Reply To: Newly diagnosed…kind of annoyed it took this long!

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Deb from Philly
Participant

It’s wonderful to find this today! Strange as it may sound, it’s so helpful and “warming” to read all of your stories. I have also felt alone since I was diagnosed, 3 months ago, although at first I was really happy with the diagnosis, and still am with hopes of finding good and the correct treatment. It’s just so hard to feel connected with the way loved ones react; like you said, oodna. I’m still happy to know, because it explains EVERYTHING in my life, FINALLY 🙂 !!!

I was diagnosed in January of this year. I’m 46. Does that make anyone else feel grateful for being diagnosed in your 30s? LOL! Just kidding and no contempt or judgement here!! I love all you guys already!!!! I am a little jealous though. 😉

It was suggested when I was a kid that I had ADHD, and looking back it seems so obvious. When I was 18 (in 1990), I got tested for all learning disabilities, and a Psychiatrist wrote a letter attached to it saying it seemed that I had “Attention Deficit Disorder. At this time there is no test for Attention Deficit Disorder.” It also said that I had an unusual learning disability possibly caused by ADD, and sensory issues that don’t meet any diangosis. I had this done (my parents had this done for me/lucky me and thank God for them/So blessed to have them until death/mom is still alive) because I was having trouble finishing tests and quizzes, and needed an “extended time” accommodation.

When I was 22 I started having panic attacks (right after my dad died). My PCP gave me Klonipin for emergencies for many years. By age 28 (1999) I had a masters in social work, and was working solely in public schools with special ed kids with mental health problems. This is when I decided to pull the trigger over the stigma I had in my own mind, of seeing a psychiatrist. I went to one that came highly recommended by one of my coworkers, in a mental health position, and much more experience.

Here is my anger ladies and gents:
(Comment: this anger is possibly part of the grieving process of the life I’ve had to live (panic ridden) without treatment or even knowing?)
(again: age 28, in 2009) In my first appointment (diagnostic) with this first psychiatrist I had ever seen, I told him I had ADHD as a child and was having panic attacks since age 22. He said, “You can’t have ADHD and anxiety, so since you are having panic attacks, lets assume that you were misdiagnosed with ADHD and it was really anxiety all along.”

So from then until January 9, 2019, I’ve been treated ONLY for Panic Disorder….all this time…and nothing else. And all of the therapists and psychiatrists that I went to who never saw it??…And all of my coworkers who were in the mental health field??? Yes! Anger!!! I’m mad at myself for trusting that doc so much that I never looked for a reevaluation.

So, now I’m a title processor in Texas (moved in 2013, to marry my late high school/early college sweetheart).

I was in Philly with my bad ass career prior to living here. I was very adhd and panicky (but medicated for the panic attacks) back in Philly too, but working with groups of kids with high levels of severe and crisis behaviors, I was able to hyperfocus, and excelled in my work with the kids. People were always amazed at how the kids responded to me, how I never seemed to get tired, how good I was in extreme emergencies with the kids, and how I never lost my patience with those kiddos.

Moved to TX in 2013 and haven’t been able to land a job of any sort without knowing someone. Hence-I now process automobile titles for totaled vehicles. And I haven’t even mentioned how many car accidents I’ve been the cause of! OMG! Sometimes 1 per year, sometimes more. I’m so lucky to be alive!!!!

My panic disorder psychiatrist was the one who agreed with me after I asked him if it was possible to have ADHD at the same time as panic disorder. He put me on vyvanse 70 mg caps the first month and told me to start working up to a whole capsule by mixing in water and drinking 1/2 for a few days and then drinking a little more, until up to 70mg.

It was a SERIOUS MIRACLE when I first started taking it…60 mg it worked well…and the doc pushed me up to 70 and once I got used to it, it worked. It completely stopped my panic attacks dead in their tracks!!! I never knew that I told myself horrible things like a spinning top/spinning loop of abusive self-talk. I was shocked and sad for my poor beat-up-self. I got up to dose and I heard the loop of hatred and I stopped it immediately.

I believe I developed this self-abuse loop in my head as a coping mechanism/skill(?) ages ago, to help me get through school. If you beat yourself up enough you will become anxious enough to focus on just about anything. How messed up is that??? I also never heard the loop, even through therapy, yoga, meditation, until Vyvanse.

On Vyvanse I was able to just think, “if ‘that thing that just happened’ had happened before vyvanse I would have freaked out and said x, y and z to myself over and over causing a panic attack.” “I don’t feel any of those things right now. How amazing and awesome is this!!” “I don’t need that anxiety now to get me to do what I need to do/pay attention to the things that are hard but unavoidable. I can do it without anxiety now.” When I drive while on my meds, I think, “How cool is this!! Driving isn’t scary anymore!”

Unfortunately, Vyvanse hasn’t been working as well recently and a couple of times my loop has come back and I have had panic attacks. I’m also getting my impulsivity back in conversations (interrupting, changing topics), and zoning out at work again without noticing. Also, Vyvanse has never lasted long enough to be in my system while driving both directions to and from home (work and where ever else I need or want to go), and I’m concerned about my life now that I know that us ADDers are way more likely to die in a car accident than non-ADDers. I saw my panic attack doc last week and he said he wasn’t willing to change my meds. And that was that. WHAT!!!????

So now I’m on a quest to find a psychiatrist that knows what the heck he/she is doing with adult adhd….hopefully knowing female aspects of it too regarding related estrogen levels. I have an appt with a top notch psychiatrist on May 7th. He doesn’t take insurance and charges $300 for the initial and $150 for all of the following visits. My insurance will get some of it, but it’s still going to be hard to pay for. I don’t feel like I have a choice. I refuse to go back to the way I was living! I’m just praying the vyvance will keep me going till then…but I know it won’t. I had some birth control pills lying around (have mirena IUD now), and started to take them a few days ago. I think they are helping. Crazy! Thank God I have this appointment scheduled or I don’t know how I’d feel right now or what I would do. How panicked would I be?

Anyway, I’m very glad to be here with all of you!! So good to have found this forum!! Is this the correct place to just continue to support each other or is there a different thread for that?? I know all of you have lots of stories of your own and traumas or mini-traumas that you have experienced that you would like to get off of your chest. Lots of questions too. I’d love to hear about them, learn from y’all and support y’all!!! This is my first time on the ADDitude formus ever…so I haven’t scoped the format out yet. Any moderators that can give quick advice on this?

Best wishes of peace and joy in your lives, to all of you!
-Deb 🙂