The Forums Forums Medication WOW! What a revelation

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  • Fearwidg
    Participant
    #88194 |

    WOW!

    Yet another revelation.

    We’ve just started a new online business and as we get up to speed, money is very tight. So much so that when I ran out of the Clonazepam that controls my Motor Tics (I take it with Adderall to control my ADD), I thought, “Oh well. I’ll just have to put up with my tics for a few days.”

    WRONG.

    What I did not know – until today – is that it’s now obvious the Clonazepam controls far more than my tics.

    In 72 hours, I just barely managed to eke out 7 hours of sleep. I knew the Adderall was causing my insomnia, but as we’re currently going through one of the most critical moments in our lives, I had to have a functioning brain … so I kept taking the med.

    However, every night – when I finally tried to sleep – as soon as I closed my eyes, all the uncompleted jobs and unpaid bills came pouring out to haunt me. I’d try so hard to put them out of my mind, but soon realized I just couldn’t. So I’d get up, do a few hours work, they try again. Same result. And to make things worse, my tossing & turning, triggered by my returning motor Tics, meant my partner couldn’t sleep either.

    But the situation was critical and I had to work, so I did work (with no problems, thanks to the Adderall).

    Finally – the night before last – I was so exhausted that I actually managed 2 hours sleep in a row.

    But…

    I had forgotten that when my pre-ADD-diagnosis-insomnia was bad, I got “Night Terrors.”

    Nightmares are bad.

    Night Terrors are nightmares cubed.

    They come out of nowhere and leave me screaming in abject terror until Michelle (woken out of a deep sleep) manages to “bring me back” with a calm, reassuring voice (the only technique that works, we’ve learned over the years).

    Getting “back to reality” this time was particularly hard. And by the time I’d calmed down, my sheets were soaked with sweat.

    That did it.

    I borrowed some money from a neighbour and went and got my Clonazepam.

    (Sidebar: And was pretty upset to discover the price had done up nearly 50%! How can they justify such massive increases in a med that’s been around for ages?)

    Still … I got my Clonazepam, took one as soon as I got home and – within an hour – my tics were gone and I sensed I was one hell of a lot calmer.

    Took one before bed last night, put my head on my pillow and … was asleep in minutes.

    No unfinished business or unpaid bills running through my head – just calm, peaceful sleep.

    I slept for just under 8 hours for the first time in ages. And when I woke up, it felt so good I wanted to keep on sleeping. <g>

    But I knew I had to get up because I needed to analyze what I’d just learned… and I wanted to share the experience here.

    What did I discover?

    I thought I was taking Clonazepam just for my tics.

    Obviously, I’m taking it for a whole lot more.

    This morning, I’m having to face the fact that “anxiety” is obviously one of my ADD “Shadow Syndromes.”

    Really don’t like the idea of yet another label … but I’d rather deal with a label than the unnecessary hell I’ve been putting myself through.

    Gotta finish this up and get back to work, but I wanted to share the experience while it was fresh in my mind.

    I’ll stress here – as others have noted – the meds that work for me may not (probably will not) work for you (and vice versa. E.g. I can’t take any SSRI’s – they just make me furious!)

    That’s not the point.

    The point is: Find a good Doctor, one who specializes in ADD, then work with her/him to find the combination of medications that work for you. Keep journals of your progress on any new meds – any changes when you up or lower a dosage – subtle differences in the way you respond to different situations – that kind of thing.

    Share this info with your Doctor, then go through the med trials they suggest until you find the “magic combination” that makes you more “you” than you’ve ever been.

    And never forget …

    You’re not “on drugs,” You’re OFF ADD.

    In addition, not only do you get to keep the ADD gift of hyper-focus, you also get to CONTROL it!

    And THAT’S what will “save your life.”

    Good luck with your own battles

    Cheers till next time,

    Your fellow Swan,

    GN

    Postscript:

    Michelle told me that when I woke screaming, she noticed an important difference.

