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Using Stimulants in ME/CFS? The Adderall Debate!

Discussion in 'General Treatment' started by AngelM, Nov 6, 2018.

  1. AngelM

    AngelM Senior Member

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    Regarding Adderalll, I was fascinated by the strong opinions on both sides of the issue of taking Adderall for ME/CFS. No one seems to be neutral on the subject. I’ve been taking Adderall XR for some time, and am well aware of its cons, as well as its pros. The drug was originally prescribed more than thirty years years ago for Adult ADD. However, at the time I did not feel comfortable taking a stimulant. It wasn't until years later, when I decided to give the drug a try, that I realized that it was very effective in treating my ME/CFS. I’ve now taken the same dose of Adderall XR for nearly a decade.

    Because of strong feelings on both sides of the Adderall debate, there are a couple of points I’d like to clarify. First, though Adderall is “habit forming,” it does not fall under the category of “addictive.” In other words, you can discontinue Adderall, even after years of use, without experiencing the dangerous physical withdrawal symptoms associated with opioids, alcohol, nicotine, or the “Zepam” drugs (Xanax, Klonopin, etc.). However, the fact that Adderall is not addictive, does not mean going “cold turkey” is not without its problems. If you’ve ever stopped sugar or caffeine intake for an extended period of time, you know how problematic even a “habit-forming” substance can be. It could take weeks before your body and brain fully return to normal.

    Secondly, I want to make clear that I am not recommending any drug or treatment, including Adderall, to forum members. As has been expressed numerous times here, what we do to manage or cope with our ME/CFS, is our personal decision—and that decision should be respected. Though. as ME/CFS victims, we share many of the same symptoms, we are also as different as we are the same. Adderall is NOT a “magic bullet.” NEVER start any CFS treatment, drug, or supplement until you have fully educated yourself on its efficacy, and understand all its possible side-effects.

    That said, when the CDC states that long-term use of stimulants in ME/CFS might worsen or accelerate the “push-crash” cycle, they could very well be right. I don’t know. And there is no long term research to back up what is essentially the CDC’s opinion. But right or wrong, the suggestions of the CDC and other private and government health organizations are worthy of consideration before you make a treatment decision impact your long-term health.

    Now for my Mea Culpa. After a decade, and after considerable thought, I’ve decided I want to discontinue Adderall XR. I have no reason to believe, and certainly recent tests do not inficate, that the Adderall has caused any carfiovascular damage. However, the one thing that I knew was a side-effect of taking a stimulant long term—elevated blood pressure—HAS happened. My blood pressure is now elevated to borderline high. And that is worrisome. As far as the CDC’s prediction, though my CFS symptoms have been more severe of late, I can’t say that the “crashes” are worse than severe “crashes” i’ve experienced in the past.

    The reason I’ve made the discussion to stop the Adderall is that I have a severe anxiety disorder that has risen to a new level in the past six to nine months, and every aspect of my life has been negatively affected. I don’t blame Adderall for the sudden worsening of something I have battled with since childhood, but it happens yo be the one element, among many, I can easily control. So it makes perfect sense to begin dealing with my anxiety by first eliminating the Adderall as a contributing factor.

    At least over the short haul, my doctor recommends that I replace the Adderall with another drug or protocol that will help with the fatigue. One of the PF forum members mentioned that Vyvanse is a safe drug alternative to Adderall. However, when I researched Vyvanse online, I was left with the impression that, although Vyvanse acts on the central nervous system differently tha Addersll, it is still an amphetamine that can negatively affect your cardiovascular system. Maybe someone here can explain if Vyvanse is or is not a viable substitute for Adderall XR.

    I am also looking for suggestions about Provigil and Nuvigil. I participated in the first national blind study of Provigil back in the late Nineties, and I found during the study (I did get the drug, not the placebo) that Provigil was only marginally effective in relieving my fatigue. Since then, Nuvigil has come on the market. And that may be an improvement. However, I noticed that both are listed, along with Vyvanse, as stimulant drugs with cardiovascular side- effects. Perhaps someone on the forum with more knowledge than I about using stimulants in the treatment of CFS could share. It would be greatly appreciated.
     
