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Stimulant medications

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Stimulant medications

Postby Wynton » Sun Jan 16, 2011 1:24 am

Hello,

I am just curious to hear what kind of experiences you have had with stimulant medications.

I see a sleep doctor who has successfully prescribed me with various wakefulness aids. My favorite is one called Nuvigil, which is a pill you take that gives you mental energy. Adderall is also good. I have tried Ritalin with less positive effects.

I also partake heavily of caffeine. I'm not a coffee drinker but I drink diet sodas and take caffeine pills. (These are a good buy. You can find them at CVS)

I have relied heavily on medications during important occasions over the past year. When I was at school they were vital for giving me the energy both to concentrate on my work and to socialize with friends without being limp and joyless. In fact, while on a nuvigil or adderall I'm often so productive in a few hours that I can let myself be sleepy the rest of the day - i.e. they make me a bit hypomanic.

The downside of these medications is that they aren't really healthy: clearly, the fatigue of CFS isn't so simple it can be dismissed by taking a pill. I don't feel "good" while taking them, not the way I used to feel before CFS, even if mentally I am as capable as I was then. They eliminate my appetite, which can have consequences. Usually the high I get with the meds is accompanied by a low or crash for a few hours after the effects wear off (like right as I'm typing this) where I feel rotten but can't sleep. Also I have developed some tolerances, especially to the nuvigil, which I took almost every day at school.

Plus there's the issue that these medicines are very expensive if not covered by your insurance. It was a struggle for me to get them covered, what with times being tight for insurance companies and me not having a "real" diagnosis. (My sleep doctor calls what I have "Idiopathic Hypersomnia").

It has been a tricky issue for me. My parents say, if the medicine makes me more awake then why don't I take it every day? It's difficult to explain that I feel like I'm selling my soul to the devil to get a bit of energy. But sometimes it’s worth it, even if just to remember what it feels like not to be a limp rag all the time – to be witty, to be creative, to have fun.

Once more, I’m merely interested in hearing what the diverse voices of this forum have to say on the matter.

Thanks for your input! Also, questions are welcome.
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Re: Stimulant medications

Postby lili2701 » Sun Jan 16, 2011 4:56 am

Well personnally I'd stay well away from these things-caffein, coke etc cos they will just tire your adrenals which are already exhausted probaby, like you said it's selling your soul to the devil, well I see it like this anyway, cos it's just masking the real problem, it's giving you short time energy, that's the positive side but behind all this, it's damaging your body, I repeat, in my opinion so how long before u feel even worse because these will have a bad impact and there'll be a time when it wont work anymore.

I would stop any stimulants slowly of course and replace them by natural adrenal boosters like gingseng, licorice etc, I would make exercises to help them too, like the ones from Donna eden in energy medecine, to strengthen the body, I would relax etc.

That's just my point of view!
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Re: Stimulant medications

Postby niaholt » Mon Jan 17, 2011 8:05 pm

Absolutely Ditto
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Re: Stimulant medications

Postby billoddie » Sun Jan 23, 2011 2:29 am

Get off caffeine. It is an absolute NO NO!!!
dexamphetamine has helped me. But I just lost my script, so am going to go alone on this for a bit. See what happens. But definately NO Caffeine.
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Re: Stimulant medications

Postby Wynton » Sun Jan 23, 2011 11:47 pm

Huh. It's interesting to hear you all say that. I honestly don't know what I would do without my drugs :P
Thanks for the advice. I'm seeing a CFS doctor soon and I'll ask him if I should stop caffeine and the others.
Also billoddie I have been using Adderall lately which is chemically similar to dexamhetamine. My favorite med so far!!
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Re: Stimulant medications

Postby billoddie » Mon Jan 24, 2011 6:07 am

yes, i understand what you mean by not actually feeling good. dex has helped me a LOT. As you say...very similar to Adderal. i have just had the last 2 days of the dex because I lost my script. wasn't good. the main difference was i just went round in circles. no motivation. everything too hard. no focus etc.
When i started Gupta, there was a big improvement in my fatigue, but my anxiety went nuts. I did various things to address that...and then it changed into depression. It currently "cycles" between these 3 now. Fatigue..anxiety...depression. Over and over. I am going to try low dose risperdal. mainly because it is used for OCD...which has the good old amygdala involved in it. herein i feel is my problem. even on dex...behind the scenes the silly thoughts are still there. i can just resist them more. without it, they just run over me. even the "stops" dont seem to cut it any more. i really didnt want to touch the risperdal because I have heard some bad things about it. then again, it has proved successful for treating "idiopathic" fatigue for some people. it is my view that IF (some) CFS is anchored through the action of the amygdala, then it is most certainly idiopathic in nature. even if the physical symptoms are VERY VERY REAL.
will see how it goes.
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Re: Stimulant medications

Postby Wynton » Tue Jan 25, 2011 9:48 pm

Oh man billoddie I'm very sorry to hear you're going to be cut off from your medication! Yeah I definitely feel what you are saying - no focus, no motivation, everything is just inexplicably harder. My parents see this and say I'm depressed, but I say then howcome it goes away when I take adderall, which ISN'T an antidepressant?

