Newly Diagnosed (ish) and lost!

[Ske22]

Hi everyone, I’m a 30-year-old female, and for about the past 10 years I’ve been struggling with what I thought was anxiety and depression. I went to therapy on and off, and last year was prescribed Lexapro for anxiety. It seemed like it maybe did a little bit for me, but it didn’t address a lot of the problems I was having. Fast forward to about a month ago, I was following up with the doctor that prescribed the anxiety meds, who is an endocrinologist. We were discussing my chronic fatigue, and he seemed to be of the opinion that it was depression related. I tried to explain to him that it wasn’t a lack of motivation or depressed feelings that were making me stay in bed or feel tired. I’ve had experience with the “emotional tired,” and it isn’t that, it was purely physical.

He decided to prescribe me Ritalin to help with the fatigue, and referred me to a rheumatologist based on some of my other physical symptoms, suspecting I may be dealing with an auto immune disorder.

The first time I took the Ritalin was in the morning, Expecting that it would perk me up a little bit hopefully like the doctor said it would. Well imagine my surprise when I ended up taking a nap shortly after. Over the next few days, I realized that the Ritalin wasn’t doing anything to help with my fatigue, but on the mental and emotional side, I just felt...better than I had in a while. So I started doing some research. I knew that for kids with ADHD, Ritalin was supposed to have the opposite effect on them. But that was basically all I knew, was the stereotype about hyperactive little boys. So that was pretty much my jumping off point, just seeing that the medication had the opposite effect on me than I expected.

I dived into a bunch of research, articles forums, everything I could find. And for the first time, it felt like everything suddenly made sense that hadn’t made sense before. Other people put into words the things that I never accurately could. It honestly brought me to tears more times than I could say. It was this overwhelming sense of not feeling alone anymore, that I wasn’t just lazy or selfish or a bad person like I feared deep down. I could now explain that the feeling I always had wasn’t actually anxiety at all, that’s just what I called it because I didn’t have a better name for it. I don’t find myself worrying about things excessively, or being afraid of nervous, it’s just that feeling of constant restlessness that gets overwhelming when I can’t let it out. And if I’m sad, it’s not because I’m depressed for no reason, it’s usually because the ADHD symptoms have caused me to do or not do some thing that I’m upset with myself for, and feeling like a total failure.

Long story slightly less long, the more I read the more I was convinced that I had been struggling with ADHD for a long time, but I had flown under the radar like so many girls do. I had just recently started seeing a therapist to try and work through some of the problems I was still having, so I called her and made an appointment to see what she thought. After I explained the situation to her, she took me through several “do you...”checklists , and everything was like yes, yes, definitely yes, absolutely yes, yes, yes and yes again. She said that based on what she could tell, she definitely thought that ADHD was a more appropriate diagnosis for me. She told me that she was happy to continue working with me, but that she wasn’t very well trained in ADHD, especially in adults.

I wasn’t supposed to see the doctor again for about another three weeks, but I called to make an appointment. I explained everything to him about how the Ritalin didn’t do what he prescribed it for, but that it made me feel better in a different way. His response was basically, “well duh, why do you think I prescribed it?” As if that had been his plan all along. And I was kind of dumbfounded and taken aback because his whole demeanor was basically, “so why are you here? I gave you the meds, it worked, what’s the problem?” Like all of this was old news, and I was the only one that was late to the party.

I got so frustrated and upset that I couldn’t even tell him all of the things that I felt like I needed to, or ask all the questions that I wanted to. I felt like I had a million questions. Is this an accurate diagnosis? Is this the right medication? Is this the right dosage? Should anything change about how or when I’m taking it since I’m using it to treat something entirely different now? But I just felt stupid and embarrassed, like somehow this was all so obvious already. But I knew that that wasn’t true.

He had previously prescribed me another medication to take daily for anxiety on top of the Lexapro. I tried to explain to him at this appointment that I didn’t feel like anxiety was really the problem, that’s just what I had been calling it because I didn’t understand what I was truly feeling. I asked him if there was a chance that I honestly didn’t need the Lexapro, that may be the Ritalin alone would do what he was trying to accomplish with the Lexapro. He told me I was just in denial, and that I needed to keep taking all the medications. I said I really didn’t want to be on a daily benzo, so he gave me a prescription for Xanax to take as needed. He said he didn’t need to see me again for four months, and that was that.

