Atypical Reaction to Vyvanse - CHADD's Adult ADH...

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Atypical Reaction to Vyvanse

Daffodileyes profile image
11 Replies

Hello, community.

I was recently diagnosed with ADHD at 36 years of age. It explains so much about my whole life! I tried my first dose of Vyvanse yesterday (20 mg), and I am feeling a bit discouraged about how poorly I responded to it. It felt as though someone had taken an ice cream scoop and removed my brain. I felt like a numb zombie for the first six hours. Then, I became anxious, depressed, and fatigued. My psychiatrist told me to stop taking it, as this is an atypical reaction.

Has anyone else experienced this?

It was a "tough pill to swallow," if you will, because I was feeling so excited and hopeful after finally receiving what felt like the right diagnosis. Now, I'm feeling my bad reaction to the medicine means that I don't actually have ADHD, and I'm back at square one. I realize this is potentially irrational, but it is difficult not to feel this way after years of struggle.

I'm so happy there is a community like this, and I'm looking forward to "meeting" you all!

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11 Replies
sthurman1981 profile image
sthurman1981

Don't get discouraged, ADHD is not always something that can be treated with medication alone and there are a lot of different meds on the market. I am 40 years old and have been diagnosed as ADHD since I was 6 and am still learning how deep the rabbit hole goes. I used Vyvanse when it first came out (2008/2009) and I remember that it took a while to get the dosage right - we over shot the mark and I actually ended up losing a job (its a long but funny story). Anyways, I liked it because it gave me more energy (not the word I was looking for but it'll do) which allowed me to focus earlier in the day (7:30/8) when before I was still "waking up" until almost 11am. I also liked it because I am a recovering alcoholic and Vyvanse is in a form that has to be metabolized to be effective so more difficult to abuse. Unfortunately after about 10 years on it I was maxed out and starting to have serious issues focusing and being really tire early in the afternoon so we switched to Adderall. Because it doesn't have to be metabolized it kicks in faster and would allow me to take a small additional dose around noon w/o having it effect my sleep too much. Great in theory, but turns out Adderall doesn't work for me at all. So now I am on my 4th med (its being used off-label so I won't disclose the name) & just started IOP.

I am going to borrow an analogy that is normally used when referring to the differences between men & women because I just think it really fits. Most people hear ADHD and think waffles - trouble concentrating, easily distracted, forgetful, and can't sit still...etc but that's not really true for most of us. Take me personally, my ADHD is more complex; its like spaghetti not waffles. I have a co-occurring condition (BPD) which influences the presentation and severity of my ADHD symptoms. Turns out things I thought were just negative personality traits have been the ADHD the whole time! Deep down I am not really an asshole, who knew. Pharmacotherapy is great but its not going to be 100% effective for me so I am on here researching alternatives that I can use to supplement it like psychotherapy, executive function coaching, support groups, and different academic/work place accommodations that might help enable me to perform my job at an optimum level.

Hubby just called me down for dinner so I have to go. Good Luck & hang in there!

Leefordss profile image
Leefordss in reply to sthurman1981

Wow, your experience sounds somewhat close to mine with regard to having a co-occurring condition. I was originally diagnosed as Bipolar II, but I really question that diagnosis because the depression usually presents itself when I get overwhelmed and can't focus. I can deal for a while and I have a somewhat high tolerance for stressors, I guess, but not when I got that limit, then medication isn't so helpful at that point. I have trouble forming connections with others because I tend to frustrate people and they don't give me the time of day as a result therefore they don't get a chance to know me. I've certainly lost friends because I don't let people know about this side of me, so they don't understand my reactions to certain things and so as I've gotten older and moved around, is gotten more and more difficult to make friends.Thanks for sharing your experience,

Lee

CoralGem6 profile image
CoralGem6

You should switch to the other neurotransmitter stimulant or non stimulant. Such as Ritalin or concerta. I had the opposite effect with Vyvanse and felt like a zombie with Ritalin.

