When I started on my-learning-about-ADHD journey, I found it difficult to find information about things like medication, that were written without a blatant "ANTI-MEDICATION BECAUSE IT IS THE DEVIL!" bias. I prefer my information rhetoric-free, thanks.
Here is a link to an introductory list of ADHD Meds by a fellow ADHDer.
I am NOT offering this as medical advice, or as a substitute for medical care from your own doctor, simply because I found it interesting and helpful. Concerta, the medication that I currently find most effective for my ADHD symptoms is not among the listed...so keep in mind that there may be further options, and that you should likely ask a doctor about them.
Here is another website that I found helpful in learning a bit more for myself about ADHD meds, it's Dr. Charles Parker's blog...he has a book about meds available for purchase, but the blog also contains useful information.
Again, not offered as medical advice. Even if he is a doctor, he's not YOUR doctor, and neither am I!
As for general ADHD information, I also got a lot of my information about ADHD from scholarly articles and journals. I was in grad school at the time, so I had free access to such things online through my school library. If you are a student at a college or university, YOU likely also have this kind of access, and you can and should ask a librarian to show you how to find this information. It is much more useful than the poo that is often published in "mainstream media" articles...it is generally the results of actual scientific studies about ADHD. One of the most interesting things I learned through reading scientific materials, was that women and girls are almost non-existent, until very recently, in the scientific studies. Yes, that's right...we don't exist! Well...we're STARTING to exist...but until recently many of us were diagnosed as bipolar, depressed, anxious...and some of us are also those things...but anyway...some of the language of these scholarly articles may be a little over the top (written in scholar-ese) but they're worth a look...even if it doesn't all make perfect sense, some of it will, and it gives you a starting point for a conversation with your doc, who may be able to translate. Yet others of these articles are perfectly readable by people with normal vocabularies who are not psychologists or psychiatrists.
Even if you are NOT a student, you can access some of that same information through your public library. If you do not know how, that's okay...again, go to the library and ask a librarian if they can access any studies on ADHD...or if they have access to scholarly articles on the subject. I know that through my local public library (and I do not live in a big city or otherwise fancy place) I have access to some of these articles and thanks to my library, I can do it right here on my couch with my ID number from my library card!
You can also ask a librarian for help in finding any books they may have about ADHD, or ask if they take requests from the public, for particular books about ADHD that you may be looking for.
Personally, I think Driven To Distraction is a classic of the genre (for adults, does not talk about kids with ADHD).
Delivered From Distraction is another good one for adults with ADHD.
Is It You, Me, or Adult ADHD is another highly recommended read and it deals with the effects of ADHD on adult relationships.
For perspective on women's issues and ADHD, you might like to try Women With Attention Deficit Disorder by Sari Solden.
And for an interesting personal story, written by someone with ADHD, try Bryan Hutchinson's One Boy's Struggle.
These books are all available for purchase online but remember, if you check at your public library first, they may have it available for FREE. If you're like me, and have a hard time remembering to return library books, find a way to remind yourself, or just read books at the library itself, in installments!
That should keep you busy for a while...happy information hunting! (And be sure to check out the blogs I've linked too, on the right-hand side of this page...they are informational, interesting, and chock full of stories about life with ADHD.)
Here is a link to an introductory list of ADHD Meds by a fellow ADHDer.
I am NOT offering this as medical advice, or as a substitute for medical care from your own doctor, simply because I found it interesting and helpful. Concerta, the medication that I currently find most effective for my ADHD symptoms is not among the listed...so keep in mind that there may be further options, and that you should likely ask a doctor about them.
Here is another website that I found helpful in learning a bit more for myself about ADHD meds, it's Dr. Charles Parker's blog...he has a book about meds available for purchase, but the blog also contains useful information.
Again, not offered as medical advice. Even if he is a doctor, he's not YOUR doctor, and neither am I!