I left even more confused than when I went in, with even more questions, and embarrassed on top of it.

Since then I’ve been taking the Ritalin the way he prescribed, and still taking the Lexapro, but only taking the Xanax to try and help with my recent onset of REALLY bad insomnia. I feel like I’m on this crazy roller coaster. I have noticed some benefits, but I’m also struggling with some really bad side effects and I don’t know what’s normal or not. The only help I have had is from the Internet. The Ritalin has killed my appetite like none other, and I’ve lost at least 15 pounds in a few weeks. I’m having a horrible time trying to sleep, I’m getting these weird mouth sores and tongue pain which I just recently figured out I think is partly and due to having a really bad dry mouth all the time now, but it’s like my mouth just can’t get comfortable now if that makes sense, so I’m always rubbing my tongue against my teeth or biting at it.

Hyperfocus has always been an issue for me, when I get a project in mind that I want to do it is often near impossible for me to leave it alone. But now it’s particularly bad, but in a more zombie like state rather than my usual hyper active “go go go” state. I feel like I just lose hours lately, relentlessly scrolling through Amazon planning the things that I want to do to the point that I don’t even remember where I started, but I haven’t moved and I don’t even want to look anymore, but I’m still doing it. Then all of a sudden I’ll be in a frenzy of activity for a short period of time. Which isn’t necessarily abnormal for me, but the zoning out is.

From everything I have read, I’m thinking that the dosage I’m on is probably too high, but I would really like to get some guidance before I start changing things on my own. I feel like I’m just shooting fish in a barrel right now, and I don’t think it’s supposed to be like this. I really need somebody to be following along with me who is educated on what to do, but I don’t even know who that is.

If you’ve read this far, I really really appreciate it. I’m working on finding a professional in my area, but I’m kind of lost as to who I even need to be looking for. Any kind of guidance or support or words of encouragement are greatly appreciated right now. I’m feeling super down and totally overwhelmed, and I could really use some answers.

[Hidden]

I used to take Ritalin I was sooooo underweight for my age and when I went to the hospital for a concussion they were more worried about my weight. Just be very careful around Ritalin.

[Ske22 in reply to Hidden]

Yeah, it’s definitely scary and a big concern for me, because I was already very slim to begin with. I look sickly right now, and my appetite is nowhere in sight. I find myself skipping doses of the Ritalin just so I can hopefully eat, but then the inconsistency is really screwing with me. And I miss eating because I love food 😩

[Hidden in reply to Ske22]

IKR, I stopped taking it but I still have trouble eating when I'm hungry

[Ske22 in reply to Hidden]

Hopefully you can get your body readjusted to eating normally again soon!

[Hidden in reply to Ske22]

Yeah So what things are you thinking about changing?

[IgnoranceWasNotBliss]

Hi! Welcome to the tribe. I’m so happy for you that you figured out what’s happening in your life. I figured it out at 40 years old. Only 3 months ago. It’s been crazy! So, let’s get to it!

First, what dose are you on and what is the form? An immediate release tab or extended release?

Second, you dr is 100% not managing your adhd. It definitely sounds like you’re having dosing problems, possibly even wrong prescription problems and the dr should be tracking all of it on at least a monthly basis to start. Also, my stimulant 100% fixed my anxiety. NO anxiety med necessary. That’s just me though. According to my dr, if adhd is actually your diagnoses, all co-morbidities shouldn’t get treated until after your medication is completely titrated (adjusted properly). I see why he does that now. My anxiety really did disappear.