    Last edited: Nov 6, 2018
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  2. used_to_race

    used_to_race

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    Fatigue isn't really one of my main symptoms. I have very mild fatigue most of the time but sleep a normal amount. However, I found that taking Adderall XR tends to worsen my immunological symptoms, such as sore throat, headaches, and GI symptoms. For this reason, I can't take it consistently. But if I'm in a relatively calm period and need to be high-functioning for a few days, I can take it and it works very well. Before I got sick I took it a lot. I'm not sure if it has long-term detrimental effects, but I am pretty confident that occasional use is totally fine.
     
  3. Learner1

    Learner1 Forum Support Assistant

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    Adderall can deplete calcium, magnesium, potassium, vitamins C, B1 and B6, and zinc, which could have an effect on your mood and other functions of your body. It might be wise to do nutrient testing and replenish what's lacking before opting for another nutrient depleting drug.
     
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  4. jesse's mom

    jesse's mom Senior Member

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    hi @AngelM , I have two children who have ADHD, and ADD. The way it was explained to me is that the brains in people who truly have ADD are different than a "normal" brain. These stimulants help with blood flow therefore lighting up the frontal lobe and causing core communication in the different areas in the brain.

    I have on occasion taken adderall, and concerta. I do not have ADD and it makes me feel horrible! I do not have the same results as my kids. It seems to calm them down and focus them. They so not get anxiety from these drugs. I try to keep them on the lowest doses possible.

    For my child still at home, I give her supplements to avoid the stripping effect.

    With the Blood pressure, have you had recent blood work? I needed Vit D to help stabilize mine.
     
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  5. AngelM

    AngelM Senior Member

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    Thank you for this information. I had not heard this before. However, for myself, it hasn’t ever been a problem. Though, I almost wish I could say it was. Adding a vitamin or mineral would be an easy solution. I’ve had nutrient testing done several times and by a variety of labs, as well as blood tests targeted to the vitamins and minerals you mention—but results have never shown a depletion. However, I do agree that it is a good idea to monitor these levels. It also helps to educate yourself on how important these vitamins and minerals are on your overall health. I must add that I found nutrient testing to be very expensive and it was not covered by my insurance. The out-of-pocket cost can be prohibitive.
     
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  6. AngelM

    AngelM Senior Member

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    I did not realize that Vitamin D helped with blood pressure. I have had a serious depletion of Vitamin D for a long time, but have pretty much ignored it. However, I’ve recently decided to be more responsible and take my Vit D supplements daily, as suggested. Glad to know that Vit D can help stabilize my blood pressure. My BP has hovered at borderline for about a year, so I finally decided to bite the bullet and take the BP meds— though I’d definitely prefer other options if they will do the trick. My doctor also suggested Magnesium Citrate (think I have that right) for blood pressure. I believe she said to start with one tablet a day and slowly increase the dosage until you experience the first signs of diarrhea—which you will! Then titrate back a bit and you will have arrived at the right dose! Doubt you’ll would ever find those directions on a bottle of over-the-counter magnesium!
     
    Last edited: Nov 7, 2018
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  7. jesse's mom

    jesse's mom Senior Member

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    @AngelM , there is an excellent thread on Vit D on this board. I haven't figured out how to link it, but maybe @pamojja can help. She has helped me alot!
     
  8. pamojja

    pamojja Senior Member

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    Maybe this one? https://forums.phoenixrising.me/ind...-those-who-have-been-taking-vitamin-d3.61591/

    Just copy the address of the browser url of an open thread, and paste it into a new post. Usually it's automatically turned into an active url. Otherwise there are formatting options about the edit-text field, where one marks the text and after clicking on the chain-symbol of the formatting-buttons, adds the url there.
     
    Last edited: Nov 7, 2018
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  9. jesse's mom

    jesse's mom Senior Member

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    ok, Thanks @pamojja , that is the thread I was talking about!
     
