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Adderall XR—Friend or Foe?

Discussion in 'General Treatment' started by AngelM, Jul 25, 2018.

  1. AngelM

    AngelM Senior Member

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    I have hesitated to bring up the subject of stimulants on this forum because of my ongoing personal battle over taking them. That and the fact that most people have a total lack of understanding of these drugs, thinking only of the little pills they took in college to get them through finals week. Or the “speed” addicts sell their blood, and sometimes, their bodies to buy.

    I participated in early clinical research of Provigil for use in CFS. The drug was of little benefit to me, though I have since heard of others who have had great luck with Provigil, as well as, its newer version, Nuvigil. Ritalin was more effective in relieving my fatigue, but the “crash” as it left my system was profound, and within weeks of taking Ritalin, my blood pressure went from very low to dangerously high.

    Nine years ago, Adderall XR seemed a miracle. Within 15 minutes of taking it, I had the feeling of coming up from under water. And the XR meant no crashes. I felt like myself again. Though I had been diagnosed with ADHD early in my adulthood, I had no idea how severely my cognitive skills had been dampened by chronic fatigue. With the Adderall XR, my motivation soared, my blood pressure remained stable, and I felt human again. Though I knew that more than likely I would eventually have to deal with blood pressure issues, and recently I have, I made the decision then and there that quality of life trumped quantity of life every time.

    That was nine years ago. More recently I have become concerned about any effects long-term use of the drug might have had on my body, especially my Adrenal system.Though Adderall is not considered physically addictive, there is no real evidence for how or why it works. And as the years have gone by, and the Adderall has become less effective, it is obvious that my body has developed a tolerance. And since I don’t want to increase the dosage, my relationship with the drug has changed. So I conducted my own effectiveness study by cutting my dose by half for one week, then going for the next three weeks without using Adderall at all. I flushed an entire bottle of pills down the John, so regardless of how I might feel during that “trial” month, I wouldn’t be tempted to start taking the pill again. The result of my informal research was that without the Adderral my fatigue returned with a vengeance, and at a level that frightened me. I realized that, for reasons I don’t have the chemistry background to explore, I had to have the Adderall in order to live. If not physically addicted to Adderall, I learned that had a serious dependence on the drug. In my mind, Adderall XR became more than just a med I took daily for my CFS, it became the high octane gasoline I needed to fuel my body’s engine. Without it, I seriously felt ready for the salvage yard.

    And I hate that. Now my fear of being left without Adderall keeps me in a constant state of anxiety. And the anxiety increases exponentially with the number of pills left in any one Adderall bottle. The combination of guilt and fear controls my life. And that doesn’t seem normal—but does anything feel normal with this disease? BTW this is information I would never share outside this forum because it sounds crazy, even to me. But sometimes I look at that little orange capsule and think it is the only thing that stands between me and death. And though the logical me knows this to be a vast overstatement, the neurotic me isn’t so sure. My mind is occupied with “what if’s.” What if the insurance company suddenly makes the drug unaffordable? What if my doctor stops prescribing it? What if the pharmaceutical company quits manufacturing it? What if the bottle disappears? What if little green men with ADHD come down from Mars—and, well, you get the picture!

    I’m wondering what experience others on the forum have had with Adderrall XR or similar pharmaceutical stimulants, and if you have any advice or information that might help me come to terms with whether this drug is my friend or my foe?
     
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  2. cfsinatx

    cfsinatx Amor fati

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    Strictly because I did use Ritalin and then later Adderall, I use the non time released and take it as needed, I was able to keep on working part time for at least five more years than I would have had I not used it. My quality of life is substantially improved and without it at this point I highly question if I would be able to live independently.

    In my opinion research Etc is not going to find any cure and get it out on the market during my rest of my usable life time and so I will use what I need make remainder of my life the best it can be.

    It's been my experience that this subject brings out some pretty strong opposing viewpoints. Having a different opinion is fine but if you read their posts and all you can hear is hate, then judge for yourself whether they're trying to be helpful or not.

    My best to you all regardless of your viewpoint.
     
    Pisgah likes this.
  3. AngelM

    AngelM Senior Member

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    Thank you. It is exactly that “judgement” that keeps me quiet about the Adderall. Oddly, it is my family and not my doctors who object. Nevertheless, being accused of being a drug addict is hard. Like you, I am hyper-vigilant about taking ANY medicine, most especially the Adderall. But it is an easy target for the informed and opinionated.
     
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  4. Judee

    Judee Senior Member

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    Last year the psychologist doing my CE exam for disability asked me if any of my doctors had ever recommended Adderall for me. No one had and at the time I pushed the idea away because I didn't want to be on an ADHD drug even though I suspect I do have that.

    Even so I came home and researched it here and on the internet because at times I feel desperate to have some energy and motivation to do things (live life)!!!

