Final Follow-Up results
August 15, 2008
I will start off with a baffling statistic that my doctor told me about yesterday.
The Mayo clinic has done research on children that were treated successfully with ADHD stimulants. Out of the study, 25% of those kids actually had a sleep disorder instead of ADHD.
Does that surprise you? It surprised me. If they were treated successfully with stimulants, then don’t they have ADHD? Well, the stimulants helped them during the day to stay alert and more focused because they weren’t getting the deep sleep or regular sleep cycles they needed at night. These kids were damn tired. My doctor said these same kids will be 5x’s more likely to have a chemical addiction sometime in their life because they were treated with possibly addicting stimulants when in actuality – they had a sleep disorder instead. If I were a parent of a kid being treated for ADHD – I would get my kid in quickly for a sleep study. What have you got to lose?
Can you see where i’m headed here with my own ADD issues? Yep, that’s right. After all this testing the doctor determined quite a few findings and because of a few discrepancies - they don’t add up to ADD.
Here is what he found:
1. My brain wave scan showed that the back of my brain showed Delta (or sleep waves) and that I was either highly doped up on drugs/alcohol OR that I may have a sleep disorder. (well, having kids will do that to you.) I rarely use alcohol and never use drugs, so the latter is probably true.
2. The center of my brain showed major Beta (or anxiety/concentration) waves, but he said my ratio of Beta 1 to Beta 3 was WAY off – so I have a very, very overactive brain! Therefore stimulants are not for me. The neurologist reported that it showed anxiety, excessive worry, rumination and vigilance.
3. My body is taking a big hit physically from all the Beta activity because it can mean high anxiety, fight-flight-freeze, and major levels of cortisol, hormones, and adrenaline are being released too easily because of how I am wired. All of this is affecting my major strengths – Visual memory and attention. Not good. I can’t even draw enough from my strengths because of all this Beta activity buzzing.
4. I tested very high on the depression/anxiety scales – he was very concerned about that and wants me to seriously consider going back on an SSRI. I’m not so fond of that idea, but i’m going to really think about it. He says that I don’t have enough feedback from other adults – I don’t have a feedback loop and that my world is getting smaller and smaller. It’s a social anxiety thing and I know it.
5. My IQ showed that I am highly intelligent (thankfully) and that I have “learned well” – up to my IQ’s potential. He said that if it was ADD – that there would be a difference between my IQ and how well I learn new things. My biggest strength was in the visual memory category. Weaknesses were Auditory processing and a possible math learning disability.
Some of his recommendations (and I will be getting a 15-20 page written report with all of this info) is:
1. starting a regimen of high quality Omega 3’s – he suggested the brand Omega Brite, as it is manufactured in a facility using nitrogen and each capsule is individually sealed for optimum quality.
2. Purchasing a little biofeedback machine from a company called Heart Math. It’s a little portable machine that I can use when I am stressed or anxious that will give me feedback and retrain my brain to not release the fight/flight/freeze response so easily. The model of the machine is called “EM Wave”. Go to www.heartmath.com
3. Daily excersize to even out my anxiety and moods. He said that there’s a great book out by John Ratey called “SPARK”. It talks all about excersize and how it does what NO drug can do. For people that do have ADD – it helps you wake up your brain and focus and for those of us with Depression/Anxiety – it calms us down to help us focus.
4. I need to make an appointment to have a Sleep Study done to see if there is anything else going on with my sleep patterns/cycles that have nothing to do with being up with children at night.
5. He recommended that my husband and I both read another book called “Brain Lock“. It explains how people with the Singulet issues in the brain (where you have a hard time switching gears and moving from one activity to another) can overcome and learn how to unlock those gears. There is a process in the book, step by step on how to do it and my husband needs to read it too – so he can try it with me.
6. He wants me to get some Cognitive Behavioral Therapy – learning how to retrain my brain to not crave negative thoughts for stimulation. Supposedly some brains that are sleepy look for stimulation. Unfortunately positive thoughts are not stimulating enough, but negative thoughts are – so my brain has been on a beating frenzy for years telling myself that I’m stupid, a fuck-up, etc… nice, huh? He said he was reviewing and going over and over my forms, records, etc and he said that he just couldn’t understand why I was so damn hard on myself, that I couldn’t accept that my brain was wired a little differently and that I just needed to accept a little help.
7. He recommended that I look for a volunteer position where I feel confident and could do something that I really enjoy. I said ART would be great – so I am going to look for a volunteer position where I can maybe help out kids with disabilities with art. He wants me to do this about 3 hours/week. I need to expand my “feedback loop” so my social anxiety doesn’t get worse. I fear that one day - I may not ever want to leave the house – thankfully I’m not there yet, but I could see how that might happen.
I’m sorry if I’ve disapointed those of you that may have been following my blog, but hopefully you can gain some insight from it. You may have ADD, or you may not. Seriously consider a sleep study before going on any meds.
My doctor never mentioned ADD during the whole appointment, so at the end I finally asked “So, does all of this add up to ADD??” - and he said no and explained all the reasons why. He felt I wasn’t lacking in dopamine in my brain’s frontal cortex and also because of my IQ vs. how well I learn - there wasn’t enough discrepancy. Also, the neurologist has a ‘marker’ for ADD and I didn’t fall in that category afer she reviewed my brain wave scan.
