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    Aderall, so conflicted

    Hi all,

    I'm 61 yo woman living with Secondary Progressive MS. I've had MS since the beginning of time, and it started before they had DMD's, so I'm a mess.

    My fatigue has graduated to that level known as "crippling fatigue." I don't need to describe it, I'm sure. I am still walking, with braces on both legs, as my feet no longer evert. I use a walker, walls, husband's jeans waistband, what ever it takes to walk. The neuro has said that people like me, who are still walking in spite of a large disease load, are the patients who have off-the-charts fatigue. So, hurrah for still walking.

    Recently my neuro suggested Aderall, which I had tried and hated many years ago. But, since my fatigue is so much worse now, we thought it may be worth a try. So, I took my 10 mg tablet at 9 on the first day. And, it did give me more focus (I sewed for three hours!). It did not make me feel energetic, it just made me feel like I could do things in spite of the fatigue. And, so I did. And, I paid for that with a great increase in what is already "crippling" pain. And, I could not sleep well that night, with a racing feeling lingering from the Aderall. The dosage did give me side effects of racing heart, anxiety, dry mouth, the usual.

    Not one to give up, I got up on day #2 and took my little pill at 8 a.m. And, I had the same results, I sewed for 4 hours! along with some other things. And, I ended up in great pain. And, again I did not sleep well at all.

    This morning I got up and I felt like I HAD to take that pill. Now there's a feeling I do not want. So, I took 1/2 (5 mgs) and it provided little benefit. So, here I am, fogged out and trashed at 1 p.m., as usual. Soon I will do my usual lay down on the couch which pretty much marks the end of my productivity for the day aside from knitting in the evening.

    I am conflicted because I know that Aderall is Meth and Meth is not a drug to sneeze at. Addiction is rampant with this med, (and I am a 25 year recovered alcoholic) as are long-term side effects and changes in one's brain. Weaning off of it can be a beast. However, I sewed for 4 hours! And that was such a good feeling, to be in my sewing room, doing what I do. However, I do not want to have that feeling at the expense of the health of my brain and personality. If I do stay on it and it continues to interrupt my sleep (in spite of a bomb of pills I take to sleep) then it is game over anyhow.

    I am seriously considering stopping this drug all together before I get in too deep. It's so tough, though, as without this pill, I've got nothing to work with. I do all I can in a day, and just drag on. My morning activities of living like showering, dressing, making the bed, having breakfast, leave me drained to start off the day. And it just goes downhill from there. You'd think with this level of fatigue I'd be willing to take snake oil if it would help.

    And, so I turn to all of you to hear from those who have experience with Aderall. BTW, I have tried all of the different supplements and other natural remedies recommended by people here, and all those were was a terrible waste of money. So, I'm not looking for a different solution. I'm looking for advice on this topic, Aderall. (I have in the past also tried Concerta and Ritalin, so those are crossed off the list).

    Thank you!!!!!

    #2
    Originally posted by HereIam View Post
    I am conflicted because I know that Aderall is Meth and Meth is not a drug to sneeze at.
    I think what you meant to say is that you're conflicted because Adderall is an amphetamine.

    Adderal is not "meth." Adderall is dextroamphetamine. "Meth" is short for methamphetamine which, while still an amphetamine, has a different chemical structure and is a different drug. We don't want to mislead people into thinking that Adderall is "meth" because they "read it on the Internet."

    Originally posted by HereIam View Post
    BTW, I have tried all of the different supplements and other natural remedies recommended by people here, and all those were was a terrible waste of money.
    You may have tried things recommended by people here, but have you considered that there are other drugs and supplements available that haven't been recommended by people here and that there may be other possibilities that you haven't heard of or tried?

    Originally posted by HereIam View Post
    Recently my neuro suggested Aderall, which I had tried and hated many years ago. But, since my fatigue is so much worse now, we thought it may be worth a try.
    You also tried Concerta and Ritalin. Is there a reason why you aren't willing to try them again since your fatigue is so much worse now? Is there a particular reason why you picked only one of the three you tried before and decided that that one is your last hope?

    Does your neuro have no more ideas?

    Comment


      #3
      J., Thank you for your thoughtful reply,

      Yes, me calling Aderall Meth was a bit of a misleading statement. It's what my family calls it as a "joke," albeit an inaccurate one. I must be more thoughtful when posting on a public forum. It's not my living room!

