Thought I was figuring things out...

I had to move my psychiatric care to the VA, after so much difficulty with Moda and then Kaiser. I had been diagnosed with ADHD at the age of 47 (now 48) by a MD psychiatrist. The VA set me up with a psychiatric mental health nurse practitioner over telehealth.

On our first visit, the NP said to me that he doesn't think that I have ADHD, but rather, anxiety. This was about a year after getting my diagnosis and reading, watching, and listening to anything I could get my hands on regarding adult ADHD.

The NP's rationale was that I have a degree in chiropractic and in nursing and have a job, as well as- and this is the part I haven't found evidence one way or the other for- THE FACT THAT I FEEL UPLIFTED, CALMED, FOCUSED, AND MORE HOPEFUL ON STIMULANT MEDICATION. He says "any normal person put on stimulant medication would feel improved energy and mood, but someone with ADHD won't necessarily feel an effect on mood or energy because they are going to now be at "normal" dopamine levels (vs. elevated as in non-ADHDers on stimulants). He also said that the fact that I felt fatigued and irritable (withdrawal) for 7-10 days after running out of medication a month or so ago (thanks to VA pharmacy confusion). He claims that "SOMEONE WITH ADHD WILL NOT FEEL WITHDRAWAL SYMPTOMS UPON STOPPING ABRUPTLY."

I have read so many accounts of newly diagnosed ADHDers starting stimulant medication and feeling that their world has changed. Like so many, after getting diagnosed, I felt like so many of the missing pieces that had perplexed me in the past now had answers. I'm a school nurse and I became passionate about advocating for kids with ADHD, ASD and other learning disabilities.

Ned Halloway, who you all most surely know of, has said that ADHD is both over-diagnosed and under-diagnosed. Over, in that many children with challenging behaviors are diagnosed without a full workup to rule out the many overlapping conditions. Under, in that the quiet, distracted types- especially females, slip through the cracks without a diagnosis and suffer for years or decades or their entire life, knowing that they are different, but unable to explain why. Most people have very limited knowledge about ADHD and, like me, never considered it. (I did pick up the book- "You Mean I'm Not Lazy and Stupid" (or something like that) 1-15 years ago, but GOT DISTRACTED and never read it or looked into ADHD again, until my daughter was diagnosed at 18 years old after a two day neuropsych evaluation. I was listening to the doctor educate us about ADHD and felt like every thing she was saying was about me. I then asked the psychiatrist that I had been working with for a few months for depression and anxiety (life-long) if she thought I could have ADHD. She had me fill out a worksheet and we talked some more. She said that she believed I most likely do have ADHD and started me on Adderall.

Can someone on this forum who has had a full workup tell me whether the NP's statements are true for you- that you don't really feel the effects of your stimulant medication, but you know it's working because you are more focussed or less impulsive/distractible? Do you notice feelings of withdrawal (fatigue was my primary symptom) when stopping medication for 2 or more days?

Thank you. I have had a few more visits with this NP, because I'm afraid that if I fire him because he's essentially taking me off of a controlled medication, I'll be labeled a doctor shopper in the VA system. He says I've only ever been put on low doses of antidepressants and that with stronger dosing, I should feel significant mood improvements. So I've been on 200mg of sertraline (Zoloft) for 3-4 months and the only change felt there is less emotion, versus feeling better. I used to be depressed with moments or even days of moderate happiness here and there and moments or days of deeper depression here and there. Now, I haven't fell into any pits of sadness, but I also don't really feel much of the joy that I used to get in small doses. I feel numb-ish. The NP told me that is the antidepressant dampening the lows and highs, as that's "how it works".

I will stop there. Thank you for reading and responding with your experiences and knowledge.

[BlessedLady]

You need to find a psychiatrist and not a NP. In addition, the law is going back to what it was before the pandemic regarding prescribing Schedule II drugs. You will have to see a prescriber at least once face to face before you can be prescribed a Schedule II drug. Even if this NP prescribed stimulants. You would have to see her at least once and probably regularly in order for her to continue prescribing the stimulants. Unfortunately, you will probably have to find a doctor in the private sector.

[Hidden in reply to BlessedLady]

I agree about finding someone better educated on ADHD in adults. And thank you for the info regarding the changes in the law. I'm currently working with the VA. The trouble is, I live in a small town with no psychiatrists, except the one who diagnosed me and she doesn't work with the VA or Kaiser, my two options (cash is $300 something- not in my budget. She also can't write scripts for the VA to fill by mail, like it is with my non-VA primary care doc. I'd have to use Kaiser or pay cash for the medication as well. I will see where the nearest VA covered, non-VA psychiatrist is and go from there. Thank you for your reply.

[STEM_Dad in reply to Hidden]

Did the VA and Kaiser request records from the small town psychiatrist who diagnosed you?

