This is my second post on here and I found your feedback really helpful last time so I thought I'd ask another question.
I am 46 female who has just been diagnosed recently along with my 9 year old daughter. We both were put on versions of Methylphenidate. My daughter hasn't noticed any difference but I had a terrible time. On Saturday the decision was made that I should try something different. I had a lot of side effects, they said I was having a very bad reaction. For me the hardest side effect was depression/mood swings. This is my second day without anything.
I feel very conflicted, I asked the nurse about success rates of adults on medication because I couldn't find anything myself on the subject, she said there was very little data and that medicating adults was relatively new. I have friends very pro meds and very anti and I don't know who to listen too. I have a lot of health problems and have been on a lot of meds over the years. As I get older I seem to be becoming more sensitive to them and they are creating more pain and less relief in general, so I am becoming more hesitant.
I will be starting Lisdexamfetamine this week. I'm still feeling really tired and really quite depressed from the last three weeks, which is to be expected most likely but I just don't know if I should try this new drug at all?
Does anyone know what the long term down sides effects are of these meds and does anyone know anything really about the good and bad aspects of going on ADHD medications in adulthood?
Any thoughts would be greatly apreciated!
Cheers!
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Hi. I am not a doctor and this is not medical advice. The best source of information on this is Dr Russell Barkley. He has a YouTube channel and a video series on the 30 things you need to know about ADHD. I have read that medication is the most effective treatment option for ADHD, and it takes an average of 2.6 medications before you find the right medication and dosage for you. Just because the first didn't work, doesn't mean the second or third won't.
Fundamentally, it is a matter of do the benefits outway the side effects because untreated ADHD leads to higher likelihood of car accidents, employment problems, addiction problems. About 15% of people don't respond to medication at all, or the side effects outweigh the benefits, but if it works then it works. If you can experiment. There is a lot of misinformation about ADHD, and a lot of stigma around medication but the best resources are Edward Hallowell, How to ADHD, and Russell Barkley, if you follow them you can't go wrong.
I may be wrong but I think your Doctor is wrong there is a lot of information on ADHD medication it is the single most well researched psychiatric condition and the most treatable, the treatments in America have been around for years. ADHD is very misunderstood, so it is important to inform yourself about it. That is what Edward Hallowell says to do, you are going to live with this condition for the rest of your life so you should learn everything you can about it from trusted sources not TikTok, or random people, but the best.
At least that is what I think, I may be wrong though. I got a bit emotional with this, sorry.
Thank you so much! I will look up everything you suggested ASAP.
I'm mean in some ways all those downsides of ADHD have already happened. I've never been well enough physically or mentally to have a career, I was less than 6 stone when I finished my degree, everytime I attempt to have a life it makes me ill. I had a particularly difficult martial art grading that took over a year, I developed prediabeties by the end of it from the stress. I've got another one in about a year, I was hoping the meds might make it possible for me to attempt it.
The main reason I sort out a diagnosis at all was to help my daughter, so she wouldn't have to go through what I did.
My memory is so bad I'd forgotten some of the things you mentioned, now that you've written I realise I did know about ADHD being the most successfully treated mental health condition and things like that.
Thank you so much for giving me hope!
It's s been a brutal month. The day we started the meds was the day we left our house to live with my parents for months bc we're having major building work on our house and also my 6 year old has started a new school bc his last one was terrible but the move has happened 6 months earlier than we expected, having to meet new parents in a new place is mildly terrifying. Not having a proper home is exhausting, really the whole thing has come at a bad time, trouble is my life has always been a series of bad times, and if it had come at a good time would I have wanted to risk it all anyway?
You are so welcome. I hope things go well for you. Edward Hallowell, says ADHD is a good news diagnosis once you know about it things can only improve.
I've just listened to about an hour of one of Dr Russel Barkley's lectures, I'd seen it before but forgotten basically all of it. I hate my terrible memory. When you listen to this stuff it seems to be a miracle I've survived as long as I have!
But thank you, your post has made me braver about trying the new meds which I needed because if I don't do it now its gets a lot more complicated if I wanted to try it again later. So fingers crossed!
