been waiting a year now after referral to the psychiatrist…

[Anonymous]

I have limited access to getting help for ADHD. I will skip some details, and just say that after a year of waiting, I have finally jumped through all the hoops necessary to see the psychiatrist I was referred to. Neurologist appt and sleep study were prerequisites, according to nurse practitioner that referred me, but obviously could not write scrip for anything but bupropion. Although I agree with the prerequisites (I seem to have some kind of narcolepsy, cannot drive, never slept right), it has been a roller coaster ride of hope and grief trying to get help.

What had led me to seek diagnosis was the unexpected experience of calmness when I tried a vyvanse given to me by a friend, out of compassion for my sinus agony and seeming narcolepsy. What had led to me seek help was when I stumbled upon a neurochemical solution to my lack of calmness and patience. I was totally mystified that “speed” was making me want to practice meditation. I had never felt calmer. A parent at the function I desperately needed to be awake for (or be very embarrassed) actually said to me, “You are so zen.” How ironic, I was feeling like a dirty criminal druggie for trying anything in desperation to open up my horrible sinuses (PAIN), and keep me from nodding off. I also waited tables later that day. I have never felt that tolerant, patient and forgiving with the sheeple before. I have told every healthcare professional since then honestly about that day that led to my epiphany about all of this.

However, a few times along the way, I thought all hope was lost. I figured, all legitimate options were played out. Blown off repeatedly for neurologist appointment, then after him, sleep study denied. I figured well, I have done everything this broken failure of a supposed genius of man can do. I have acted in good faith and I will never get help. (I should say here that I already practice meditation, make lists that I never finish, take omega-3, worked on fixing sleep cycles, etc, etc.). All of this was actually done to try and fix myself long before I was ready to accept the reality of ADHD. I used to actually call it “Lack of Proper Discipline Disorder” or “Lack of Meditation Disorder”. I feel just awful for talking like that in front of sufferers. As a lifelong athlete, martial artist, and yogi, amphetamines were out of the question. I believed I just needed to train harder and stop being week and lazy. After a year of study, I am more convinced it is about norepinephrine and dopamine. BTW, not currently using. Back in the zone of possibly getting help and do not want to blow it. And really don’t want to go to prison for my neurochemical imbalance.

Anyway, blah blah blah. What I am saying is, I have self-medicated a few times during those periods when I thought hope of finding affordable treatment were lost. I feel like many will not believe me, but I swear I am not cracking out over here and turning junkie. I am afraid to tell the psychiatrist that after adderall wears off, I have the most restful sleep I have had in maybe forever. But I need to tell her this because it is very useful data, the former-could’ve been great scientist in me thinks. I am afraid if I am honest about self-medicating, I will be declared a druggie and sent home after all this waiting. But I want to be able to share what I have learned (that less can be much better than more and that it helps me sleeep SO much at end of the day). Please believe me that I am not a casual drug seeker. Just wanna try and make the best of what is left of this 42 year old man’s broken life. So many great things were expected of me by others and myself. Professional athete, surgeon or researcher, spiritual teacher, martial arts teacher, yoga teacher, shaman, famous musician. (All I ever really wanted was a good woman though). On one hand, very proficient at many things. On the other hand, abject failure that can’t even keep up with bills. Nothing has ever become fully realized for me. I have watched every one of my dreams die, despite my warrior nature to keep on keeping on.

What is your opinion good people? I thank you so much already if you read to the end of this verbosity. Should I tell the psychiatrist what I have tried, and how much? Or should I keep my mouth shut so I don’t blow my only chance to get proper meds – that I and even some professionals think I would really benefit from? After such a long ordeal of waiting for the day that is coming soon, I am terrified of getting sent home labeled a druggie. I feel like I am coming up on about the most important day of my life. So afraid of it going wrong.

Sincerely,

littleboyblue

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[Anonymous]

Far out, what a dilemma! I have heard that some psychiatrists believe that anyone will feel better on stimulant medications, but as far as I am aware, it would be unusual for it to make a person feel calmer unless thay had ADHD. I really can’t advise what to do regarding your self-medicating trials. I would suggest maybe admitting to a once off use out of desparation, and stress how calm it made you feel and how well you slept afterwards. Untreated ADHD poses a high risk of self-medicating behaviours, and an informed psychiatrist should be aware of this and realise that you are so far at the end of your tether that you may well go down that path if they don’t help you appropriately.