But he said a lot of my symptoms/behaviors ARE consistent with an attentional disorder.
I have a lot of work to do … and it’s overwhelming, but I am satisfied with the final outcome and I hope that I can implement these changes and that I will be able to see a difference in my life.
I’m supposed to go back to the clinic in 6 months and they will test me again on attention to see where I’m at.
If you are interested in learning more about the clinic I went to – shoot me a comment and I will forward the information off in an email.
Entry Filed under: ADD, Attention Deficit Disorder, anxiety, depression, mental health, tough days. Tags: ADD, ADHD, Adult ADD, anxiety, art, art volunteer, Attention Deficit Disorder, attentional disorder, Beta brain waves, Brain lock, cognitive behavioral therapy, cortisol, delta brain waves, depression, dopamine, family, Heart Math, John Ratey, kids with ADHD, Mayo Clinic, mental health, Omega 3's, Omega Brite, Parenting, sleep disorders, sleep studies, SPARK, Stay at home Mom, stimulant medications, stimulants.
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1.
The Informal Matriarch | August 19, 2008 at 1:49 am
Wow interesting.
I’d think if the doc who doesn’t prescribe drugs wants you to take drugs then maybe he’s right?? I’m a hater of drugs like crazy too.
I think the book Change Your Brain Change Your Life by Dr. Amen might help you too
*hugs*
2.
ADD Mama | August 19, 2008 at 2:42 am
Yeah, I just made three appointments today. One for the CBT therapy, one for a psychiatrist, one for a sleep study… I feel like a bit of a mess.
My doctor follows the philosophy of Dr. Amen and has done studies with John Ratey & Ned Hallowell – so I felt like I was on the right track – seeing a doctor that was on the up and up when it came to all of this information. He’s a great guy – you would like him.
Thanks for the message.
3.
Cody Beavers | August 26, 2008 at 1:10 pm
I feel i was also misdiagnosed and just overcame 4 years of opioid abuse, and feel like im stuck in a lifetime of medication. . . reading your post just made my day. Im really sorry this happened to you. everything you mentioned has been hanging over my head, for a while. Im feel for you, and I know what the feelings are like, I Feel alot better knowing im not the only one.
I hope this comment gets to you fast, Im a 22 year old college drop out, that has struggled with abuse to substanceses since highschool. Im a recovered alcoholic, and recovered junkie, and adderall is the only drug i take and ready to kick it as well.
from the looks of it not to many people asked for help, but you did give one person alot of help. that info will be appreciated
thank you
4.
ADD Mama | August 26, 2008 at 1:34 pm
Cody –
I hope you’re able to find the help you need. Was the adderall prescribed or have you found a way to get it? I was floored to hear that you are taking it, because i know a psychiatrist probably wouldn’t prescribe it to someone that has had any drug/alcohol addictions in the past. So – i assumed that maybe you had found a way to get it otherwise? No judegements here, just curious.
You are still SO young – keep working at finding the answers to how you feel. Hopefully you won’t be doing what I’m doing at the age of 36! Not that it’s been all bad or anything, but I wish I would have done this assessment when I was in my early 20’s. I think my life & job situations would have had more quality moments.
hugs to you – and good luck!
5.
Debra B | January 13, 2009 at 9:24 am
Hello,
I’m a new reader and came across your blog while searching for the benefits of Omega Brite for ADHD patients. When I read your 8/15/08 entry, I was fascinated by your experience and the idea that 25% of kids treated for ADHD actually had sleep disorders.
I recently read Nancy Ratey’s book “The Disorganized Mind – Coaching Your ADHD Brain to Take Control of Your Time, Tasks & Talents” (yes, she is John Ratey’s wife). It had never previously occurred to me that I might suffer from ADHD, primarily because I have worked for many years in a highly stressful financial business. But I found myself relating to so many of the systems she listed including feeling stuck, overwhelmed, unable to follow through on projects, easily distracted, unable to focus unless under intense pressure, completely disorganized, frequently procrastinating, impulsive, forgetful and easily bored.
One of the points that John Ratey made in his contribution to Nancy’s book was that you should never self-diagnose for ADHD. But I have always been leery of traditional medicine and very uncomfortable about the idea of being routinely prescribed medication without thorough, reliable testing.
I liked the holistic approach that your doctor used. I have also read a couple of Dr. Amen’s books and his recommendations were amazingly helpful. By the way, I have one of the HearthMath’s emwave personal stress reliever devices and I even took a class with their trainer Howard Martin. This is like a handheld biofeedback machine and I find it very calming. The effect is subtle, but effective once you practice tuning-in with it.
Thank you for your inspiration. I applaud you for your courage and commitment and I wish you all the best in implementing your doctor’s recommendations.
I don’t know what area you live in, but I think I could benefit a lot from the types of testing you underwent at the clinic. I also think your doctor sounds trustworthy. If you don’t mind, would you please email me his contact info? I would appreciate it very much.
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