Progressively worse stimulant side effects

[WMO3]

New here and looking for any knowledge the group can share with me regarding side effects from Vyvanse.

Nearly 17yo d was diagnosed Inattentive ADHD 2 years ago and put on Vyvanse 40mg early last year. Her ADHD issues have been around memory, reading, sleeping and concentration/distractibility.

Around October she began having these meltdowns (not really a good description) where she screams, thrashes around, pulls her hair out, kicks and hits the walls, bangs her head on the floor. They generally started mid-morning and go on for 1-2 hours and are just horrendous for her and our entire family. The last time she had anything similar she was a toddler.

Initially it was once every 2 weeks, then it went to once a week then just after new year, while we were interstate with family, it occurred four days in a row. After the event she returns to a quieter version of herself.

In late November I had contacted her paediatrician to see if the medication needed to be changed. The ADHD issues were creeping back in spite of the medication and the meltdowns were increasing. Her only response was to offer a script for Zoloft.

After the fourth day of meltdowns we decided to take her off the medication and see if that calmed things down.

The meltdowns stopped for two weeks but of course the ADHD symptoms are causing her distress. Yesterday she tried a Saffron tablet as there had been some discussion online about it being a natural alternative to Methylphenidate but 2 hours later the meltdown returned.

We have absolutely NO idea what the hell is happening with this or where to begin to get her some support.

Has anyone else had a similar experience?

[EJ_C]

Hi WMO3,

It could be due to the medication is extended release. My female friend really struggled on extended release with very similar sysptoms and as such reverted to ritalin 6x per day. Which made a huge difference to her life.

[Hidden]

my son is nearly 10 now. Put on Methyloenidate extended release when he was 8 years old. He didn’t have such ranges but I do honk children and young adults do tend to have a lot of neurological side effects on this medication- he had terrible ones. He had ‘rebound’. Basically this means that mornings are 1000 worse than when he was on no medications. And then when about 3-4 pm meds come out of the system he couldn’t cope either- he started wetting his pants at this time (how humiliating, just about when kids get ready to go home, I would pick him from school and his trousers were wet form urine). He didn’t know why, bless. He was also aggressive and irritable at this time, for example he’d push me in front of all other parents when I was asking him what happened etc. 8 months of nightmare for our family, we swapped psychiatrist and he still didn’t want to stop this horrible medication. He told us that it was nothing to do with the medication, that it must be that my son is like that.

Eventually we managed to make him change to Atomoxetine. We never looked back. We have our son back- he enjoys his food, he is manageable since he gets up until he’d time, he can have maths tuition after school and then run for his Cubs meeting, no meltdowns. He can focus better at school, his mood is happy, he doesn’t t have anxiety. Weird tics and weird body movements and self harming which he developed on Methylpenidate - it stopped.

I just think some people don’t react well to stimulants. I mean, equally some people may not tolerate Atomoxetine… But there is Qelbree? Maybe that would work for your daughter. Maybe then she could stop Zoloft and be just on 1 medication because Qelbree is both antidepressant and medication for ADHD. I would try to keep it simple- 1, max 2 meds.

My son also takes Cyproheptadine for better sleep and better appetite (he suffered form functional nausea even before meds and since I give him this, he never complained of any tummy problems).

[KarenADHDWeekly Partner in reply to Hidden]

Hi Pattimon,

I'm sorry to hear your son went through such difficulties and I am glad he now has a medication and treatment plan that is working for him. Your suggestion to discuss other treatment options with the doctor/mental health professional is a very good one. Not everyone has the same experiences with the different medications or treatment plans, so working with a health care provider when something comes up is important. You seem to be encouraging her to work with the health care provider for a solution and that is a very good suggestion.

Thanks

Karen

CHADD's admin

chadd.org

[Hidden in reply to KarenADHDWeekly]

Yes I always say that parents/patients should work with their healthcare provider to seek solutions. The thing is, when one’s child is unwell parents are vulnerable too. That’s why I share my experience that changing the doctor, seeking ‘second opinion’ and asking for changing treatment plan is okay and parents should not be scared of doing so. At the end of the day we are customers and we are paying for it (even if it’s on insurance plan , it still means we are paying for it) and even though they are let’s say psychiatrists, but we have a right to say we want to go and ask another doctor what he thinks. And I noticed that doctors don’t like it and parents are often scared and just comply. I’d say, be assertive, read medical journal research papers for yourself, ask questions, be inquisitive, don’t take as a given what one ‘professional’ tells you. Know your rights.

