Episode 2: Shake it Out
Shake it Out is about shaking out my fears and getting on this crazy roller coaster. I discuss what drove me to finally see a doctor and how I went about getting my diagnosis. Learning to manage my ADHD has been interesting to say the least. Starting with medication I went from from a non-stimulant to a stimulant and with each experienced adverse side effects that I am just not willing to put up with. This episode ends a little abruptly because I know I can’t sit and listen to much more than 30 minutes so I don’t want to make you either. I touch briefly on my decision to do pharmacogenomic testing which I will go into more detail on my next episode. In the mean time check this out below about what the testing is and can do.
Pharmacogenomic Information:
https://www.additudemag.com/genetic-testing-adhd-medication/
https://consultqd.clevelandclinic.org/the-pharmacogenomics-of-adhd-treatment/
Full Transcript:
Episode 2
Now you know my journey for the most part, let’s talk about getting diagnosed. Typically I’m short on time like I am sure most people are. I have a full-time job and a family; that includes a husband and three kids. We have homework to help with, I coach my daughters soccer team, did I mention that I know next to nothing about soccer or being a coach? My son plays basketball, which means practices and games to attend. As you can imagine being so busy, I have failed to take care of myself like I probably should. In the interest of trying to save myself time and the hassle of looking for a face to face doctor I used an online doctor. My plan was that by seeing someone online I wouldn’t have to spend gas money or time in traffic or off work. In the area I live in it can be really hard to find a doctor who truly specializes in adult ADHD AND takes insurance as I later came to find out. Anyway, I saw an online doctor he asked me a few questions about why I thought I had ADHD and I told him how I took every online test I could find and all of the questions were yes except for one or 2 questions about hyperactivity even some of those probably should have been yes. I told him about my constant daydreaming and never being able to study, reading the same paragraph 5 times because I was so bored every tiny little thing would distract me and I would forget what I just read then have to start over again. I talked about how in high school and college I never really studied I just skated through somehow. I mean in high school I was in AP English, AP History, precalculus, and anatomy and physiology but I never studied yet somehow I made it through. I think I got a D in pre-calculus but that just kind of goes back to a long history with math that isn’t very good and that goes back to forever as far as I can remember.
Based on things I have read and other online quizzes, I think I have what they call dyscalculia a sort of dyslexia but with numbers I guess but I haven’t been diagnosed. Wikipedia defines Dyscalculia as a difficulty in learning or comprehending arithmetic, such as difficulty in understanding numbers, learning how to manipulate numbers, performing mathematical calculations and learning facts in mathematics. It is generally seen as the mathematical equivalent to dyslexia. Like Dyslexia it is also common in people with ADHD. For me it took forever to learn the multiplication tables and to this day I have to think about them really hard, even some of the easy ones I still don’t remember them like most people. Fractions have always been hard for me, algebra in general and then calculus were the worst. Somehow Statistics in College was easy for me and the first time I ever received an A in a math class. During one summer semester in college I had a calculus teacher who made everything make sense while I was in his class, he explained things to me differently than anyone else ever has but it worked. I don’t think I could do it now if I tried and even then I think I got a C that was just shy of being a B. Fine math and I do not like each other and you know what, that’s ok. I have Excel and calculators to help me when I need them. For the longest time I would just say it was test taking anxiety but it was more than that. I didn’t just have trouble on tests I had trouble understanding what I was doing in my homework. I would have to redo problems several times and would still get them wrong. I would eventually give up on a problem and just write the answer down without showing all of my work. The mistakes I was always making on tests and quizes, the anxiety I always felt while taking the test it was awful. I would put the wrong sign making a number negative that should have been positive and vice versa, I would and still do transpose numbers all of the time or put decimals in the wrong places. I would cheat on algebra tests by writing the quadratic equation and Pythagorean theorem on my hand or a tiny piece of paper even the bottom of my shoe if I thought I could get away with it. Even that didn’t usually help much and mostly I was afraid of getting caught to use what I did. A few times I was lucky enough to have teachers that would allow a one page cheat sheet or a note card, I have never written so small in my life trying to get every piece of information on to that paper. In the end it helped some but I couldn’t always remember where or how to use what. Today I will still use my fingers to count on occasion, I can not CAN NOT do math in my head unless it’s something easy like 20% off $100 is $20 don’t ask me to calculate a tip, estimate tax or discounts when shopping it’s not going to happen without a calculator. My husband and 10yo son can do math in his head better than I ever could, it amazes me how quick the answer comes to them and makes me a little jealous too. But it’s other things too like when I was a bank teller and constantly had trouble with my drawer balancing because I had given someone the wrong money back even though I always counted 3 times. I have a hard time being on time and have to make a conscious effort to do it because for 1 it takes like 5 alarms to wake me up in the morning for 2 I am terrible at judging how long it takes to do things and get from point A to point B and 3 I am either driving too fast or too slow and can’t ‘feel’ how fast or slow I am going the way I should. I am always underestimating another symptom. Remembering names is another symptom which I don’t get but yeah I am terrible with names, faces I can remember but not names. If someone tells me a number to remember whether it’s an account string or a phone number even sometimes street numbers if I don’t write it down immediately and confirm it most likely I will get wrong or will forget it all together. One of my favorite subjects in highschool and especially college was history however in those classes dates are pretty important so guess what? I suck at dates too! Big surprise right. I was always getting the year or even the century wrong or confusing dates because I am horrible with numbers. Another surprising symptom was having trouble learning dance steps. I can totally see that because the steps are usually based on a count of 4 or 8 or 16 etc. in time with a song or in a pattern. Most people can do the electric slide, the cha cha slide or whatever other dance you want to throw in there they may not like to do but they can. I on the other hand am inept I have to watch people the whole time I am never on step always fumbling and believe me I have tried many times since middle school just can’t get it but my 6yo can.
