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|Thread : Questioning Diagnosis and Treatment|
|1 May 2007 @ 6:40 AM|
Mon 12th Nov 2007
Threads: 1 Posts: 2
Questioning Diagnosis and Treatment
I have been officially diagnosed with ADD. Twice. The second time (last year) I had forgotten all about the first time (14 years ago) until the doctor said something that triggered the memory. Even then the details are foggy. The first time I tried Ritalin in various lower doses for a little while, then sorta forgot about it when our second child came along. The second time I was a little more intentional about following through and tried everything they threw at me. I have one drawer in the bathroom that looks like a pharmacy. I have tried everything and all I get are sleepless nights, the jitters, and other side effects. The net positive effect of any medication has been zero. Zilch.
I have also tried neurofeedback. They claim an 80% success rate in treating ADD cases without medication. I must be in the other 20%. After spending 8 weeks staring at animated computer screens with electrodes hanging from my earlobes, my "high beta" numbers didn't budge. The doctor and the technicians there keep encouraging me saying, "your numbers look great! You are doing so well!". However, I am an engineer. I work with numbers all day. I practically eat numbers for lunch. I recorded and plotted all the numbers from the 8 weeks and the result was a flat line. I would hardly call a flat line "doing great". Any other medical device showing a flat line indicates trouble. A flat line from a heart monitor means you're dead.
I think very few people would suspect that I have ADD. I have no "H", as in "ADHD", in fact I am one of the most laid back people around. I am also, by many societal measures, successful. 20 years in the field of electrical engineering and seven patents are pretty good window dressing.
So why am I complaining? Why am I spending thousands on treatments that don't work when I could just sail on through life as I am and just forget about this ADD thing? Because the frustration is at times unbelievable. The number of distractions that our society deliberately pipes into our lives is one of the big frustrations. Case in point is the new "wellness center" that was just put in at work. It's a great facility. Stair steppers, weight machines, nice showers, all the trappings of a first class health center, and I can't stand it. When using the stationary bike, there are three big screens in view displaying three different TV channels. And the music being played drills through everything. I feel like a hopeless channel-surfing junkie with my finger permanently stuck on the channel changer button, unable to lock on to a particular channel, but always distracted and drawn by what's being displayed on the next screen. I stopped going. My need for physical health was having adverse effects on my mental health. I just couldn't see exercising with my eyes closed and my ears plugged. I get a fair amount of exercise anyway because I am a naturally active person.
Conversations can be difficult, particularly in group settings. If there is another conversation within earshot of the one I am involved in, my mental radar tries to lock on to that one as well, no matter how hard I try to avoid it. The result is a loss of train of thought and the conversation dies. I have this amazing ability to walk away from a conversation and remember absolutely nothing five minutes later.
Many other elements of "classic" ADD describe me to a "T". I am a hopeless messy, and things laying around often don't even register on my consciousness, to the ongoing frustration of my wife. I am a great starter and a lousy finisher. I have an untold number of projects that I have started and never finished. I lose things. I am highly intuitive. I don't play by the rules, largely because I can never remember the rules. It's much easier just to invent a solution to a problem than to solve it by the rules.
I have been working on coping methods for years and I suspect that they will always be a struggle. I have a PDA which I carry around most of the time. I'll keep a to-do list on the PDA, carry the PDA in my pocket all day long, and forget to look at it. If I make it beep periodically, the beep eventually drives me nuts and I shut it off. My email inbox will sometimes grow to over 1000 messages. Then I'll get on a clean-up kick and clean them all out. Then it slowly grows again.
Maybe it's just a lack of discipline. Many days I'll tell myself, "Today I'm going to be disciplined, today I'm going to be disciplined," and get to the end of the day and realize that nothing of any substance has been accomplished.
To be fair, it's not all gloom and doom. I have had some successes over the years. One coping mechanism I have used extensively is to keep a blank pad of paper next to my computer at work and jot down my thought processes as I go through the day. At the end of the day, this gets scanned into the computer, along with any other memos, lists, data, etc that I have used during the day. I keep this on the computer organized in folders by date. I have tried various software programs which are supposed to help capture though processes, but have always gotten wrapped up in the details of running the programs, which was a distraction from the information I was trying to save in the first place. It's a bit ironic: I am surrounded by computers all day long but still use a pen and paper to track the most important information. But it works.
My wife says that living with me is "an adventure". I'll have to admit, we do get into a lot of different things in a very big way. I do fear sometimes that I will wear her out.