My own ADHD traits include memory issues. I was helped with my memory somewhat while on Adderall, but my non-stimulant atomoxetine has been even more helpful.
Now, I can hold things in my working memory much longer, and I'm certain that I'm better at memory recall (at least for memories formed since I started on ADHD medication).
ADHD symptoms are said to be due to a deficiency in dopamine &/or norepinephrine in certain areas of the brain (most notably the prefrontal cortex, PFC).
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For many people, amphetamine based stimulants (like Adderall or lisdexamfetamine/Vyvanse) can be more effective than methylphenidate based stimulants (such as Ritalin or Concerta).
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Stimulant medications primarily act by treating dopamine deficiency. Strattera and a newer non-stimulant called Qelbree treat norepinephrine deficiency (they are classed as SNRI medications, which stands for "selective norepinephrine reuptake inhibitor"; they cause nerve cells to delay longer before they reabsorb unused norepinephrine, increasing the time to be received by the next neuron).
Qelbree was specifically developed with children in mind. It has been reported to have less side effects for people taking it, compared to Strattera. I've also read that many people experience more relief of ADHD symptoms compared to Strattera. Since Qelbree is newer, it is not available in generic.
I'd recommend trying Alpha GPC which is a choline booster. Part of what choline does is convert to acetylcholine which is a neurotransmitter that is most often associated with memory. Also a modulating neurotransmitter and secondary neurotransmitter so may contribute mild stimulation. I think I mentioned Acetyl-L-Carnitine and N-Acetyl-Cysteine before. Together those allowed me to concentrate longer as I got sleepy. 2 to 4 hours longer even on extreme doses of Adderall. Plus they are neuroprotective. Think I mentioned EPA/DHA fish oil before too.
I think Barkley recommended sipping something like soda or other sugary drink during the day to provide continuous fuel for our ADHD brains for the duration.
AMPA / NMDA receptors are associated with memory and cognition in general.
There are drugs called ampa pams, which are AMPA receptor positive allosteric modulators. Low impact ones are generally well tolerated, mild, with minimal side effects. Often associated with improving memory and/or cognition. Some have neuroprotective effects. Can look into "racetams" like piracetam, phenylpiracetam, aniracetam, noopept and other "racetams". Can find them online. Google searches for cosmic nootropic, every chem, science.bio, umbrella labs will give you some options if you go that route. Ampakenes are another category but I haven't gotten into detailed research on them yet. Some are being clinically trialed for ADHD and other disorders.
I've tried racetam, phenylpiracetam, noopept among other things. Didn't notice much if anything from them. But my extreme tolerance to amphetamine over the last year and a half made most things not noticeable. Like 70mg concerta or 70mg vyvance felt like nothing so not the best person for a review. But, others do swear by them.
Atomoxetine actually improves my memory greatly. However, I know that lack of sleep or heightened anxiety that can impair my memory.
Perhaps Acetyl-L-Carnitine and N-Acetyl-Cysteine could help me. (I'm sure I've had the former before in energy drinks. I'm not sure about the latter.)
I already do take Omega-3 fish oil supplements with EPA and DHA in them. I've known for years before my ADHD diagnosis that Omega-3's help me...but without ADHD meds, they only do a little.
• I take a complete multivitamin, plus extra Vitamins C and D, and Iron, because I've found them all to help my memory and attention a little.
I remember Dr. Barkley recommending sipping lemonade all day, not soda. His reasoning was to help keep glucose levels consistent in the brain.
(I should remember that. I drink coffee all day long, but I'm going to go off caffeine next week when I take some time off work, because it's my kids' Spring Break. The lemonade should help me stay hydrated and give me brain that needed glucose.)
The energy drinks usually have L-carnitine which is less absorbable than ALCAR. And at a dose that isn't enough to do anything. ALCAR is typically taken at 500 to 1500mg once or twice a day. NAC is taken at the same dose. It helped me when I was on 140mg Adderall IR, in which many other things didn't even register, so may potentially help you too. I have gotten them in capsule form. And also bulk powder form from bulksupplements.com (on amazon.com) which is much cheaper per unit. ALCAR smells exactly like vinegar, but tastes like the sour part of sweet tart candies. I mix it with my other bulk powders and down it in water. NAC, smells like rotten eggs as it is a sulfur based compound. I take that one with blate papes. amazon.com/s?k=blate+papes&...