As for general ADHD information, I also got a lot of my information about ADHD from scholarly articles and journals. I was in grad school at the time, so I had free access to such things online through my school library. If you are a student at a college or university, YOU likely also have this kind of access, and you can and should ask a librarian to show you how to find this information. It is much more useful than the poo that is often published in "mainstream media" articles...it is generally the results of actual scientific studies about ADHD. One of the most interesting things I learned through reading scientific materials, was that women and girls are almost non-existent, until very recently, in the scientific studies. Yes, that's right...we don't exist! Well...we're STARTING to exist...but until recently many of us were diagnosed as bipolar, depressed, anxious...and some of us are also those things...but anyway...some of the language of these scholarly articles may be a little over the top (written in scholar-ese) but they're worth a look...even if it doesn't all make perfect sense, some of it will, and it gives you a starting point for a conversation with your doc, who may be able to translate. Yet others of these articles are perfectly readable by people with normal vocabularies who are not psychologists or psychiatrists.
Even if you are NOT a student, you can access some of that same information through your public library. If you do not know how, that's okay...again, go to the library and ask a librarian if they can access any studies on ADHD...or if they have access to scholarly articles on the subject. I know that through my local public library (and I do not live in a big city or otherwise fancy place) I have access to some of these articles and thanks to my library, I can do it right here on my couch with my ID number from my library card!
You can also ask a librarian for help in finding any books they may have about ADHD, or ask if they take requests from the public, for particular books about ADHD that you may be looking for.
Personally, I think Driven To Distraction is a classic of the genre (for adults, does not talk about kids with ADHD).
Delivered From Distraction is another good one for adults with ADHD.
Is It You, Me, or Adult ADHD is another highly recommended read and it deals with the effects of ADHD on adult relationships.
For perspective on women's issues and ADHD, you might like to try Women With Attention Deficit Disorder by Sari Solden.
And for an interesting personal story, written by someone with ADHD, try Bryan Hutchinson's One Boy's Struggle.
These books are all available for purchase online but remember, if you check at your public library first, they may have it available for FREE. If you're like me, and have a hard time remembering to return library books, find a way to remind yourself, or just read books at the library itself, in installments!
That should keep you busy for a while...happy information hunting! (And be sure to check out the blogs I've linked too, on the right-hand side of this page...they are informational, interesting, and chock full of stories about life with ADHD.)
Thanks for mentioning my book, Katy. I worked very hard to include in it strategies on getting the meds right, including a protocol from a top ADHD expert, Margaret Weiss.
ReplyDeleteThe sorry fact is, MANY (if not MOST) adults with ADHD are getting truly shabby medical care. I heard the stories every day -- and have for 10 years.
ADHD is truly a condition where you must self-advocate, and if you can enlist a good friend/family member to help, all the better. Two heads are better than one, when it comes to parsing what the physician says and when it comes to evaluating the physician!
Moreover, so many of the existing books just list the medication options, without any mention of how the process should go. The assumption is that your physician will know, but too many do not! And that's the problem.
Great points, Gina.
ReplyDeleteI definitely agree that there is little info out there about how the process should go. Also little about the variables you may run into, the fact that meds might not work well at first, might not work for you at all while another med might work great...I said to my prescriber once, when HE was getting frustrated with the amount of trial and error I was going through "hey, it's ok, I knew there would be some experimentation involved here" and he replied "but usually not this much!". My experience (as detailed in this blog) might be a little extreme because of my med sensitivity, but it certainly makes the point that trial and error is often part of the process. Patience is needed...and you HAVE to educate yourself. I just wish someone (even my therapist! who is great! wait, I don't think she did...) had said (nobody did) that it was a process...and not necessarily short one. However, I'm not complaining...I am doing so much better than I was a couple of years ago that the time investment is worth it.
One surprise to me...was that I at times have been "part of the problem". Sometimes I think that when the meds are working (making me feel calm and untroubled and less anxious) that they're not working because it doesn't feel like they're DOING anything. It's resulted in a couple of "too high!" dosages that have had to be scaled back. Oops! And I work really hard to educate myself!
But yes...many get bad medical care for many reasons. Educating ourselves is one of the best tools for sorting through the crap.
