What’s Your Biggest ADD/ADHD Issue?

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  1. The cost of the medications….. take both Vyvanse and Adderall and do not have insurance, the cost is over 400.00 per month and I cannot afford it.

    Physically the biggest challenge is managing the dips, seems I am not as level as I used to be on my medication and I feel irratable and foggy headed early in the day,,

  2. My single, biggest challenge right now is a combination of dealing with boredom/downtime coupled with the fact that even though I have necessary things to do that would fill up that time (ie, organizing my at-home workspace, making phone calls, etc) it is hard to motivate myself to do so.

  3. For me, biggest need is to manage work. I am in a fast paced job. It is not easy maintaining control for some one who does not have add.

  4. i am a recovering drug addict and i my doctor knows this, however he perscribed vyvanse 40mg once in the morning. i am doing very well since starting the medication. im just wondering if i should worry about relapse potential with this drug.

  5. Please forgive all my typos. This ran way longer than I’d expected (got me on my soapbox) and this typing window is quite tiny.

    I also decided to copy what I wrote and add it as a comment here.

    As an Adult with ADHD and also a long history of bouts of sleep paralysis (scary when you don’t know what it is, not bad once you understand it) and mild narcolepsy (the sudden need to just lay down and sleep for no good reason — my doctor described it well as “sleep hunger”), my symptoms are 90% managed with the ADHD meds I’m on.

    72mg of Concerta works well for me most of the time. I’m a 210 pound “burly” kind of guy who’s a volunteer firefighter and works out at Karate a couple of times a week, so that’s a pretty low dose from what I understand. It also seems to entirely cure my weird sleep issues — something I noticed the first week I started on Ritalin. Until I mentioned this positive side effect to my Doctor, I didn’t know my sleep issues were abnormal. She explained to me that ritalin (and similar) are frequently used to treat those as well, so I lucked out.

    For me, the Concerta lasts until about 3:30 or 4 in the afternoon. Usually by that point I’ve got a good rhythm and focus going and just work through the day without any problem.

    My doctor also renews a scrip for 10mg Ritalin (the classic 4 hour kind) once every year or so, which I use very occasionally when I need to deal with a crowded, noisy place or tedious people after about 5pm. That’s a double edged sword though, because it means you’re awake for at least the next 4-6 hours. You have to be careful when you take it.

    I’ve tried Focalin and Ritalin XR — but I seem to burn those off way too quickly. My daughter was on the same dose of Concerta as I, but seemed to burn it off much quicker even though at 70 pounds lighter it seems like a high dose. We noticed it alot when I was teaching her to drive. Afternoons could be scary. For a while we split her meds to have 36mg in the morning and 36mg at noon and that helped, but we recently switched her to Vyvance at 70mg — again, I think this is high, but she’s doing well so far at that dosage.

    My biggest concerns/complaints about dealing with this are (in order):

    1. The meds are amazing and really help, but they’re also pretty harsh. The concerta hits me a little too hard first thing in the morning and I get irritable — then as it wears off around dinner the drop can be pretty hard and the effect the same. I did try the Vyvance (given my daughter and I were on the same dose of Concerta) and found it far smoother — but the 70mg was too much and I couldn’t get to sleep until the wee hours of the morning. I’m planning to try it at 50mg and see how it goes.

    2. The insurance company. For a long time, they wouldn’t cover these drugs or the doctor visits as regular medical needs and called them “mental health” issue. Those were covered, but nearly every time I made a claim they sent back forms to be filled out and sent back within 30 days or the claim would be denied. Like anyone with ADHD, I had to be extremely rigid and detailed in tracking them or I’d never get them turned around. I sent a note back with one of them once that said “If I could do that reliably, I wouldn’t need the damn meds.” — they didn’t get the irony at all, but they did eventually pay the claims.

    3. The lack of knowledge on the part of educators about exactly what it’s like to have ADHD. I had a terrible experience in school and I look out to make sure my kids don’t have the same. I’m a professional now with a strong career and reputation, but I could easily have ended up in street if my education was the only factor.

    I try to meet with the kids teachers at the beginning of the year and explain it this way. I say, “while we’re in this meeting, if I tell you you must keep an eye on the clock, and blink your eyes every 10 seconds — no more, no less — you are physically and mentally capable of doing that. If I then start to talk to you about something and notice you miss your 10 second mark, I’ll point it out. Then it gets harder. You’ll be “in trouble” for not paying attention every time you miss. You’ll quickly become frustrated, and when it goes on a while you’ll get angry. If I convince you that it’s your fault, you’ll also tend toward some lovely self loathing. Even though you don’t intend to miss your 10 second mark, you’re still in trouble. You’re not doing it on purpose, it happens when you’re not paying attention to it.”

    Usually, the teachers look at me with a completely new expression after that — like they suddenly get it.

    Our kids don’t know how to relate the difference to someone. They’ve never been the other person and they’re not as articulate. We have to do that for them.

    I hope this helps someone with their kids.

