20 years of treatment failure: is there hope?

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This topic contains 42 replies, has 29 voices, and was last updated by  anomalocaris 4 months, 1 week ago.

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  • #60206

    2weelz
    Participant

    Greetings,

    In the 20 years since being diagnosed at the age of 37, I have discovered LOTS of things that don’t help at all, or that I can’t sustain, such as medications (six of them so far), meditation, excercise, SPECT brain scans, coaching, counseling, neurodevelopmental movement therapies, nutritional supplements….the list goes on and on. Some of these things, like meditation and excercise, help some, for a while, but I can’t stick to them, because ADHD. It’s a classic catch-22–if I were consistent and “gritty” enough to stick with this daily thing for six months, I wouldn’t need to because I wouldn’t have ADHD. It seems like with the behavioral stuff, like coaching, meditation, and excercise, I don’t have the baseline neuroligical function to even apply it. Meanwhile, life continues to be a shambles, objects seemingly appear and disappear at random, completely outside my control, I forget everything, I’m late for things I really want to go to. Today I missed my Aikido class. Got up at 8:20, class is at 11;00. Couldn’t leave early enough, got there just a class was ending, even though I skipped breakfast and didn’t shower to try to make it. Travel time is only about 25 minutes. It’s like, oh, 9:30, better get going, I start getting ready, and BOOM! it’s suddenly 2 hours later and I’m late again. It happens EVERY WEEK. Five minutes go by, but it’s somehow 2 hours later, and I have no idea what just happened. How do you apply “time management skills” when your time perception is so whacked? I mean, they say martial arts is one of the best things for ADHD, but what if you are too discombobulated to even get yourself to class? Same thing applies to therapy sessions, BTW. I have given up on in-person sessions. I meet my therapist remotely. Then I’m only 10-15 minutes late. At least the internet is good for something other than wasting hours at a time. But making and keeping appointments still stymies me, such that I meet with him less than once a month, on average.

    After completely missing a class for which I’d gotten up early and skipped a meal and a shower in the mad scramble to get there, I came to a realization: Effort produces only failure. So where do I go from here? What do I do next? I’ve tried all the things ADHDers are supposed to do, with no lasting results. Another book? Another doctor? What?

  • #60211

    sdennis
    Participant

    Thank you for writing. It did my heart good to know their is someone similar to me. I’ve tried meds and eventually quit them. My biggest hurdle is to not talk so much. Can you give me any advice. Please

    • #65143

      anomalocaris
      Participant

      I’ve never been able to afford treatment of any kind, so I’ve had to become the master of finding ways to cope. Since I can do nothing about the overall issues, I focus on concrete solutions to individual behaviors. For example, once I learned that I had ADD, and understood what was making me late, I came up with some solutions. Maybe some of them will help with you concerns about being late.

      1. Always establish a set time to leave, and make sure that time to leave is at least half an hour before I really need to leave to arrive on time. That way, when I’m 15 minutes behind, I still get there a little early. I also get there less stressed. It takes me half an hour to work. I give myself an hour — plenty of time to dawdle, take a few photos, hang out with the rattlesnakes in the lobby for a few minutes.

      2. If I’m ready early, I do not allow myself to start anything (even looking at an email) in the remaining time. Instead, I wash one or two dishes, or sweep the floor — any one of those tasks that only take a minute or two but are so easy to put off. I won’t be distracted and tempted to linger at those tasks — and I feel like I’ve accomplished something to boot.

      3.I Pay attention to my tendency to get distracted by minor crises (can’t find my sunglasses, knocked over a stack of mail), and tell myself, aloud if necessary, “The scattered mail will still be there later. Right now, I need to get out the door.”

      I’ll still occasionally run behind because of the things that are out of my control, but I’m not finding myself feeling humiliated by having to say, “Sorry I’m late again!! It’s the ADD thing!” Now it’s just, “Sorry! Tortoise pooped all over his breakfast at the last minute and I had to make him a fresh one,” and I can laugh it off, because everyone has mornings like that now and then.

  • #60234

    ADHDmomma
    Keymaster

    This free webinar replay is packed full of tips and tricks for successful time management when you have ADHD:

    Free Webinar Replay: It’s About Time: Understanding the Science of Time Management with ADHD

    Penny
    ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism

    • #60254

      2weelz
      Participant

      <sigh> I guess I could watch this a third time. He does not answer my main problem. Hours at a time disappear inexplicably, without my being able to account for them. I took 5 hours to make a simple rice-and-red-lentil one-pot dish last night. Should have taken less than an hour. As a result, I was up until 2 AM; my target bedtime was 11:00. I cannot tell you what I did for most of that time; I do not know what happened during those hours. Perhaps I was abducted by aliens; how would I know?

      On a typical day, I will be getting my shoes on to walk out the door, a task that takes 3 minutes, and suddenly it’s 15 minutes later, and I don’t know why. It is like this all day long, every day. Time just disappears.

      But it doesn’t. I know I am getting distracted into doing this and that and the other, responding to needs in the moment, there is some recollection when I really think about it. But the distractability and impulsivity are so extreme that I can’t really stop it and I should be in the shower right now instead I’m typing this. See what I mean? All these tips and tricks and principles require a certain amount of focus and ability to stay on task that I just don’t have to begin with. The basic brain function necessary to even apply all this great stuff is just not there. So I’m stuck.

      It’s 10:20 right now and I intended to be done with my shower, now I may be late for work. I knew I should have stopped typing, but I COULD NOT STOP. That’s how it works.

    • #60427

      2weelz
      Participant

      @penny, I do thank you for that link, and will listen or watch
      @gentlygenli, yes, timers are a help, and I do use them. But improved brain function is needed to really take advantage of them. You have to remember to set them. You have to have a certain amount of focus to “do nothing else” without getting pulled off track. Your hyperfocus can’t be so strong that you just ignore the alarm. But yeah, maybe I could add a few more. Do you use timer apps, or hardware timers?