Katy,
ReplyDeleteSomehow I suspect that doc's other patients just might not have been as smart or as observant as you. ;-)
So, he probably didn't know how sub-optimal their treatment actually was. And perhaps neithe did they! I see this all the time! They're really not expecting much -- they've been disappointed before -- and that's exactly what they get!
As for you being "part of the problem," you're not the only one. It's what often happens when the treating physician employs no objective metrics, such as treatment targets and rating scales.
Based on the evidence, I always recommend that people with ADHD who are starting treatment record their "pre-treatment" challenges in a little book that will be devoted to nothing but their medical treatment. And then they can note their progress in more objective ways.
Otherwise, you're depending on "how you feel" -- not objective!
I suspect this is why so many people prefer (and even abuse) Adderall -- because it gives that "buzzy" feeling that tells you it's working! But sometimes that buzzy feeling means it's NOT working, and it's making the person more irritable and even can lower self-awareness. Not a pretty picture.
The other big problem, as I see it, is that our medical care is so compartmentalized. I've been experiencing this with a "simple" foot injury. Of course it's an order of magnitude worse when "brain issues" that also can involve the rest of the body (food sensitivities, general nutrition, thyroid, hormones, etc.) are involved.
Some docs ARE very helpful in this regard. For example, I have loved Dr. Parker's blog for many years (and now his medication guide) because he touches upon so many of these issues that comprise the all-important Big Picture.
Sorry to go on. Obviously, I am passionate on this topic. ;-)
And I still love those little fishies!
g
Your point about a notebooks=RIGHT ON. I am very good about using a notebook to record things relating to therapy (things I want to remember to bring up, or notes about things my therapist says that I want to remember later) but honestly it took me a while to figure out that a med journal might be helpful...and even though I recommend that other people try it, I haven't done it yet! (Classic ADHD symptom? Telling others what to do but not taking own advice? Ha...). Incidentally I feel pretty good about my meds right now and have ended up going from 36 mg of Concerta, to 50-something, figured out that was WAY too much precisely because I could "feel" it and now am aok at 18mg (I'm med sensitive and a generally tiny human.) so that I can self-adjust to 36 on days when it might benefit me (my hormones seem to cause some issues at times and being able to adjust to that is important). That's for days when I really need to invest in some focus...for other days, when I maybe just need a booster, 5mg of Ritalin gets me through a few hours of taking care of business (since I have some activities where I'm really better off not being super focused). But I can see how proceeding with more of a plan could be a good thing/would have been good at the start. I definitely feel like there were problems at first when my prescriber was relying on FDA recommendations...guess what FDA, women who weigh 118 lbs don't need the same amount of meds as a dude that weighs 200. I see why they have guidelines, but those guidelines have screwed me more than a few times now. Now that he knows me and my med sensitivity better he's very cautious about increasing meds and likes to start me a looooow dosages. Way too much info but hey, this is a blog, I guess that's how blogs roll...
ReplyDeleteDr. Parker's med recommendations, in my non-medical opinion are pretty brilliant. Made me look at meds in a totally new way, and he makes so much sense. I actually read his recommendations and thought "thank goodness there are people like you out there Dr. Parker!". Cheesy...but true :)
I feel like another issue is not being able to get appointments closer together. When I have a huge problem I'll call my dude, but if it's just "sort of" a problem I sometimes have to wait 4-6 weeks to get in for an appointment!
ReplyDeleteLots of great points Gina...
Thanks for the kind words and helpful list.
ReplyDeleteIt's important for people with ADHD to get access to reliable and high quality information.
There are a lot of misconceptions that can be spread, especially sometimes a negative perception towards medication.
ADHD medications are very potent and powerful, but the attitude towards them online is not always reflective of their efficacy and so on.
Keep up the good work!
Katy - you're absolutely right that there is a significant problem when people are prescribed an ADHD medication and it is not the right dose for them.
ReplyDeleteAt too high a dose, they can cause nasty side effects, and if someone is taking Ritalin for the first time and they get that nasty side effect, they may be too scared to realize its benefits.
Also, you may be onto something with the hormones. I have read that estrogen does somewhat effect the efficacy of the Adderall type treatments.