I've read a lot of success stories. Stories of how so many milligrams of so-and-so made a huge difference. What I don't hear about is the less successful stories. Stories like mine where so many milligrams of so-and-so result only in insomnia. It is the lack of success that sometimes causes my to question my diagnoses. To be sure, both diagnoses were made by licensed and respected psychiatrists, but the diagnosis itself is made more on a rigorous series of questions and answers than by some more seemingly objective test such as a blood test.
I could go on and on, however, I need to end this somewhere. Is there anyone else for which the traditional treatments for ADD (and even the non-traditional ones) did not work?
|2 May 2007 @ 7:26 PM Reply # 1|
Wed 21st Nov 2007
Threads: 11 Posts: 358
Stopped my medication
i STOPPED ALL MY MEDICATION BECAUSE I DIDN'T FEEL AS INTUTUTIVE OR AS IF I HAD MY CREATIVITY THAT MY ADD PROVIDES. MEDICATION DID HELP ME FOCUS; BUT INTERFERED WITH SOME OF MY DAILY THING LIKE SLEEP. NO MATTER HOW HARD I TRY I STILL FIND MY SELF SCATTERED; OR FIND I AM EASILY DISTRACTED. I CAN WILL TUNE OUT SOUNDS THAT OTHERS FIND ANNOYING;AND OCCASIONALLY FIND IT HARD TO FOCUS ON PEOPLE WHO STORIES SEEM DRONE. I LOVE TO READ; BUT CAN'T DO MATH TO SAVE MY LIFE. I NEED AMBIEN TO SLEEP; AND IN THE MORNING I HATE TO GET UP. I SEEM TO GET MY SECOND WIND SOMETIME AROUND 10 TO 11 O'CLOCK THAT IS PM. I FIND THAT EXERCISE DOES HELP. ADD FOR WOMEN IS DIFFERENT; I THINK BECAUSE OF OUR RESPONSIBILITIES TO ENTERTAIN ; AND ACT AS IF WE CAN DO IT ALL.MY ADVICE IT DOESN'T REALLY MATTER HOW YOU REMEMBER THINGS JUST DO THINGS THAT WORK. SO GOOD LUCK WITH YOUR ADD. pS i'M NOT YELLING IT WAS JUST EASIER TO KEEP CAPITALS
|3 May 2007 @ 11:46 AM Reply # 2|
Thu 3rd Jan 2008
Threads: 0 Posts: 14
Have you tried any other medications?
You indicate you have only tried Ritalin for your ADD. There are so many new drugs out there. Have you tried any of these? Even though they are the same class of meds they can behave differently. ADHD doesn't have a magic bullet fix. For many it is a combination of strategies and meds that do the trick. Don't give up. Many ADHD folks are very successful but are still frustrated within themselves. Maybe you need to accept that you are never going to be like the adult next door, play to your strengths,offset your weaknesses and try some of the new meds.Your wife can help you keep a log of your reactions and behaviors on meds to help you quantify the results as attention results can be the slowest and most subtle to detect. As for excercise use the great outdoors and bag the wellness center or go during off peak times or wear earplugs to dull down the ambient noise. What ever you try good luck to you.
|12 May 2007 @ 3:52 AM Reply # 3|
Thu 8th Nov 2007
Threads: 2 Posts: 22
Talk to your doctor
Stay in close contact with your doctor and tell him/her what you are feeling. You may need a med dose adjustment or to try something else. I got the right med on the first try but it took awhile to get it adjusted to the right dose. Try to be patient with yourself.
|15 May 2007 @ 12:13 PM Reply # 4|
Sat 10th Nov 2007
Threads: 5 Posts: 265
Some people don't respond to Ritalin
Some people do not respond as well to the Ritalin-type medications but may do well on Adderall. And of course, it is important to get the dosage right and that may take time. Let your doctor know about the problems you are having with the medication. One medication does not work for everyone. There are also some newer medications out such as Focalin which don't have the same side effects. Elaine
|21 May 2007 @ 5:25 AM Reply # 5|
Mon 12th Nov 2007
Threads: 1 Posts: 2
I've tried everything
I've actually tried everything that my doc knew about over the course of several months: Ritalin, Concerta, Strattera, Adderall, etc, in various sizes, shapes, and doses, all with either no effect or some undesirable or even debilitating side effect.
I've heard/read that medication has positive effects in around 75% to 80% of cases (not sure of the exact number). That puts me in the remaining 20%. I just find it a little surprising that I have not heard stories or posts in this or other venues from others in the same situation.
|30 May 2007 @ 1:58 PM Reply # 6|
Were you formally diagnosed?