Reviewing the psychiatrist's notes regarding your diagnosis should help clear up the matter.

If the psychiatric nurse practitioner has read the notes, and still feels the need to question the diagnosis, can you request that a VA psychiatrist review your case?

[Hidden in reply to STEM_Dad]

They did not request records, and for whatever reason, I hadn't thought of that. I will see what I have to do to get her records into my VA health record. I am also going to request a change in provider, but since it was such a chore to get my prescription set up and filled, I am timing my request for a psychiatrist. Initially, the NP lowered me from 70-50mg Vyvanse in two monthly steps and is holding it there for now- he has a "friend" near me who he has referred to for an ADHD evaluation. I already respectfully challenge this NP during our visits and figure I will judge this "friend" and their credentials and experience when the referral comes through with their name on it. I also have a full neuropsych evaluation scheduled for later this year- they are that backed up here. It is with the psychologist who assessed my daughter a couple of years ago- I was very impressed with the process and her patient communication- but that will cost me somewhere around $1500. I've been told that neither Kaiser, nor the VA do neuropsychiatric evaluations, and this doctor doesn't work with either as a third party payor, anyway.

[El-Eektrified]

I did have a full evaluation, and re-evaluation and both came up with ADHD… trialed multiple meds and like you, I know what mood swings are… maybe this is also part of being female 😂

But let me share my experience, you’re not alone!

While taking stimulants I couldn’t tell if there were ADHD improvements… I kept increasing my daily intake of dex, I was taking IR at the time. But eventually, I lost all the energy my body had left… leaving me with fatigue..

I was honest about the situation, my NP made me stop, cold turkey- he warned me for withdrawal symptoms, which could feel like a depression….

Then he got me on bupropion, didn’t notice much… because of my restlessness guanfacine was added, this worked and stabilized my mood. But after a few weeks I noticed that it was harder to “feel”… didn’t understand my own feelings and couldn’t relate to others…

Taken off the bupropion, my brain was foggy, tired most of the time… well known side-effect of Guanfacine… to solve this and to get “extra” energy and focus… Vyvanse was added and because of my former abuse, with caution.

Had to stop during weekends, to keep my tolerance levels low. During those weekends, I felt extremely fatigued and depressed… so we tried continuing vyvanse during the weekend, which solved the problem.

To answer your questions;

“Can someone on this forum who has had a full workup tell me whether the NP's statements are true for you- “ that you don't really feel the effects of your stimulant medication, but you know it's working because you are more focussed or less impulsive/distractible?

the vyvanse did elevate my mood, I felt great… this subsided after a few weeks. It did help with focus, because I was less fatigued… my NP also told me that you “will” notice the differences…

But I simply couldn’t, and now I know why… ASD explains my difficulties with the inability to notice “those” differences…

“Do you notice feelings of withdrawal (fatigue was my primary symptom) when stopping medication for 2 or more days?”

I did experience feelings of fatigue and depression, after stopping vyvanse for only a few days… so I have to keep on taking my meds…

My NP explained that ADHD/ASD treatment in women is different compared to males and that they are still learning.

Studies and researches have always had a focus on male participants, these experiences, are what they work with in psychiatry today. Therefore you have to accept that not everyone in the field is trained to treat/diagnose a woman with ADHD/ASD….

There are well trained and open-minded NP’s out there! You just have to be lucky to meet the right person!

[Hidden in reply to El-Eektrified]

Thank you : ) I'm male, but your reply is what I am looking for. In addition to the research being primarily focused on males, I presume it is also primarily focused on male CHILDREN. I wonder about the dosing, as well, and how dosing guidelines have been developed for clinicians. So much to learn in such a fascinating and important field of knowledge! Thankfully, there are communities such as this as well as many good books, blogs, vlogs, orgs, etc!

[El-Eektrified in reply to Hidden]

You are right! He told me that the focus in most studies are boys/adolescents 8-21. But not all clinicians take that in account.

Intuniv is officially only approved to be prescribed to children age 5-17… it was the only med, that was effective in my situation. But being an adult… I’ve noticed, that this medication raises questions among multiple doctors outside and (even within) the psychiatric field … they don’t want to be responsible… don’t know anything about this med, and if they look it up online… it raises questions, as to “why” they did prescribe this to me…

My Np explained that even methylphenidate/dexamfetamine is “off label” use in adults in my country… the only approved medication for adults is Atomoxetine…. But many don’t know that either… guess there’s still a knowledge gap….

[STEM_Dad]

You said: "THE FACT THAT I FEEL UPLIFTED, CALMED, FOCUSED, AND MORE HOPEFUL ON STIMULANT MEDICATION.

This reads like the experience that many people with ADHD have said about their experience taking ADHD medication (particularly stimulant medication). The feelings of elevation are common between people with and without ADHD.