    • #61024

      gentlygenli
      Participant

      You don’t have to remember to set timers usually because you should have a weekly schedule. Reoccurring timers are simple. If you have a new schedule every week, then set your timers when you look over it. 😉

      For important things, I use my iPhone alarm. It’s loud. You have to press a button to stop it. Less important things, the Alarmed app with auto reset. That gives me nudges without me having to stop an alarm.

      • This reply was modified 5 months, 1 week ago by  gentlygenli.
  • #60395

    gentlygenli
    Participant

    I run my life on timers. Timer tell me to do x, I do it. AND I DO NOTHING ELSE. Then I’m on time because I worked out how much time I really need ahead of time. I have EXCATLY enough time and no more. I’m not early. I’m not late. If I arrive a couple of minutes before things start (not the same as actually early because traffic buffers are needed), I then have a reserve task to do.

    • This reply was modified 5 months, 1 week ago by  gentlygenli.
  • #60508

    ADHDmomma
    Keymaster

    Here’s a list of good strategies for folks who are “losing time:”

    “It Can’t Be Time Already?”

    Also, a gadget like RE-Vibe might be what you need to help you keep refocusing on the task at hand. It vibrates at specified intervals to remind you to self-check if you’re on task:
    https://shop.fokuslabs.com/

    Penny
    ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism

  • #60588

    kyle8
    Participant

    No matter what you’re going through, there’s a light at the end of the tunnel. And it may seem hard to get to it but you can do it and just keep working towards it and you’ll find the positive side of things.
    bullet force

    • #65619

      anomalocaris
      Participant

      Regarding the ReVibe. They’re insanely expensive. My “poor man’s version” (when at home) is to leave the TV on in the background, knowing that they break to commercials every 15 minutes and have a program change on the hour. That way I have a sense of the amount of time passing.

  • #61128

    Deanne
    Participant

    2weelz, you’ve described exactly how ADHD feels to me as well. I was diagnosed 7 years ago at the age of 44. Fortunately, I have found medication management somewhat helpful and don’t believe I would have been successful with my 7th attempt at graduate school without it. I’m now finding at the age of 51, my symptoms are entirely different than in my youth. I believe being post menopausal also plays a large role in the differing symptomology. I mainly struggle around staying employed, oddly enough an issue I did not struggle with in my youth. I’m truly a gifted therapist when it comes to client care and connecting with people, but I struggle horribly around documentation which is a required portion of my job duties and carries with it an ethical reponsibility as a clinician. I’m finding I am slower than my colleagues around navigating electronic health records, it takes me twice as long to do the same tasks, harder to formulate thoughts into coherent intelligent sentences, and I end up working longer unpaid hours. I know current corporate culture, other environmental factors, and my own work ethic (I just don’t do “good enough”) also contribute to sustainability, but despite my own training and knowledge in mental health it has become increasingly difficult to remain optimistic after hearing “maybe we just aren’t the right organization for you”. It’s so difficult to describe to another person what it means and feels like to have no concept of time. The closest I’ve come is likening myself to my dog; I don’t know if I’ve been in my kennel for 5 minutes or for an entire day…I don’t know if my master has been away for an 8 hour work day or a week long vacation! I utilize timers, schedulers, apps, and try to remain disciplined around all, but my impulsivity, hyperfocus, and inability to pull myself away from certain tasks continue to be symptoms which are seriously debilitating as an adult. I’m sorry I don’t have an answer for you. I mainly just wanted you to know that I get it and I understand the pain it causes you.

    PS: LOL…I had to go back and edit this because there wasn’t a space between a “,” and the next word!

    • This reply was modified 5 months, 1 week ago by  Deanne.
  • #62042

    NancyChi
    Participant

    There’s always hope!

    I’m in a somewhat similar situation.

    Until I found people similar to myself, I was sooooooo frustrated (timers, pff haha) – unless I change my systems in place every so often – they become white noise and I ignore them (reminders, timers, sticky notes, phone calls………) . So, I’m

      Totally

    with you. It’s a constant struggle. I accept that I have a disorder and for some things I am going to find workarounds where for others… I’ll just have to adjust/accept.

    Secondly, what is working for you ? You have hobbies (Aikido) you have a job (or are financially stable enough to have hobbies), … I’m POSITIVE there are Tons of others. ==> some things did work for you. You have learned a bunch over the past 20 years.

    Trying yet another new therapist/coach next week. I may even ask her to go over Tuckman’s workbook with me (since I can’t stick with it by myself).

    (((Hugs)))

  • #62048

    chezmo
    Participant

    I’m so sorry you are experiencing this. It sounds like you are describing me many years back as well. Motivation for many of us is a big problem, and like you said it feels like trying harder has the reverse affect…because it does! I tried many meds and supplements over the years and finally have found quite a bit of difference in Wellbutrin. I cant say it is perfect, but what a huge difference to have the adrenaline I need to get going. Only then did years of learning techniques pay off for me. I still lose time if I am not careful, but my brain needs some off time too! I could still use a bit of Ritalin or some natural things like ginseng sometimes help in order to focus on a task, but I have been accomplishing more than ever before in my life.

    I periodically forget my medication and definitely feel the difference. I would get back on whatever you said was working for you. Even if you forget sometimes, it is better than having no hope of a productive day. Put a reminder at the top of every calendar day. Have it also send you a notice on your phone. I usually have back up plans but still I was 2 hours late for my car appointment this week simply because I forgot to look at the calendar first thing in the morning! They were very good about it.

    My husband also helped me clarify my misconception of time for specific tasks. For example, I thought it only takes me 30-40 minutes to get ready in the morning to go out, however it really takes an hour. He had my permission if I got sidetracked, to say “is that essential right now?” And I found myself asking the question at times too.

    Anyway, don’t give up! The articles in ADDitude magazine have been very helpful for me in many cases too!