    In the past, when my Night Terrors have woken me, I sit up screaming, “NO” in terror.

    “This time,” she told me, “you were still screaming “NO” … but you weren’t saying it in fear, you were saying it in anger – as if you refused to put up with this anymore and were fighting back.”

    Not sure why, but that revelation brought tears to my eyes.

    Then again … after 60 years of this nonsense, I guess I’m entitled to shed a few fluids. <g>

    veronica
    Member
    #92181 |

    i’m glad that you are able to recognize and fight against your body’s mechanisms. i like what you wrote here… “You’re not “on drugs,” You’re OFF ADD”. love it actually.

    question for you. or anyone else that wants to answer. i get these nervous ticks. they feel like the “heebie-jeebies” up my spine, they flow up and then i finally just “yelp” or let a big “bah!” out. i can’t control it. the urge has been there for a long time. they ARE less frequent since i began taking the adderall. my Q is, should i bring these ticks up to my doc?

    yours seem way worse than my lil’ ones. i’m just wondering if it’s even worth making a stink over them.

    Fearwidg
    Participant
    #92182 |

    Hey Veronica.

    Definitely bring it up (wish I had a LONG time ago.)

    I’ll stress here – I AM NOT A DOCTOR … just a guy with ADD who has done a lot of research (because I didn’t think it was real and needed PROOF) and advocates for a lot of kids – and adults – with ADD.

    The way it’s been explained to me … all of us with “Brain Chemistry problems” are on a bell curve. (I’ve also heard it described as a spectrum. but the image of a bell curve helps my ADD brain grasp the concept a little easier. <g>)

    You’ve got Learning Disorders, then Dyslexia, then ADD, then ADD with Motor Tics, then Tourettes, then Aspergers, then Autism.

    I’m over-simplifying, but the point is – all these disorders have a common origin – Imbalanced Brain Chemistry (which we’re born with. It’s genetic. It is NOT “our fault”).

    The reason you need an ADD Specialist to diagnose you and take you through med trials is because the good ones know – you don’t just give someone Ritalin, then watch to see if it helps (in which case the Doc says they have ADD), or doesn’t (in which case the Doc says they haven’t).

    It’s much more complex than that. And meds have to be tailored to every patient’s personal Brain Chemistry problems.

    You may need a little bit of this, a little bit of that, and a whole lot of another. <g>

    In my case, I was originally diagnosed as “Add with severe Motor Tics.” About 10 years later, another Doctor said I had mild Tourettes.

    What’s the difference? One tiny question: Is there a vocal component to your Tics?

    I told the first Doctor, “No,” because I honestly didn’t think I had a vocal tic (and I thought Tourettes was “that swearing in public” thing {which in itself is an ignorant thing to say}).

    But my partner was with me at the 2nd Doctor’s, and when I said “No Vocal Tic,” she said, “…Um, Hon – Yeah you do.”

    I thought I was clearing my throat, but my partner correctly identified that as a vocal tic that worsened with increased stress.

    So, if you want to go by the strict guidelines – it sounds (SOUNDS – I am NOT a Doctor) like you may have Mild Tourettes.

    I am very familiar with the sensation you described. I lived with that, on and off for 60 years.

    Then – last year – my latest doctor said he could help me put a stop to that. It took 3 tries, but the 3rd med (Clonazepam in MY case), stopped my tics in their tracks inside of ONE HOUR.

    I can’t tell you how liberating it fells to no longer worry if my tics are going to start up in the wrong place.

    Then, as I said above, just TODAY, I realized those meds are also controlling anxiety problems I didn’t know I had.

    Apologies – must get back to work…

    But the bottom line is – if it’s bothering you (and I don’t imagine you’d have mentioned it if it wasn’t) why not have your doctor look into it?

    Besides … while “our” vocal tics may “give us away,” I now understand they are just the tip of the iceberg, revealing deeper problems below.

    If I were you … I’d look into it.

    Best of luck.