  6. I have two sons (age 16 and 20) diagnosed with different forms of ADD/ADHD. The older son has the more severe short term memory issues as well as coexisting Tourrettes Syndrome and social phobia with a certain degree of depression (he describes this more as an apathy and lack of motivation). He has always been a light sleeper and fatigue is a constant although in the past he has described feeling more attentive later in the evening. He also has a mild problem with speech fluency at times due to a problem with word retrieval. My younger son has more energy and does better socially, but, has also battled with disorganization and seems to have a coexisting obsessive compulsive disorder with a tendency to sullenness or downright irritability and anger (this developed at pubescence). Unlike the stereotype, my older son has an amazing ability to write and was always a gifted reader. The younger son was more fidgety and kinesthetic and did not appear to enjoy reading fiction as a young child, although he has since developed a penchant for reading anything nonfiction that interests him. He too, has developed a gift for spelling and writing, which do not always fit the stereotype of ADD. The older son is a dreamer and seems “out of it” from time to time. The younger son, on the other hand has a combined street smarts and seems to absorb information like a sponge. He does seem to have a degree of graphomotor deficit which is a fancy way of saying his hand writing is very messy and not always legible. The older son always kept a very neat notebook which was used as an example to the other kids back in his grade 6 class. I have described both sons at great length here.

    My greatest issue with the younger son is his low tolerance threshold and the degree of irritability he often displays. Maturity, a solid committment to his exercise regimen, nutritional supplementation and use of computer software to enhance cognitive function and short term memory have produced a remarkable turnaround in his ability to organize himself and stay focussed at school (we still have a way to go concerning his room though).

    My greatest issue with my older son is his lack of motivation and self esteem. He has many gifts and is a gentle, kind, tolerant and very artistic person, not to mention a very good looking young man, so, overtly he has absolutely no reason to be so hard on himself. He is 3 weeks into a Strattera drug regimen. I am not one to put all my hopes in a drug as I feel this problem requires a multimodal approach and am not sure if more gains are to be made with this or an antidepressant. However, with this young man time is definitely wasting and it is not much of a life spending his days in the house while the rest of us are at work and/or school.

    My greatest issue with our current medical system is the unwillingness of most doctors to think outside the box when it comes to ADD/ADHD. Many hang their shingle out as experts, but, it seems there is little magic out there when it comes to treatment (at least for those with coexisting conditions). As a mother I have had to advocate for both sons in terms of combined treatment approaches and not just experimenting with drugs. My older son has just begun counselling in Cognitive Behaviour Therapy and again, that was at my suggestion. We had a psychiatrist respected in the field of adult ADD diagnose our older son, but, he does not treat. He apparently “mentors” the GP. Our GP is not that comfortable with treating ADD. We then took both boys to a Pediatrician specializing in ADD/ADHD. His suggestions have been drug related only.

    Dr. Handelman, I applaude your willingness to broaden the scope of the treatment to include those other options where research shows promise. I wish there were more doctors with the vision to go beyond the status quo. Thank you for your efforts. I wish we currently lived in Oakville (I was raised there).

    Much Support,

    Sue

  7. My doc took no kind of “baseline” and so how do I know how well the meds are working? I am a poor self-observer, which I believe many ADD adults are.

    Frustrating… It has to be better than this… If I can answer the most severe on the WHO 18 question screener, seriously are my meds working? (Rhetorical questions…)

    Venting here….
    MK

  8. I cannot decide whether or not I really have an attention deficit disorder of some form. In a way, I feel like I’ve researched it too much to know simply because I could recite from memory all of the medicines, side effects, symptoms and dosages without much effort – But I definitely suffer from motivation problems, that I know. I sit down to do homework and 9 times out of 10, i try for hours to get it done but end up either daydreaming or doodling. This leads to mediocre grades (I compensate with my extremely high test scores, which oddly come without studying — seems I just have a very good memory of what I’ve heard in class) and that worries me, because as a prospective biomedical researcher and someone who knows they want their PhD in genetic research I know already that I’ll be required to work hard, diligently and do my best to not deviate from my work when inappropriate if I am to have any hope of making it in my field. Does ADD/ADHD apply to motivational disorders, or is that an entirely different classification of disorder? (The easiest way to describe my lack of motivation is that everything in school seems like complete busy-work, like I can’t make myself find meaning in my homework because its so simple, despite the fact that I’m in advanced classes, which I chose as an attempt to dissuade myself from that lack of motivation.) Unfortunately, it only seems to have gotten worse over the past year — but I’m also nervous about asking for a prescription because it took me a good three years to convince my parents to let me be prescribed clonazepam for my terrible insomnia, and they may see it as me just ‘trying to get drugs’ which would be extremely discouraging and make it impossible for me to seek help of any (legal) kind. That being said, I have tried self medicating with low doses of other peoples’ ADHD medications and have found that of the three I’ve tried (Adderall, Vyvanse and Concerta) Vyvanse seems to have the greatest positive effects and does not cause me any anxiety or jitters, nor any mood swings (and by god, I can eat while on it!). How should I go about this delicate issue — I know I have to get this taken care of before I’m to be shipped off to college or else things will become much more complicated

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