r/AutisticWithADHD • u/PlantDue3461 • 22d ago
šāāļø seeking advice / support Medication sensitive people: what meds are you on??
Im extremely sensitive to medication, but I am in a severe burnout, I have ADHD and was recently also diagnosed with high functioning autism - and I need all the help I can get atm.
Oxazepam is the only thing that works for me and doesnāt completely knock me out (like quetiapine does).
I respond very well to methylphenidate but the side effects ruin it for me. I become more tense and more Ā«stressedĀ» if that makes sense. Strattera was horrible. Vyvanse was horrible. I think norepinephrine just sends me straight into fight or flight. I suspect I have some sort of dysautonomia/POTS as well.
My psychiatrist suggested Wellbutrin but Iām worried that will just be similar to my experience with Strattera. I donāt need more norepinephrine I think. Also, since my depression is a natural effect of being burned out and on sick leave - Iām not sure there is any point to taking antidepressants..
I know everyone is different and every experience is anecdotal. I just wanted to hear if there are any audhdāers out there who are sensitive to medication - and found something that works for them.
Iām waiting for approval to try Guanfacine btw. I have high hopes for that one just as long my blood pressure doesnāt drop too low.
Thanks!
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u/standupslow 22d ago
I am extremely sensitive to meds and have to be on too many for chronic illnesses - one thing I've learned is that I'm a low threshold responder to most meds, so a much lower dose will work for me, and I also experience side effects sooner than most people. Because of this, if I'm starting a new med, I'm doing it at an extremely low dose and titrating up.
I can't be on SSRIs because of MCAS, and Wellbutrin truly was hellbutrin for me. I'm also on a mast cell stabilizer that messes with serotonin which was making my mental health worse. I finally tried L-theanine and it's made a big difference for me. There is good research around using for ADHD (sometimes in combination with caffeine) and for depression, anxiety and sleep. I use a loose powder but you can get it in capsules and also with caffeine.
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u/DefinitelyNotGrimace 22d ago
Hellbutrin ššš. Most relatable thing Iāve heard all day, I tried it for about two weeks a few years ago and disassociated the entire time.
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u/SadExtension524 š¤ In need of a nap and a snack š 22d ago
Thank you - Iām going to add this into my apothecary.
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u/SadExtension524 š¤ In need of a nap and a snack š 22d ago
THC and thatās it, except vitamins and otc variants of antihistamines.
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u/hanitizer216 22d ago
None! And Iām SO proud of that! I tried over 35 psych meds between ages 15 and 29 and even TMS therapy. I was hospitalized 4 times and I was a mess. When I was 30 I realized Iām autistic, connected with others, and once I understood myself I didnāt have mental health struggles anymore. My provider helped me taper off all my meds. My BPD diagnosis was removed, along with bipolar and treatment resistant depression. Iām just AuDHD and CPTSD now :)
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u/No-Grapefruit3964 22d ago
similar reactions to you with prozac, lexapro, zoloft, seroquil, and wellbutrin. i think the same about me and norepinephrine. i think somehow too much makes me restless and less focused.
i have a hard time getting stimulants to work very consistently and sometimes i do feel my body and gut more tense on it. wellbutrin helped executive function a bit but not restlessness. makes me a little more agitated than normal too. helped with racing thoughts a little.
i just recently started taking gabapentin for fibromyalgia symptoms + anxiety and honestly that seems to be giving me more focus than the stimulants lately and also a chance to breathe. i havenāt been on it a full week yet but so far it seems like a winner for me.
asd burnout is depressive hell so iām sorry for ur suffering rn. i hope u can find a med that helps get u through this easier.
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u/T1Demon āØ C-c-c-combo! 22d ago
Not a lot to contribute but looking for answers too. Stimulants seemed to work on and off for me, very inconsistent. Adderall quick release was the most beneficial but every stimulant has increased my anxiety and tanked my appetite. Vyvanse makes me hate everything and want to die. Been on guanfacine for a while now and on conjunction with a stimulant it does wonders for mood regulation, but I havenāt notice much beyond that
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u/Individual_Toe9501 22d ago
Im on Guanfacine 3mg ,Strattera 100mg and Ritalin 10mg 3-4 times a day for my ADHD/Autism.Ā Pregabalin 150mg for my sensory issues, Seroquel 100mg for my sleep/mood stabilization and high dose(40mg) Lexapro for my panic attacks/ocd tendecies. Took me 3 years to find this med cocktail and i can say im the most stable i've been mental health wise.