BluebirdAbove profile image
BluebirdAbove in reply to CoralGem6

I agree- trying different medications & dosages is critical. I understand people typically respond much differently to Adderrall vs Ritalin for example. The good news with those short-acting versions as a starting point is that they start working within ~30'min and out of your system in several hours (?4-5).

humble-rasberry profile image
humble-rasberry

Helloo! Congrats on getting your diagnosis!!! I know it can be an extremely bittersweet feeling, so take your time to process it. And learn as MUCH as you can on ADHD! Diving into any adhd content I could find what was really helpful when I was (and still am) figuring out the symptoms interfering with my life that need attention. Learning about it can also help you learn about different medications that are possible. I was started on Adderall as my first dose. I had no idea what I was looking for, didn’t exactly understand the side effects, the comedown, the time it lasted, adjusting medication etc. so I just assumed it wasn’t working because I had bad stomach aches and it was suppressing my appetite the first week which was really uncomfortable so I stopped it. I tried Ritalin, then vyvanse, and vyvanse was the worst. It was so intense and the hyperfocus felt way too much for me. the comedowns were so scary and eventually started getting darker leaning towards suicidal thoughts which is when I immeditetly stopped. But having had more experience with different types of medication and noticing how vyvanse did give me more of that drive and focus, even if it was too much, I decided to try adderall once again and I never noticed how great it was! I take IR boosters in the afternoon which I find really helps me as well. But I like to only take them when I need to (aka i usually don’t take it over the weekend) because after taking them for a week straight they become less ineffective.

I personally had an awful experience with vyvanse, but it works great for others. We are all so different so its hard to tell exactly. But, I can share some tips that did help me handle vyvanse better- so my psych actually started me on IR boosters which helped the comedown, i just didnt like that I would be taking them around 4pm and then it would keep me up at night. Also do not consume any vitamin C an hour before or after taking vyvanse bc it makes it less effective. Zombie like is a sign your dose is too high, but typically vyvanse doses are higher so i think 30mg was roughy equivalent to 10mg adderall. So it could also be that your dose is too low, I know super weird. Also working out around the time it would wear off helped because I would get really irritated, but then could channel that energy into fitness. I still have some of this irritation with adderall sometimes, but I think that is also tied to my depression. But Adderall is a lot smoother so its a gradual comeup and comedown compared to vyvanse which is typically known for being more sharp up and down.

Moral of the story is definitely do not be discouraged! It takes time to find the right medication, and I know how frustrating it is that feeling of being so close!!!! For me it took about 6 months to figure it out. Still thinking about if there is something better, but for now my medication does what it needs to.

And take care of yourself, I experienced a lot of grief after my diagnosis, but I did not find this community until a lot later, so I am glad you are already a step ahead where i was. Things will all work out, best of luck! ❤️ (sorry for the long message)

jilllewis84 profile image
jilllewis84

Hey! Same boat on the Vyvanse troubles -- it made me feel "off," like slightly out-of-body, but in a way that was super distressing. It was definitely not a good fit for me, though it does work perfectly for some. I've been on meds since the beginning of the year and am still trying to find the right fit. So far generic Adderall xr has gotten me the closest -- the brand name had too many side effects, which is just to say that it's really worth it to try to experiment with every single option until you're happy with the results!

Also, your feelings of "imposter syndrome" around ADHD are totally common and normal. I think most people experience the "do I really have ADHD or am I just making it up?" doubts on and off for a while after diagnosis. Maybe even more so when you're open to accepting your diagnosis or you've been seeking it for a while. I know that's how it's been for me. It's frankly unreal to think such a huge part of how I function was "secret" up until now.

There have been times where I feel like everything is in place--meds working, good structure, routine pumping--and I'm performing at such a high level, that I'm like, "wait, this shouldn't be possible with ADHD. I guess I'm full of ship & I've given myself all these tools and support for no reason." (I mean, like that even makes sense.) There are also times when I'm down and even knowing all I do about ADHD I feel like I should be able to "snap out of" executive dysfunction. (Also, no sense.)

So take heart. You're feeling challenged because what you're going through is challenging. But you're not alone and clarity will come with time. Create reminders to be patient and forgiving with yourself as you get there. Good things are coming!!