I take a moderate vitamin B-complex with my multivitamin since my chiropractor a long time ago said they can help repair nerve damage I have due to back problems. But, now I take it more due to B vitamins being part of the process of generating energy from glucose. Also involved in many other brain processes like preventing homocysteine from being created, which happens without them. Also involved with other things like creating glutathione.
I had started guanfacine not too long ago. At first it did give me help falling asleep at night and staying asleep better, but that went away. Did have the daytime sleepiness not go away fully like other often report after 2 to 6 weeks. But my brain is so scrambled at this point it is hard to project how it may work for others based on my experience. Plus I am off Adderall and not working while letting my brain heal so I can switch to a different med profile. Took 4 months off last year but was forced back to work. But, now I have a therapist to work with and meds scrambled my brain too much to work any more so, Now I am rededicated to getting off Adderall. Guanfacine I only take now because it works great with Mounjaro. But either without the other, Mounjaro was devastating, guanfacine net negative effect.
The people who usually take guanfacine, usually take it to improve sleep and enhances their meds during the day.
Lack of sleep has always been an issue. I believe we have similar natural sleep patterns as per my SCT and sleep pattern post. I did find that low dose trazodone was a great sleep aid and did not have a negative effect for me during the day. Which also reduced my sleepiness and other symptoms that are affected by sleepiness. Am thinking I might go back on it. Memory is often consolidated while you sleep and a lot of brain repair and upkeep is done while asleep. "Restorative Sleep" I think is how they refer to it. Lack of sleep always exacerbated my issues.
My new therapist, who is a neuropsychiatrist, acknowledges my SCT symptoms. Has said I probably have sleep disruption disorder too. Which seems to be true all my life. And may have mild narcolepsy. Which, due to the incomplete body of SCT knowledge, makes it hard to tell for sure if it is a contributing factor to the lows of the day or if that is just an SCT issue. Problem is, SCT is too hard to diagnose without a complete body of research. And I can't do the narcolepsy sleep testing since I have to take stimulants to be functional enough to drive to the test. Which is not good for sleep tests.
Modafinil/armodafinil - meds made for wakefulness. May be good in combination with Strattera. Boosts dopamine and norepinephrine, but targets the wakefulness parts of the brain. And boost to some other things. But doesn't have the issues of Adderall. Doesn't tend to build tolerance, is actually neuroprotective for certain things. Been taking them for many months now. I take it on my days without Adderall. And higher dose on the days I need to take Adderall for some larger task like driving somewhere or doing my taxes. Modafinil the drug wears off faster and is literally 50% modafinil and 50% armodafinil. So half of the dose wears off before the other half. Armodafinil the drug is 100% armodafinil and lasts typically twice as long or longer. So can see how they effect you if you want more energy during the day. Plus it was found to work better for SCT symptoms than methylphenidate.
inositol and taurine, also supposed to boost energy and neurotransmitter efficiency., and relatively cheap as supplements go. Taurine you can also give to your pets if you have a cat or dog. Also taurine will also be good when you get a bit older as it tends to decline with age.
I also take selenium, zinc with copper, and low dose lithium as they are involved in many brain processes.
Drinks with aspartame are an alternate if you don't want sugar. Converts in the body to phenylalanine (precursor for dopamine and norepinephrine). I calculated it takes about 8 liters of my sparkling water to make my recommended daily allowance from the FDA in the U.S. I drink 3 to 4 a day so not bad. Also part of it is aspartic acid which the body uses for a million things including energy production and nervous system signaling. Should get those from proteins anyway. But, still think it is interesting.
Our prescribing nurse has cocked up again so my daughter and I are without meds again. It's only been two months and they've screwed it up both times. Because they're private we can't go anywhere else so we're locked in to using them at the moment. The last few days off methylphenidate has been hard, I thought I'd feel better bc the side effects had made me so ill, but instead I've just been depressed and exhausted. Although I've slept better in the last 3 days than I have in months.
