some more about me, and at a loss for words

Published April 4, 2013 by emotionless brain

The past couple of weeks I have been reading numerous articles about ADD/ADHD, and how it is an over used diagnosis. Let me share some of my experiences with this subject.

I am in my mid 40’s (a lady never divulges her true weight or age), when I was a kid there were no “diagnosis”, either you functioned or you did not, sadly I was one that did not. My parents took me to different therapies, testing, etc. Somehow I was only labeled “problem child”, no medication (looking back I am thankful now), no nothing. When I was 13 I was sent to a boarding school, it was “residential treatment for emotionally disturbed children”. Again went thru lots of testing, assessment, and still no diagnosis (and fortunately for me no medication, the medications back then were horrible). I never was able to get past the first year of college, no small surprise I could not sit still, and as a working young adult the local community college all the classes were at night (night is the worst for concentration).

Fast forward to my early 30’s, actually it was even after my son was born, many counselors, therapists, and doctors later someone finally put a name to what my disability was, ADHD, and prescribed medication. Talk about a transformed person, I was able to sit still, I was able to watch a movie, I was able to not have to bounce off the walls. And, the best of all I began to find measurable successes in life, namely maintain employment. Sadly my marriage was not one of my successes, not sure it should have survived as long as it did (another story another time).

Now it has been a few years and my medications have changed (fortunately science has improved, and so have the medications prescribed for anything not just brain drugs. I have found a synergistic combination of Strattera and Vyvanse that works well for me, on the weekends I sometimes skip the Vyvanse if I do not need to focus (taking speed all the time gets tiresome), I try never to miss a dose of Strattera (I do not feel so good when I miss a dose). Add insult to injury I am also one of those people that metabolizes really quickly (not uncommon in ADHD’ers), I am thin build, and when I used to go to the gym I was very muscular tone with definition. So I require higher a higher dose of some medications (especially the stimulant ones), a couple of years ago I did “Nexalin” treatment and it worked! I was able to get off all the anti depressants (and have never felt better). I am not trying to advertise, but it worked it was money well spent (probably saved my life too).

The point I am trying to get to here (a few squirrel moments later) is that because I require higher doses to get efficacy my insurance also requires what they call “quantity over ride”. The FDA maximum approved daily dose if Vyvanse is 70mg, this dose does not work for me. I have tried more than once, I probably could even do better at 90mg, but I stick to 80mg. To be able to get to 80mg (the medication does not come in 80mg) I have to take two 40mg caps, the insurance will only allow one cap a day (FDA guidelines) no matter what the does is. Yes there is that much of a difference for me between 70 and 80mg. Last August my doctor did a “quantity override” no problem (only good for six months, not the standard year because it is a controlled substance, whatever). Well It was time to get my rx filled last week, and after going to the pharmacy learned the override was expired. Keep in mind this is a controlled substance and cannot borrow, beg or steal extra, and without the medication I am dysfunctional. In Saturday’s post was a letter form my insurance company denying the request for “quantity override” because in the pat 160+ days I have had #300 pills, equivalating to 1.6 pills a day, and they have labeled me a “non-compliant” patient. They will only allow this “PRIVILEGE” to individuals who follow doctors orders and take medication as prescribed.

I was in total shock and disbelief. WTF!!! Who do they think they are to dicktate (pun intended) my treatment, or how I am SUPPOSED to be taking my medication. Most importantly I am now out of medication, how am I supposed to be a functioning member of society? How will I maintain employment if I cannot sit or focus on my work. For those of you who are not effected by this you cannot “set your mind to it and make it work”, it just does not work like that. On this flip side I would think the insurance company would be happy not to have to have supplied the approximately 38 days over the past six months of medication thereby reducing cost tot hem too. No, I am now labeled “non-compliant”. My next question is “have they checked with my prescribing doctor (who by the way I have been with for over 10 years, and who has been practicing medicine for close to 30 years) to see if there is an explanation, or if they have any knowledge about the “non compliance” to taking medication.  Nope, they just denied, my doctor is as livid as I am.