Were you formally diagnosed? I have a friend whos son spent 2 years going from one med to another, only to find out he wasn't ADHD at all he was bipolar. Just a thought.
|27 Jun 2007 @ 2:22 PM Reply # 7|
Mon 12th Nov 2007
Threads: 0 Posts: 1
You sound just like my husband and son
Wow, from your description you sound so much like my husband and my oldest son (15). They have both tried medication and felt that they could not tolerate it for various reasons. By the way, they both have Inattentive ADHD as opposed to Hyperactive. Both are very calm, my son to the extreme, and are wonderfully kind men.
My son has tried literally everything available including the new Daytrana patch, all with negative side effects. He did take Concerta and then Adderall for over a year with good academic success but he didn't feel like himself, it diminished his creativity and his 'spark'. As an artist and musician, this was too big of a compromise. His doctor suggested caffeine since nothing else was tolerable. As his doctor said, it's not as smooth and he feels the ups and downs more but it does help when he needs to focus.
We ended up enrolling my son in a school that suits his learning style better; smaller class sizes, very interesting teachers that use many different methods to teach (not just lecturing),more one on one support, and lots of art and music opportunities which keeps him motivated and engaged.
With my husband, he felt the benefits of the medication in that he was able to accomplish more and stay on task for a longer period of time but he felt jittery, his heart raced and he had a hard time slowing down and finally sleeping at night. He tried a few different types but finally quit. He has also been very successful in his job which fits his strengths very well so he just relies on caffeine now.
It has helped me tremendously to understand ADD so that I am coming from a place of being helpful and supportive instead of incredibly frustrated and angry about all the behaviors and habits.
I'm not sure if this helps at all, but I just wanted to share that you are not at all alone in not finding a good solution!
|6 Jul 2007 @ 7:32 AM Reply # 8|
Mon 12th Nov 2007
Threads: 1 Posts: 2
Thanks for your input.
lovemy2boys: I think both diagnoses were about as formal as it gets, sitting in a psychiatrist's office, complete with the framed certificates hanging on the wall, although the diagnoses, at least in my case, seemed to be more of a matching the way I am against a list of ADD "symptoms" and declaring that I had enough "symptoms" to be officially considered ADD. For all I know, however, it could be the same as your friend's son, where the "symptoms" actually pointed to something else. Thanks for the thoughts.
Hegego: My brand of ADD is definitely the Inattentive type; there is very little "H" here.
I have a 16-year-old son who shows many of the same symptoms as I do, the largest being he is maddeningly forgetful. We homeschool our children for various reasons, one of them being that formal school was not meeting their needs. For the most part, that has been going well, it allows us to tailor the subject matter, the schedule and the environment to their specific needs. One of the things we are trying to teach my son is a set of coping mechanisms; ways of remembering, for example, that can be used in his adult life.
One of the coping mechanisms that I have found extremely valuable for the last 21 years is my wife, without whom I would probably quite literally fall apart. She has learned a lot about ADD over the years and has been similarly helpful and supportive to me. I commend you on your seeking to understand ADD and all its foibles and to work with your family on that. I know it can be frustrating at times; my wife has expressed that to me on more than one occasion, but she is perhaps the most valuable asset I have. Thanks for your input.
|6 Jul 2007 @ 12:10 PM Reply # 9|
Fri 7th Dec 2007
Threads: 1 Posts: 12
Hi ALL, using the wife as a tool. Good! I have realized I depend on mine too. But we also studied add to an extent and involved a counselor for close to a year. And it works. it got us to open up to each other and admit we both aint perfect. add or no add, we both want to succeed. No? So, the saga continues. We just set a deadline for the next 2 months together. She wants me to hit my deadline as much as me. And willing to help. So, stay tuned for Sept 07. Will let you know how we do with our deadlines and goals. kindest regards, Paul
|3 Jan 2008 @ 9:07 PM Reply # 10|
Thu 3rd Jan 2008
Meds are not necessarily the answer
I am an adult with ADHD and on Concerta. My step-son has ADHD and is on Daytrana (the patch version of ADHD Meds). However, I am about to pull myself off my Concerta because I have found other options. I started cooking all my foods and seldomly eat out. When I cook, I took out all refrined sugar (not all sugars, just plain sugar. I still encourage fruit.) and anything that was bleached (no enriched or white flour or pasta) and lactose. I also removed as many artifical additives as possible. I cook with Splenda, whole wheat flour and real un-salted butter. In the process, I feel better and my ADHD symptons have decreased. My step-son is doing better as well. Another thing I do is to make sure him and I both get our Omega 3's and 6's. This helps greatly. Also, the vitamins we use have more "essential" minerals.
I am not saying that this will work for everyone, but I have done a lot of research about ADHD and nutrition and additives.
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