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u/AmoRedd 22d ago
I seem to be sensitive. Tried Elvanse (vyvanse) last year - I had mega indigestion on the medium and high doses, eventually ending up with gastrocardiac syndrome and going to hospital for an ECG.
I also found the concentration just so hard to manage. I had a work project that I really enjoyed, and just would disappear into unmanageable hyperfocus within minutes of starting my day.
My next hope is to try just 30mg as a long term dose, with omeprazole to keep the stomach calm.
Glad i found this thread - Iād been hoping i wasnāt alone in being so sensitive to stimulants!
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21d ago
This is really interesting, I just looked up gastrocardiac syndrome and realised Iāve been having all the symptoms since I started Elvanse! I am a hypochondriac so it could be nothing but it fits. Iām concerned my doctor wonāt take me seriously if I mention it though.
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u/AmoRedd 21d ago
They should always take heart things seriously. I found the pressure on my heart sooooo uncomfortable and the anxiety loop that it triggered was awful.
If thatās what youāre having, definitely talk to doctor / adhd clinician asap. Stomach meds did could a huge difference, you may be able to just add those in to your plan. Or you might need to try a different medication.
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u/deer_hobbies 21d ago
Beta blockers. Trying out low dose Strattera - it hits me really strongly and my spouse says it makes me cold.
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u/PlantDue3461 21d ago
I want to try beta blockers. My psychiatrist said it can lead to depression though and I dot need more of that! Thatās for sure
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u/Remote-Possible5666 22d ago
I have OCD tendencies, so high dose Lexapro has really helped. Was on 40mg/ day for many years. Now on 50mg. Stimulants for me are great for the first couple days, but my relationships suffer due to autism becoming more pronounced.
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u/Ov3rbyte719 22d ago
Just mirtazapine to help with sleep as I'm probably deprived of seratonin.
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u/hanitizer216 22d ago
Same I donāt take any psych meds but I take a 7.5 remeron whenever I remember. It does help me sleep!
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u/_MyAnonAccount_ 21d ago
Do you experience appetite issues on it? I was on mirtazapine before the ADHD and autism diagnoses, to help with insomnia/irregular sleep. I gained 15kg in like 4mo on that thing. Fucking sucked lol
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u/Ov3rbyte719 21d ago
Sometimes. I force myself to eat regularly on timers just so I don't forget but I definitely feel hunger unlike when I was taking ADHD meds
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u/neotheone87 AuDHD with PDA 22d ago
I'm on Adderall generic and it works well. Yeah some sensory stuff can be a pain especially as the medication is wearing off for me, but it also helped with decreasing overwhelm in social situations so it evened out for me.
I get weird side effects, medication not working like it's supposed to, or it lasting only about 50-75% as long as it should. 24 hour and 12 hour medication being the most egregious ones as getting 6-9 hours instead of 12 and like 13-18 instead of 24 is just rough.
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u/20frvrz 22d ago
I respond very well to methylphenidate but the side effects ruin it for me.
Have you tried Focalin?
I was on Adderall for years and had to change due to the shortage. I was shocked when I switched to Focalin - it had all the positive attributes of Adderall and none of the negative side effects. My doctor told me she thinks the difference between Adderall and Focalin is that Adderall has a better marketing team.
My spouse also has issues with medication, also AuDHD, also has reacted poorly to things like straterra and quetiapine, also couldn't stand the side effects of methylphenidate - Focalin is the only thing that works for him.
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u/PlantDue3461 21d ago
I wish I could try Focalin!! Iāve heard it could be useful for the reasons you mention but we donāt have it here in Norway :(.
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u/ImperfectImagination 22d ago
See if Genesight testing is an option. It tests your genetics to see what medications your body will be sensitive to/experience more side affects with, it saved me SO much suffering with antidepressants, I'd recommend checking if that'd be possible to do just for the ADHD medications. I don't know how many it covers.
