Looking for advice on advanced diagnostics/treatment centers I could visit for a few days for adult inattentive type ADD.

[LiamFL]

TL;DR: I am struggling to find a treatment that works. Looking for a center or program I can leverage who might be able to apply some diagnostics (MRI/EKG/blood biomarkers etc) to find a treatment that is effective for my ADD-I.

Also sorry for the wall of text. I am just so frustrated right now.

I have struggled with anxiety my entire life but wasn't effectively treated until my early 30's, the country I lived in before then just didn't take mental health treatment seriously and ended up trying several TCA's for a few years without being offered SSRI's or CBT to help with my symptoms. Not here about anxiety though, its amazingly controlled thanks to Trintellix (no side effects and it basically turned off my GAD, I have emotions like a "normal" person now!).

I never considered that I might have ADD, I always put my problems with finishing projects and behavioral quirks down to personal failings not an actual problem with my brain. I always thought everyone had an internal monologue that enormously distracted them all the time.

18 months ago I moved so started seeing a new psychiatrist for my anxiety treatment, I don't do PCPs anymore after a year of absolute hell where they just didn't seem to understand how to treat me. As part of her intake interview she did an ADD assessment and I basically hit every single question for inattentive. Told my wife, who is a teacher, when I got home and she said "duh". Internally I was thinking "why couldn't you tell me this 15 years ago, our lives would be profoundly different".

I have a good career and the coping skills I have developed largely allow me to function at work and at home. Since I found out it wasn't just a personal failing I can't stop thinking about how different my life might be if I was effectively treated. I know I will regret it if I don't explore all options for treatment but I am struggling to find resources.

I like my psychiatrist but she has run out of ideas.

First drug my psychiatrist tried was Adderall IR. I found more than 5mg * 3 to be way too speedy (and usually no more than 5mg *2) and even when it wasn't too speedy it was frantic energy, I wasn't able to think but I could act; if I had a task list written before I took it then I could blast through what I needed to get done. I seem to be extremely sensitive to CNS stimulants.

The most productive periods of my life were in the hours after it wore off. My mind was quiet, I was able to get lots of things done even though I had some fatigue from the Adderall. I tried explaining this to my psychiatrist as it seems diagnostically useful (almost like its one of the metabolites helping me not the drug itself) but she just brushed it off.

I had to discontinue though because it had a profound impact on my blood pressure. I have had high blood pressure since I was a teenager (at the time not related to diet or exercise, strongly suspect just genetic lottery) and its somewhat treatment resistant (lisinopril & HCTZ barely keep me below stage 1). Adderall pushed me up by 40/20 to just short of hypertensive crisis.

Next I tried Strattera. It made me sweat a great deal but didn't do anything for my focus. Previously I had taken Wellbutrin before my diagnosis and it just made me angry but no additional focus. I have also taken SNRI's in the past for my anxiety which didn't help with my anxiety or focus which has me thinking my problem is either dopaminergic or downstream from that system.

Took a break from treatment after that. A month ago I tried Vyvanse. At 30mg I had stupid amounts of euphoria, couldn't stop talking and while I was on it I could focus but I was crazy easily distracted. Instead of my work I was writing diatribes about nutrition & the med diet. It made my memory go to hell, first time I took it I spent a good 10 minutes trying to remember how to spell "tier", so even if I had a task list I would just forget it existed and do something useless. Blocking reddit entirely didn't help, I just sat there not sure what to do. BP impact wasn't as bad as Adderall (would need a med adjustment to keep taking it but it was a manageable rise). Loss of appetite was profound and extended in to my days off, at the worst I was struggling to eat 1000 calories a day. I tried it at 15mg and it was a little better (still problems with memory but could eat). Like Adderall the best periods are when it wears off, I spent 2 hours reorganizing my kitchen last week which is something I have been intending to do for nearly a year now.

Psychiatrist just prescribed Qelbree which ill be starting this weekend. I am not confident of it working as its mechanism of action is norepinephrinergic plus its got significant BP side effects.

What I really want is a treatment center where I can go and have them throw the diagnostic kitchen sink at me. I know there have been lots of interesting developments in biomarkers in the last few years to help with personalized treatment. I live in Florida but I am happy to travel somewhere for a few days for them to prod me and poke me. Totally ok with telehealth too.

I don't care what diagnosis I have, I would just really like a treatment that works.

[BlessedLady]

I'd there is anything like that. I seriously doubt you will find it in Florida. When you too stimulants were you taking extended release, immediate release or both ?

[wtfadhd]

Hi LiamFL,

that sounds VERY frustrating! ugh.

what symptoms in particular are you trying to manage? u said ur anxiety and depression were finally under control. is it the inattention that you want to address?

Not sure what country you are from but in the USA, its a big pharma nightmare!!!