The message I get here is if you take too much you are a drug abuser, if you take to little you are labeled “non-compliant” and denied any medication. Talk about mixed messages, and putting absolute chaos and mayhem in my life at the moment. Add insult to injury my doctor is out of town (her eldest daughter is having a baby boy, her first grandchild), fortunate for me I am able to contact her on a personal level outside of work, while she is waiting for her first grand child to be born she is also writing my appeal letter and mailing me a new RX for the lower dose Vyvanse (cannot not take anything even if it does not offer full efficacy).

I used to never go to the doctor, now I have to go once a year because I take this medication that FDA guidelines mandate certain blood testing be done to ensure no hepatic impairment or toxicity, and I am also at the point in life when they say you should get certain other blood tests done regularly (lipids, thyroid, etc)  While I believe mammograms save lives, I am not a well endowed female (my boobs are small)I am controversial about having a mammogram done. I had my first one when I turned 35, and that was the last one I plan to have done. Cancer runs on both sides of my family (both parents died of different cancers) breast cancer does not run in my gene pool (fortunately).

This week has been somewhat treacherous for me. I have been incredibly apprehensive about all of this. I cannot nor do I want to imagine myself without this medication. I am great now without the antidepressants, not this stuff this is my life line.

To all of those that are parents of ADD/ADHD or have loved ones with it, or know someone who knows someone with it, it is not a game nor is it something that can be controlled. Until you have found the right medication or combination of medication life is indescribably difficult and possibly unlivable (I do not mean death when I say “unlivable”). I could not imagine ADD without the H, it would make me crazy to sit still and not be able to focus, moving makes it easier when I cannot focus.

I will blog again when I know what the outcome is of this nightmare (I thought nightmares were outlawed).

 

Life is good, the kids are in bed dreaming about the trampoline we will be getting, the furbabies are dreaming about all the new chewies they have, feathers are dreaming about what kids of yum yums they will get for breakfast tomorrow.

 

 

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3 comments on “some more about me, and at a loss for words

  • I was diagnosed as a small child as having ADHD. The medication did nothing. Later in life, I got tested again, as I have a lot of difficulty in coping with touch/taste/smell, as well as serious trouble with maths and coordination – this can manifest itself as a difficulty in concentrating, with regards to the sensory stuff. I was, thankfully, re-diagnosed. There’s something called Sensory Processing (or Sensory Integration) Disorder, and a lot of people get misdiagnosed because the symptoms can be very similar to ADHD and/or dyslexia. I do recall the horrible responses of ‘Well, just control it.’ These sort of replies even came from my grandmum and teachers. It’s still a response said shockingly often these days! Fortunately, therapy and exercises can help moderate the sensory side of things, and I’ve improved a little… but I can empathise with where you stand, a little.

    As to your prescription, that is… atrocious. I can’t even imagine. I like the UK’s health system so much better in that regard; telling my English boyfriend about your situation, apparently that would not be tolerated here. I really hope it gets sorted for you. :/

    • You have opened my eye to something new here, SPD. While sitting at my daughters soccer practice (wishing I was at home in a non sensory overload environment) I googled SPD, wow, um that plus ADHD describes me and my son perfectly. He has ADD and ODD (and probably a touch of SPD), while I was not diagnosed until mid 30’s with ADHD (possibly bordering on Aspergers). I always thought the sensory overload was from the ADHD/ADD, now it makes sense. Now, I have to learn how to deal with it as an adult, my son well he has anger issues to work out before we can think about anything else.

      As to the medication, I have had to change my whole regiment, and are still adjusting (change is good right?). Socialized medicine has its advantages, as well as disadvantages, all systems have both.

      Thank you for your kind and supporting words, I love your stories about Mish and Pitak!!!!

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