  • #62064

    jmekrut
    Participant

    Has anyone on this thread tried neurofeedback?
    John Mekrut

  • #62072

    garyhbradley
    Participant

    Hi 2weelz, sorry friend I have nothing to offer because because you described me perfectly… Here I am at 3am teething to figure out why I didn’t go to bed at 11. Can’t really tell you what I’ve been doing all this time. I’m on 54mg ConcertaXL and it has some effect of combined with exercise, diet and routine. Timers have limited use for me too. … Yawn. Gawd I need to put this phone down…

    G

  • #62074

    suesfortoday
    Participant

    Yes there is always hope though sometimes I am looking in the opposite direction. If I am tired or have a fever, if too many details of my life have recently moved or changed, or I am just overwhelmed I might miss the hope in my life.
    Recently not knowing I was getting sick I had a meltdown all by myself at home.
    My faith in a loving God keeps me going a little further when I get down.
    One minute at a time is all I can handle really.
    At age 70 just began Stratera and find it very helpful. Am I satisfied with my progress? Sometimes.
    Go to bed early and if you can eat ice cream first.
    One day at a time, dear one, I know your pain I live it too.
    Try a different Therapist and stop eating gluten.
    We never know until we try what will help. Gluten free is a miracle for me. Less brain fog. Less I said. Gratitude is my saving grace.

  • #62079

    Carol
    Participant

    I had four physical problems that made my ADD worse. Once I was diagnosed and treated, it got much better.

    1. Severe Periodic Limb Movement Syndrome. My hands and feet twitched 80 times an hour — more than once every minute! This brought me out of the deep sleep that is restorative, but didn’t wake me up. So I had no idea until my doctor authorized a sleep study. I was sleep deprived and didn’t know it. I just knew that I had terrible problems with memory and focus.

    2. Sleep Apnea. This was also discovered in the sleep study. Now I use a CPAP machine.

    3. Gut inflammation. I discovered that I have sensitivity to grains and dairy products. When I stopped eating those things, my brain cleared up and I had more energy. Recently I read that the mechanism is that when you eat foods that you are sensitive to, it creates inflammation in your intestines. This leads to the creation of something called monocytes, and they travel through your blood stream and penetrate the brain/blood barrier, giving you brain fog.

    4. My brain chemistry was out of balance. I did a non-invasive urine test from Neurogistics.com, and my practitioner used TAAT — Targeted Amino Acid Therapy to treat it with an individualized program of supplements.

    One thing that we discovered is that DLPA helps.

    Also, my body can’t methylate my B vitamins, and that means that my body can’t convert Norepinephrine to Epinephrine. The NE:E ratio should be between three to one and six to one, but mine was originally fifty to one! When the ratio is greater than six to one, it results in lack of focus, concentration, motivation, and energy. Once I started taking methylated B vitamins in the form of L-methylfolate, the ratio came down by half, and the difference was remarkable.

    Try to find a doctor trained in Functional Medicine, or a Naturopathic Physician. They recognize that our bodies are interconnected systems that affect each other, and can recommend all sorts of helpful diagnostic tests.

    I hope some of this will be helpful to you. Good luck!

  • #62082

    Parminter
    Participant

    Dear Zweelz
    Yes, you sound catastrophic, just like me. You are castigating yourself for absolutely everything that you trip up on, which is a lot.
    But how many are of any real importance?
    And what do you do well? For a start, you write beautifully, with vigor and honesty and a wry sense of humour, and that is a very rare accomplishment – particularly when one is frazzled to the brink with all the do this, try that, not that, swallow this, and on and on.
    So write, find the things that you can do, not the things you cannot, the latter are legion and will break your heart.
    Those of us like you are on tragi-comic adventure, but we often have rare skills, even if we use them at three in the morning.
    Throw the beepers out of the window.
    Creativity – which you seem to possess in spades- does not come with a beeper.

  • #62097

    brucerbrown
    Participant

    As long as you keep trying there is hope.

    I use a variety of timers, reminders, whatever. The very best for me is when my wife reminds me, but she’s not always around. Second is smartphone alarm with the buzzer set to Cat5 Hurricane Warning level.

    I also send myself e-mails because 1. wife isn’t always around and phone isn’t always charged and 2. I’m a fanatic about checking email.

    3×5 card notes taped over the toilet (I’m a guy, so it’s behind the toilet) – I reserve this one for the most important stuff. When it’s just about time for whatever I remove the card from the wall and sometimes have to literally hold it in front of my face while I walk to whatever is supposed to happen.

    I am pretty good, but not perfect, about keeping my phone charged. When I’m supposed to have a phone conference for work, I ask people to call me. Moderate success with it making a difference.

    The list goes on. I’ve been trying to organize and get better with it since 1984 and 85% of the time the variety above works for me. I’m OK with 85%

    • This reply was modified 5 months ago by  brucerbrown.
  • #62100

    brucerbrown
    Participant

    As a general practice, for me, at least some exercise every day is an absolute must, even if it means walking in place vigorously. The trap for me is vigorous exercise gets my neuro-juices flowing and I get all kinds of ideas. If I don’t record a voice memo (and remember to listen to it, which I usually don’t so forget that one) or send myself a text msg or an email or write it on my phone (I have a Note 3) or write it on a 3×5 card or SOMETHING, the ideas go away.

    Whatever, the exercise helps overall, especially my mood.