[EastsideTilly]

I have a very similar story to yours and have wondered if there was a center I could go to for help. I was being treated for GAD and panic when a friend suggested I had ADD. I was diagnosed but the Adderall triggered my anxiety at work. I was too afraid to try again. I've given up on meds mostly, but really wish I could find the relief that others have found. I looked into Hallowell ADHD Centers and may still give them a try. Here's the info they sent me.

Thank you for contacting the Hallowell Todaro ADHD Center. We are a full-service ADHD center, with a strengths-based approach, providing a range of services including: Evaluation & Diagnostic Services, Therapy, ADHD/Executive Function Coaching, ADHD Medication Management, Parent Coaching, Cognitive & Academic Assessment, as well as a number of webinars, classes, and groups. Before scheduling, we wanted to provide you with information about our new client evaluation process.

Please note: We are currently scheduling new clients, but please be advised that space is limited in regards to after-school/evening availability for new client evaluation and all ongoing services. However, we do have morning and mid-day appointments available.

New Client Evaluation & Diagnostic Services

For all new clients, we require a 90-minute initial evaluation and a 50 -minute follow up appointment to be completed so that we can better understand their individual needs. Through this evaluation with a licensed therapist we get a complete picture of the client's health. Whichever stage they are at—pre or post diagnosis—the therapist can then best assess the client's situation and develop a personalized care plan based around their individual needs -- this may include further evaluation and diagnosis, regular therapy or coaching sessions, medication management and/or any of our other wraparound services. The cost of service for this initial evaluation is $500 and the follow-up appointment is $250.

Out-of-Network Provider

For all insurance purposes, Hallowell Todaro ADHD Center is considered an out-of-network provider. Payment for all services is due at the appointment. We are not contracted with any insurance providers, public or private, and do not accept Medicaid, Apple Health, or state assistance. We recommend contacting your insurance provider prior to scheduling with us in order to obtain accurate coverage details regarding out-of-network reimbursement options (see our out-of-network insurance flowchart for guidance). We cannot guarantee any coverage options. If you would like to discuss this process further, we are happy to walk you through it over the phone to ensure you have all the information needed.

Also, FSA or HSA funds can typically be used to pay for our services.

California State Residents Only

Services with licensed providers (including therapists and medication providers) may only be provided to individuals within the State of California. If you are not a resident of California or are traveling out of state, we will not be able to provide services with licensed providers at this time.

Telehealth

We are currently offering all services virtually. For clients who struggle with virtual services, we have a limited number of in-person appointments at our offices in Mountain View and San Francisco.

More information

Please feel free to contact our front desk at 650-446-4900 if you would like to schedule an intake appointment or learn more about what we do and how we work. We collect a $250 deposit for any intake appointments scheduled.

[Knitting20projects]

I was looking for information about Dr William Dodson’s group (Denver metro area), which moved and changed names recently I thought. If I find it, I’ll post it. I would consider Dr Thomas Brown’s clinic (California). I’m sure they don’t take insurance, but if they help you find improvement, it might be worth it. I don’t know if they would admit you or have a residential center, but maybe you could get a hotel for a few weeks or something and they could do an intensive evaluation & med management. I read Dr Brown’s book “Smart But Stuck” which was impressive. He really evaluated those patients (in book) thoroughly and based their treatment plans on their very individual needs.

brownadhdclinic.com/dr-brown

[Gettingittogether]

You could also just find a really good psychiatrist, different than your current psychiatrist. And start over.

It is challenging to find really good psychiatrists--patients are hesitant sometimes to write public reviews of their psychiatrists. Top psychiatrists are often brilliant and they often have more confidence to experiment and try out different meds and combination of meds. They are also usually expensive.

[Knitting20projects]

I’m a physician and would just check you have been evaluated for rare but for fixable causes of high blood pressure. If you have something fixable, you might have more ADHD medication options or tolerability. For instance, narrowing of the arteries to the kidney(s) (kidney ultrasound with Doppler of kidney blood vessels will look for this). Another rare but occasionally missed cause is narrowing of the aorta. They can check your blood pressure in each arm & a leg, plus feel your femoral pulses (in groin) to screen you. An ECHO (heart ultrasound) can look for narrowing. I am 99% sure you’ve had these but can’t hurt to ask.

[notanotter]

Honestly your psychiatrist doesn’t sound too bad - they have to go through different tracks to try different drug options, and unfortunately that takes much time.

The doctor who wrote you might want to focus on the blood pressure angle might be on to something as well.

But about the centers you mentioned: I’m not aware and will follow with interest. The worry is that it’s easy to fall prey to unscrupulous people with expensive scans and tests that have little basis in science.

So maybe look at the US NIH clinical trials for treatment resistant ADHD or similar. You would at least be able to find researchers and clinics experimenting in your area of need.

[StoneJeweler]

Go to AmenMD. He has the answers. Read his bio, and check out what he offers. He has clinics in several states, or they can help online/phone.