      As for trying other supplements, I made a point of saying I'd tried many suggested HERE so as to not waste members' time writing about the list of supplements often recommended in this wonderful forum. I've tried so many things, recommended by my neurologist. Amantadine, B12, prescription Vitamin D, acupuncture, PT, gluten free diet, low carb diet (which I stick to, it's a perfect weight control diet for me) oh my gosh the list is endless. So I guess the answer is yes, I've tried many, many ways to treat this fatigue before we headed to the pharmacy shelves. My neuro is very cautious with that prescription pad of his. I also am working with my PCP, she is going over me head to toe to make sure my thyroid and other parts aren't contributing to this fatigue.

      Concerta's time release gave me really serious insomnia. Ritalin gave me wicked ugly crashes as the dose wore off. Yes, these effects may be different now because I am different now, and perhaps revisiting them will become an option if I do not adjust to Adderall.

      I've had such a wicked progression of this disease in the last year, and there is nothing to be done for those with SPMS. I used to think my fatigue was bad, a few years back. Huh, silly me, I had no idea how bad it can get, and even though it is presently crippling, I realize now that it can still get worse. Every thing has worsened over the past year. Any MS symptom you can come up with, I'm dealing with. Brain, bladder, vision, coordination, foot drop, weakness, swallowing problems, vertigo, falling, total numbness of fingers, .... and more.

      On 1/2 dose today, I was back to my normal of crippling fatigue. And, when I compare the way I felt today to the way I felt on a full dose, I know that I must give this medication a good go. It seems to be the class of drugs that the neuro believes is necessary for me at this stage, and I must listen to him. (I go to the Partners MS Center in Boston.) So, I'm going to take the full dose every day for the next 2 weeks and reassess then. I'll stick with it no matter what the side effects may become, and see if those side effects level off at all. I really have no choice. For the past year I've been barely living.

      If you have suggestions for me, bring 'em on. I obviously am in a very bad place right now and will remain open to all suggestions.

      Thank you for your kindness!

      Comment


        #4
        Here's a complication of me taking a med to increase energy levels with my advanced MS-----Yes, on Aderall I have the drive to do a bit more, although the fatigue is there in the background. So, I do more. And, I end up in so much pain I am worse off than I've ever been. I'll get all OCD at the cutting table in my sewing room and before I know it I've been standing too long and want to scream from the pain. I need to use my walker to get from the sewing room back to the living room.

        Aderall makes me do more than I can do... not in a good way.

        Without a stimulant, my body has been telling me what I can and cannot do. I can do a morning's worth of this and that. Perhaps a bit after lunch. And then my body tells me to take a nap. So I do. After that nap and dinner I can knit and watch TV, and can also rally to go out to an evening social event usually once a week.

        Perhaps the best solution is to do what my body is telling me I can do.

        Comment


          #5
          Do you drink coffee/soda/anything with caffeine? That could make you more wired.

          Have you heard of nuvigil? I took it once when my other doctor didn't like stimulants. I'm not sure it helps so much with focus (or at least as effective as adderall) There's a similar medication call provigil. These are hard to get but there are always the appeals.

          In terms of increased pain - that's bewildering and unfortunate. Sorry to hear that. Yes the adderall can make you do more which can cause pain. It can also allow you to spend countless hours reading journalists' tweets. :-) Or something else sedentary. Maybe you can find a balance between physical and then sitting down to read.

          I hope you find a regimen that helps. I could not leave the house or design and executive anything slightly challenging without it. I don't like the wired feeling though. I have high lesion load but it's more obvious in my cognitive issues.

          Good luck,
          So

          Comment


            #6
            Hello So, and thank you for your input.

            I have cut back to one cup of coffee, trying to slow my racing heart. And, my insurance won't pay for provigil or it's sisters. I did try it, though, as my brother in law has narcolepsy and a big supply of provigil. I raced like mad with absolutely no focus. LOL. It was not pretty. He gets no racing from it, it just stops him from falling asleep at the wheel and other places. I think it's a perfect example of a drug working on a patient who has the disease it was designed to treat. People I know who have real, no bones about it, ADHD take the drugs for it with minor side effects... because they have the disease the drug was designed to treat.