  • #62105

    Oldoc
    Participant

    Hi I am 67 years old with ADHDand short term memory deficit I continue to struggle with appointments etc.
    I still divide my life into “Muddle though” days,” Struggle through” days and finally”Stay under the Doona” days.
    two suggestions that might help
    ! Find some really enjoyable books and work to be 30 minutes early for all appointments, (the better the book the better it works!!)
    2 More importantly, be kind to yourself

  • #62108

    SBarrett
    Participant

    Zweelz, Relax, you’re far from alone. Far from it!
    I’ve been dealing with ADHD for more or less, roughly the same amount of time, but it was finally “officially diagnosed” about this time of the year in 1999. I’d just spent a week in a hospital ward, exhausted, ready to “check out” (before I was admitted, a-hem!), and my hospital assigned doctor frustratingly told me when I asked him, “Well, do I have ADHD, by itself or a mix?” His reply? I’m still chuckling with it 18 years later: “Buddy, you have ADHD in spades!”
    Your life is crowded not because you have ADHD. It’s crowded and right now seemingly unmanageable because you have a lot of good to share at 57. I’ve got 9 nears on you, and I’m still here with plans to keep on staying “here” and as active as I can be even when things look like they’re going completely out of hand … but trust me, and your doctors, and most of all those who love you the most … your family when they tell you that despite all the crazies ADD or ADHD and the other stuff that comes with it, esp. the Bipolar — you’re a much fuller and better person for dealing with it daily, setting the example (however flawed you might view your example might be in the eyes ofothers), than so many other people who might have all that we have except the simple lack of courage helped along with a good sense of self-humor. (Listen to lots of Jimmy Buffett songs, that’ll help, too.)
    Relax . . . you’re human and deserve the right to think of yourself that way, with all its imperfections and the sometimes positive exiting things that come with it. As for those non-positive things? Hey, relax on that too. If you take everything into perspective and context, in no time, you’ll start seeing progress in your life and not the excess confusion so many of us get bogged down with. Your life, even with all its whipsaw facets is worth infinitely more than than all the rest what you have to fret about that’s holding you back. Good luck. I’m confident you’ll see beyond just the negatives ADHD and ADD pack. There’s a hell of a lot of good we overlook, and you have that working inside you, too.

  • #62111

    MotherFox
    Participant

    I know what you mean. My – as short as possible – story: Diagnosed in 2015, 50 years old now, female, complete burn out 4 years after my son was born ( 2010). I always had problems( study,finances,housekeeping), but in 2014 I was desperate. My house a mess, incredibly tired ( too tired to do laundry, or dishes.). Incredibly forgetful, I couldn’t remember my meals or where I parked the car, I forgot the car breaks more than once ( with son in car), couldn’t handle a 18 hour/week job and couldn’t do grocery shopping, not even when I made a list and striped it off; I still would forget 1/3 of items. Always had migraines, but since a few years also daily headaches.
    Situation now: my headaches and migraines are practically gone, only a few days (1 or 2) prementrual headaches, but that’s it. My memory is fine now, like I’m 35 again, and I can do my 18 hour job. Grocery shopping goes well, but my house is still a mess, but working on that too. It did cost me my relationship, that is about to end shortly, but I can handle it. I must go now, but I will explain how in a couple of hours ( no miracle, but lots of steps).

  • #62112

    rcole1025
    Participant

    Wow, so many great responses here! I’m new to the ADD community (just joined a month ago) and it’s such an enormous help to hear that there are so many others out there struggling with the same challenges every day; it gives me more hope!

    2Weelz; unfortunately I can’t really add anything to the discussion other than my support and that I feel your pain and struggle with the exact same problems every day. CBT and mindful meditation helped for awhile until I started getting anxious that I needed to be doing other things with my time to find work and pursue creative endeavors on the side. Someone here mentioned your talent for writing and I would agree – so maybe start a blog or do some writing for some publications if you enjoy it. You would be helping many others by sharing your experiences and challenges with ADD and it’s also something you can do anytime of the day or night. I find doing something creative (for me it’s music) is a huge help to my mental and emotional health and I can use my hyperfocus to my advantage!

  • #62130

    darnelle.hilt
    Participant

    Omg!!!! I’m not alone?!?!? It’s a relief to see this, but saddened at the same time. How do we fix us?

    I know the fear of success is a major problem for me. Could this be the same for you? There is no fear of failure, I’m used to that. I get to the point wear I am almost successful, and then I set myself up for failure. I just have to find the strength to fix this. And I will. That is my hope.

    Good luck to you!! Maybe if you look into the fear of success, you may get some answers and guidance.

  • #62152

    quandary
    Participant

    No answers for you, but here’s another sympathy vote. Feel exactly the way you do. In fact, I used to study Aikido. Although I cannot explain why, I found that many ADHDers gravitate towards Brazilian Jiu-Jitsu. It’s the perfect subject matter for hyper-focus, I suppose. Just something you might wish to check out as an aside.

    Anyway, you described my life. Just about 50 years of this mess. Meds have been of little help.

    I will say this, however: I recently saw a British study that showed the low threshold for ADHD impulse control can be reversed via neurofeedback. I was skeptical until I saw the methods used and looked at the research results. It’s a way of reprogramming the brain by training yourself to naturally focus. It’s quite brilliant, actually, and involves playing video games that react to your level of focus.

    Studies showed the theta waves were in the normal range following treatments. ADHDers normally have higher amplitude and longer wavelengths in theta. Therefore, less processing occurs in the prefrontal cortex before traveling to the limbic system. After the neurofeedback, theta waves are consistently of higher wavelength and lower amplitude.

    Haven’t yet given neurofeedback a shot because I’m trying to first deal with comorbid ADHD issues of greater concern (depression+). Perhaps you will consider looking into it. Best of luck.

  • #62159

    gina loretelli
    Participant

    I know exactly how you feel, a year ago my symptoms seemed to really get way worse and I cannot hold a job. Mostly because when I see the way employers treat employees I cannot keep my mouth shut about it. I get fixated on injustice and just don’t know when to stop. I cannot do the stimulant meds, they make me sick and give me nightmares. To me they just feel like street meth. I’m hoping and praying I find something soon that can utilize my skills. I’m great at making connections and sales, terrible at paperwork and follow through. I can’t organize to save my life. My other saving grace will be if my husband will find a higher paying job which he has the ability to do and then I can just stay home and focus on my family. I don’t have too many problems with time. I can get to places on time and if I’m not working I can remember my and my families appointments. I have to be the thinker for my whole family. I do the bills, I make the meals, I plan the outings. So it’s hard to fit work stuff in my brain. Good luck to you!