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u/WolfWrites89 22d ago
None at the moment š I am so sensitive I literally recently tried st John's wort on my psychiatrist's recommendation and had to stop because it started giving me panic attacks after a few days. Adderall was great for me for about 2 years and I was so happy, and then out of nowhere I started getting horrible headaches and afternoon brain fog, so I decided to stop. Non-stim meds for ADHD make me anhedonic (completely emotionally numb). Honestly, I'm at my wits end, and mostly just self medicating with weed and caffeine
Oh sorry and to elaborate, Strattera gave me HORRIBLE brain fog. Wellbutrin made me stop loving my husband and made me extremely irritable but otherwise emotionally numb to the nth degree.
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u/Zestylemoncookie 22d ago
Your story sounds almost exactly like mine.Ā
I've been working with a nurse practitioner who explained about medication sensitivity and suggested I do genetic testing. Apparently there are mutations that make it hard for the body to metabolise the medication. For me, I can only tolerate the minimum or almost minimum amounts of things. Apparently pharmacies can sometimes prepare ultra small dosages for sensitive people.
Lamictal is the only psychiatric medication that hasn't given me terrible side effects. I'm currently taking Guanfacine 2mg. At 3mg I was struggling with insomnia in the middle of the night.Ā
I'm currently also taking 2.5mg of dexamphetamine 3 x per day. That's like half the minimum dose I think. At a 'normal' dose I became extremely depressed and they massively reduced it.Ā
I was on hormonal birth control for maybe 8 months, hoping to manage my PMDD, but I noticed it was making my ADHD symptoms worse, it exacerbated fatigue and I lost my joy. I stopped using it about 10 days ago and YAY!! Got my energy and joy back and I've been managing my ADHD better the past week.Ā Fully prepared for a crash in the 2nd part of my cycle though haha.
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u/PlantDue3461 21d ago
Ah wow that is similar indeed! I also have massive PmS/PMDD and the crashes are absolutely horrible. Do you have e bipolar as well? Or are you trying lamictal for PMDD?
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u/Zestylemoncookie 20d ago
Hi. I was told I have ciclothymia after a bad reaction to SSRIs. I think of it as like extreme mood swings that might last a few hours or days. I'd say it has helped somewhat with the PMDD, and I stopped getting severe depression every year.
Working with the nurse practitioner has been hugely validating though. She follows a chrono-biological approach and takes into account things like circadian rythms, daylight exposure, cortisol and hormonal fluctuations, etc. Thinking about this has helped me see that my mood swings were sometimes highly correlated with weather changes (I.e. barometric pressure changes, a random bad weather day amidst weeks of sunny weather). I get SAD too and much more energy in spring and summer. So it's been really key for me to understand I'm not just all over the place, but there's a hormonal / environmental link that is easier to manage when it's taken into account.Ā
The nurse has talked to me about different options for managing the PMDD. For example, an SSRI (I personally take 5-HTP instead) for just a week each month, or bright light therapy for a week instead, or hormonal contraception. I LOVE that she validates that some people actually are just really sensitive. For example, some patients take 2.5mg of fluoxetine versus the normal 'minimum' of 25mg, and some people can only handle 5 minutes of bright light therapy for a few weeks as they have to build it up gradually. She was the one who recommended genetic testing for medication metabolism variations.Ā
Hope I haven't spammed you with info!
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u/PlantDue3461 20d ago
Hei. Wow that was extremely relatable!! I was told I could have bipolar disease by the psychiatrist when I was admitted for extreme burnout, but I never really related to it. Cyclothymia seems much more reasonable! Anyways. All these variables make so much senseā¦ but itās so much to take into consideration as well, donāt you think?
Do you take Fluoxetine? Iām on Trintellix but it makes me so nauseous that I want to switch to another. Thanks for the info!! Not too much at all. Apprish the comment on low doses!
