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Finally diagnosed, but finding actual treatment feels impossible.

Nleor623 profile image
12 Replies

I finally got an official diagnosis in December, adhd PI, which I've pretty much known since middle school. But like a lot of people, I had depression and anxiety blamed for everything, with little to no help from medication and therapy.

I was living in Cleveland and got my diagnosis from the cleveland clinic by an adhd specific psychologist who runs their center for adhd. But my first problem is I've heard a lot of people say that after changing doctors, sometimes they'll make you get rediagnosed, or even undiagnosed you if they think they know better.

I'm 99 percent sure I need to be on a stimulant to even have a chance at having a fulfilling life, or even be a useful person. I only graduated high school bc I finally got a psych to consider adhd and let me try Concerta (not great, but when it worked it worked). Otherwise my days are decided by my caffeine tolerance.

I live in Indiana if anyone knows someone. My current searches either don't take insurance, refuse/cannot prescribe stimulants, or have several months to wait (I also have that long to wait to see a doctor who will be my primary care, so I can't ask them).

I've been waiting so long to feel capable of starting my life, and having suffered so long, probably need to relearn how to be a person even if I do get "better". I don't know how to ask a place if they don't prescribe stimulants without being distrusted.

Between all this, waiting for appointments and diagnosis and possibly having to redo it if I choose the wrong place--it could be years still before any treatment.

TLDR: I would really appreciate direction on how to find someone that can prescribe me medication, probably stimulants, and also hopwfully adhd coaching/therapy. Or even just your experiences between diagnosis and treatment. I have already checked chadd directories and searched online a lot.

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BlessedLady profile image
BlessedLady

Rarely, if ever, can a person find out what a doctor does and does not prescribe by calling. This is viewed as drug seeking behavior. Even if a doctor prescribed someone a particular medication. That does not mean the doctor will prescribe that medication to you.

A new doctor will want to diagnose you. Even when a doctor has a copy of a patients medical records. They usually prefer to make their own diagnosis. The doctor that is treating you is the one responsible for that treatment. That is why doctors prefer to make their own diagnosis.

Have you tried any online providers or looked into them in your research. I saw that Done, donefirst.com, states they can assist patients in Indiana. 99% is quite high in terms of your belief that stimulants will be a magic bullet for you. Hopefully they will, but I know that I had high expectations and a number of stimulants ended up providing only minimal assistance - I had one great day on Concerta. The one big benefit of online providers is that in my experience they have often been good at responding to messages. Even if stimulants are suitable for you and you benefit from taking them figuring out the right medication and the right dose is often not an easy process. Best of luck to you. I also have relief on coffee a lot, but also, just for, me, I think it might be better to stop drinking it as although it helps in short term could make things worse overall.

BlessedLady profile image
BlessedLady in reply to

Some stimulants are Schedule II drugs. The DEA revised Federal Laws regarding prescribing Schedule II medication during the pandemic. Now, a doctor does not have to have a relationship with a patient to prescribe a Schedule II drug. By relationship, the DEA means the doctor and patient meeting face to face. This will change when the Public Health Emergency ends.

Some, if not all doctors seen online only. might not be comfortable prescribing a Schedule II drug to a patient they have not seen face to face. It is also possible that some internet doctors do not have a CDS License to prescribe Schedule II drugs. If the medication is not a Schedule II. There should not be a problem.

And look covid has been a record time for therapists. Seriously, therapy has boomed, psychiatric visits have boomed. Everyone is waiting for appointments if you don't already have a provider.

CreativeCat profile image
CreativeCat

I spent days trying to get an appointment with a local psychiatrist or psych nurse near me that takes my insurance (I'm now on a 3-month waitlist).

I couldn't wait that long. I ended up getting my official diagnosis through ADHDOnline.com (they can also connect you with a local doc to get meds). I was able to take their diagnosis to my primary care to get meds.

The meds help but are definitely not a silver bullet for me. Exercise in the morning, getting outside for a walk every day, eating well, staying hydrated and getting a decent amount of sleep are key for me. All of that self care is challenging but little by little, I'm rebuilding my life and feeling better.

Loutysonsmith profile image
Loutysonsmith in reply to CreativeCat

Hi

Never has the term 'silver bullet' been more accurately used in these discussions about ADHD meds! After my diagnosis at 52 I started to take Elvanse and very quickly I realised there was no silver bullet for what is essentially a lifetime of ADHD effects. It got me down for a while and then realised I just had to carry on trying other ways of living, existing, managing.

Meds really aren't a silver bullet especially for late adulthood diagnoses - I have had to radically change my life and expectations of me. It's liberating and humbling as well as scary.

If I could change myself and remove my ADHD, would I? I'm not gonna lie, my life has in many ways been much harder than it should have been due to ADHD. What I really would have liked is for my difficulties and differences to be acknowledged and supported - that's what would have made the difference.