    Cheers till next time,

    GN (Not on meds, OFF ADD <g>)

    veronica
    Member
    #92183 |

    thank you!! it’s funny cuz’ when i “do them” everyone in the room looks at me funny and my usual response is “what?” as they stare. then they say, “you ok?”. to which i have a tendency to say, “oh, it’s just the heebie, jeebies”. now that you mention what your partner said, it makes total sense that people perceive the ticks differently than i do. *blush*

    i have these ticks, where i twist my head and don’t even realize it and “bah” or “oh!”….. and they do usually happen when i’m under some stress or very excited about something that’s about to happen. :D *giggles* it’s probably the one thing that i can easily laugh at about myself. probably, b/c it’s something i can’t hide, so why be self-consciousness about it, right?

    i’ll bring it up to the doc next time i go in.

    you rock!

    ~v

    Anonymous
    Inactive
    #92184 |

    I’m really thinking out loud here (no I’m not, I’m typing without thinking :)), but in reading the account of “night terrors” I was reminded of something I’ve experienced for years, perhaps decades. I have dreams in which I confront people verbally and physically. They can be quite spirited, angry, even violent, and commonly, I will yell (and sometime kick) at my opponents both in the dream and in actuality. Needless to say, this can be quite upsetting to anyone unlucky enough to be sharing my bed. A partner has told me that she has been woken by a flurry of obscenities coming from my mouth, and I have woken myself by striking out at my “demons” in my sleep.

    I’ve been medicated for unipolar depression (SS and SNRI’s) for many years, and have been tentatively diagnosed with ADD and Asperger’s.

    Thoughts?

    Fearwidg
    Participant
    #92185 |

    Veronica –

    Best of luck with your Doctor, and if s/he can’t give you a satisfactory answer, don’t be afraid to find an ADD Specialist who will. (Wish I’d done THAT decades ago).

    Also … excellent point that your motor tics not only increase under stress, but also when one is excited. I forgot to mention that. (Sorry. I have ADD <vbg>).

    Another point I missed is that – even when my tics are at their worst – they disappear completely when I’m hyper-focussed.

    I remember an excellent episode of Chicago Hope that dealt with a brilliant Doctor who just happened to have severe Tourettes. In the end, he was the only Doctor who could save a small infant, but it didn’t help that while trying to explain the risks of the operation to the parents, his Tourettes would occasionally blurt out the words “Dead baby.”

    The other doctors didn’t want him near the child, but finally realized the man was the infant’s only hope.

    In the event, it took about 30 seconds for the Doctor’s Tourettes to evaporate as his hyper-focus kicked in, he became the consumate professional, and saved the baby. But the second he was done – back came the tics with a vengeance.

    I know it was a fictional TV drama, but I remember being impressed that the Screenwriter had obviously done his/her homework. They nailed what it’s like to have Motor tics/Tourettes.

    But I digress. <g>

    As I said – Good luck with your Doctor … and, if you don’t mind, let the rest of us totallyadd Swans know how it went (either way).

    Cheers till next time,

    GN

    Fearwidg
    Participant
    #92186 |

    Redward1965

    LOVE your opening line. It is SO ADD. (Thought/Sidebar/Honesty).

    {Mind you, I’m more Thought/Sidebar/Sidebar/Sidebar/ What was I talking about? <g>}

    But I digress. <vbg>

    I’ll say again – I AM NOT AS DOCTOR…

    But when you say, you’ve been medicated for unipolar depression, but also TENTATIVELY diagnosed with ADD AND Aspergers, I get worried.

    ADD presents very differently from Aspergers, and SO many Adders are incorrectly diagnosed with Depression (which is not to say you DON’T have Depression, you very well may. Again – I AM NOT A DOCTOR).

    But for many of us, especially those with a few years under our belts (and if I read your username correctly, I suspect you’re 44 -45), why wouldn’t we be depressed after a lifetime of underachievement & “missing the mark”?

    That’s where a good Doctor – one who really understands Brain Chemisty Imbalance (BCI) problems – comes in. They can tell the difference between Depression as the prime BCI, or as a “Shadow Syndrome” of some other BCI, such as ADD or Aspergers.