Well best of luck with your dealings with the medical machine :|
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Re: Stimulant medications

Postby Jj85 » Wed Feb 02, 2011 10:27 am

I've found that adderall has helped me a lot, but that it's really key to not take it every day (not good to get dependent). I think of it as sort of a reset button. Makes me really calm, confident, and focused, which in turn seems to stop the cfs-stress cycle.
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Re: Stimulant medications

Postby Mishes » Fri Feb 25, 2011 4:10 pm

Another vote for Adderall. I use the cheap generic kind (instant release) half dose early morning and half dose later morning (though sometimes I would space it over 4 doses). I sleep through the sustained release! But I'm sure it probably works better for some people than the instant kind.

I've had CFS/ME for many years (and diagnosed by a CFS specialist) and it's been severe enough that I can't hold a job and don't leave the house much. And yet I still seem to be able to tolerate the Adderall though I've heard of many who don't. My doctor has ok'd me up to 30mg 2x a day. I've been taking it about 4 years or so. It helps me lot. Well I'm obviously far from cured, still disabled from much, but it seems to have relatively helped me. It gives me enough to accomplish a couple things instead of no things a day :) I can sit and stand longer than I could before. I used to much more frequently feel like I was going faint and that awful fluey feeling while lying down is a less than it use to be. But to be honest maybe some of that is because I'm not pushing as much as I use to or the illness has evolved some. But then again when I cut back on the Adderall I go right back to that.

The one thing though...at least with the generic instant release adderall is that before I had started I didn't even know how to recognize what acid reflux/indigestion was and it didn't seem to be a problem until awhile of taking it. But when I first started having symptoms I didn't know what it was or what was causing it.

It started out feeling like my throat was super tight and I thought I was having panic attacks or something. (Which I was kinda having but only because it's pretty alarming and uncomfortable to have your esophugas all clenched up in your neck in reaction to acid reflux!) Then I got to thinking it was my thyroid and had to mess around with my medication for that...to now effect...and had all sorts of other theories and remedies to try, but when I started getting also what I felt like a bleeding ulcer I figured it was an acid problem. So then I went on different natural remedies and then prescription acid blockers but they didn't do much for me. I finally figured out it was the Adderral after some time when I realized that it was the worst in the morning right after taking it. I came off the anti-acids (they didn't help the problem anyway and they made the CFS in general worse to boot) and from then on figured out that if I drank lots of water and took the Adderall with yogurt, bananas and peanut butter and crackers and snacked on those a little later too then I was all good. (I've since altered that because I gained a lot of weight on that! But it sure did help!) Oh and if I didn't lay down totally flat in bed soon after taking them too. Just another point to consider is that citrus and anti-acids are recommended to be avoided around the time you take Adderall...citrus weakens it and anti-acids can make it more potent too suddenly

Oh and those Caffeine pills can do the same to your stomach.

Even if you don't have symptoms right now, TAKE WITH FOOD always
Seriously, I though my stomach was sturdy and I used to love super spicy foods.
Same with Ibruprofen.
Water isn't enough.
Bleeding Ulcers = trouble and misery and I think that they might remain a susceptibility to them afterward too.

Oh yeah. And tired as you are brush your teeth as often as possible.
My teeth were great.
And then suddenly I'm told I had a lot of enamel weak spots and corrosion.
I admit it. I'd often be so tired I'd go to sleep at night and not brush my teeth. I thought, who'd know, it's not like my cats would be offended! :)
The dentist asked me if I drank a lot of soda because the acids will corrode the enamel like that pretty fast if they don't regularly brush or rinse their teeth afterward.
Nope no soda.
So my guess is that acidic saliva from the acid reflux and not brushing or rinsing well regularly left it to just sit on my teeth an weaken the enamel. So please consider that too. Even swishing some water around would be better then nothing. It does seem to be preventable though, so I hope that this doesn't have to happen to others.

Hope this might be helpful.
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Re: Stimulant medications

Postby Wynton » Mon Feb 28, 2011 9:46 pm

Mishes wrote:Another vote for Adderall... It helps me lot.


Hey mishes! Great to hear that!

I think that's interesting you take the instant release kind. I take the XR but was actually thinking about asking to be switched to something more short-lasting. The XR is supposed to last for 13 hours or something but I never get more than 5 or 6 hours of use out of it, and then it is still circulating in my brain when I am trying to rest. Plus it takes a long time to kick in. I would much rather have the Adderall in my system when I need it and not in my system when I don't.

Mishes wrote:...I started getting also what I felt like a bleeding ulcer...


