interim, I am going to try a double dose of the regular generic adderall. However, it works well enough for me that, as I have to work, I will probably pony up the $$$ for the extended release (XR) version if the regular generic is ineffective. Have only been on it for two months so I cannot say what the long term holds. I have gone from sleeping absolutely whenever I did not have to be functional to being awake, as the good professor suggests, about 80 per cent of the time. However, the fatigue still lingers in the background and cognitive disfunction problems are still more significant than I expected they would be.

Caveat: Absolutely, you may be using energy you do not have. The question is: does that really matter if you have no functional existence anyway. Some people may not tolerate amphetamines. Fortunately, owing to a wayward youth, I am pretty good at handling most pharmaceuticals. For some people, these meds could be very, very dangerous. Adderall, by itself, will not mute all of your symptoms.

Be well,
Denn

 

[Esther12]

I am going to try a double dose of...

Well I've just been reading about a high risk of addiction, so take care people.

 

[glenp]

Dextroamphetamine

I find dextroamphetamine helpful with me. I think it may be more helpful if you have specific blood pressure problems.

http://www3.interscience.wiley.com/journal/119978126/abstract?CRETRY=1&SRETRY=0

 

[juniemarie]

Denn
I take the generic and its only $10 a month with my insurance and thats for 60. I take 2 30's a day. I have been on it for 4 yrs. It is not addictive, as a matter of fact whenever I do not have anything I have to get done I will take breaks. I have no side effects when I take a break from it, no craving it. I actually quite enjoy my breaks cause it means I can go into complete rest mode.
It is fake energy, but it has kept me up and about for 4 yrs. Unfortunately I have gotten worse lately, and not even adderll can over ride CFS on a bad day.

 

[Samuel]

I'll clarify. I think that stimulants over time probably make people get worse long term.

 

[kim500]

Do you know if there are any studies into the use of ADD medications for CFS?

Yes, there was an important study a couple of years ago, I'll post the citation later tonight.

 

[Lily]

Initially I tried Provigil, which is often used for CFS and is the drug of choice for MS fatigue. Second choice was Adderall, which seemed to agree with me much better. I took Adderall XL 15mg for 4 years and it certainly helped. I've always been somewhat of a liightweight with medication dosages and could only tolerate 15mg even though the doc expected that I'd probably end up around 30mg-40mg/day. At the time all I could manage to do was work though. Anything else was out of the question. I was struggling terribly just to be able to keep working. I would not have cared how addicting it was. So what if I had to take it for the rest of my life as long as it worked? That was my attitude anyway. As I continued to decline, we tried increasing the dose, but I could not tolerate it. We did add an additional 5mg around 2pm in the afternoon and that was OK for a while, but my energy continued to decline.

I did try taking the generic version because of the expense, but it is not the extended release and that was a awfful..... felt very hyped and my heart rate stayed about 120-140. Only did that for 2 days.

I was grateful to continue to be able to work as long as I did, but have often thought it would probably have been wiser to have just stopped. Seems obvious my body was telling me that. However, I NEEDED to make a living:Retro smile:

I stopped taking it without any problems - just titrated the dose down 5mg at at time over about a week. For a while, I took small doses off and on when I needed a little boost to get something accomplished. I don't do that anymore though because it's sort of like stepping on the gas peddle and revving the engine, but the car just won't budge

Frankly, if you're someone who is trying to keep working because you don't think you have a choice, I think it's worth a try. It helped with the brain fog and with concentration too. And I'm not talking a huge difference here. A few of the things I tried helped a little, and a few things helping a little kept me going a bit longer. I think for most of us though, once we get to a certain stage it doesn't matter, 'cause nothing helps or more likely you cannot tolerate stimulants of any kind.:worried:

 

[Denn]

Denn
I take the generic and its only $10 a month with my insurance and thats for 60. I take 2 30's a day. I have been on it for 4 yrs. It is not addictive, as a matter of fact whenever I do not have anything I have to get done I will take breaks. I have no side effects when I take a break from it, no craving it. I actually quite enjoy my breaks cause it means I can go into complete rest mode.
It is fake energy, but it has kept me up and about for 4 yrs. Unfortunately I have gotten worse lately, and not even adderll can over ride CFS on a bad day.

Thanks very much, Juniemarie, these are very helpful observations. Thus far, my response corresponds exactly to yours and will, hopefully, continue to do so. I think you make a good point about the breaks, too.