I hope the lisdexafetamine works but if it doesn't I'm encouraged by your experience on the non stimulants. Trouble is I'm on so many other meds I'm anxious about adding more. However if my ADHD symptoms are relieved there would be a chance my physical illnesses might reduce too and I might be able to come off some of the other meds I guess?
We tried to reset my Methylation Cycle, well husband did, to try and help my fibromyalgia/ brain fog, long before I was diagnosed with ADHD. It involved taking things like Phosphatidyl Serine Complex (PS/PE/PC), methyl-B12, methylfolate for months. I didn't feel any different, it was surprising to me I could be taking so many things and they make no difference. I tried Huperzine A for memory Tryptophan for sleep, again no difference. Along with my normal meds I was getting worried about how much my liver was having to do and stopped them. It maybe I needed to take them longer, so you never know really....
That is a lot of good information shared by FilmLover23. (Btw- Dr. Edward Hallowell is in that percentage of people who have ADHD and doesn't respond to medication.)
The research on ADHD is most indepth for boys (young males). There is less research in general for adults (male or female) or for girls (young females).
I did find this article which is a review of 7 studies about medication for girls and women with ADHD. It makes plain that medication is prescribed less often for girls and women than for boys and men. journals.plos.org/plosone/a...
I didn't have much time to read and respond on my lunch break. From what I read, the article says that women don't respond as well to methylphenidate (Ritalin, Concerta, and the like), compared to men. It also says that women tend to respond better to atomoxetine (Strattera) than men do. These might only be slight shifts...I didn't get through all the details.
I'm an adult male, and I respond better to atomoxetine (generic Strattera) than I did to Adderall XR (mixed amphetamine & dexamphetamine).
Lisdexamfetamine (Vyvanse) has can noted to work very well for many people. It's a formulation which requires digestion to enter the blood stream (to help prevent the potential for abuse), so it is a type of amphetamine medication which many doctors favor.
* Note: amphetamine (US spelling) is the same as amfetamine (UK spelling). [My spell checker autocorrects to the former, because I am in the US.]
I tried 3 different dosages of Adderall XR and 2 different dosages of atomoxetine to settle on my current medication and dosage. (5 medication/dosage trials total)
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Also, ADHD also very often has comorbidities (concurrent mental health disorders). The most common of these are anxiety and/or depression.
I got diagnosed with ADHD when I was already suffering from severe anxiety, due to stressful life events. At the same time, my ADHD symptoms were much worse than normal. Treating the anxiety first was critically important, in my case. After just a month in an anti-anxiety medication, my ADHD symptoms returned to normal, and I was able to be assessed as having "mild to moderate" predominantly Inattentive ADHD. ~ Then, I finally got to start on ADHD medication. It took 6 months to get the medication and dosage right for me.
I have since gone through other periods of anxiety and depression (due to other stressful life experiences), and have had to get treatment when therapy and 6 months on an antidepressant.
Some people have persistent depression. I seem to experience it for several months at a time. However, I seem to have persistent, mild anxiety (by my own estimation it has been with me since I was 12... I'm now 49; I haven't taken medication for it, except for that one time that it was severe; I try to moderate it with mindfulness exercises).
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My best advice is to keep a journal of your experience for at least the first two weeks in a new medication or new dosage, and to have good communication with your doctor.
If you are able to be assessed for anxiety, depression, or other possible comorbidities, and provided treatment accordingly, it could improve your treatment outcome.
Thank you for your reply, it's very useful to hear other people's journeys.I was in mental health care for about 15 years, I was diagnosed with, at different times, Depression, Borderline Personality Disorder, Associative disorder/generalised Anxiety Disorder. However that was all over 10 years ago, when things starting going downhill during lockdown I self referred and was told 'my needs were too complex' and that they couldn't help me, which is depressing but then the NHS has been in crisis for quite sometime....
I did years of meditation and mindfulness, hated every minute of it. I was part of a Buddhist community for a few years, I then had my children, the Buddhist don't cope well with children so all that disappeared. The gym is where I find my solace, so as long as I can get there most days it gets rid of a lot of the body tension.