I hope you won’t block me on this forum for saying what I am saying !😉

[KarenADHDWeekly Partner in reply to Hidden]

Hi Pattimum,

What you're saying, working with professionals and getting second opinions is good advice. And yes, sometimes doctors aren't pleased with it. Advocating for yourself and your child, learning what you can about ADHD and the latest research, these are good things. You would not get blocked for encouraging people to advocate for themselves and to be equal partners in their care or their children's care. The hardest thing for anyone is to learn how to be their own advocate. I'm glad you are encouraging people to learn what they can and to advocate for themselves and their families.

Thanks

Karen

CHADD's admin

[Elijah1]

Ask what is the underlying reason that behavior occurred? Does she also have anxiety, as an example. There is usually a reason a stimulant medication causes this type of behavior. In those with no anxiety or other co-existing problems, the typical effect of a higher medication dose is blunting of personality.

[WMO3 in reply to Elijah1]

She had been taking Vyvanse for several months before these episodes started without issue and everything we've read has suggested that side effect start sooner than later. We have talked to her but she doesn't think she has anxiety and I don't know what else can cause that kind of reaction

[KarenADHDWeekly Partner]

Hello WM03,

Your daughter's thrashing attacks are not something that is expected with Vyvanse, and if it were the medication they likely would have happened sooner. You were right to go to her doctor and find out what is going on. She may be experiencing a co--occurring condition (anxiety that includes panic attacks are common with ADHD, but I have no way of knowing if your daughter is experiencing this). You don't mention the circumstance that precede these attacks; a doctor would ask you for that information during an evaluation because it could be related.

You mention that your daughter is seeing a pediatrician; it may be time for her to be evaluated and treated by a mental health professional who works with teens and young adults. Pediatricians are great, but most don't have the additional medical training for complex ADHD, such as your daughter is experiencing.

Saffron is promising when it comes to ADHD, but researchers haven't found an effective dose or delivery method for it. I do encourage you to discuss the use of saffron with your daughter's doctor because it could interact with any other medications she is taking or she could experience an allergic reaction to it when it comes as a supplement rather than a part of a meal. I think you'll find this article interesting: chadd.org/adhd-weekly/color...

Since you asked about medications, you may find this information and medication chart to be helpful when discussing your daughter's need with a mental health professional.

Managing medication for Children & Teens, this does discuss some of the potential side effects of medications:

chadd.org/for-parents/manag...

Medication chart (as approved by the US Food and Drug Administration)

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Best regards,

Karen

CHADD's Admin

chadd.org/

[WMO3 in reply to KarenADHDWeekly]

Thanks Karen, we were not expecting side effects after such a long time but without the Vyvanse her outbursts are dramatically reduced, which leads us to think there is something going on there. Since the only medication she was on was Vyvanse it can't be a medication reaction.

I agree that the paediatrician is not the best option, we have an appointment for a psychiatrist at the end of March who we are hoping can shed some light on her options. The waitlist for psychiatry is well over 6 months in our area unfortunately.

thanks for the resources, I will look through them for some suggestions

[Fish1fish]

We had simiar issues with our 9 year old and vyvanse. Things got worse when her dose was increased which I wont go into here. Referring to her genesight test, the doctor realized that she is no good on any of the major stimulants and have switched over to other non stimulant adhd meds. Things are a bit better to an extent, at least there are no additional holes in the walls to patch.

[WMO3 in reply to Fish1fish]

Thanks Fish1fish, did the problems your 9yo experience start straight away or did they develop over time? We might have the same issue here with stimulant medications

[Fish1fish in reply to WMO3]

Intensity and frequency got worse when we increased the dosage.

[Joyceymc]

Did you try Pharmagenomic testing? We tested before medicating and learned my son has a genetic mutation which impacts his metabolism of Ritalin, Conerta, etc. We are starting on Adderall XR, our 2e Pediatrician also has ADHD and is on Vyvanse. She said Vyvane is standard to start for adults but for children and adolescents she starts Adderall XR she said with Vyvanse there is a higher chance of appetite suppression and side effects can be a bit more. Since your daughter is already on Vyvanse did you talk to your doctor about decreasing the dosing? Our doc was saying how the goal is to have maximum dose with no side effects. So if you are getting side effects then decreasing the dose might make sense. I am new to this as well but sharing what I learned from my doctor today.

[WMO3 in reply to Joyceymc]

Thanks Joyceymc, I haven't heard of Pharmagenomic testing so I will ask the Dr when she has her next appointment. Might give us more clarity and narrow down the options.

[Joyceymc]

Here is more info, if you search Pharmagenomics and ADHD it should give you some names of labs, I am in Canada and used Biogeniq but the US has more options chadd.org/adhd-weekly/can-a...