    • #62164

      quandary
      Participant

      Can so relate re impulse control when it comes to “injustice” issues. Especially in the workplace. Has made working for others one of my greatest challenges. Thanks for writing about your eperience.

    • #62243

      mdupuydewitt
      Participant

      Quandry, I didn’t know about the injustice fixation connection with ADD. Now that I am older and less shy, I can be a horrible, mocking brute sometimes when I feel that others are being insensitive. This passion to stand up to the “wrongdoers” has been as much of an impediment to my career development as my bad time management, forgetfulness, and perfectionism.
      I am definitely researching neurofeedback. At least I’ll print information from the web, put it in a pile and maybe I’ll read it sometime. Ugh, I hate having ADD.

  • #62162

    jmekrut
    Participant

    Quandry, and everyone else on this thread, please look into neurofeedback training in your town. Quandry, it will help with your depression as well. I have seen many clients re-regulate their brains using this training and the results are permanent, with no known side effects. For those of you who are interested in the research behind neurofeedback, which goes back some 50 years, here’s a great link. https://www.isnr.org/isnr-comprehensive-bibliography

  • #62186

    Carol
    Participant

    FOCUSED FORWARD: NAVIGATING THE STORMS OF ADULT ADHD was written by James Ochoa, my wonderful ADD therapist, who has ADD himself.

    I used to beat myself up about how I couldn’t even keep my house orderly, plan meals, etc. etc. etc. The emotional distress and low self esteem only made it harder to manage my symptoms.

    I think his book might be comforting and helpful for you.

  • #62191

    Carol
    Participant

    NEUROGISTICS, Inc. can work with you by phone, and send you the tests for neurotransmitters, gut inflammation, food antigens, nutrient deficiencies, etc. Their web site is NEUROGISTICS.COM.

  • #62199

    mzleslie
    Participant

    I never knew I had ADHD until my son was diagnosed. As I research the topic, I find people like you that are exactly like me. I just always thought there was something wrong with me, I didn’t fit in, I couldn’t do things as fast, I was disorganized … yet not understanding what I had, I worked hard to combat all these things. In my 20’s I was a mess. One thing that kept me grounded was my Dad who had been in the Air Force. He taught me structure – which is so dang hard for us ADHDers, I couldn’t get my act together long enough to keep structure in my life, but at least I knew what I was aiming for. One thing he did ingrain in me was never, ever be late. I was terrified to be late, so I had that going for me, fear was motivation to stay on task like my life depended on it, I still stress over being late, time still does disappear on me, but I’ve gotten better at managing it. I’m a natural night owl and would work on things until 4 or 5 am, have no idea how it got so late, and then have to get up for work in 1.5 hours. Dinners, like you, could take me 5 hours to make and many time I would forget to eat at all. There would be times I made dinner and found it in the morning. How the heck does one do that??? Dang distracted mind.

    So that’s some of my background, but helped for me? Acupuncture, breathing techniques, yoga, setting limits, and forgiving myself. I did Acupuncture on and off for 4 years. I originally went for stomach issues, learned I had extreme anxiety and was taught how to manage it with breathing techniques (I was breathing wrong, yup, totally wrong). As the anxiety quieted down, my exec functioning skills started to kick in. I was getting more sleep (so important to help quiet our distracted minds!). Eventually a friend of mine got me to go to yoga and she didn’t want to go alone so she made sure I went. That was the trick! Have a buddy that makes you accountable. She would constantly call or email me, that was my prompt to get ready, she was always on time and I did not want to let her down (from my Dad, fear or making someone else wait). So we went 4/5 times a week, on time. And after a few weeks or so I noticed a huge shift. I was far more focused and less distracted. Between the acupuncture and yoga (breathing), I was able to find my exec functioning skills and start flexing them.

    One of the things I’ve learned recently was for those of us with ADHD, there is NOW and not NOW. This is why we struggle with time. We do everything NOW, our brains do not comprehend later, that would be not NOW. I managed to get through having to do everything now by making lists and limits.

    LISTS
    Unfortunately I overwhelmed myself with lists, lots of lists, my lists had lists – it all fell apart. But I would just start over, simplifying my lists. An amazing business woman once taught me, every night before bed, take 1 hour of time – be it in a bath, sipping tea at the table or in bed – just make sure to take the time, no more or less, breath, come to a state of calm and write 5 things you hope to accomplish tomorrow. And know you will only accomplish 3 at the most, and be ok with that. Don’t make the list overwhelming and something you cannot succeed at … keep each task doable and small – like read the manual for installing the dishwasher, write 5 thank cards (address and mail will be tomorrow’s list), pay electrify bill (not all the bills), etc. keep it doable and uncomplicated. Check off items, which makes you feel good that you did indeed accomplish a task or two or three. Some nights I can’t make my lists, I fall off the wagon and my life gets chaotic … back to list making. I don’t beat myself up, just take a breath, commend myself for doing it for so long and just get back to it. If I finish the items on my list, awesome, I can add more items, if I want, or call it a day and feel accomplished.

    I do live my by calendar which is on my phone and online. And I reference it multiple times a day because I do forget my appointments, a lot. And I tell my husband to remind me. So every morning I look at my calendar, I do it as I eat breakfast and that is the only thing I allow myself to look at, well that and the weather. Every other app is off limits (limit your known distractions). I look at it when I get to work because I’ve already forgotten what was on it today. I look at lunch, again just before dinner and after dinner to plan for tomorrow, and again during my list making time. I look at that app and only that app. If I need to leave early from work, first thing I do add a reminder to the event for 1 hr before (it emails me and pops up on my phone and desktop) and I also place a sticky on my monitor because I’m going to forget, it’s just a fact that I’ve learned to live with.