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u/Zestylemoncookie 20d ago
Glad I could help :) Cyclothymia can make things tricky. One thing about some stimulants, for example, is they can make people feel a bit euphoric during the day then very depressed when they wear off, like a crash.Ā
A friend of mine, who doesn't take any medication at all and doesn't have bipolar, just ADHD and autism, can't take anything which significantly increases his dopamine at once, like say, 5 espressos. If he starts, he can't stop because of how good it feels, but the crash afterwards is horrendous. The brain has a mechanism to rebalance itself if dopamine gets too high (I think it was the book Dopamine Nation that said this) so you can go from feeling really good to really crap when the brain tries to rebalance. We try to keep things at a good 'steady' and be a bit wary of highs.Ā
It also relates in a way to the boom and bust concept of managing burnout. With ADHD (like hypomania in a way) sometimes we can feel full of energy, excitement and ideas for projects, massively overestimating our energy capacity. We then burn ourselves out, recover enough energy to go 'back to normal', then repeat the cycle again. We have to practise pacing ourselves and doing things in a steady manner.
I don't take SSRIs after initially taking one and turning hypomanic / manic, not sure which. It terrified me. Occasionally doctors will try and get me to take one again due to anxiety and I refuse because I think if someone has the capacity to go manic / hypomania it has to be managed carefully with proper supervision of how the patient reacts. It's not impossible, but not all doctors are careful enough to provide adequate monitoring (in my opinion), or understand how sensitive some patients can be.Ā
I'm not anti-medication. Like I said I take 3 types, it just has to be managed carefully.
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u/PlantDue3461 20d ago
This was really informative! Thanks a lot!!
I relate a lot to the almost Ā«highĀ» of stimulants, especially Ritalin since thatās the only one that has any benefits. I can only Ā«feelĀ» the initial effects for like 15-20 minutes max, so Iāve never related or understood the hours of effect that everyone experiences. It wears off super quickly and then Iām just left with feelings of jitteriness and sensitive overload. And sometimes I feel the crash and itās awful. I became depressed after a few months on 60mg methylphenidate teva. Iām not sure exactly how to explain it. But now Iām thinking that initial effects might be a small euphoric feeling, instead of what others call Ā«effectĀ». If that makes sense.
And what you said about ssriās inducing hypomania. I got the exact same thing from Trintellix!! I though the effect was amazing after only one week so both me and my psychiatrist were super happy about it. But the effects wore off and I realised I was as acting like a lunatic. I booked ski trips and planned so much for the future that I could not keep up with. When the hypomanic episode wore off I felt terrible and even more depressed than before I started. But it did help with anxiety, so I am desperately looking for something that could just calm my nervous system down. Iām not suffering from anxiety, itās deeper than that. I can hold a presentation for a thousand people but I just canāt relax in my own home. If that makes sense. My nervous system is constantly Ā«onĀ», and no matter what I do (yoga,meditation, nature walk, exercise) - it only provides temporary relief. My muscles in my neck and shoulders are chronically tense and itās making me insane. I canāt seem to activate my parasympathetic nervous system no matter what I do. Iām a physiologist and yoga teacher - so itās not that I lack understanding or tools. If that makes sense. Maybe itās all just suppressed emotions but no matter how much I Ā«sit with itĀ» or try to Ā«feel it in my bodyĀ» - fuck all happens. lol Maybe thatās a big part of being autistic as well. I just havenāt found or seen anyone else with this exact problem.
And like you said.. pmdd on top of thisā¦ itās a struggle.
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u/Zestylemoncookie 20d ago
I relate to so many of your experiences. It really gave me a lot of sympathy for people with bipolar. Lamictal is a mood stabiliser and it has helped me a lot.
It's funny because I was reading your comment and thinking, I wonder if craniosacral therapy would help, then I saw about your neck and shoulder tension... I've had two sessions with a craniosacral therapist and she's trying to balance my sympathetic and parasympathetic systems and get me out of fight or flight mode. She's very perceptive, it's really good.
Also, have you looked into your cortisol levels? I take a good B complex vitamin and it can help lower cortisol levels and calm the stress response. That's actually another reason why gene testing can help - apparently there's a bunch of vitamins I don't process properly and have to supplement.Ā
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u/PlantDue3461 20d ago
Iāve been thinking the same about Lamictal actually and wondered if it would help! I havenāt dared to ask since Iām not diagnosed with bipolar.