I have 4 chronic pain conditions with another 4 comorbid conditions so I have a lot of pain on a daily basis and not much sleep. So I essentially operate on a knife edge of 'wellness'. It is clear that I largely won't get any help with these things so I will have to manage on my own, there's no more money, paying for a diagnosis was all we could manage. But I can afford books, so that's where I'll be heading, apparently I have a high IQ even if I'm a basket case in other respects so hopefully books will be enough 😁.
Exercise is one of the most effective non-medication treatments for ADHD. Talk therapy is another, notably Cognitive Behavioral Therapy (CBT).
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I have a question about the side effects.
Did you experience an increase in any of your pain conditions after you started on methylphenidate? Or an increase in other nervous system effects, such as: headache, restless or intrusive thoughts, restless leg syndrome, fatigue?
I had quite strong nausea, to the point of wretching a lot at the beginning, jaw pain, coldness, I'm cold normally but this was much worse so it made my Raynauds worse. Then come 2 o'clock I would be elated for about 10 minutes followed by depression for 2-3 hours. I've always been an insomniac but on this med I was having night sweats that meant the bed was soaked so I'd get up 3 times a night and have to change all my clothes and put a towel on the bed.
Sadly melatonin doesn't work on me. I have sleeping pills but I'm only allowed 10 every 6 months or so.
Methylphenidate can indeed have various side effects. I found many of the ones you mentioned listed.
Amphetamine medications might also have side effects for you. (Many of the same side effects were listed.)
• The few months that I was on Adderall, I experienced an increase in having cold hands and feet. (I'd experienced this my whole life, and thought it was because I was "skinny" and thus didn't regulate temperature well.) That marked increase was when I did some research and learned about Raynaud's Phenomenon. I'm not diagnosed with it, but now I'm aware of it.
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Some people respond very differently on one stimulant from the other, so it's so worth trying. But now you know what to be on the lookout for.
However, you might be one of the minority of people who are better treated on a non-stimulant medication. There are several options these days.
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Have you tried a magnesium supplement to help with sleep? Magnesium is supposed to help with the body's own melatonin (I think), and it also helps with the release of GABA, the "deactivating" neurotransmitter.
• I actually take a GABA supplement, together with melatonin, to help me sleep. Melatonin only helps me get to sleep, but I was waking up around 2-4am and often unable to fall asleep again. Adding the GABA helps me to be able to fall asleep again in the middle of the night. ~
• Not much study has been done with GABA supplements, because medical texts say it "doesn't cross the blood-brain barrier". I decided to give it a try because of the anecdotes I read, and I was elated that it worked for me. (Maybe it's "placebo effect", but I sleep better the last couple several months than I did for most of the last seven years since my life became one struggle after another.) ~ Note: GABA isn't recommended for kids or anyone taking gabapentin.
It's available as a supplement in the US, but I don't know about anywhere else.
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Next week, I am taking the week off of work, and I'll replace my GABA supplement with magnesium, to see how effective it is. (My initial test was just three days.)
I've taken Magnesium for years for Osteopenia, doesn't seem to change anything. I've tried Tryptophan, 5 HTP, various other things over the years L-ornithene, L-arginine and L-Lysine.
I take Amitriptyline for fibromyalgia that gives me a half hour sleep window, if I miss it I don't really sleep. Sleep has always been the biggest problem and lack of it always precedes my biggest breakdowns. So I tried most things, having young children that also don't sleep doesn't help either though! 😁
I was married for 20 years, and my ex-wife has had insomnia since her youth. (She also has had migraines since at least her early 20s, restless leg syndrome, and developed chronic pain issues during her 40s.)
• In her case, I think that the amount of adverse childhood experiences (ACEs) that she experienced growing up were definitely a factor in her developing so many health issues (but heredity and lifestyle are also big factors).
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If you don't already know about what's been learned about the impact of ACEs, I found a good writeup at mft.nhs.uk/rmch/services/ca...
The findings are relatively new, and so I don't know what has been learned about how to offset the effects (or if in can be done). The initial research was done in 1995 and 1997. I wonder how well the study participants have been followed through the last 29 years.
