Frustrations of figuring out treatment

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    • #90684

      I’m 32, I’ve had a pretty good idea I was ADHD all my life. My parent’s didn’t think so though, and my dad just kept saying that he had the same problems and I just needed to try harder.

      He was a C student. I was an A student. I was smart enough to compensate in school. 10 minutes of paying attention was all i needed to understand the material. I struggled with remembering homework assignments and projects though.

      I struggled in college as well. I started out as Pre Med, a double biology and chemistry major because that’s what the smart kids do. I loved math. Took Calculus my first semester (a junior level course) and had an A in it. But i was failing biology because i couldn’t memorize the endless lists of classifications. I couldn’t keep up.

      After a year, i switched to nursing. I felt like a dropout, and a lot of my friends who were in pre-med with me told me just that. Once in nursing school, we took a psychology class. I asked my professor about ADHD. He was nice enough to let me come to his practice and screen me. He told me I was definitely ADHD. Told my parents. They took me somewhere else for a second screening, who confirmed. Finally!!!

      The second guy couldn’t prescribe, so he sent me with a report to get meds elsewhere. Had trouble finding a doctor to give me meds. When I finally did, they put me on Strattera. No amphetamine salts. I get it. I’m in college at this time, high risk for abuse. So I started taking it. I changed my whole personality. My grades went up a letter and I was far better at school, but my fiance told me how much I had changed on the meds.

      Strattera is a blood level thing, you have to keep taking it. No med breaks there. So I toughed it out through nursing school and quit the meds. It shot my blood pressure through the roof. Ended up finally getting everything under control, but now I’m off meds.

      I worked as a nurse, and struggled to keep everything straight. Luckily I never hurt anybody, but I had one close call that I know would not have happened if I had my ADHD managed. I went back to school and got an MBA. I went into home health, became a director of a branch and now I argue appeals for Medicare payments in front of a judge. By everybody else’s standards, I’m doing well right?

      Well every day is HARD. I struggle to remember things, I forget them. I’m paranoid i’m going to get fired because no matter how hard I try I always screw something up. I’m stressed out and don’t know what to do. I decide to give meds a try again. Ask for maybe something just as needed from my family doctor. He gives me Vyvanse. That stuffs expensive. I’ll only take it when I need it. This doesn’t really work. I try taking it every day. By day 3 I’m miserable. I feel terrible and I quit the meds. Feel better the next day, but still no problems really solved.

      Months later I try again. I resolve to try it for a couple of weeks. I take the meds Monday-Friday. After the first week. Things level out. I’m going great. I’ve doubled my productivity at work. BUT, my now wife says i’m grumpy and short. At supper, the kids noise literally hurts my ears. I feel kind of hung over at the end of the day. So I go back to my family physician. I get a referral to a psychiatrist, but i can’t get in until October, 5 months away. My doctor tries swapping me to Adderall. Low dosage at first, not really effective. Trying the next level up.

      I’m so frustrated with this whole thing. I just want to be able to work and the people around me actually enjoy being around me. If I’m off the meds I’m so stressed out my wife can’t handle it. On them I’m irritable and she gets her feelings hurt. I don’t know what to think at this point. I don’t even know what to expect out of all this. I’m discouraged for sure. I feel like my brain and emotions are just broken. Ridiculous conclusion considering my job, salary, family, and all that I have going for me. People tell me to be content, to try harder. My wife is tired of dealing with me for the past 9 years. But this is all really hard.

      Thanks for reading. Just was hoping for some encouragement. At least typing this into a forum where somebody else might actually understand feels a little better. Here’s to you guys having a better time managing your ADHD better than I am currently!

      • This topic was modified 3 years, 5 months ago by bullitt031. Reason: newbie
      • This topic was modified 3 years, 5 months ago by Penny Williams.
      • This topic was modified 3 years, 5 months ago by Penny Williams.
    • #90700

      newbie, trying to figure out this forum

    • #90803
      Penny Williams

      There are two types of stimulants: amphetamine (Adderall, Vyvanse, Evekeo…) and methylphenidate (Ritalin, Concerta, Quillivant…). Almost everyone does well on one type or the other, but not both. It sounds like you may need to try a methylphenidate and see if you respond better with less side effects.

      Here’s everything you need to know about ADHD medication:

      A Patient’s Primer on the Stimulant Medications Used to Treat ADHD

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

    • #90821


      Thanks for sharing your story! I’m a high school teacher (24 years) diagnosed 16 yrs ago at age 35. I definitely relate to your struggles, both at work and home (2 kids, now 17 & 20). For the longest time, in thought that meds were sole remedy for this ADD ‘thing’ – until I put my marriage in jeopardy almost 15 months ago now. I share the same anxiety and shame that you do. The thing I didn’t realize was that I also needed a solid treatment plan in place, as well. For me, thatnincluded therapy as well as meds (Concerta 54mg).

      Having an objective third party to sort things out with has made all the difference for me. From your post, I didn’t get the sense that you’ve tried this route yet. Might this be something worth pursuing? We ADD’ers need additional supports – because as you say (as I experienced, too), attending to and keeping track of everything in our days is HARD. It’s still a struggle for me sometimes, but I’ve got the supports in place that I need, when I need them. I have an amazing family, as well; I sense you do, too (your wife is still with you in this – a huge difference-maker!).