    So, what really worries me is your comment about being TENTATIVELY diagnosed with ADD or Aspergers.

    Why “tentaively”? Are you part way through a process of narrowing that down, or were you left hanging with three possibilities?

    If that’s the case, you and your Doctor (or an ADD/Aspergers Specialist) really need to nail down that diagnosis.

    Because ADD or Aspergers frequently come with depression as a shadow syndrome … but it’s rarely the other way around.

    From the bit of information above, my totally non-professional take would be: it SOUNDS like you have ADD with Motor Tics/Mild Tourettes like me, or possibly Aspergers. And I would PRESS for a complete, professional diagnosis.

    Why? Because the right diagnosis, followed my med trials to discover the meds that work for YOU, will end your tics, change your life … SAVE your life.

    Having said that – I AM NOT A DOCTOR – so, please keep taking the meds you’ve been prescribed until a qualified Specialist tells you otherwise.

    Wish you all the best.

    Be sure to let your fellow Swans know how you get on.

    Cheers till next time,

    GN

    #92187 |

    I love reading your stuff ‘fearwidg’

    Tics are interesting. Apparently a lot of people have them but they are suppressed. So when they take medication it can actually start to show up. The meds aren’t causing the tic, they are revealing it. One of the most common tics is clearing the throat.

    Me? I sniff.

    Anonymous
    Inactive
    #92188 |

    Fearwidg:

    Re: the TV doctor with Tourettes — have you heard of the BC surgeon who has Tourettes? He lives somewhere in the Fraser Valley, I believe. He was featured in a documentary by Dr. Oliver Sacks, whom you may have heard of. As in the case of the fictional doctor you referred to, this fellow can be full of tics (the current one at the time of the documentary was “hideous”, said over and over without any context) right up to the point at which he 1) begins to fly his own small plane or 2) operates on a patient, and suddenly disappear, only to begin again once he shifts his focus away from the task at hand.

    Fearwidg
    Participant
    #92189 |

    Hi Rick.

    Thanks for the kind words.

    Hi Redward 1965.

    Yes I know the documentary well.

    As a matter of fact I am also a private pilot and have flown over 140 small planes, mostly antiques & homebuilts.

    Been flying since I was a teen. Didn’t know I had ADD till I was 46.

    But my ADD & my Tourettes NEVER affected my flying.

    When I was diagnosed, I asked my Doctor why that was.

    He explained that all us undiagnosed ADDers don’t realize it, but we search for ways to self-medicate so we get what we’re really after – a quiet mind!

    Mentioned I used Alcohol as a younger teen, but sensed I was on a “road to hell,” so quit drinking booze and became a pilot instead . <g>

    (Sidebar: Also put myself in hospital twice with some strange malady they couldn’t figure out till my 2nd “visit.” The Doctor asked a bunch of questions. “Don’t drink. Never smoked,” I said. “Looks like you have caffeine poisoning,” he said. “Never drink the stuff,” I responded. “Chocolate?” he asked. “One candy bar a month – maybe,” I replied.

    “How about TEA?” he said. “Oh, I LIVE on tea,” I replied. “How many cups a day? he asked. “Just normal,” I replied. What’s “normal” he asked {with a look in his eye that told me he’d figured out the problem}. I thought carefully then told the good Doctor, “Oh 35 – 40 cups a day…”

    I SWEAR I thought a) there was no caffeine in tea, and b) 35-40 cups a day was normal. Turns out I did have caffeine poisoning and – without realizing it – had been self-medicating my ADD with tea!!! Switched to decaf tea. Without the caffeine, drank less tea. After I got my meds, lost all interest in the beverage. Now drink only water, milk and the occasional cup of hot chocolate (and yes, I KNOW that has caffeine <g>).

    Wow! Some sidebar … where was I?

    Oh, right – Flying.

