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  • Do you take anything for some extra strength and energy throughout the day?

    Posted by alyssa-silva on March 26, 2024 at 6:57 pm

    I know albuterol is used for respiratory purposes, but it also gives me a burst of strength that I sometimes need to get through the day. Once upon a time, my neurologist prescribed me albuterol syrup to take by mouth for energy. Now, I just do a nebulizer every once in a while for a little extra oomph. 

    Do you take anything for some extra strength and energy throughout the day?

    alyssa-silva replied 2 months, 2 weeks ago 6 Members · 15 Replies
  • 15 Replies
  • eric-ovelgone

    Member
    April 4, 2024 at 2:37 pm

    I hate to advise anything medical without telling someone to consult a doctor. I can only say what I personally do…and it may or may not be safe for you. I do take ginseng for energy. Does it work? I don’t know. A big help on sunny days is simply taking a ride outdoors.

    • alyssa-silva

      Member
      April 4, 2024 at 8:21 pm

      I’ve been hearing more and more about ginseng recently. I’ve never tried it, but I agree with your disclaimer. I never try anything without consulting a doctor first. Sunny days definitely help me, too. There’s just been so little sun where I live for the past few months.

  • susana-m

    Member
    April 4, 2024 at 5:30 pm

    Ginseng is good but when I need a little more stamina for the day, I’ll take a green tea supplement in the morning. Just enough caffeine without leaving me jittery. I used to indulge in a little Cuban coffee on occasion, but that affected my stomach too much

    • alyssa-silva

      Member
      April 4, 2024 at 8:23 pm

      Is Cuban coffee different from other kinds of coffee? I was just watching a show yesterday, and the person was raving about Cuban coffee. You’ve caught my interest.

  • mike-huddleston

    Member
    April 8, 2024 at 3:01 pm

    My neuro at Hopkins prescribes Mestinon (Pyridostigmine) for me. Has to be taken with meals, so caution if GI issues. I take 1 60 mg tablet with breakfast, and then split one in half for lunch and dinner. This allows the muscles to contract longer before fatiguing. Does it work for me? I’d have to say yes. On a recumbent stepper (NuStep) used at PT for a 10 minute warmup, I went from level 1 to level 6 (out of a total of 10) and my reps per minute were more stable toward the end of the 10 minutes than before I started taking it. IOW, as an example, before taking it, I was not able to increase level of resistance and would average 75 steps per minute for the first 5 minutes than about 60 steps per minute for the last 5 minutes. After taking, increased resistance and average of 75 steps per minute the first 5 minutes and close to 70 steps per minute for the last 5. Similar consistency at each increased level of resistance.

    Last week, I also just started taking nitric oxide supplements (OTC, not prescription). An ambulatory type 3 mentioned it to me. Basically, it increases blood flow as it’s a vasodilator. Highly recommend discussing with doc before taking this as there are potential side effects. I’m taking less (one) than the suggested amount (three), and will see if I notice any benefit.

    Of note, I exercise a LOT. Weekly clinic and aqua PT sessions, and about 2 hours per day in my home exercise program – even on PT days.

    • alyssa-silva

      Member
      April 10, 2024 at 7:07 pm

      Interesting. Thank you for sharing. I haven’t heard of either of those drugs. Looking at the article @lisa-karczewski shared, I wonder if it’s for stronger SMA types? I have type one and I see it wasn’t part of the study.

  • lisa-karczewski

    Member
    April 8, 2024 at 7:03 pm

    https://academic.oup.com/braincomms/article/5/1/fcac324/6884168

    • mike-huddleston

      Member
      April 9, 2024 at 1:53 pm

      Interesting study. Thanks for sending Lisa. I read it quickly, but it would be good if repeated in conjunction with treatment (I started Spinraza in mid-2018, before starting Mestinon). And reported outcomes are hard to measure (“How do you feel?”) and more susceptible to the placebo effect. They should also break down the results better between type 2s and 3s as well as copies of SMN2, all potentially meaningful to how one responds to treatment of any kind. I’m a 3 with 4 copies of SMN2.

      My experience was documented and displayed at the 2021 CureSMA Conference as we had weekly hard, documented, measured data over a nearly 2 year period. So, my baseline measures were established while already being treated with Spinraza, so the biggest gains for me were with Mestinon. IOW, I was measuring results on the NuStep for nearly 2 years before starting Spinraza, and then being treated with Spinraza at least 1 1/2 years before starting Mestinon. There was a slight and consistent uptick in resistance levels and steps per minute with Spinraza, but a much sharper increase in both measures after starting Mestinon.

      • lisa-karczewski

        Member
        April 11, 2024 at 4:23 pm

        Thank you, Mike for telling us about this medication. I have been getting Spinraza since about 2018 as well. I just spoke to my neurologist and he said that he would be open to trying this additional med with me. I see him at the end of this month so we will talk about it more then. He did say one of the side effects is the dreaded diarrhea. I live in Phoenix.

      • mike-huddleston

        Member
        April 16, 2024 at 2:33 pm

        Hey Lisa – definitely worth a shot. I know two other type 3s, both ambulatory (I’m not since 2015) who tried it as well. One remains on it the other didn’t. As far as the side effect, it’s to be taken with meals. When I do that, I haven’t had any issues. And without re-reading what I wrote above, apologies if this is repeated info. The Rx calls for 60 mg and it comes in tablets, each being one dose. When I ramped up with it, I cut each in half and took a half with breakfast for a few days to see how it went. Then increased to 1/2 at breakfast and lunch for a few days, then added a 1/2 at dinner for a while. I now take one whole one at breakfast and a 1/2 at lunch and dinner. So, ramping up helped for me and something to keep in mind. That will also tell you when you may cross into the side effect area.

        I hope you find it helpful, but please keep us in the loop on any progress.

  • lisa-karczewski

    Member
    April 8, 2024 at 7:06 pm

    https://smanewstoday.com/mestinon-pyridostigmine-bromide/

  • mark-pratt

    Member
    April 18, 2024 at 2:35 pm

    A few years ago, my neurologist performed a study on the effects of Divalproex (tradename Depakote) on his patients with SMA. I was in the initial study. I’m 68-year-old Type 3.

    Depakote is an FDA approved drug, an anticonvulsant that works in the brain tissue to stop seizures. Divalproex sodium is also used to treat the manic phase of bipolar disorder (manic-depressive illness) and helps prevent migraine headaches.

    But for whatever reason it helps people with SMA maintain muscle strength. I know a couple other of his patients also on it and feel worse when they go off. I’ve never had side effects and because it’s FDA approved; it can be prescribed extra-label.

    Of course, always consult your physician before taking anything new.

    • mike-huddleston

      Member
      April 18, 2024 at 2:48 pm

      Hey Matt –

      Very interesting and I appreciate you posting that. Do you mind if I ask if you are also being treated with either Evrysdi or Spinraza and if so, any difference in combo with it?

  • susana-m

    Member
    April 29, 2024 at 9:44 pm

    Alyssa, Cuban coffee is basically espresso, very concentrated and nothing like normal coffee. Check on Instagram for a guy called Sucoo, his cafecito journey has become epic.

    • alyssa-silva

      Member
      May 1, 2024 at 10:20 am

      This Succo guy sounds right up my alley. I’ll have to check him out. Thanks!

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