The keyword that you said which makes me feel like you MUST have ADHD is that you said the medication made you feel "CALM". I have not heard or read about a neurotypical person taking stimulant meds use this word, but it is a word which many people who do have ADHD report feeling, especially when they first try stimulant medication.

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The fact that you've earned a challenging college degree cannot rule out having ADHD. Many people with ADHD earn college degrees, including degrees in challenging subjects. I've met plenty of people who have ADHD who have been successful in college and career, who had very obvious ADHD traits.

I haven't yet finished my bachelor's, despite several attempts. (But that's my life story, not yours.) However, it was later in my career that struggles with anxiety actually led to my ADHD diagnosis.

My ADHD symptoms get a lot more severe, a lot more prominent, when my anxiety levels rise.

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Voice your concerns about the NP's dismissal of your ADHD diagnosis.

You say that your ADHD diagnosis was from an MD psychiatrist.

You have a degree in nursing, so your own medical training & experience is far beyond that of a layman, like me. So, you probably would have picked up on whether what you were feeling was akin to a person seeking a high, versus a person experiencing the relief of adequate treatment.

If your ADHD symptoms are well treated on the stimulant medication, then it seems to my mind that you do have ADHD.

[Hidden in reply to STEM_Dad]

Yes- that sense of calm!

I also explain (poorly) that, pre-ADHD medication, my thoughts and senses were like the stars on a planetarium's dome- different intensities, but equidistant.

This imagery also gives me a sense of the/my problem with time.

Since none of the projected stars and planets in the planetarium are actually closer or farther, I only have their intensity to gauge their importance.

When I was started on ADHD medication, I realized that the planetarium had given way to the night's sky (ignore the fact that the same challenge of judging distance exists when looking at the actual night sky with bare eyes.)

I could recognize my pattern of focusing on whatever was urgent, versus what was important (ie.- 2-3 hours on emails and their links- all work related, and then feeling bad at the end of the day that I didn't accomplish as much as I thought I should be able to), pause, and ask myself if the thing that had my attention was really the best use of my time.

What an amazing ability!

That and other changes have not resulted in a complete transformation- after a little over a year being diagnosed and medicated, I can tell that I have a LOT to learn and also to unlearn!

While my days are more energized (not too much), I believe it has just as much to do with lifting a big part of the weight I've been carrying for most of my life.

I've been a perfectionist and validation seeker/pleaser to compensate for my slightly awkward personality and self-perceived "flaws" for a very long time.

My self acceptance and value are gradually improving after a lifetime of feeling like gum on someone's shoe.

I've had so much success, while seeing myself as a failure through most of it. If I don't have ADHD, and no anti-depressant or anxiety medication has ever helped me, I've at least gotten a glimpse of a life less burdened and will continue to seek peace by accepting myself.

[STEM_Dad in reply to Hidden]

Well, the shift in your ability for discernment seems somewhat like my own transformation on ADHD medication.

Prior to meds, I was extremely indecisive.

* Even picking a meal off a menu took me longer than anyone else in my family/party. My indecisiveness was so bad that my wife would tell me to start thinking of what I wanted as we got into the car to go to McDonald's, 5 minutes away. By the time we got to the drive-thru speaker (usually after 2 other cars) and the rest of my family had ordered, I still hadn't decided.

* Pre-meds, after 10 years of marriage and the same struggles with indecisiveness, I developed a coping mechanism...pick the first thing that looks good as my "default option". On restaurant menus, this was usually the basic burger. If I hadn't come up with a better option by the time I had to choose, then I'd go with the default.

Now, thanks to meds, I can actually make decisions in real time, quickly comparing options and evaluating the qualities of each, and choosing almost as quickly as a neurotypical person. I'm much improved in decisiveness, but the higher impact the decision, the longer I have to take to decide...but I don't get stuck in "analysis paralysis".

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Like you, I also would deal with urgent over important.

* For example: I worked for several years at a computer help desk. I would help walk-in customers first, then to incoming calls, then the newest emails, because they just popped up and triggered my sense of urgency. But, I was supposed to give priority to oldest emails and voicemails, but they no longer seemed as urgent as the newest ones.

Meds have helped me improve, to rationalize what's important over what's urgent, but I often still deal with quick tasks over more important ones which take longer and require more mental resources. But, at least I know why I do that, and sometimes choose to interrupt a longer task with a short one on purpose. Why? Because I now understand that it's the dopamine flood and the reward of feeling good that I got something done.

* Breaking bigger tasks into "steps", allowing myself to get a dopamine boost for each step in the process, and to feel that satisfaction for completing each step, can really help me keep moving.

* I still struggle with task initiation. That's why I'm still in bed, typing this on my phone, when I should have been up at least half an hour ago.

Manufactured urgency, such as running late practically every day, gives me an adrenaline rush. I wish I could be more self motivated, but even in meds I realize that I still struggle with simply getting started on things that I know I should be doing. Procrastination is still a daily struggle.