What were talking about again? Now that I had my looong ADHD tangent…Oh yeah yeah ok the Online doctor… I told my doctor about how I felt like I skated through because I never really learned how to study. I mean I knew how, I was taught the process and the steps, I even had assignments in high school and college that you know this is how you do it you fold your paper here, you write this in your right margin, you ask your questions in this column, you take your notes in this column etc. and that was considered a graded assignment. Then you know making notecards for research papers and outlines all of those things. I tried it, it didn’t work, any time I wrote a research paper I had to do it backwards. I would write the paper then the outline and then I would do the note cards because I couldn’t do them in the right order. I couldn’t write the note cards, than the outline, and then the paper like everyone else did I just couldn’t do it that way or it would never get done. Even flash cards didn’t work because they would get all jumbled up I would get bored and forget what I was doing. I wasn’t motivated to any of them so when I studied I used old homework, tests, and quizzes, also the glossary sometimes. This is how it was through middle and high school and then college. Eventually online classes became more popular so I finished the last few semesters of my undergrad and all of my MBA online and that was amazing. I felt like I hit the jackpot. I no longer had to sit in classrooms and listen to lectures that I wasn’t even listening to in the first place. I could use my notes and books and even google to help on tests and quizzes. Really though with the way they laid them out unless you knew the material anyway the other stuff wouldn’t help too much. The tests were timed and you could only see one question at a time and once you answered you couldn’t go back. So you better know where to find an answer if you are unsure if you are right.
I told him about the rest of my symptoms that I talked about last episode procrastination, impulsivity, emotional regulation issues, on and on and how they affected me in school, at home as a kid and an adult, and at work. After about 30 minutes into the session he pretty much was like yeah I think you are right you have ADHD and I’m just like that’s it, just like that?? I was skeptical even at this point after taking all the online quizzes, being told by my husband that he was pretty sure I had it and now this doctor telling me. But he never really said anything else and wrote me a Rx for Strattera it didn’t really do anything at first which I expected because the doctor told me it may take a few weeks. I went on a higher dose of Strattera and then a higher dose until I ended up on 80 mg of Strattera and it was working, it was an amazing difference. The only problem was that it made me physically exhausted all the time. On the weekend I would be so tired I would just lay on the floor in the playroom while I was playing with my kids and fall asleep because I couldn’t stay awake and I had no energy.
After several months of telling him in every single session the same thing I was just so tired I can’t do anything, I can focus but I’m exhausted, he told me he can’t prescribe stimulant medication so I needed to go see a doctor face to face because of state laws. Fine whatever so that’s what I was going to do because no matter how much I felt like the Strattera was helping me Focus I just I couldn’t go through life that tired all the time. I also had this feeling that I was missing out on something, that I needed to try the stimulant because they seemed to work better for most people. I didn’t want to feel like I was missing out on that, I wanted to feel like what I was taking was giving me the best results and I didn’t feel like I was getting that with the Strattera even though it had made a significant difference in my life if that makes sense.