    My ADD Doc told me many of his ADD patients were Pilots (You’ll hear Doctor Hallowell mention that same fact in “Totally Add & Loving It.”)

    “Let me ask you a question,” the Doc said. “When, or where, do you feel ‘at peace’?”

    It only took me a second to reply, “When I fly.”

    The Doctor grinned and nodded his head (which was unnerving).

    “Why ?” I asked.

    “Because ADDers make great pilots,” he responded. “The combination of flying the plane and watching the instruments and the weather and the traffic and the maps, together with the “white noise” of the engine & the wind is exactly the environment you guys thrive on.”

    “Okay. But WHY?” I wanted to know.

    “Because all that activity occupies the part of your brain that usually drives you crazy; that internal conversation that won’t shut up. As a result, the other part of your brain – the “real you” – gets to experience rare moments of peace & quiet. And you’re hooked on that.”

    It was a staggering revelation … because it’s true.

    Turns out I’d been self-medicating with flying.

    Also turns out all us Swans who climb mountains, scuba dive, race cars or run ER departments are doing the same thing!

    We’re NOT “Adrenaline Junkies,” as so many think. We actually do what we do because – without realizing it – we get the one thing we REALLY crave…

    Peace of mind.

    (Sidebar: Attended an ADD conference once where I spoke with a specialist who’d been a Military Doctor in Vietnam. He noticed the “loss ratio” of his pilots went up if they had to fly more than 15 minutes to combat. The Doc had an idea he was dealing with ADDers {who were getting bored} and started his pilots on Dexedrine before their flights. As a result, the loss ratio plummeted and the success ratio soared! It’s a little known fact that the US Air Force has been offering their pilots Dexedrine {so-called “Go Pills”}since 1960 {That’s not a rumor. I have a copy of the U.S. Navy Pilot’s manual on the subject.}. They do it NOT “to get them high,” but to help the ADD Fighter Pilots the Air Force naturally attracts get their symoptoms under control. Dexedrine was on EVERY Apollo Mission (you can read about it in the flight transcripts) and was used on the so-called “Vomit Comet” during weightlessness training! The Air Force is VERY aware that most of their top pilots are “Swans” <vbg).

    Oh, man.

    That was long.

    Apologies.

    Cheers till next time,

    GN

    PS: One last point (big surprise) – that Flight Surgeon told me, “If anything ever goes wrong when I’m flying in an airliner, I pray one of you ADDers are in the pilot’s seat.” “WHY?” I asked. “Because with you guys, it’s always about, ‘The Next Thing, The Next Thing, The Next thing…,’ and I know you ADD pilots will go through every possible scenario to save the flight – and you’ll do it in nanoseconds.”

    Know what? He’s right.

    Anonymous
    Inactive
    #92190 |

    Great post, FWG. I wonder, though, about the ADDers’ reputation for being terrible drivers and how it reconciles with what you’ve said about pilots. I’m a good driver myself, but I usually require a lot of coffee to sustain my skills (I’m a caffeine addict as well).

    Further to my remarks about my diagnoses, the story is that on the strength of my research I convinced my therapist (a psychiatrist from whom I was receiving psychotherapy and drug treatment for depression) that we should be looking at either or both autism spectrum disorder and ADD. She was completely dismissive of the former (“those people are distinctly odd, and you could not have gotten a law degree if you had that disorder” she said), but eventually came around to the idea of screening me for the latter. This consisted, essentially, of having me write a screening test and prescribing Concerta. She kept raising the dose every month (we saw each other once a week) and waited for “dramatic” results. She was never able to tell me what these would have been. After raising my dosage to the point where I felt overly stimulated and unhealthy, she announced that I didn’t have ADD. Six months later, seemingly out of the blue, she announced that I was Aspergers. Apparently she had done some research, and referred me to some good websites.