    LIMITS
    And yes I need my downtime, lots of it, but I’m stingy with it and limit it. I do not watch TV, I’ll binge watch anything, so it’s off limits. Movies, I schedule them when I know I have time. If my kids are watching something I would love to watch and find myself sitting down with them, dropping whatever I was doing, I catch myself – is this essential? Nope. But I want to! my brain screams. To bad, finish the list and watch it some other time. But I’ll forget! my brain screams. Will it change your life, will you feel guilty after, will it help in any way? Nope. Ok, back to my list and prepare my tea for my down time to make tomorrow’s list. I do check out my online favorites from time to time, look at the news, FB, research stupid things I need to nothing about, but I give myself a time limit by setting the alarm on my phone. When it buzzes, I’m down and have to get to the task at hand whether it be sleep or laundry or driving my kids somewhere.

    The other side of limits – I plan my schedules for getting ready whether it be work or a night out or some other event. First work backwads. So for work .. walk to desk from parking lot, parking car, drive to parking lot, exit from house, get shoes on, make up, hair, etc… to wake up. then I map out how long I have for each item. If I need to be at work at 9am, and it take 15 minute from parking lot, 3mintes to park car, 30 minute commute … all the way to what time I have to wake up. So now, I have a timeline I can follow – at 7am I eat, if it’s after 7:05 and I haven’t sat down to eat yet, I’m skipping breakfast that morning, onto the next task. At 7:15 I do my hair, I have 15 minutes, if it’s not done in that time frame, I go to option B – hair goes up in a pony tail. I don’t like it, but if I’m running late, it’s an option to keep me on time. At 7:30 I haven’t gotten to the make up task, I’m going makeup free so I can catch up to my timeline, and so on. I make custom schedules for every event I get ready for, I now know how long things take me and know all my options if I’m running late. And after all this time, I still make these schedules. I know I have to and I’m ok with that. I am managing my ADHD mroe and more, it’s not managing me.

    How I manage

    • exercise, get a buddy that can help you be accountable and keep you going. Exercise has the biggest impact on keeping our brains in a happy place and acquiring the hormones that help with exec functioning. It helps us sleep better, also a huge impact on the brain and focusing and functioning. I think excercise is so important. When I fall off, I begin to struggle daily even at this age and all my habits
    • Make lists, I do not use my phone, it’s too much of a distraction and the light feeds our distracted minds, I use pen and paper (small notebook), which I misplace a lot, so I have many notebooks in my bedside table so I never have an excuse not to do it and there is no stress of finding paper.
    • Know your limitation – make a list of your limitations and come to terms with them. Knowing them helps you find ways to deal with them. As well as realize when you beginning to manage them better. And some of them, while being a weakness are also our greatest strengths – my hyper-focus makes me an amazing researcher. I am not great at getting myself to the gym, so I enlist the help of friends to come with me and keep me going
    • Medication, that is a tough one, I’ve never been on it. I’ve used my hyperfocus abilities to research the heck out of natural food that have helped. For my son, meds were an awful experience, until we were guided to treat him for depression rather than ADHD, huge difference and has helped.
    • Set limits on items you know are the most distracting – tv, internet, etc. Either set a time limit or just don’t go near it
    • Stop and assess – get used to stopping periodically and asking yourself, what am I doing right now? Is it essential? Get back to what you were doing and forgive yourself! It will become a habit over time. Saturday mornings I have to stop and ask myself every 10 minutes. Make sure you ask yourself nicely, do not judge yourself, do not put yourself down, this is just a question to help redirect yourself, not a time to bash yourself
    • losing things? Keys, I have a special hook. Periodically throughout the day I make an effort to make sure they are on that hook. If not on the hook, whatever I’m doing stops and I go find them and put them on the hook. Same with reading glasses. They are on my nightstand. Every time I go in and out of my room, I look at my nightstand, if they are not there, I stop and find them and put them back. It’s become such a habit I no longer lose either one. My kids and husband are also trained that if they find them, let me know where they are, make me get them and make me put them back, this teaches me to understand where I leave thing.
    • Forgive yourself – I have to forgive myself many times a day. I’m late and it drives me crazy, I forgive myself and commend myself for getting there. I lost that check – I forgive myself and know I will find it when I desperately looking for something else. When I find it I will put it on my nightstand with my notepad and put it on the list for tomorrow. Learn to let go – let go of guilt, resentment, hatred of this debilitating condition, you can learn to work with it and come to terms with it.

    You may already be doing these things and everyone has their own little things that work for them. Just wanted to share what works for me – took me 4 decades to get to a place where I can live with myself. It does get better, it is a lot of work. I don’t think there is any magic solution. Surround yourself with people who can help you, let them know your struggles and never get upset when they remind you that you are off task or question you about what you are doing or try to push you in the right direction. I get upset with myself when people point these things out to me, I’m not mad at them, so I take a deep breath, remind myself they are there for me and let go of whatever I was hyper focusing on that moment. There is a later, it doesn’t have to be NOW. And if I don’t get to it later, then I guess I didn’t need to be doing it in the first place, I let it go.

  • #62203

    Ram
    Participant

    Hi 2weelz,

    You have just described me precisely. We have so much in common. I am 57, male. Got diagnosed 23 years back and since then I am on medication – Ritalin, Adderall, Vyvance or their cousin. And I have had only medicated sleep since then. My ADHD traits appeared to help me in my younger years. I was called intelligent, great sense of humor, thinking outside the box, blah, blah, etc.

    While I still have all those ‘good’ traits, the baggage of the ‘bad’ symptoms has been unbearable. I am just so frozen, everything is a chore for me. Taking a shower is a big project for me.

    I have tried 10-day Vipassana silent meditation retreats several times. Tried isolation tanks/sensory deprivation tanks. Even been to Peru for psychedelic Ayahuasca tours couple of times. Listened to Eckhart Tolle’s audiobooks hundreds of times. Have dozens of yoga videos. Yes, I have listened to the audiobook FOCUSED FORWARD: NAVIGATING THE STORMS OF ADULT ADHD written by James Ochoa several times. Great book, but my ADHD is even greater!