* My ADHD responds better to non-stimulant atomoxetine, a selective norepinephrine reuptake inhibitor (SNRI) than to dopamine-boosting stimulant Adderall XR (which was the first medication I tried). Norepinephrine (aka noradrenaline) is related to epinephrine (aka adrenaline). I know that adrenaline gets me moving, but the anxiety that often accompanies it can paralyze me from action. But norepinephrine makes my brain work tremendously better... almost functioning like a neurotypical person.

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Your planetarium/night sky analogy seems like how my thoughts seem now, where I can shift my focus from one fixed point thought to another. My thoughts used to be like shooting stars, with the brightest ones stealing my attention, then the next one, then the next...so I had no time to fully realize a thought before it was gone.

Prior to meds, my working memory was extremely poor. But first on Adderall and now in atomoxetine, my working memory is SO MUCH BETTER! And my thoughts are so much more steady and persistent. (I do miss the random idea generation from before, which made me feel more creative, but it's great to actually be able to follow a thought for as long as I want to and not have it disappear before I can at least write it down.)

[STEM_Dad in reply to STEM_Dad]

Reminded by your planetarium, but very different...

I'm a very sensitive, emotional guy.

I realized a long time ago that I don't experience emotions distinctly. I experience emotions all at once, many layers, flavors and colors, at many intensities. My realization one day was that my emotions are like layers in a deep pool of water, and I could examine one by dropping a fishing line a certain depth, pull up a fish (the emotion) to examine it closer, but looking down I could see many more, crisscrossing each other at different layers. I could release the one, and pull up another.

Unless some great emotional trigger causes me to feel one thing far above the rest.

When someone asks me how I'm feeling, I'll only name the emotions that are the biggest at the time, or closest to the surface. Because if I tell them everything that I'm feeling on every level, they'll wish they'd never asked. (I could go on for half an hour or more, getting progressively deeper and more obscure, before I get to the feelings that are hard to put into words.)

[NYCmom2]

The right fit medication can calm the brain chaos of ADHD. I’ve heard it described as instead of having a flood of thoughts, feelings and priorities all at once - the medication allows each thought, feeling and priority to wait in an orderly line and take turns.

I certainly feel a positive affect from stimulant medication. I feel less overwhelmed and able to focus and prioritize. I also feel more emotionally regulated and less anxious and less low mood.

Stimulant medication can positively affect the brain’s access (and ability to transport) dopamine and Norepinephrine.

[Hidden in reply to NYCmom2]

"I’ve heard it described as instead of having a flood of thoughts, feelings and priorities all at once - the medication allows each thought, feeling and priority to wait in an orderly line and take turns."

Haha- see my planetarium analogy in my reply to STEM_Dad above! I've also given the explanation of thoughts, words, etc. "lining up".

My family does tell me that I am a lot more talkative now. I think it's because communication isn't as difficult when I have the ability to think about what I'm saying and what I'm going to say- and being a better listener, I have so much more to say!

[Blue_186281_red]

The NP is wrong. I take adderall only when I work for fear of tolerance - I jumped from 10mg to 25 real fast and can't imagine the dysfunction of an extended vacation if I max out my dosage. I feel a mild high taking it & fatigue when I don't. But it's like getting high on your 1st smoke of the day... not anything extreme. Of course, no longer suspecting ASD or long term S/Sx of a head trauma, no longer wandering around the house looking for... what was I looking for? huh? No longer worrying about early onset Alzheimer's Dz any more sure made me feel VERY uplifted.

You're a nurse. Collect some primary sources & demand the NP refute them. Ask him why he thinks his assessment trumps your previous MD's. Did he use any assessment tools? did your former MD? Ask HIM for primary sources Re: his description of ADHD on medication. Call your old MD and pay for one visit to coordinate a conversation... or maybe ask this NP why they have not already taken report from your previous HCP. Ask for a copy of your health care records & find out the NP's rationale for your POC. Then call the BRN with documentation of the NP making clinical decisions contrary to research you provided him.

Our health care system is F'ed. The only people looking out for you are YOU. You need to be the squeaky wheel & frequently threaten reporting HCP to the applicable gov't board. Their only fear is surveys and the dreaded "dings." I'm a nurse too & witness the absence of labor that goes into people's health care every day.

[Hidden in reply to Blue_186281_red]

Wow! Thank you for the straight talk! It's good to hear from another nurse. This has been doing my head in and I'm also trying to avoid being flagged as "doctor shopping". I've been conflict avoidant (in my personal life. At work? Watch out!) my whole life. I've been trying to reason with this NP, but he's got a (poor) rebuttal to any info I've lobbed at him. I did do a pubmed search for subjective experience AND ADHD stimulant medication and didn't get much to work with. I'll keep at it, but I am changing providers ASAP.