            I did decide to forge ahead committed to take Aderall for two weeks straight and just push until I adjust. 7 days in, that's not feeling so good. I take 10 mg IR at 9 a.m. 1/2 hour later my heart races like a race horse (I'm 61, this is not a good feeling). It levels off a bit and I get 2 hours of focus, initiative, drive, layered on top of my deep fatigue, which does not go away. Around 2 I start to crash and it lasts for hours and is getting worse every day. Total exhaustion without being able to sleep, depressive thoughts, obsessive self-hatred thoughts. It's ugly. Some nights I sleep very poorly, some nights it feels like I didn't sleep at all, and some nights I sleep like the dead.

            The stomach issues, headaches, blurry vision, dried up mouth, all seem like nothing compared to the crash.

            Worst of all, is I cannot urinate easily, in spite of drinking buckets of water. This is a bigger problem than all the rest, as I have a great big MS bladder problem. I told my neuro about this and his said "Rats." LOL. That's what I say to everything. He pondered that unfortunately I'll probably be self-cathing after I see the urologist in 2 weeks and so it may not matter... as long as I don't get a kidney infection before then. He stated he did not prescribe the XR because he was concerned about bladder problems, and is disappointed to hear the IR has caused them anyways.

            I was believing this was like other meds, that after a while your body will adjust and the side effects will dissipate. From what I've read, that is not the case. There's a whole lotta MS peeps hating the Adderal they are tied to in order to simply get through a day. It's so unfortunate.

            I'm conflicted. I might just have to keep it on hand to use on days that are going to be big (a wedding, a travel day, etc.) and on days without it when I'm in my at home groove, just listen and respond to what my body says. And, ask the neuro about trying LDN, although I know he thinks it's not worth a try. I think when he sees I'm at the end of my rope, he may go for it.

            Comment


              #7
              Hi HereIam,

              Please check your blood pressure when using any medication for fatigue.

              Through the years I have not had much luck taking any medication for fatigue but I tried one last time. From past experiences we decided to try Adderall first. Unrelated to MS or the use of Adderall I had 2 Dr. appointments spaced out from each other by a week.

              My blood pressure was taken at both appointments. The first appointment my blood pressure was elevated above what is normal for me (I usually run on the lower side). It was chalked up to the appointment. My next appointment my blood pressure was at an even higher level (195/100).

              I am aware medications for fatigue can do this so I decided it wasn't worth taking it (my prescribing Dr. agreed) and stopped. We did try Provigil but the other issue that I was having is similar to yours. Neither medications helped the fatigue, in fact my fatigue increased, but I had more energy and did accomplish more. The downside? I started making more mistakes and forgetting things (a sign I was overly tired).

              I am doing what I have always done --- living my life to the best of my ability even with fatigue.
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment


                #8
                Originally posted by HereIam View Post
                1/2 hour later my heart races like a race horse...I start to crash and it lasts for hours and is getting worse every day. Total exhaustion without being able to sleep, depressive thoughts, obsessive self-hatred thoughts. ... The stomach issues, headaches, blurry vision, dried up mouth, all seem like nothing compared to the crash. ... I cannot urinate easily ... I'm conflicted.
                Faced with doing serious harm to yourself, it's not understandable why you're conflicted. It's pretty clear to anyone whose view isn't distorted by being in your position that none of what you're describing is worth wrecking your health over. Seriously, triggering obsessive self-hatred thoughts just so you can sew for two hours? There's no conflict -- nothing is worth sacrificing your health and happiness.

                Originally posted by HereIam View Post
                And, ask the neuro about trying LDN, although I know he thinks it's not worth a try. I think when he sees I'm at the end of my rope, he may go for it.
                For you, it probably is worth trying. The top MS specialist in my region at my HMO told me she prescribes it for her patients. Not because it does anything for MS, but because it seems to give them a sense of well-being with few, if any, side effects. That might help you to cope better with your fatigue. I wish you luck -- I hope he does prescribe it for you and that you do well with it.

                Comment


                  #9
                  While it's be maybe 10 years, I have tried adderal and provigil. I took provigil for I think maybe 3-4 months. It gave me what I call a fake awake. No energy really just wired but a tired wired. Like I was awake 18 hours and just downed 3 coffees. It also interacted with my birth control so I had to stop taking it. I then tried adderal. I was so high I felt I could rule the world. No extra energy just determination I could do anything....until the crash...then I couldn't do a thing and I was so down in the dumps. Now I know why people take it recreationally but the crash is too depressing to make it worthwhile.