Yes Adderall upsets my stomach too :? My theory on the matter is that the effects of the medicine pull the blood away from the stomach (and put it in other parts of the body), reducing digestion (and causing intense discomfort if you've got stuff in there!) I don't really know any ways around this except to eat plenty before the Adderall kicks in. Also I try to eat easily-digestable things like fruits while it is affecting me... anything heavier than that I can't tolerate.
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Re: Stimulant medications

Postby Mishes » Wed Mar 02, 2011 3:31 pm

Yeah I think you are right Wynton, now that I think about it, that at least part of the reason for the stomach upsets from stimulants is because of redirected blood flow to the rest of the body. It reminds me when I'd hear that advice as a kid about not swimming right after eating or exercise in general right after eating. (which of course in public school we'd go have recess right after lunch...funny how adults give advice and then set us up to not follow it! :) ) I remember reading later that advice was given because it could disrupt the blood flow needed to properly digest the food just eaten. So your theory makes sense a long with that info.

Yeah I had those problems with the slow release too. I really don't want to encourage my default messed up circadian rhythm but encourage it to wake up in the mornings and go to sleep at night like it's supposed to! :D

I do have some insurance coverage and I can't remember for sure what the costs are without it but the generic is way cheaper for me. It does bug me that the bottle is labeled as amphetamine salts because of the stigma attached to that first word. But better packaging is certainly not worth the price increase to me. I just so wish they would do something that would keep its effectiveness but buffer it for the stomach.
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Re: Stimulant medications

Postby neil25 » Wed Mar 02, 2011 4:59 pm

Hi,

Just a note about what lili said about replacing caffine with gingseng and licoqurose. When I took gingseng it felt like my heart was beating out my chest. It was a weird sensation like a nervous type of energy. I was shaking all over from taking it and only took a small amount had to stop it in the end. Be very careful when taking it you might have a bad reaction to it like myself.

Like Wynton I do drink caffine but this is because I'm in my final year at uni and it really does help me concentrate with my work. If I wasn't at uni I wouldnt bother taking any stimulants as i know its not good for you. If people try and put themselves in my shoes they would probably do the same. I have a serious amount of work to do and deadlines to meet while having CFS.

Just wanted to ask you Lili do you work at all? or study?
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Re: Stimulant medications

Postby Mishes » Wed Mar 02, 2011 5:41 pm

Oh man, I'm feeling bad because I'm worried that I might be encouraging some people to take stimulants when it could be seriously a very bad idea for them. Particularly the ones I'm most worried could be negatively affected would be those who truly do have ME/CFS and are still in their early years of having it (under 5 years). The way that CFS is treated in the first 5 years of illness can have a huge impact on the rest of their lives I believe. If a recovery from it occurs it usually will happen in the first 5 years. And from what I've heard at least and tend to think is likely true is that the more a person can eliminate stress mentally/emotionally and physically on themselves getting a lot of rest beneficial healthcare etc...during that time the more likely they will recover. And the other way around. Stimulants aren't supportive to that. And those who haven't had it as long, are much more likely to ignore the signs of "Stop now this is going to cause harm" their bodies give them. They tend to not truly take seriously that overexertion is more than just feeling bad as a result for the next couple of days but that it could be seriously harmful beyond that. And it does seem to be generally a more crucial time I think too for damage to occur I think. I know thats a scary to hear and not very encouraging especially when going to college and working is very important for most people and might be made impossible or extremely difficult to do without stimulants. I do understand that. It's a big decision to make. And one that you should be seriously considered.
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Re: Stimulant medications

Postby Mishes » Wed Mar 02, 2011 6:26 pm

Mishes wrote: Stimulants aren't supportive to that.
Well not generally anyway. My opinion/theory (if you want to know) is that stimulants(including caffeine) aren't as bad as some seem to think, on their own anyway, for most people in commonly used amounts. Some will have immediate bad effects before they even start doing anything else after taking them and thats obviously a very different case. The main problem I think is what people particularly sensitive individuals (those with chronic illnesses for example) who have to be very careful of overextending often do while they are on stimulants. There might be some bad effects though from long term usage even if you were careful but I don't know.
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Re: Stimulant medications

Postby Wynton » Fri Mar 04, 2011 9:26 pm

neil25 wrote:When I took gingseng it felt like my heart was beating out my chest... Be very careful when taking it you might have a bad reaction to it like myself.


While I have never taken Ginseng, I have experienced extreme reactions to new stimulants. Every one that I listed above - and on top of that I could add 5 hour energy - had probably 200% of the normal effect on the first day. Usually I actually find this pleasant - it's nice to have so much energy for a change! - but next day when I take the exact same medicine it is only half as effective, and from there the efficacy only diminishes - although at a much slower pace than that experienced between Day 1 and Day 2.
All I mean by this is I expect that if you tried ginseng again, you would find it to have a much milder effect on your system.

Mishes wrote:They are much more likely to ignore the signs of "Stop now this is going to cause harm" their bodies give them...
And it does seem to be generally a more crucial time I think too for damage to occur


For me at least, I think resting too much is worse than resting too little. Working too hard carries the risk of overtaxing my system and needing to rest for a few days. At least, that's the worst that usually happens to me. (I can't exactly speak to long-term trends of overworking because they aren't clear to me.) On the other hand, being to gentle carries the risk of social isolation and giving up hope of getting better. Therefore I would much rather tread the fine line of my abilities than allow myself to be sucked down too much by my fatigue. And stimulants help me do this.
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