    At the time, I seemed to come to the conclusion that the consensus was that for ME/CFS patients it tends to burn us out eventually and I didn't want that. I am already going downhill and don't really want to hasten that.

    Also, I mentioned it to my new PCP, who seems sympathetic to ME/CFS, and she said it wouldn't be appropriate for me.

    Plus, my dad was an alcoholic and I have tended to have what my mom calls an addictive personality. However, I've since come to the conclusion that I only really get "addicted" to the things my body is needing at that time because after a while I just automatically stop eating/taking whatever it is I'm overdoing on. (For example, one year it was candied ginger. I was buying it in bulk at 11lbs at a time. :jaw-drop: Did I have inflammation going on???)

    That being said, I am still somewhat interested in Adderall. I'm not someone that takes a lot of medicine at all but I keep coming back to this idea. I read your post twice and the second time thought, what if this was insulin and you were diabetic...or any other life dependent drug people use to stay alive? People on those meds probably feel somewhat the same as you do about the Adderall.

    I guess you have to weigh that for yourself though. Do your thoughts feel more obsessive than if this was something like insulin?

    I do like what @cfsinatx said too. If I thought it would improve my quality of life, I would probably take Adderall too...but of course I really shouldn't be offering any advice because I have not tried it myself. I guess I'm a little afraid to for the same reasons you're mentioning.
     
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  5. cfsinatx

    cfsinatx Amor fati

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    I'll share a little more of my story.

    I am a recovering alcoholic and I have been sober for 29 years. So I am very careful about what I take.

    I take only the amount my doctor has prescribed and since I use it only as needed there are many days I don't take the full dosage he has prescribed.

    Trust me, if I could find something that would give me other than a prescribed stimulant, I definitely would use it. But in my experience there's just nothing that does what is ADHD medicines do by way of reducing the brain fog and the fatigue.
     
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  6. Sushi

    Sushi Moderation Resource Albuquerque

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    Many patients have found short term benefit from ritalin or adderall but I know several who have taken them longer term in order to function in work or school who have had damage from them. It can be a hard choice.
     
  7. AngelM

    AngelM Senior Member

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    I hope my message did not read in any way that I felt I had an addiction to Adderall. Both of my parents were alcoholics, and the thought of any kind of addiction terrifies me. If I took more than recommended, or popped a pill any time I felt a little tired, or wanted to party till dawn, THAT would be a problem.

    Obviously there is the possibility that an amphetamine will exacerbate CFS. There is however no proof, one way or the other. But if that IS true, then it really does come down to a choice of how you want to live your life. I was sixty when I began taking Adderall—with the support and encouragement of my physician—and it though it took several months to get the dosage correct—Not too much. Not too little—I could tell almost immediately that the drug worked for me. Not that I was bouncing off walls. But I began working again, part-time. And more important, I could think, and create, and feel motivation and joy, and play with my grandchildren, and those were things I hadn’t been able to do for years. Actually, my family doctor, who had known me for a very long time, and seen me both before and after Adderall, told me to NEVER stop taking it. She said that if my blood pressure went up, which is a side affect, we would take care of it with medication. Luckily, only in the last six months have I needed BP medication.

    All that is to say that at the age of 60, after 30 plus years of struggling with CFS, I was in a better position to make a decision about the Adderall than I would have been at age 30. And you are right about Adderall to CFS being like insulin to a diabetic. Insulin doesn’t cure diabetes. It is only a way of managing symptoms. Adderall also works to manage symptoms for some. In my case, it sometimes manages them so well, I forget I have CFS. It doesn’t cure my fatigue, but it gives me between 8-10 hours a day during which I can live a normal, active life. After 8-10 hours, I return to being tired and fuzzy-headed and to the sofa or bed. But I have accomplished something that day and “hitting the sheets” becomes a reward, not a punishment.

    Like cfsinstx, I am unsure at this point in my life whether I could live independently without the Adderall. I don’t know that for a fact, and I see no reason to test the hypothesis any further than I have. My days of climbing Mt. Everest are over. I am happy with climbing three or four flights of stairs.

    Let me be clear that I am in no way recommending Adderall or any stimulant. That is not my job. I am not a doctor, nor do I play one on TV. But what we know about ADHD drugs, after years of using them on hyperactive children is that, unlike other medications, the efficacy is evident usually after only one dose. The same is true for CFS.
     
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  8. wherearemypillows

    wherearemypillows

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    I wrote an in-depth blog post specifically about my experience with Adderall XR, which you might be interested in reading here: http://wherearemypillows.com/?p=573

    My diagnoses are autoimmune encephalomyelitis, tickborne illness, SIBO and MCAS, but my primary symptoms are brain fog and fatigue. I didn't end up sticking with Adderall as it led to more insomnia than anything else for me. However, I'm glad to hear that it's been of help to you, despite it losing some effectiveness over the years.