Yes your ex wife sounds very similar to me. I had migraines since I was 4 but they became chronic in my teens and have stayed ever since. You get good years and bad years, you just have to ride it out sometimes. Try not to loose everything you've built in the meantime.My early childhood was difficult because we moved so often, but my family were loving, the wheels really fell off the bus when I went to boarding school HUGE collections of ACEs then!
I e learned that stimulants exaggerate any emotions currently existing so if you’re in a crisis or dealing without emotionaly, or hormonely, there are times they should t be taken. Especially if you’re prone to anxiety like me. I can barely deal but some days it’s the only thing keeping me functional. So I’ll take a little nervous wreck to be productive. Just can’t ride that everyday. Plus when they wear off, it drives one to ease anxiety with other things. I wish they worked for us like they do some people. Honestly, I think if you experience a lot of trauma, it’s hard for them to work without creating too much anxiety.
Yup it didn't help that my period started the day I had to double the dose 🙄. Ultimately it was the mood swings I struggled with the most. I have panic attacks often in relation to my pain levels. I have chronic migraines, so over 50% of the time. Late spring they are often at their worst occurring everyday for about 6 weeks. I knew I wouldn't be able to cope at all with the depression once spring had got going.
I am 60 - just diagnosed at 59 last year. The first thing to do is get on HRT (hormone replacement therapy) if you can. The fluctuations in hormones made my symptoms pretty insane - which eventually led to an ADHD diagnosis. There are some great connections for ADHD and hormone help in the UK. (Check out @dianeporterfield_bourne on Instagram. She is a nurse practitioner specializing in Menopause in the UK.)
I am US based and am having a much harder time finding providers who understand the dramatic effect of menopause on ADHD.
I had a really hard time with Methylphenidate as well. And just stopped using it a few weeks ago. Severe crashes in the afternoon with depression and exhaustion. Having to go to bed in the middle of the afternoon. Randomly crying in bed!
My friend suggested I try extended release Vyvanse. He is a guy, my age, with ADHD. This is my 5th day on Vyvanse - so I am not sure of the side effects yet. So far, I have a smaller crash later 8 to 10 hours after taking it. And I am a bit wired in the middle of the night - but then I always have been.
Menopause runs very late in my family, as does puberty so I don't think I'm Menopausal yet. Very regular periods etc. I have 2 friends exactly the same age and they are both having symptoms so I am very aware it is on the horizon. I have Osteopenia so will most likely be put on HRT before I properly go into Menopause, which by the sound of it would probably be for the best.I thought being diagnosed at my age was late but 59 is the latest I've heard of so far. Made me quite angry really that no-one put 2 and 2 together before, it wasn't as if I wasn't infront of doctors and psychiatrists for years. It only took a Family Health Advisor 10 minutes to work out I had it in the end!
Great that menopause runs late in your family. That is a good thing in so many ways. So glad you are starting on Lisdexamfetamine (= Vyvanse). I think medication is effective and worth trying!
Unbelievable how no one saw your ADHD earlier - and then your family advisor saw it immediately!!!
Me too! It makes me so angry that no one caught it before. When I first went to a psychologist in the 80s (I was flunking out of a pre-med program at University), I understand that it was not caught. It wasn't really a thing back then. My cousin is a male 61 years living in Scotland - his ADHD is quite severe I think - and he is still undiagnosed. But my friend in the US, male in his late 50s, has been on meds for ADHD since the 80s. He does really well on Vyvanse and highly recommends it.
I have sought therapy repeatedly over the years and no one ever considered ADHD - even as recently as 2020. It is unforgivable! 12 years ago, when I was in peri-menopause, a psychiatrist diagnosed me with Generalize Anxiety. I felt I was losing my mind, couldn't sleep, couldn't think straight. And he still didn't consider ADHD.
All the missed opportunities in my life because of uncontrolled ADHD. I have been absolutely alone in realizing something was wrong and trying to figure out what to do! Even HRT, I found out about on my own and had to ask a gyn for it.
I only found out I had ADHD last year because a friend's son told me to get tested. He was diagnosed when he was flunking out of university. He and his father were put on medication 2 years ago and they are both doing so much better.
I've been called spoilt, flighty, flaky, a dilettante. I am bright but I can't keep it together, so it is seen as irresponsibility. My 61 year old cousin has been called even worse - a selfish idiot. It's heartbreaking.