  10. Rlman

    Rlman Senior Member

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    @AngelM how has your sleep been on Adderall?
     
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  11. jesse's mom

    jesse's mom Senior Member

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    My daughter can sleep on Adderall xr , but I am interested in if @AngelM can.
     
  12. Rlman

    Rlman Senior Member

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    @jesse's mom so your daughter can sleep the normal amount of time (7-8 hrs i think is normal) and has deep sleep and restful sleep while on Adderall xr?
     
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  13. Diwi9

    Diwi9 Administrator

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    My two cents on my experience with stimulants in case it may help someone else:

    - Provigil was way too strong, even a split dose, leading to insomnia. This med may have contributed into my falling into a relapse and worsened state that occurred in 2016.
    - Nuvigil caused a serious, albeit short-lived, depressive state.
    - Adderall really helps with focus and productivity, but lasts about four hours and "coming down" is very hard on my POTS (especially tachycardia) and Reynaud symptoms...forcing me back to bed, even at a low dose.
    - Methylphenidate works to give a slight boost without side effects. I only take 5mg (extremely low dose) on occasions when I'm feeling better and need extra focus (like doing reading/writing).

    I avoid any sort of extended release so I can back off the stimulant effect if it turns out to be a "bad day"...but this is just a personal preference. To give some perspective, I can have a difficult time even with just a cup of coffee.
     
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  14. kangaSue

    kangaSue Senior Member

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  15. jesse's mom

    jesse's mom Senior Member

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    Yes, she takes it in the morning at 7am and sleeps from 11pm to 6:45 am. She does really well with it. She finds tasks easier, and does not get frustrated with herself in math. She still does art and theatre, so her creativity is intact as well. She is on 25 MG. She has melatonin, but never rarely uses it, unless she has to get up before 5AM
     
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  16. AngelM

    AngelM Senior Member

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    Up until recently, I’ve not had any problem sleeping with Adderall XR. Only in the past six months have I begun to have serious problems with my sleep—waking four or five times per night—heart pounding, feeling weak all over. Takes me nearly an hour to calm down enough to go back to sleep. I attribute these disturbed sleep episodes as panic attacks triggered by my thoughts or dreams. Since I wake very abruptly, I can usually remember what I was dreaming—and can connect my physical symptoms directly to a traumatic event I can associate with the dream. My neurologist believes my current symptoms are caused by sleep deprivation and has scheduled a sleep study to rule out sleep apnea. Personally, I doubt sleep apnea is the problem, but wonder about panic attacks.
     
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  17. AngelM

    AngelM Senior Member

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    Thanks so much for this information. I understand that Vitamin D deficiency epidemic in this country because every product we put on our skin has an SPF. Don’t know if that is true.
     
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  18. AngelM

    AngelM Senior Member

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    I think this research, though limited, is very interesting. Is there somewhere I can see this explained in layman’s language? Is research pointing to amphetamines being beneficial in OI and POTS?
     
  19. jesse's mom

    jesse's mom Senior Member

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    @AngelM , When my Blood pressure was high and fluctuation I was having more insomnia problems.
    Dealing with my past emotional trauma was a great thing for me to do. When I first became so sick in 2011 I went to one on one therapy for three years.

    I had a sleep study done in the past couple of years. I do not have sleep apnea, but I did have something "remarkable" show up. It was the fact that my brain never shut down at all during sleep. I was in a light sleep and they were able to prove my Restless Leg Syndrome; I used to rub a hole in my sheets where my left leg rubbed the bed all night!

    I have found that many people on this board rather use natural remedies for symptoms we have. I think that is great if it works. I am supplementing more the longer I study and ask questions. I still must use several prescription medications for coexisting conditions.

    The burden of choice is in the end on the individual, I am all about the best quality of life possible at this point.

    All the best to you, and please keep posting!
     
  20. jesse's mom

    jesse's mom Senior Member

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    @AngelM , I think my Vit D deficiency is really about how little light I can tolerate and the fact that I am mostly housebound and bedridden.
     

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