    I really do empathize with you and understand that sense of anxiety/fear perpetuated by feeling "dependent" on an exogenous substance to have some relief from your symptoms. Just my two cents - maybe it would help to forget the reputation that Adderall has as a whole, and look at it as some generic drug "X" that is helping manage some of your symptoms, just as eg. people with an underactive thyroid have Synthroid to help them manage (just insert any commonplace medication that no one bats an eye at). While this is not a perfect comparison, my point is that those "what ifs" could be applied to other less infamous medications too. That's just the nature of having health issues and using drugs as a remedy. The ideal would obviously be to eradicate the root of the health issue; but failing that, I think we might as well use the tools we have at our disposal in the present, and try less to fixate on what could go wrong in the future. Who knows what the future will bring (maybe life will be cut short, maybe drug availability will remain the same, maybe there will be a medical breakthrough, maybe there will be a new drug...you get the picture).

    Anyway, I really do hope that Adderall will continue to work the way you wish it to! All the best
     
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  9. hmnr asg

    hmnr asg Senior Member

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    It seems the pill is working for you ( although you are building some tolerance) but your only issue is around your anxiety about being dependent on it?
    I mean as someone who used to take antidepressants I can tell you that missing a dose is a nightmare as is discontinuing. If a medication is working , and Adderall xr has withstood the test of time for you, I would think your anxiety about dependency is hardly any issue ! There are millions of people who would be in much bigger trouble than you if they missed their medication ( heart medication for example ). If I could take Adderall and stay at my job I would do it happily! The hell with dependency and tolerance , I will cross that bridge when I come to it !

    H
     
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  10. Judee

    Judee Senior Member

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    There is not a cure for this disease but thankfully you have found something to manage it!!!!

    I'm so glad it is working for you and I agree with @wherearemypillows, forget the reputation of Adderall as a whole and if you can, don't listen to what others are saying against it. It works for you and until they experience ME/CFS they won't have a clue what "profound" fatigue, "salvage yard" fatigue, or fatigue that returns "with a vengeance" feels like. You do and that's all that matters in this situation.
     
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  11. geraldt52

    geraldt52 Senior Member

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    Not directly an answer to the question, but I took Klonopin for a number of years, back in the 90s, trying to hang on to my ability to work...having bought in to Dr. Cheney's nonsense that it was "neuro-protective". I do believe that it probably helped me to work a year or two longer than I otherwise would have. Without question though, it also absolutely ruined my quality of life, probably for the remainder of my life. I can't tell anyone what to do with a difficult decision, but I can say that you want to be very careful with "dependency and tolerance", and the idea that you will be able to cross that bridge when you come to it...there may be no bridge left to cross.
     
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  12. Tammy

    Tammy Senior Member

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    I would say Foe. No judgement........just my personal opinion.
     
    Last edited: Jul 26, 2018
  13. hmnr asg

    hmnr asg Senior Member

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    You have a good point and i think i spoke in haste. But the OP has been on it for 10 years, so if there were any catastrophic downturns it would have happened by now. I think all she has to do is up her dose a little and get over her irrational fear of being on a medication that is clearly helping.
    By the way why not kolonopin? what happened? was it the withdrawals ? (sorry to hijack the thread). I take klonopin 0.5 mg a night to help me with this awful tired and wired feeling of CFS and with my restless leg syndrome. Without it i have no chance of falling sleep.

    H
     
    Last edited: Jul 26, 2018
  14. Runner5

    Runner5 Senior Member

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    I was like that with Ritalin but I was starting to like it too much and it builds up resistance in a hurry so I needed more if I wanted to take it daily. I definitely could see myself building a really tight addiction with it so it was time to bail. I like stimulants, love caffeine - so won't try Adderall - I know in advance I'll have trouble quitting.

    I was on Clonezepam / Klonopin for 5 years and the side effects of that drug and the withdrawal are a long story but a horror story. I don't recommend it. I had panic attacks, and anxiety and my DX was bipolar - so I had plenty of defendable reasons for being on it, but I lost those 5 years of my life. I don't recall them and the side effects are still with me 3 years later. Every single day I am dealing with fall out from that drug.
     
  15. AngelM

    AngelM Senior Member

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    Any benzodiazepam is physically addictive. Part of the addiction process with Xanax, for example, is that it affects your body very quickly, which means you “feel it” within minutes of swallowing the pill. So it is both physically and emotionally addictive. Regardless, Xanax has its place in the world of pharmaceuticals for many reasons — one being that the same fast-acting quality that may encourage addiction in some, can, in others, stop a panic attack in its tracks and before it goes “full blown.” And if you’ve ever experienced a panic attack in a public place, you will know how painful (and mortifying) it can be. Klonopin, though a cousin to Xanax, is far less less addictive because it assimilates in your body slowly, so there is no sense of immediate relief. That said, Klonopin is no less physically addictive than any other of that drug category. And it is important to be aware that, once started, you MUST slowly taper off of any potentially addictive drug. DO NOT STOP “cold turkey.”