    Your line that resonates with me so well is – “It seems like with the behavioral stuff, like coaching, meditation, and exercise, I don’t have the baseline neurological function to even apply it.”

    Nobody understands me. Family, friends, relatives, none. I am just a lazy bum for everyone. I have just one friend who has known me for 40 years and understands me, but cannot sell my case to my family and relatives. Nobody understands the concept of hyper focus, perpetual anxiety, a very elastic sense of time and so on. Everything that can possibly go wrong in life has been going wrong.

    I have a masters degree in computer science from an elite college, but that means nothing at this point. I haven’t been working for some years. I have a decent physical health, but I am just a vegetable for most practical purposes. I have been abandoned by my family and relatives, because nobody understands my condition.

    I think my brain is badly broken. All the so called dopamine rewards centers appear to have atrophied. If a brain scan is taken now, I am sure, it may appear like a honeycomb.

    I just don’t know how to prime the pump to turn my life around. I too just don’t have the baseline neurological function to reboot my life.

    2weelz, I feel your pain. Hang in there, buddy. We will figure it out. One step at a time.

    -Ram

    Here is a joke, aka motivational quote, to cheer you up: 🤓

    ———————–

    “Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” Steve Jobs

  • #62213

    mariamecham
    Participant

    I would definitely see an ADHD specialist. Sounds like you may have already. But I never would have found the right medication or dose had I not seen someone with a lot of experience. I am a low dose responder meaning I take 1/3 of the lowest dose manufactured. I also am in the 10% of people that don’t do great on the medication everyone else does well with so I’m now on something most general docs don’t even know about. If you have to travel, do it. Dr Dodson in Denver is awesome.

    Time management is hard for me too. I watch 10 minute YouTube videos when I am showering or else I will take 40 minute showers. I find that when I watch tv or listen to tv it helps me stay on track.

  • #62218

    MotherFox
    Participant

    Hi 2wheelz,

    And now I will continue with what helped and what did not.
    Meds:
    I started with ritalin, that didn’t work (I have adhd-pi, by the way), just got me really agitated and a very high bloodpressure.
    Then started with dex, very low dose, because of my strong reaction to ritalin. It made me relaxed, not so tired anymore, my headaches (and later migraines almost) vanished, and my memory improved dramatically over a few weeks. After a few months my mood also improved, but I still had a lot of problems with doing housework, planning anything, my job, etc.
    Because of stories of other people who had a dramatic improvement after being medicated, my boss and my partner expected me to be my cheery hardworking self again (from before my pregnancy that is) in a few weeks/months. Well, that didn’t happen. I also started cbt therapy, but it was way too early for that. I was so desperate to just get my life and household and relationship on track, that I couldn’t be bothered with the stupid planners and paper diary.

    Therapy:
    Well no CBT for me( for the moment), but I now have a therapist who gives me confidence that I’m doing the right thing. I choose what I want to be helped with, and that works for me. I have talks with a senior psych too, to check my progress with the treatment. He lately said something that I think of a lot. “Therapy can’t really help you. What we do is make you see things differently, so you can handle your problems in another way. It is not possible to increase your mental capacity, Although that is what most clients expect.”

    Planners,reminders,etc.:
    They can help, but you have to use them wisely and keep it simple. I use my phone calendar for appointments, and my appointment calendar is shared with my partner so he will remind me ( whatsapp) when something important is due.
    We use a paper shoppinglist on the fridge, and I ask my partner to put an item on there the moment it is out of stock, so the list is up to date, and I don’t have to check anymore.

    I also write errands on that list, and when errands should be done within a certain time frame, i make an appointment of them.

    Minimalize:
    Housework is really difficult for me, also because the house is full to the brim, and at the moment I try to minimalize all textile in the house. Already did the towels (freed up half a closet), now working on sheets and blankets. Tried clothes first, but that takes too long.

    Food and vitamins:
    I already used fishoil or linseedoil, magnesium and sometimes a multivitamin. Still doing it, and I try to eat healthy.

    Exercise:
    I walk a lot, but no other exercise at the moment. And that’s okay with me.

    That’s it for now, I’m starting to fall asleep ;-).

    • This reply was modified 5 months ago by  MotherFox.
    • This reply was modified 4 months, 4 weeks ago by  ADHDmomma.
  • #62240

    mineralamour
    Participant

    Sounds like you’ve been through a lot. There is no good scientific evidence for long-term efficacy of drugs for ADHD. The NIH Multimodal Treatment of ADHD study showed this with follow-up as long as 16 years. No treatment effect (drugs or behavior therapy) at 3 year follow-up and later. I’ve been doing neurofeedback to improve focus and other executive functions using quantitative EEG analysis followed by qEEG-targeted neurofeedback since 1991, with very satisfying improvements. “qEEG-targeted” means we look at what you’re brain is actually doing at rest and during tasks. We don’t use standard “protocols,” which may or may not work for a given person. Look at the provider/certificant lists on the Biofeedback Certification International Alliance bcia.org for Board Certified neurofeedback (BCN) providers and (even better) the Quantitative EEG Certification Board site https://qeegcertificationboard.org/directory/ for someone who does 19 channel qEEG competently, hopefully somewhere near you. I’d be careful and question deeply those practitioners who aren’t certified by one of these groups. Neurofeedback is no easy “fix” – it takes 20 – 40 sessions, twice weekly. Beware of the “miracle cure” folks who promise 6 session turnarounds. It is simply operant conditioning of the more functional states of the brain. The technology detects moments when your brain is more on top of it and lets you know. Being pleased about those moments reinforces the brain for doing it and gradually a skill develops. Kind of like learning a musical instrument (in this case, your brain) – but quite a bit easier. A competent provider will be a licensed mental health provider and will couple cognitive behavior therapy methods with neurofeedback. If neurofeedback just seems too strange, google “Bin He UMN quadcopter” and watch a movie of an undergraduate at the University of Minnesota flying a quadcopter with his brain waves.