Learning101 profile image
Learning101

Don’t worry, there are tons of medicines (and other strategies) for ADHD. It is not unusual at all for the first medicine not to work. So don’t give up!

Leefordss profile image
Leefordss

Daf,Don't give up. It's far to early to make any determination on your diagnosis based on exclusive with only one med. Personally, Vyvanse was a wonder drug for me. Doctors spent roughly 20 years with up to 4 or 5 medicines at a time and always varying the dosages of each. Some were even just to counter the side effects of one of the other meds. It was crazy. When I was diagnosed as ADD and tried Vyvanse, it was like a fog was lifted and now I was able to finally think. All of the little "arguments" that I was having in my head were cleared away. I could actually THINK, and it was amazing. When I changed insurance, they made me try all the "traditional" formulary drugs for adhd before they would approve Vyvanse, even though I'd been on it for years with proven results. Since I had moved recently and changed PCP's, they hadn't prescribed any of those other meds, so I had to go through it all again. On the plus side, I only had to go through all the ADHD meds, not all the anti depressants again or mood stabilizers again, so it was faster and I got back to Vyvanse again. I've noticed this time though that something seems to have changed and it doesn't quite do it for me like it used to. I'm looking for a new therapist to help me with my behaviors and habits and thought processes, because it all works together, not to mention healthy diet and good sleep.

So, don't get discouraged because your first med didn't work. Honestly, 20 mg is there lowest dosage, and doesn't even make a dent in my mental health. I'm on 50. It causes more overall insomnia, but without it, I still can't sleep because I'm to anxious about just about everything. Either I'm just not tired, but the rest of me is at peace and I can't sleep, or I'm anxious, can't stop my mind from racing on a multitude of issues, and still can't sleep, but mentally exhausted. I choose the first and am more at peace for it.

Step up the dosage, or try something else. Also look for a therapist that focuses on mindfulness. That combination has helped me the most of all.

Good luck,

Lee

ADHD33 profile image
ADHD33

Another story here of adult diagnosis and not liking Vyvance. When I was first diagnosed I tried Vyvance, Concerta, Ritalin, short acting adderall and then finally landed on adderall xr. The first day I tried adderall xr I actually teared up because I felt so “normal” for the first time in years. Apparently I needed a super low dose - I take 5mg - but it works wonders for me. It’s basically the pediatrics starting dose! Honestly if I could, I would even try 2.5mg but they don’t make it.

The diagnosis is the first part of the ADHD journey. Congrats and welcome!! It’s a HUGE step and allows you to start educating yourself on ADHD, begin to validate your experiences, and better understand yourself. It also opens the door to part 2, which is finding the right combo of medications and coping systems/strategies that make your life easier. I’m now over five years post diagnosis and my life is much more organized and filled with tools (medication and others) that help me live life. Don’t give up if it takes some time to figure out the right meds… it can take a bit but just keep trying. In the meantime check out educational resources: ADDitude is a great starting place! I also love tiktok where tons of ADHDers post videos about life and, often, their coping strategies. Good luck and you’ve got a forum here with lots of others going through the same thing to cheer you on!

addacademic profile image
addacademic

Gosh. Reactions to stimulant medications can vary so much between individuals. I'm struggling with a parallel issue with finding the right dosage for my particular array of symptoms. But I can tell you this: I had a very bad reaction to Ritalin before being put on Vyvanse. Ritalin made me feel just awful - extremely anxious all day, all the time. Vyvanse is better in my case, but not perfect (yet?)

Don't get discouraged. Finding the right medication and psychotherapy combination takes time. In the meantime, track your symptoms and responses to the med dosages. Maybe in a journal or one of those "Mood Tracker" apps? This will help you explain your reaction to your doctor in the clearest possible way - which helps them help you.

Kh0shi profile image
Kh0shi

This is a very normal reaction , I had this problem before my body got used to it , now that i got used it , it does the opposite. However, the first time I tried an adhd med it wasn’t vyvanse and it did not have that debilitating effect on me

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