    It is not my intention to offend anyone, but it is important to note that neither the potentially addictive quality of these drugs, nor the fact that they work well for some and not so well for others, is not reason enough to label them Bad Drugs. I use Klonopin for a a severe anxiety and panic disorder. It is always in my medicine cabinet, because taking the drug, along with behavioral therapy, vastly improves the quality of my daily life. So in spite of the drug’s addictive properties, or the fact that it does not work the same for everyone, like any legitimately prescribed drug, we need to be careful about demonizing it to others.

    Xanax and Klonopin are not street drugs—unless you buy them on the street. For those of us who benefit from taking these legally-prescribed drugs, and are both responsible and educated in their use, benzodiazepams can be a lifesaver. However, any drug can be abused. And sadly, the irresponsibility of those who abuse or misuse legally prescribed drugs casts a long shadow over those of us who benefit from them.

    I think it is important, especially on a public forum, that we are cautious about assuming that our personal experience with a drug means that the same will hold true for everyone who takes it. The demonization of any legitimate drug or drug protocol negatively affects, those who currently take the drug, as well as, anyone who might be a candidate for taking the drug in the future.

    The obvious solution is that we treat all legitimate drugs or drug protocols mentioned on this forum with respect, regardless of experience or personal bias. For every horror story about a drug, drug protocol, or supplement, there are dozens of other stories that indicate that a medication is working well for a CFS patient, and for exactly the reason it was prescribed.
     
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  16. geraldt52

    geraldt52 Senior Member

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    Drug reactions, including dependence and habituation, can occur anytime, no one is ever "safe" from the possibility. The question everyone needs to ask and answer for themselves is "what will I do, what can even be done, if this blows up on me?" Benzos do work. They are also very scary, because when/if they stop working you may be in serious trouble, and don't expect your doctor will have a good answer for you. Personally, I wouldn't rely on a benzo for anything other than short, infrequent uses...and I would never recommend falling into the trap of increasing the dosage.

    I was fine with the Klonopin for years, then the wheels came off. From there it was a horror story of withdrawal, and apparently permanent damage...in my case, to my sleep. I wasn't taking Klonopin for anxiety, or insomnia...now, many years later, I'm left with both.
     
  17. hmnr asg

    hmnr asg Senior Member

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    Im sorry @geraldt52 about what happened to you with benzos. It's funny because i used to take it for my anxiety disorder before this CFS but now that i take it regularly for sleep i cant really use it for anxiety. I mean i still take double the dose but it doesnt do that much for helping me with the anxiety. I was seriously thinking about weaning off. I just have to find a safer solution for my restless leg syndrome. My doctor mentioned Lyrica but i worry thats an equally powerful and unpredictable drug.

    Thank you for sharing your story.

    H
     
  18. geraldt52

    geraldt52 Senior Member

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    I had terrible restless leg symptoms as part of my insomnia, but I ultimately traced that back to food sensitivities...corn, in my case, being the main culprit. Avoiding corn doesn't solve my insomnia, but it's a relief to not have my legs jumping out of the bed. It might be worth you investigating something you're eating or taking being the cause of the restless legs.

    I'd agree that Lyrica seems an unlikely answer, and has its own list of issues.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @AngelM I wanted to tell you that my step-daughter and I watched a documentary on Netflix last night about Adderall called "Take your Pills". It was very interesting although has had some controversy about it. It has nothing to do with ME/CFS per se but explains the history of Adderall up to the present day and you might find it interesting.
     
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  20. panckage

    panckage Senior Member

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    I've been taking Ritalin for ME for 4(?) years now. I am confident I have undiagnosed Adhd as well which complicates things but my experience

    10mg in the morning, when my cognitive symptoms are bad really helps but not so much if I take the dose later in the day

    20mg allows me to do some light exercise. It seems to fix chronotropic intolerance. When I first started taking this was a very consistent result. Now however it doesn't work as well. It does help but the effect less consistent than before.

    I have a lot of complications that have developed so it's really hard for me to comment about why it's effect has diminished for me.

    The way I view using these stimulants is well, think of a wave with its crests and valleys. If I use on a crest it works quite well and does not seem to aggravate PEM. OTOH if I use it in a valley it will make it harder for me to rest and thus potentially have a negative effect. It is for that reason that I take the instant release as opposed to the XR. Its important to have it to increase energy but at the same time when I need to rest its important not to have it as it will interfere with the rest
     

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