                  I totally can get what you are going through. The drug allows you to ignore your body only to pay the price later. High highs then low lows. I couldn't handle the rollercoaster. The highs were not worth the consequences. So I say dump it. Or see if there are more controlled released versions so maybe instead of giving you the drive to sew for 4 hrs you can only do 2 in the am and 2 in the PM. I've recently begun researching ADHD drugs for my daughters impending diagnosis and was surprised all the different stimulants there are now that have slower more controlled releases.

                  I think your asking because you know what you should do but feel you are betraying "what ifs" if you give it up. Go with your gut.
                  Carrie

                  Comment


                    #10
                    Aderol-my experience

                    I have had a similar background with the "ever increasing" fatigue throughout the years. In the past, I tried everything that has been mentioned (provigil, nuvigel, Ritalin, several others, including aderol. Like you describe now, none worked and they made me too jittery. So, after many many trials, I just stopped trying to help my fatigue. About 5 years passed and my fatigue had become completely debilitating. I was at the point of not being able to function and as we know, the quality of life keeps decreasing, as more functionality that is lost. So my Dr and I revisited it.

                    I tried aderol for the second time. It did take a couple weeks or so to adjust, but I don't have the jittery side effects that I had 5 years ago with the first try. I also have insomnia (have had for 16 years), so I was scared it would keep me up. My Ms Specialist prescribed 10mg aderol twice a day and told me to NOT take the second dose after 3 so it would reduce chances of effecting sleep.

                    At first, I tried just taking the morning 10mg dose, but like you mentioned, the crash comes unforgivingly around mid afternoon and my fatigue was worse than even imaginable!

                    I wasn't sure about taking it at all for these reasons, and I knew a second 10 mg dose would keep me up at night. So, I tried taking 1/2 tablet at 2:30-3 pm and it is working out very well now (for about 3 months now). My fatigue is still worse in the afternoon and evening (compared to mornings), but it's ok with me to ensure I don't stay awake all night. I have to set my phone alarm for my 5mg dose in afternoon because if I forget it, I just can't function at all afternoons/evening. And, I absolutely will NOT take the medicine after 3! If I forget it, (and I have, despite turning my alarm off), I just make it through to the next day and accept my worsened condition.

                    This is just my experience and I know everyone is different. My b/p has always been very good thankfully, and the aderol did not effect that.

                    It is helping me, esp in mornings, to at least get some basic things done. To me, it is more depressing to only be able to lay on couch or bed for biggest % of day. And that's how bad it was getting for me as well. For me, the inability to get anything done effected my sense of self worth greatly. So, I'm lucky that for now, it is helping me.

                    I hope you find the right solution that will help you and improve your quality of life. And, just because it is working for me at the present, we never know what our next days will be like, so I, too, try to just do the best I can each day. My faith in God has been a huge factor in getting me through difficult times!! Best of wishes to you.

                    Comment


                      #11
                      Hi Marie and thank you for sharing your experience. It certainly is worthwhile to retry a med that may have been difficult in years gone by. As this disease worsens, the effect of drugs can change.

                      I had tried Adderall in 2012 and that was a disaster but I tried again because I am at that point where I am debilitated by fatigue and also by pain. I thought my fatigue was bad in 2012, silly me.

                      I came back to finish my story, as I started this thread and wanted to finish it in case people look to it for advice. I'm glad you added your story.

                      I kept trying. Taking 5 mg morning, 5 mg at 1 or 10 mg morning, 5 mg mid day.

                      I did this for a month. I had to stop for two reasons: the crash did not lighten, it seemed to only get worse. Depression unlike anything I have ever known. And, the second thing was a big surprise to me: Heartburn. Like the depression, unlike any I have ever known. The neuro had me taking double doses of Nexium and others 2 x a day. No coffee, tea, chocolate, tomatoes, etc. The heartburn just did not stop. It was horrid and the neuro decided it may be related to my difficulty swallowing, which often leaves traces of food in my throat. I do tend to get heartburn easily anyhow. So, I drank buckets of water to wash everything down.... which of course filled my gut too much and increased reflux. I was caught in a terrible circle. I kept trying. I had swallowing studies and a scope done of my esophagus, which showed I was developing Barrett's esophagus from all of this madness. So, that was that.

                      When on Adderall, I never really felt energized, I just felt exhausted but able to do things. And, I could not nap because of the Adderall buzz, even though I felt drained. And, because I could do more, my pain increased.

                      Such a tangled web.

                      This med is so useful for so many people, but I'm not one of them. I'd encourage people suffering from fatigue to try it. You just never know what med will agree with you and which will not, until you try.

                      Comment

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