And don’t feel bad about being desparate enough to try anything. You are not the only one. I have used prescription painkillers (prescribed to me for previous surgery, and arthritis flare ups) to help dampen down the urge to move and the racing thoughts that keep me awake when I should be sleeping. Not that they always work as planned. Sometimes they make the racing thoughts worse and I lie awake for ages with my mind running circles. But at least I am relaxed and still while it happens lol! Over the counter sleep aids work fairly well for me, but often leave me feeling depressed, unmotivated, and generally yuck the next day. Only good when I have the opportunity to take it early in the evening and sleep it off fully before having to get up. I have to wait a few more months until my psych appointment, and I am worried that I will say one wrong thing to make him believe I don’t have anything wrong with me, or that I have something that I know I don’t have (like depression…there is no way I am depressed. I have been there, done that, and it is definitely not overwhelming depression that keeps me from organising my life). So I can sympathise fully with your predicament. It’s certainly stressful!!

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[Anonymous]

Update.

Official medical diagnosis of narcolepsy. That can be done with empirical evidence. Still waiting for psychiatrist to call me back. Too bad her opinion only one that matters for ADHD diagnosis. The other medical professionals seem convinced of neurotransmitter deficiencies. Prescription for Nuvigil, if I get shrink’s blessing, and a hook up from the pharma company. If Nuvigil works like what I read about, sounds even superior to the amphetamines for my set of conditions. Sounds great to me!

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[Anonymous]

Hi littleboyblue,

Don’t despair. Sounds like you are on the way to help.

My mom (fabulous amateur classical singer) was diagnosed with narcolepsy and stimulant meds were what she was prescribed at that time (Ritalin or Dexedrine). She later self-diagnosed herself with ADD. All of my siblings have it, whether or not they realize it. I got the music gene from my mom but dropped out of univ (hons performance program), now I know it was because of ADD

I just got informally diagnosed with ADD but have to have a sleep study before the ADD specialist psych (and my doc) will prescribe meds. That’s because it could be narcolepsy, could be sleep apnea.

Here’s what my testing showed (I used my husband’s Ritalin, 10 mg tabs):

I have always had sleep problems, been a night owl, etc. (don’t ask me about driving as I have lots of stories about that and being drowsy). I started having really bad sleep problems recently, part of it was my husband (he’s just been diagnosed with severe sleep apnea and severe restless legs syndrome) but we now sleep in separate rooms. But unmedicated and in separate beds/separate rooms, I was still not sleeping through the night, having trouble getting to sleep and then waking up every 1-2 hours.

A week ago Friday I started taking his Ritalin again (he is too) 10mg 3x a day. The ADD psych said it was ok to do this and to keep a log to see how I feel. He suggested logging how I felt before I took a dose, how I felt at two hours (peak for Ritalin, not extended release) and how I felt after 4 hours (dose wears off).

For the first two nights I slept a bit better, but after that I either slept completely through the night or only woke up once to go the bathroom and then had no trouble getting back to sleep. I asked the ADD psych why Ritalin would do that and he said a doc who has ADD told him that the ADD mind is like a popcorn machine and Ritalin dials it down so we can sleep. I feel amazingly better after a week.

The Ritalin helps during the day too, I feel alert and can focus on things, rather than dragging myself around all day and doing stimulating things to stay awake.

I hear you on yoga and meditation, have been doing it for 10 years now, quite seriously (many zen sesshins and retreats). I am a certified yoga and stress management teacher but it can’t alter the fact that you have ADD. My psychologist who I see for meditation training says that if it’s a brain neurochemical issue (hope that’s right) then you should take meds. So I need meds.

I’m 56, not too late to get my life in order!

On telling the psych and your doctor:

I told the psych right away, and of course, I told him my experience, that it helped me sleep and it helped me feel more “normal” during the day (the wild mind was calmer). He said “that’s interesting” (he had only just met me). And I’ve told you now what he said at the 3rd visit, which was supposed to be the final and feedback session, but I am going back after the sleep study. He approves of me taking meds but not officially as it’s illegal.

I told my doc twice, but she says “it’s a stimulant, it’s addictive, and everyone feels better on it”. But she will totally accept the psych’s report and treatment plan, so I’m not too worried there. The ADD psych says she’s wrong on all counts.

Hope that’s helpful to you! My next appt with the ADD psych is in mid-Sept, haven’t heard from the sleep clinic yet. But I feel loads better.

Trying someone else’s meds is important info, you’re giving the prescribing doc some info. Might save some trial and error later. Not that I’m suggesting you do a lot of experimentation, but I do think it’s useful info. I felt guilty about taking Ritalin without a diagnosis, but now that the ADD psych has said I’m a textbook case, I no longer feel guilty.