Sorry to be so long-winded. I know it is hard for us to read long posts. Just venting.
My life is not bad - especially this late in the game. I have a house, a partner, good friends, things I love to do, I work for myself. I just need to figure out how to stay on top of things as I age, lose estrogen and have to deal with worsening symptoms. Hoping Vyvanse will work for me.
Thanks for the opportunity to be write about this.
Yes I feel the same. For me the greatest revelation has been the concept of Rejection Sensitivity Dysphoria. It has been this aspect of ADHD that always made me different from everybody else, I was crushed by people, even by people I didn't care about and never knew why until now.
And the terrible insomnia, I was in boarding school at age 12, huge dormitories, 3 beside each other with 30 beds in each, I was the only one wondering the halls at night. I was having a nervous breakdown which the staff seemed to interpret as wilful disobedience. I developed acute IBS, migraines and Fibromyalgia all undiagnosed til a decade or more later. They expelled me and then again from the next one, my family had moved to Saudi Arabia and then the Gulf war broke out.
I get panic attacks now, they started in my mid 30s after having no sleep for 4 nights, I stayed in a near constant state of terror for just over a year, I lost 20 kilograms in a month. It took 2 years to recover but now everytime things get too much they come back, like now. I'm so scared of trying another medication and I'm scared not to too. Everything is in such upheaval, not being able to be in my home for months, my son starting a new school when we weren't ready for it and then trying the new meds at the same time. I'm sure sensible "normal" people would do one at a time, but my life never plays out like that.
I presume indecision is another delightful part of ADHD too?
I'm angry it took so long, I presume both of us have spent so long blaming ourselves we can't see our lives through any other lense now. I am having a rant too now, a melancholy rant so sorry!
Yes, the Rejection Sensivity Dysphoria explains so much. I remember so many times wondering to if I had said something to upset someone. Regretting things I said. And also being so devastated by people's behavior. Even today. Running conversations through my mind.
Also learning about Emotional Disregulation has been amazing. I have always flown off the handle with my partners - become infuriated by the slightest thing. I can easily go into a mood. My dad, my grandmother, aunt and cousins were the same. The rages run in the family.
I also have insomnia and IBS - didn't realize the IBS could be ADHD related - i guess through the anxiety?
So terrible to be expelled and for your ADHD to be considered willful disobedience. I can't imagine the strain that put on your relationships with your parents. My father and I became estranged over the years - as he considered my behavior incomprehensible and deliberate as well.
haha - you write really well!
I had never considered that my indecision is part of my ADHD. That makes sense. I am famous for being indecisive! Also, do you have a delayed understanding of situations? I have read about it but don't know what this is called. I often can't think things through in the moment (especially in an argument with my partner) and only really understand the situation the next day.
I am so sorry to hear about your terrible anxiety and panic attacks. I wonder if Guanfacine might help. I noticed the day after I started Guanfacine, all sense of panic disappeared from my chest. It was like a weight had been lifted from my heart, that I didn't realize was there. I took Guanfacine for several months. Eventually, i felt that it made me too lethargic and I was ready to go off. i keep a supply in case the panic comes back.
Fascinating that chaos happens all at once with you - many catastrophes at the same time. It is the same with me. It is terrible to move home - because home alone is truly where I find my peace.
Don't worry about sounding melancholy. I feel that that the sadness comes and goes with me. I guess it is part of coming to terms with what ADHD has meant for us in our lives.
As you say, we spent so much time blaming ourselves for our behavior, it is hard not to now. But still, I feel hopeful. I guess I am in a good mood tonight I forgive myself more than I used to. And when my mother or sister start to blame or guilt trip me, I try to be aware of it and not let them get me down. Remove myself from the situation and the conversation.
Sorry, a really long ramble tonight. Reading your posts has been very enlightening for me. Thank you for sharing as well and wishing you all the best.
Sounds like you have additional undiagnosed disorders. ADHD can reduce sleep a little but up for 4 nights is not ADHD. Nor pacing the halls all night at boarding school unless people were making noise all night and that kept you from falling asleep. I would be surprised if you did not have anxiety as a diagnosis. PTSD might likely be another. Sleep disorders come in many shapes and sizes too which if you still have issues with sleep need to be ruled into or out of the equation. IBS can easily be caused by too much anxiety.