    Good luck

    John K. Nash, Ph.D., L.P.
    Sr. Fellow, BCIA, BCN
    Diplomate, QEEG Certification Board

  • #62246

    SBarrett
    Participant

    mdupuydewitt:

    Think of ADD in the most ridiculously positive way you could never see yourself doing. Crazy, right? Well, back in my first post in this thread, I mentioned something about my urgings to play Jimmy Buffett tunes on YouTube. We ADDers might all be crazy and full of it like my doc said, “in spades,” but so what if it drives others crazy at times, so long as we don’t too wrapped up in it all, we won’t be “goin’ insaaaaannnne” as Jimmy loves to stretch it out in “Changes in Latitudes, Changes in Attitudes,” (or is it the other way ’round?) We can allow ourselves to get all worked up over the whole doggone alphabet soup array of related disorders, those “co-morbids” that upon first reading the word “co-morbid” itself will send a chill up n’ down our spines. And to what effect? Some of these related disorders are extremely powerful that once they can be allowed by our brains (and yes, sometimes our will even though we don’t mean to let it happen) and once that happens, especially if you’re trying to shake and leave behind (permanently I hope) some very bad memories . . . there’s going to be a lot of hard emotional gear switching in between. But if you’re looking for some comic relief to help you get your mental and emotional machine moving forward, think of our ADD’d minds as standard shift transmissions and it’s your luck to be driving a Ford, the most difficult of ’em all. Lots of strong legwork and right arm work. (Or to be easier, think of yourself as a VW Beetle, Toyota or Honda and spoil yourself. Imagine yourself stuck behind a light and you’re facing a steep uphill and you know what that means. Fast thinkin’ and fast leg n’ arm working to do. The first few times you’ll probably botch it and the car will talk back hard and fast. Over time, you’ll get the hang of it by developing your own shifting tricks. I guess they call those “hacks” nowadays. (So long as nobody’s hacking on your computer just before pay day.) Seriously … when you look at the crazy example I gave, what’s the most significant part of the whole process that’ll help you with ADD, OCD, or whatever, even Bipolar, and yes, that can be licked with our human help.
    Hmmmm, maybe let’s look at that gear box again. Gotta start somewhere, and it’s usually first gear. Nothing will happen to make our days more positive unless we take that first step. Period. It could be as “small” as taking our meds, or making sure the pets are all fed before we make our coffee and breakfast. (Guaranteed, cats, esp. cats, will never let you off the hook of their specialty treatment, the staring eyed guilt trip. Those are guilt trips we can’t just plunk in our history files. Gotta feed those suckers or you’ll pay dearly for it.
    It all comes down to making that one crucial decision to take that first step … whether we like or want to or not. When we make the decision, we’re in control and from that point on, our confidence increases, or knowledge increases and so do our skills, and what does that do again for our confidence? Inescapable life improver moments 101 in a nutshell.
    Well, the pros are ready to pounce on me for making it appear all too simple and I have to ‘fess, they have a point, but somewhat. After all, there’s no positive movement to gain by repeating the same old dumb first steps we know by now which got us nowhere. So let me back track a bit and say, “Make your first step a thinking first step.” I have to have a morning clear of negative thoughts and problems early in the morning when the most ideal time for thinking happens for anybody. Take a walk. Do something with your pets outdoors to get some fresh air and go back in and think, reflect, pray, you name it. Prayer always helps to keep us grounded and focused on Whom we really need and honor for the long run of things.
    One way to get rid of “injustice fixation” is to simply get fixated on something entirely different than what’s been bugging you for a while because you’ve allowed it to. Yep, despite all our medical conditions which allow for plenty of explanations for why we did or didn’t do sometime in our pasts. The key is to not let them become excuses or allow them to rile us so much that we can easily forget the good we’re trying to accomplish now. That saying by Christ about trying to hoe a straight line forward while looking backwards is in many ways so practical for use in many many other way and instances. (Think also about the difficulties of trying to listen to something important at the same time somebody’s trying to get something across to you. Good luck. LOL, it’s usually the first serving for any doozy of an argument that’s been cooking for some time already.
    Don’t hate having ADD. Embrace it and make it work for you. Find what you really excel in, keep at it and stay (reasonably focused.) That’s my simple Rx for that. But hating something that’s neurologically wired into your system is like hating your eye and hair colors. It’s you. Make your ADD work for you and you’ll see improvements. Can’t say how soon, but you will see ’em happen.
    Good luck! Now I have a six year old grandson to tame before he tames me.

  • #65142

    satsuki
    Participant

    ADHD can be triggered or caused by a lot of different things – for example nutrient deficiencies (see ncbi.nlm.nih.gov/pmc/articles/PMC4928725, PMC2248201), thyroid problems (PMID: 8450877), food allergies (PMC4322780), celiac or gluten sensitivity (PMC3184556), or neurotoxins (PMC4418502, PMC4389999). Psychiatrists aren’t being taught to screen for these things, unfortunately, so you have to do the research on your own, in my experience.

    For about 6 months, I applied many of these suggestions; I went gluten-free, limited my beverages to purified, re-mineralized bottled water to avoid all the chloramine, fluorosilicic acid and crud in tap water, and took quality, high-nutrient vitamins, magnesium, iron, zinc, omega3, iodoral, selenomethionine, CoQ10, sodium borate, st johns wort, dopa mucuna, kelp, 1tbsp apple cider vinegar twice a day, and a bunch of amino acids that are supposed to help with brain function (tryptophan, tyrosine, alpha gpc, GABA, acetyl carnitine, glutamine).

    I am not sure which one helped (maybe I should have added each one gradually so I could tell, but oh well), but I forgot to take my medication one day, and I couldn’t tell the difference, so I just decided to stop taking it. That was over a month ago, and I haven’t needed my medications since.

    Not only is my ADHD gone, I can also sleep normally, my heart arrhythmias and joint pain went away as well and I lost weight. It’s amazing! Though it is kind of depressing that I spent so much money on doctors visits, when I ended up finding better help on the internet.

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