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[Curlymoe115]

In Alberta I was booked into a sleep study and then had to go in and pick up the machine and do it at home. I have a slight sleep apnea (but only if I roll onto my back, suggested I get a shirt with a half tennis ball sewed into it) and they did the sleep study in one night. I have my own room, I call it my cave because with my new room darkening covers, fan blowing on me and my blankets tucked under my chin I am warm and snug. But even with all of these things I still do not sleep through the night. And when I wake up I have to get up and move around. Then 2 or 3 hours later I finally get back to sleep. I am a great believer in the afternoon nap.

I do know that my psychiatrist would prescribe meds for my numerous conditions and then he would give me a lab form so that he could check a number of balances in my system so that he had imperical data on how I was fairing on medications. He also wanted my anecdotal take on how I was fairing on the medications. So you maybe surprised that his only reaction to taking someone elses meds would be to just ask you how it made you feel. Be as honest as you can. A year is a very long time to go for an assessment and if you find the symptoms completely debilitating then you would of course be desperate.

A lot of doctors are still hung up on stimulants being addictive yet they continue to prescribe things like Oxycontin for pain or morphine. Completely addictive substances but if they help you deal with the pain then they are good. But even when you tip over into addiction they often can’t recognize the symptoms. My 80 year old granny was a drug addict completely addicted to Oxycontin. She was too disciplined to abuse it, but she would watch the clock for hours before it was time for her next dose. Her pain became truly agonizing as she waited for that dose. But before the T3’s ate through her stomach lining she was able to be pain free right up to the time of her next dose. Yet even with other family members urging the doctor to change her medications he refused to do so. He was convinced that since she was not wolfing them down like candy that her addictions were manageable. This woman went from being active in the community to zoning out in a blissful state right after she had taken her next dosage to walking the floors continuously for hours before the next dose was due. She stopped leaving the house, she stopped doing her “work” and became a clock watcher. Then she died of a heart attack brought on by her addiction.

So if you get a feeling of slowing down your brain chemistry from a stimulant then it is probably appropriate for a stimulant to be prescribed as long as you journal your feeling and you have a trusted advisor watch to make sure that it does not become an addiction. If you have no past addiction issues and you are truly not using these as a high, then you aren’t really abusing drugs. I have never heard of stimulant meds clearing sinuses but perhaps this was a benefit for your friend so as a last ditch effort she offered this solution to you. Whatever the case when you are finally diagnosed with whatever then you already have an idea of a medicine that you are interested in trying. Ancedotaly you already think it will have a therapeutic benefit. So then once he prescribes it he will probably send you back for blood work to check how your body is processing the drugs.

On another note, I can never get zen. I have tried meditation but no matter how much I tried thoughts always penetrated into my brain. The more I tried to block these thoughts the more they bombarded me. Yoga is too slow. I do better when I am huffing and puffing instead of trying to fold myself into a pretzel. So I am happy that you have found something that is working for you.

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[Anonymous]

The ADD psych I saw said zen was not good for me, he suggested moving meditations like tai chi or chigong. So lately I have been doing chigong (my current meditation teacher gives us chigong and energy circulation practices). Lately, yoga was getting to be too slow for me too.

As for bombarding thoughts, everybody does get them when they do meditation but it’s worse for ADDers. At least on meds, I am not as carried away by them and can recognize them for what they are, events arising that have a beginning, a middle and an end. I really loved a friend’s bumper sticker: it said “You don’t have to believe what you think”.

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[Anonymous]

One of first uses of amphetamines was decongestant. They are somewhat closely related – all the amphetamine, ephedrine, and adrenaline type molecules inside and outside your body.

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[Anonymous]

Hey, no_dopamine, I feel ya about sitting meditation vs moving meditation. The Korean style of martial arts I studied, their name for “Tai-Chi” literally translates to moving meditation. Despite years of work sitting, I notice how much easier it was to focus while moving. One of the myriad signs that led me to finally seek meds.

Well folks, after 14 months my ordeal is over! My fiance finally got so fed up with 14 months of my waiting, found me a local ADHD specialist who wrote my scrip for vyvanse. I like the idea that my crazy meth neighbors can’t steal and snort it. Didn’t even need to talk about the narcolepsy aspect. I think they are all interconnected anyway with attention. My mind wanders, I daydream then slip into real dream world.

Still kind of shocks me that amphetamines make me calmer than ever before. I will always resent a little how much the meds help, and how I could not fix it with years of yoga, martial arts and meditation practice. Kind of ironic, give me a little “speed” and I wanna meditate instead of playing video games.

Looking forward into diving into my years and years of unfinished projects!

namaste

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