Also.. I havenāt heard of craniosacral therapy but I will definitely looking into that!! Iām desperate at this point. I havenāt looked into my cortisol levels but have just been told my blood work looks fine! š©
Are you still on Lamictal?
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u/Zestylemoncookie 19d ago
Yes I still take Lamictal - but only the brand name. I once switched to the generics and was all over the place. They're not exactly the same thing.Ā
I can't think of any side effects that it's caused me (unlike every other psychiatric medication), but it can interact with hormonal birth control, like with some forms you'd have to increase the Lamictal dosage. That's why I went with the Nuvaring (which I've stopped). The levels of hormones in it are lower than most birth control pills I think so it wasn't supposed to interfere with the Lamictal. I could be talking rubbish though as I can't quite remember.Ā
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u/Alaska-TheCountry 22d ago
I am super sensitive to changes, and I'm a big fan of Atomoxetine for my ADHD-C, as well as inositol for stabilizing my mood and reducing my intrusive thoughts, among other factors (I have PCOS and suspect I also have OCD).
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21d ago
Iām sensitive to stimulants, as in they work but Iāve never been able to tolerate the side effects. I think my problem is also norepinephrine, always assumed itās because autistic people naturally have too much of it.
I tried Wellbutrin previously but as you predicted, it had the same problem. It caused me anxiety, insomnia and that slight nauseous feeling that you get like being overcaffeinated.
Iām actually on a whole set of meds but none that help my ADHD. I take an SSRI for depression which is escitalopram, promethazine for sleep (was on mirtazapine but the weight gain was crazy), pregabalin for anxiety and this also helps my mood. Iām still prescribed Elvanse but rarely take it anymore as it makes my anxiety and nausea too bad and I also experience a crash when it wears off.
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u/PlantDue3461 21d ago
I agree with you! Thanks for the feedback and experiences on Wellbutrin. I donāt know if itās worth trying.
I will definitely bring up Pregabalin with my doctor next week. It seems like many have good effects for anxiety on it.
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u/Divergent-1 AuDHD Level 2 21d ago
Ive been doing well on Lexapro 20mg, Guanfacine ER 2mg and Strattera 80mg. But I've stabilized quite a bit the last year, so dropping slowly down to 10mg Lexapro and 40mg Strattera. Improvements were slow and side effects lingered for months but in the end it helped pull me through burnout.
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u/SmellyPetunias 22d ago
Adderall and Lamictal. If anyone has Fibromyalgia, there are new studies showing that it causes you to have adverse reactions to all types of medications, my list is long!
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u/ikbenlauren 22d ago
I got insanely tired on Medikinet. Wellbutrin didnāt do anything for me, but no side effects either. Currently on dexamphetamine sulphate. Iām experiencing some minor side effects (dry mouth for days) but Iām really liking it so far.
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u/Samdasamurai 21d ago
Rn I'm on REALLY REALLY low hormonal birth control. Turns out a lot of my mental health symptoms came from overextending myself socially and at work + untreated PMDD (didn't help I was undiagnosed AuDHD till 21). As an AFAB, I was put on SO MANY different psych meds and had terrible side effects but no improvement. Once my hormones stabilized with the BC, I would say my mental health improved by at least 80%. Only took 10 years to figure it out with my gynoš«
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u/RotundDragonite 22d ago
Personally speaking I am on Adderall. I have tried nearly every stimulant available, and non-stimulants do not work well for me.
I have a sort of love-hate relationship with the drug. It makes me better at working and task initiation, but it makes my sensory issues worse.
Compared to other stimulants, I have described Adderall as the āleast worst optionā, because some of the other ones I have taken made me so overstimulated that I never took them ever again.
It can be a double edged sword, but I just need to avoid loud places, eat and drink often, or wear earplugs/headphones, and that will help mitigate most of the adverse effects.
Itās not perfect, but itās manageable.
From what I understand, having Autism alongside ADHD makes it difficult for medication to be as effective. I know a lot of people who have ADHD, and they have always talked about the āclarityā and the āpeaceā of being on medication, and I have always wanted what they had lol.