I started freaking out because I needed to find a local psychiatrist and one that focused primarily on ADHD. After talking to a co-worker she told me she had ADHD but it was hyperactive and mine was combination type primarily inattentive, she was telling me how she had to sit behind these computer screens for several hours and it was like a whole day ordeal getting diagnosed. I was told I had ADHD but I hadn’t done any of that so I was really nervous that I would and that maybe the test would say I didn’t have it then what would I do? Yes, I know I am also the same skeptical person that didn’t believe the first doctor. After trying to find a psychiatrist for a while I decided to go through the same group that my primary care doctor is with. After I called and made the appointment I started reading patient reviews because I didn’t know anything about the doctor. I didn’t know what their specialty was or what their credentials were and I started freaking out again because of things I was seeing. Immediately when I open the reviews I saw things like “don’t see this doctor, this doctor is horrible run away” literally someone wrote to run away from the doctor. Another one said “Dr. X said that I don’t have what I was diagnosed with and refused to refill my meds and now my I can’t function” and the reviews just kept going and were pretty much the same. I am skeptical by Nature and I try to take things with a grain of salt and you know everybody always has a few bad reviews and when it’s a psychiatrist (this might sound bad but I really don’t mean it that way I just don’t know how else to say it) how much of the reviews are bad because the doctor is truly that bad and how much of it is a by product of that person’s illness? Anyway, the more I thought about it the more it bugged me then I was like yeah no, not going to see this person and then I would be no let’s give her a chance but the more I thought about it the more anxious I got so I finally cancelled my appointment. Luckily my yearly checkup with my primary care physician was coming up and I talked to her. I told her all about the online doctor and my ADHD diagnosis she asked me the same types of questions why I thought I had it so I pretty much just regurgitated everything I told the online doctor and she said the same thing that he said. My doctor said she would write me a prescription for a stimulant or that we could first try adding Wellbutrin to the Strattera to see if that would change the exhaustion. Even though I was excited to try stimulates I had looked at the side effects and they made me nervous so I started with the Wellbutrin and immediately saw a difference. Wellbutrin gave me my energy back the Strattera was giving my focus and I was much more productive but the downside was the combination of the two was making me super dizzy. I couldn’t do yoga without falling over so I had to do it by a wall or something to use it to balance. I would sit on my knees on the floor to play a quick game of Connect 4 or candy land or just whatever game the kids wanted then go to put it up in the closet and the room would start to spin I would see black and thought that was it I was going to pass out. I would stand there not moving until the feeling passed which was likely 30 sec or less but it felt like forever. I gave it a month and after a month I had another appointment with my doctor and decided to try Vyvanse, before she prescribed Vyvanse I asked if there was a ‘real, official’ test or anything else I need to do but she said because I was already diagnosed by somebody else for ADHD and I was seeing results from the Strattera and I did not just come asking immediately for the stimulants I wasn’t seen as a high-risk. She also said that since she’d had me as a patient for a long time she felt like she knew me enough to tell that what I told her in my interview/story lead her to believe that I was genuine. The next step was signing my life away, I had to sign a contract saying I’m not going to see another doctor here or in another state about my ADHD and try to obtain another Rx, I had to agree to urine testing for drugs to make sure that I’m taking what I say I’m taking and nothing else. I also had to agree to come into the office to pick up my prescriptions monthly (this has recently changed which is amazing thanks to Duo Factor Authentication my doctor can prescribe online) and meet with my doctor face to face every 3 months.
After all of that I got my prescription for Vyvanse it worked but I had my God such a crash I would take it at 10am then when I got home at 6pm I would be so agitated and irritable and cranky I couldn’t be around my kids or my husband. I’d have to walk away so I wouldn’t snap at them. It was just horrible it was so bad. I was on Vyvanse for about a month and I told my doctor about the irritability so she increased my dose thinking it would help to get me closer to the average dosage and my irritability would go away. During all of this I’m still on the Strattera but I’m stair stepping off of it and it seemed like the further away I got from the Strattera things just kept getting worse. I told my doctor in a rambling email how I felt like a guinea pig because I’m trying all these meds and having this issue and that issue. How many more am I going to have to try before I get to something that is best for me that works like Vyvanse but without the side effects. Everything was cranked up a notch my focus was there everything was easier easier than on the Strattera even in the beginning the Strattera was an eye-opening experience for me when I first started. I don’t know how I functioned without meds before. It was just all of the side effects for Vyvanse I was having that I just I couldn’t do it. I started taking just the Strattera and Wellbutrin again but this time I wasn’t as dizzy. I found something else out while I was on Vyvanse, see my doctor also took me off the wellbutrin. The Wellbutrin I found was curbing my Cravings and these aren’t’ just cravings they become like a need these horribly intense sugar cravings I couldn’t’ ignore and maybe I am addicted to sugar i don’t know but the Cravings are so bad. Wellbutrin gave me the control by taking the edge off the addiction or whatever it was, so I didn’t have to binge on junk food like I was and I lost like 30 pounds just from that. When I was off Wellbutrin and on the Vyvanse after my crash I would be ravenous when it wore off because I wasn’t hungry or eating as much during the day then the cravings would come too and I would just eat and eat like “get in my belly” anything in the pantry that was chocolate or sweet. I started to gain weight back, not good, no girl likes to gain weight.
I am going to stop here because what I want to talk about next is Pharmacogenomics testing and if I keep going this is going to be really really long. So until next time keep shining!