Lx

Nleor623 profile image
Nleor623

Thanks for responses guys. I've been concerned about all the new subscription health services popping up, but barriers like these are why they're useful. I had it as a backup possibility (and it's nice to hear some people who have actually tried it! So they aren't all scams) but online doctors can't prescribe stimulants in my state. Also a problem bc many doctors are only doing telehealth now.

CreativeCat I didn't know they'd help you find doctors for the meds though, I assumed most doctors wouldn't accept anything. Most of those sites have a monthly subscription fee plus the cost of sessions and medication (though hopefully if another doctor prescribes, it could go through insurance). How much did you have to spend and do you have to keep the subscription, or was it more a starting point?

Totally unnecessary to read but helpful for me to organize thoughts:

I always rant when I type (if not obvious), so I didn't want to overexplain, but I know stimulants aren't a cure for all my problems. But most of my reasons for believing it's at least a key to finally have a chance:

1. Concerta in highschool, great when it helped, but the long active time combined with not being able to find a dose that consistently wasn't too much or too little--kept it from being regularly useable.

2. When I discovered a way to like coffee in college I was obsessed (funnily one of my older brothers, recently diagnosed, had a stage like that too) and it pulled me out of a freshman slump for awhile. Tolerance makes it impossible to predict its helpfulness though and I'm sick of it by now.

3. I've been on effexor (venlafaxine) as well as welbutrin and lamictal. When I first started effexor it yanked me out of an almost dream like state I'd been in for months--couldnt hardly think talk or move. Unfortunately it lost a lot of effect over time no matter how hard I try to keep it up, and my last psych was strangely very mad when I said this.

4. I have 3 brothers. Oldest was diagnosed adhd as a kid, more recently diagnosed bipolar and more recently also as autistic. He doesn't think he has adhd now but Adderall still helps him function. Next oldest was recently diagnosed and is also helped with just a small dose of Adderall. My youngest brother is autistic in the way that he'll need full time support his whole life and doesn't communicate like we do. So they never really bothered to check him for adhd, but just to say neurodivergence runs in the family.

With all the versions of stimulating things, when they help, it's usually enough to make me want to cry at the difference. Doing tasks is just doing tasks, and not like building myself up for misery of one single thing and needing the rest of the day to recover. I'll think I've become completely stupid and useless, and then with some help, it reminds me of the person I could be, or that I used to be before things got real bad. Even takes away most aspects of my depression and makes other parts seem possible to fight. I'm in a pretty good place in my life right now where my biggest problem is really just me, and I've wasted a lot of my life by not functioning to full capability.

CreativeCat profile image
CreativeCat in reply to Nleor623

Hi Nleor623 I just saw your reply. I'm new here and didn't realize I had to login to see those.

I had a totally non-scammy experience with ADHDOnline. It all felt very professional.

Their diagnosis is accepted nationally which is why I could take it to my doc (and have that covered by by insurance).

If you're still looking... you can check out their website to see if it feels right for you.

It's the least expensive option I found. Just a one-time payment for the diagnosis (or you can pay in 3 installments of $55, which is what I did). And they don't send you emails trying to sell you anything else.

I'm now taking a low dose of Adderall and it's helping hugely with me getting challenging tasks done. I also have PTSD and GAD and taking the Adderall actually helps me feel less anxious. But it's not a magic pill that I'm willing to take every day because it does have some side effects that I don't like and I don't want to go down the road of addiction where I have to keep increasing the dose.

I'm also integrating other things that are good for me: spending time in nature, exercise, music, dance - making sure I do something I love (and that's physical everyday) - that also hugely helps with my mental health.

Good luck and I hope you find what will help!!🤞🍀

Rebel_Elf profile image
Rebel_Elf

Wow! Your story is nearly identical to mine! Same problems now with mental healthcare industry and it’s inadequacies, biases, etc. So I’ll be following this thread closely.

Nleor623 profile image
Nleor623 in reply to Rebel_Elf

Haha every time I start to doubt myself or feel alone, I come here and read some people's stories. Kind of astonishing how many feel almost identical with symptoms and issues with healthcare. At least we're all in this together

SCR4MBLES profile image
SCR4MBLES

Hey mate my one bit of advice is book in one of the appointments that are still months away (and write it down somehwere so you don't forget the place).

You can always cancel if you manage to find a better appointment but if you're anything like me there's the large possibility of never getting around to finding the right place that you don't have to wait months for. And at that moment you'll realise, that appointment you booked for months away is actually next Tuesday and you'll laugh at yourself for a moment and be glad you booked it when you did :)

Good luck!

Nleor623 profile image
Nleor623 in reply to SCR4MBLES

This is very smart and obvious advice that I somehow hadn't considered, haha. Thanks!

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