    Perhaps I wasn’t accurate when I said my shrink wouldn’t describe what dramatic results would have been. She did, seemingly, imply that motivation, focus, and effective action regarding my search for employment (I’ve been out of work for a year and close to half of the previous 5 years) were what she was looking for. The problem here, in my opinion, was that by the time she had prescribed the meds I had already trained myself to manage effectively the low-key life that I had; by developing some effective rituals, I no longer would forget appointments, my keys, and whatnot. Further, I had been banging my head against the wall for years trying to find a line of work that I could enter and sustain employment in. When I came across a new idea, I would take action to investigate and implement new directions in my search for work. But I was often very discouraged, and generally unable to see just where it was that I should turn next. Solving the problem caused by my failure to turn degrees in law and archival studies into sustained employment should not have been the sine qua non of the effectiveness of drug therapy for a condition that she hadn’t yet really diagnosed.

    By the way, I’ve never managed to do any work involving reading and writing without the assistance of a lot of coffee — except when I was taking the methylphenidate.

    Fearwidg
    Participant
    #92191 |

    Re Driving: I drive a LOT. 160 km a day on average for the past 45 years. (That’s more than 2.6 million km!) During that time, I’ve been in two accidents (neither my fault. Someone hit ME in white-out conditions both times), and I’ve been a volunteer driver for Children’s Aid for the past 7 years (sometimes driving 8-10,000 km a month).

    I’ve had 3 speeding tickets; two for doing 31 mph in a 25 mph zone (30 years apart on the SAME road. Sheesh!) and one while rushing to help an ADD child whose Mother had just O.D.’d (I make no apologies for the last one.)

    Re your Doctor: Get another one. (I AM being deliberately abrupt <g>). But seriously … I do think you need – at the very least – someone with a fresh point of view.

    As for Concerta – Tried it. Doesn’t work on ME at all. (Which doesn’t mean Concerta doesn’t work. I’m just saying – we’re all different. Some meds work. Others don’t. Depends on the individual.)

    Re coffee: After self-medicating with copious cups of tea over the decades, I “get” what you are doing … but as I mentioned – my excessive caffeine intake put me in hospital twice. And once I had the right meds, I lost all interest in caffeine.

    One point I DO find interesting (My usual disclaimer: I am NOT a Doctor) is that you find caffeine is such a help to you. What that tells me (NOT a Doctor <g>), is that you obviously react positively to stimulants.

    So why have you not been tried on Stimulant Medication (Adderall, Dexedrine, Ritalin, etc.)?

    That’s what I’d be asking.

    Anonymous
    Inactive
    #92192 |

    I’ve always wanted to fly…in fact in my younger years, I’m sure I was flying with my feet permanently on the ground, but that’s another story.

    you wrote:

    <snip>

    Turns out I’d been self-medicating with flying.

    Also turns out all us Swans who climb mountains, scuba dive, race cars or run ER departments are doing the same thing!

    We’re NOT “Adrenaline Junkies,” as so many think. We actually do what we do because – without realizing it – we get the one thing we REALLY crave…

    Peace of mind.

    <snip>

    Well, I love taking risks. In my thinner years, I rock climbed Europe on fissures without ropes or other life saving equipment. I’m also the guy with the white helmet inside that race car. It goes from 0 to 160km/h back to 0 in about 6 seconds. When I’m ripping around Mosport with my foot to the floor, pulling G’s pulling left, then right, then full out, full blast down the back straight, I’m at total peace. Other cars pass me, but it’s like slow motion. I don’t hear them. I can only hear the engine straining as I slam into the next gear, the engine pulling well into the redline. The slightest twitch the wrong way could end your life. It’s euphoric. And I don’t hear that damn noise in my ear! I’ve felt my heartbeat… it’s not slower or any faster than watching the cars scream by at the sideline.

    As a side note, i may know people you know within your industry. Small world….

    Fearwidg
    Participant
    #92193 |

    Sounds right, abslt0

    As for small world…

    Figures. <vbg>

    Cheers,

    GN

    Anonymous
    Inactive
    #92194 |

    In a world of crisis, the ADDer will be the only one focused. In a world of calm, the ADDer is the one in crisis.

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