Hope you feel better very soon,
Denn

 

[Sushi]

I took a very low dose of adderall because it is also a vasoconstrictor and it helped a lot with OI. I took it for about a year, never developed tolerance to it and had no problem stopping when I didn't need it any longer. My dysautonomia doc prescribed it.

Sushi

 

[Andrew]

I have a question of those people with Adderall experience. My fear is that it will increase my energy and I'll burn myself out on this and end up in a big crash. Can you please comment on this type of thing. Also, did any of you Adderall takers have flu-like symptoms before you started, and how did Adderall affect this.

 

[juniemarie]

I would like to see that article. If a drug is addictive, there is no way I would be able to just stop on the days I want to rest without side effects. Thats what addictive is, you can not stop because you crave it. I dont crave it, no matter how many days I stop for. I just laze about and read and relax.

 

[Lily]

I have a question of those people with Adderall experience. My fear is that it will increase my energy and I'll burn myself out on this and end up in a big crash. Can you please comment on this type of thing. Also, did any of you Adderall takers have flu-like symptoms before you started, and how did Adderall affect this.

Oh Andrew, I hope I didn't mislead anyone. When I said what I did about trying it, I sure didn't mean anyone who is already homebound/bedbound. I don't think that would be wise at all - NOT AT ALL! In fact I think it would be extremely unwise

 

[juniemarie]

Andrew
I am trying to think about the best way to answer your question. You know, the word, pacing comes to mind. Just like with our desire to keep pushing to do what we want, or what we need to get done, or what we used to do. Cause work and "have to" are also a drug. We have to learn strict guidelines for monitoring and pacing and keeping an eye out for going over the limits. I guess I would see the taking of adderall kind of in the same way. Always keeping in mind that the energy we feel is fake, that the adderall is not dangerous, the things we want to do are not dangerous, what is dangerous is our inability to monitor and keep in mind what our bodies need. I try to be aware of that when I take adderall. I still limit my activities, after an activity, I still come home and lie down and rest or sleep(yes its strange but I can nap on adderall) I dont just say well I have lots of energy cause I took adderall so I'm going to bop till I drop. So its kind of business as usual. I tell you my CFS always has the last word, not the adderall! If I take it because I know I want to met my daughter for lunch and window shopping, I dont say ok now lets go to play tennis. I go home, no matter what, even if I still feel good. And the reason for that is my body does not care if I am taking adderall when the CFS thing wants to start up and make me spiral down. I have learned my lesson on that. Its a different level of pushing than if I had not taken the adderall. You just have to respect it, know your limits, and know the difference between fake and real energy.
If I am in bed with a CFS spell. With brain fog, and exhaustion that wont let me get up to do anything. I respect that. I dont take adderall in those situations. It would not work anyway. I would still not be able to get up. I use it for a little boost on days I am feeling good. Never ever on days I am down with CFS.

 

[juniemarie]

Also I would like to add. Everyone has different reactions to various medications. Keep that in mind, in case you are super sensitive to drugs that speed you up. I have a slow heart rate, slow metabolism, low body temp, low blood pressure and I do ok with them. Everything about me is slooooow. Except my brain, its always racing around. A drug that gets me a little closer towards normal, someone else may be bouncing off the walls, and not being able to sleep for days. I can drink a cup of coffee before bed and go to sleep. Its not much of a stimulant for me. If youhave any heart issues you of course should discuss that with a dr.

 

[Lily]

I would like to see that article. If a drug is addictive, there is no way I would be able to just stop on the days I want to rest without side effects. Thats what addictive is, you can not stop because you crave it. I dont crave it, no matter how many days I stop for. I just laze about and read and relax.

Adderall is amphetamine and dextroamphetamine, substances which certainly can be addictive. Some people have more of a withdrawal effect than others. It didn't bother me to go on and off it either, but that's not the case for some folks. It's safer if you are going to stop it altogether to gradually decrease the dose to avoid withdrawal symptoms or possibly even seizures. Some people feel a period of slight depression when they stop, others more serious depression. Withdrawal can be experienced in different ways, not necessarily a craving at all. It depends on the substance. Most all of the various medications used for ADD are some type of amphetamine and are addictive and simply need to be withdrawn somewhat slowly. The serious problems arise with these drugs when people use them recreationally and need increasingly higher doses to achieve the desired effect. If not used in that way, there's usually nothing to be concerned about.

 

[Sushi]

About crashing on adderall--I agree with Juniemarie--I never took enough to feel "energized," just enough to keep me on my feet--about 10 mg. Never to the buzz level. And I too was careful to respect what I knew were my limits.

Sushi