So the hard part begins. Finding a dr!! This has proven extremely difficult to many of us. A lot of dr DONT deal with adhd because they don’t want the hassle and risk of prescribing a controlled substance. For that reason, it’s best to only see dr’s specializing in adhd. The fastest and easiest way to do that is to skip insurance. If you have money, even a little, it’s best to go private. After multiple failed attempts t get help, I went on google maps and googled Adhd clinic. Everything is remote so I only had to be in the state for help. I didn’t have to do to an office (which is 6 hours away). This place cost me $300 for intake and seeing the dr on zoom. He diagnosed me. My does is adjusted through email and every 2-3 months I speak to the dr for a few minutes. That’s $200 unfortunately. But after the struggle we had to get a dr, WORTH IT!!

Just 2 days ago my husband came across a company called DONE and AHEAD. If I knew about these first, I would have do this! Their prices are different, but for example, I think DONE was $199 for your test and diagnoses if you have adhd and then you have a monthly membership type fee. They adjust your meds, which actually takes a lot of work and communication, and order your dose every month. Dr’s can’t give you a supply over a month. The prescription always has to be new. If you want to get on track sooner rather than later, I would do that! Once you’re all sorted, you could possible ask your primary care dr to take over. Tell them you medications are all sorted, you know your does, someone did all the work for it, you just don’t want to pay do much anymore. Or, go back to the dr that, kinda diagnosed you, having your ducks in a row. You got properly diagnosed and your meds are titrated. That’s probably even better. Then he just needs to refill your script every month. I know money can be very tight for people, but honestly, the beginning can be extremely difficult and needs proper management by a professional. 100%. That way you can know what’s best for you, what’s not best for you and feel heard. That’s important.

Good luck hun. I hope this works for you.

Oh by the way, DONE and AHEAD are the most talked about online but they don’t serve all states. They don’t serve mine. So then I put “adhd online” and the name of my state, and I found a very similar website that does my state. So those companies are out there.

[Ske22 in reply to IgnoranceWasNotBliss]

Thank you so much for taking the time to share! That’s extremely helpful, and I’ll definitely be looking into the private options!

[wishy2]

This is so familiar lovely! You’ve been through a lot, but the final jigsaw pieces fits in and the journey begins. Mi got diagnosed correctly aged 46, with three degrees, four children and a career I must have had a lot of strategies that worked! And control over Hyperfocus, but it was clear that occasionally I couldn’t juggle fast enough. You need a good AHD psych and a lot of knowledge and then you become your own master.

I too often sleep really soundly an hour after taking lido-dex in the day, but become insomniac at night. As the story has unfolded ( more than unfortunately) I became very ill two plus years ago with a maybe-random autoimmune disorder. I’m mending after a year of hard core therapy and trying to put my life back together through Covid and self isolation through out. I don’t work anymore, I left my job as a medical consultant two years ago on sick grounds, but I’m out of bed most days and there is a future.

The glue that sticks it together though became clear later. In addition I have ehlers danlos hypermobility snd this is what made me most unstuck.

I am wondering are you hypermobile?

Yes, the too high znd too low side effects are very similar. There’s a brilliant book by Charles Parker called ‘new rules’ of ADHD meds. It literally saved my life. Try find it.....

Good luck !! Have ADHD on a leash. Nd it’s your best mate. Gives you superpowers.

[Ske22]

I love the “on a leash” comment! That’s all I want. There are parts I love, and don’t want to lose, just need some control!

[Agiftitis]

I understand where you are coming from. Several things that have worked for me & are MUSTS:•Daily exercise- first thing

•meditation/prayer

•”Soul” work

• Enneagram

• accountability with a trusted a friend

[Agiftitis in reply to Agiftitis]

After rereading my response, I realize I neglected to include some very important things that work for me as well:•I take cymbalta and add meds- it took me a bit to figure this combo out

• I was blessed with meeting some good friends at just the right time in my life who just happened to be physiatrists! They have been an answered prayer. They would say that Ritilan is definitely outdated. There are some great newer options . Jornay is a newer one that you take before bed and it basically sort of prepares your body for the next day while you are sleeping . Supposed to help with sleep as well I believe. Mydayis is another med option

• when I am being disciplined 🥴 I do my best to avoid sugar and processed foods as much as possible- these are definite evils for this gift we have. If you haven’t already, check out adhd diets- not so much diet, but way of life- lots of good stuff there

Wishing you much hope on your journey to your truest and most fabulous self!