      Just wanted you to know that there are lots of us out here walking the same road – when we don’t wander off, that is! 😉 Keep at it – and check back on this board if you need to. I wish you well on your journey… Chris

      • #99285

        Actually I’m not opposed at all to more than a just meds approach. I’ve already poured a lot of energy in to coping without meds for years. I’ve developed pretty decent ways to manage, and I’ve survived. At this point it’s the diatractability and lack of emotional inhibition that I struggle with. Both were fixed like turning on a light switch with the Vyvanse. Helped my own stress levels and helped me be a better spouse since I wasn’t not paying attention all the time and making her feel unimportant. I just couldn’t handle the side effects. I’ve researched and then journaled how exercise and diet affect my add symptoms and have accomplished just about all I can I think without meds. I think that’s why I’ve been as successful as I’ve been but what still affects me isn’t quantitative and isn’t something most people who don’t live with me understand. Finally seeing a psychologist on Oct. 5th. Wish me luck!

    • #99327

      I am 62 years old. I was diagnosed after my daughter was when she was 4 years old. She is 32 now.

      Over the years I have found that I have to maintain the medication level consistently to not go through the issues you are experiencing. It took awhile to work out dosages. I found extended release amphetamine salts caused me to “crash” later in the day. Probably the same time you are getting home from work for dinner, family ect. I found taking 30 mg in the am and either 10 or 20 mid day stopped the chemical drop off to make it through the evenings.

      The most important thing I realized is that consistency is critical. I don’t stop taking it over the weekends or vacations ect. ADHD is a lack of sufficient dopamine to keep on task. Working with a psychologist to develop consistent habits and tools to stay on task with things non ADDR’S don’t struggle with will free up your having to deal with issues as well. I.E. my work badge gets hung on my car rearview mirror as soon as I leave work, my house door locks need me to insert the key to lock it so I never lock myself out, I still use a daily notebook style task organizer instead of just my phone. I use the voice recorder in my phone if unable to jot a note immediately so I can get past trying to remember to do whatever…all these “tricks ” I learned through a great psychologist early on after diagnosis and re-tuned throughout the years.

      You’ll get there. Your spouse will be an asset helping you identify what to focus on once you find the right doctor. It to me a few doctors until I found one that helped me make it all click. Once you do, you will realize that having ADD is an asset and not a liability.

      Hope this helps.

    • #102347

      I’m 36, diagnosed at 33. Getting the right treatment is frustrating. In my case, the frustration lies with the tight laws and ridiculously higher prices on controlled substances like Adderall thanks to rampant meth abuse in my state (I’m in Missouri). My local CVS pharmacist even quit taking the SingleCare discount card, which helped me afford my medication, thanks to these stupid laws. I got treated like a drug addict and I legitimately have the condition.

      I take Adderall IR but I don’t find it as effective as the Adderall XR. I responded SO MUCH BETTER to the XR because my body metabolizes the IR faster. I’ve tried Ritalin, but I didn’t see a difference, and Vyvanse is off the charts too expensive. I had to stop taking the Adderall XR because of the expense ($160/month for a 3- day supply), and the IR is still about $40-50/month for me. I’m a teacher, and my insurance is terrible. I have a high deductible HSA ($6550) that my employer does NOT contribute to, I can’t afford a buy-up PPO plan through my employer (it’s OVER $200/month extra for just myself), and I can’t afford anything off the marketplace. I can’t go on my husband’s PPO because opting out of my school insurance will hurt what I contribute to my Missouri teacher retirement, and I can’t even use his PPO as secondary insurance because my HSA insurance doesn’t allow it. I can’t even afford to see a therapist that specializes in ADHD because my insurance sucks so bad.

      It’s all just unreasonably ridiculous. I feel your frustration every single day. I feel it when I get treated like a drug addict for wanting to AFFORD my medication and when I needed to find a new doctor because my old one closed down his practice. I feel the frustration when I’m barely surviving and functioning at both home and my job. I NEED the medication that WORKS but I can’t have it because of all the red tape and inability to afford it.

    • #102559

      I’m finally figuring out what works. I have to take Adderall XR in the morning and another Adderall IR around noon. This seems to be working well so far. Still frustrated with the Dr. Appointments, and like you, dmvaughn00, I’m still trying to figure out how to afford all this. At least there’s hope.

    • #105978

      i feel your frustration. i identify with the inability to keep it all together at home and at work, and while your doctors are using you as a human guinea pig deciding their treatments, your life and productivity is going down the tubes!
      I finally found a great Doctor Who is willing to work with me with a specific treatment plan and it’s fantastic!
      My son was also diagnosed with ADHD and my struggles with his doctor and medicaid make me want to tear my hair out! I have so much anxiety every single month when I try to refill his medication because it’s always a struggle And I always end up feeling like i am being judged.
      With me, i have my prescheduled monthly appointment the same day, same time. I bring my prescription to the same pharmacy and pick up my meds at the same day, same time, NO ISSUES!
      To get my sons meds, he can only see the doctor for a med check once every 3 months. So i call the doctors office on a monday morning. the receptionist gives the message to the nurse who usually Forget to give the message to the doctor until I called back again On Monday afternoon. Then they tell me that my son is not due for his refill until Tuesday and they will send the prescription on Tuesday. I will wait and wait for the pharmacy to tell me on Tuesday That the medication is ready until Tuesday afternoon to find out that the doctor never sent it over. then I will have to argue with the people at the doctors office that he needs his medication in order to go to school and can they please send it over to the pharmacy. Then I will call the pharmacy to find out that the doctors office finally Sent over the prescription but The insurance will require the doctors office to send over A prescription referral so I will then talk to the receptionist all over again and beg them To make sure the nurse actually sends the referral which could take up to 48 hours for the insurance to process, and then I have to keep calling the pharmacy multiple times asking if the referral has been sent… And finally when the referral is sent and the pharmacy gets it, they then have to order the medication because they cant keep it in stock. So usually by Friday, after I am in tears for four days, and my son hasn’t had medication for three, we are able to pick up his pills.
      I just don’t understand why it has to be such a hassle every single month!

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