ADHD can cause other disorders when not managed or undiagnosed. Due to social and self perceptions etc. For example ADHD was the root issue behind my depression, low self esteem, fear of failure, learned helplessness, rejection sensitivity. etc. as a child and young adult. Once I figured out the depression aspect of it, the other issues went away. Then I was finally diagnosed with ADHD when I was 32. Also, culture can be a big factor in mental health. I am not familiar with yours in particular, but that can also paly a role.
Also, the reverse is true. It is possible to have ADHD symptoms and not have ADHD. There are many disorders that can look like ADHD. At least 2 dozen. And anxiety, PTSD, and sleep disorders are included in that list. That is why for a proper diagnosis, it requires a "differential diagnosis". To differentiate and rule out other disorders before being able to say what disorders a person does and doesn't have. They can also worsen ADHD symptoms when comorbid. My Depression exacerbated my ADHD symptoms a lot. But ADHD was the underlying cause of my depression and not that I had comorbid depression as a separate disorder. It was a side effect of not knowing of or how to manage my ADHD issues. I know nothing of your diagnostic processes or therapists you have worked with. But, if you don't feel you are making significant progress, or that too many of your issues won't get addressed in the long run, then you need to determine if you may benefit from someone else. Or a specialist for your issues.
A lot of issues people with ADHD and the myriad of other mental health disorders can be caused or impacted by the response of those around us. Like being designated as "willful disobedience". Their ignorance and lack of understanding or attempts to understand your issues and your needs is an utter failure on their part. But, that can lead to other issues like low self esteem, sensitivity to criticism, learned helplessness, and the stress and anxiety of it can cause IBS among other things.
The hardest part is unraveling everything. To address both symptoms and underlying issues. To know when something is a disorder or a symptoms of something else. Some things can't be fully addressed before others due to their impact. Just like it is hard to know exactly how which medication is doing what if you try too many at once. You mentioned trying "new meds" which I am guessing you meant that in the plural sense? You may have to go back to trying them 1 at a time to reach the right levels of each of them and know how they impact you and their dosages together. One medication differently affect another at different doses. i.e. some meds are dose dependent and interactions can be also. Too many meds at once may have too many variables to manage.
I would be curious if you respond well to guanfacine (extended release). Stress and fear can trigger an increase of cAMP. Which can trigger the HCN channels, which has the effect of shutting down signaling in the prefrontal cortex. Which is why in times of stress or fear or PTSD, or panic attacks, people often find it hard to think straight. Which can manifest like ADHD symptoms or make them worse. Guanfacine specifically targets the HCN channels, preventing them from opening, allowing signaling in the brain to not be obstructed by them. If you can get over the sedative effect. Which might actually be good since most people take it at night and it helps people with insomnia sleep better. For most, daytime sleepiness subsides in 2 to 4 weeks. And it can be taken with other ADHD meds. It is 1 of 4 I myself am taking.
I hope you are getting more therapy than just medication. You really need to learn how to think differently about your self and your interaction with the world around you. You are not the problem. You should not blame yourself. Being born with pre-existing conditions is not a choice. Developing them through circumstance is not a choice. Failure of society to understand and recognize issues and address them the wrong way like the adults at your boarding school is not a choice. Can't blame your self for what you were born with or what your environment did to you without a choice. But, you can choose to get help and work on improving your life, which it sounds like you have been working on for a while. So you are making the right choice. For me, one thing that helped a lot was accepting who I am, including my flaws. As a child my natural reaction to something negative was to hide it or hope it goes away unnoticed. Now, I'm not afraid to make mistakes or be judged. Its more like, oops, my bad. issue over. Like writing these ridiculously long responses. People see these or recognize my name they can start to think, that guy is an idiot writing ridiculously long responses that no one cares about. Or that guy is hyper focusing too much and needs to fix his medication (which is true and something I am working on). Instead I think if no one bothers to read this far because I write too much useless information then then I've in the worst case, just wasted my own time. And don't care what they think. They can just skip my next post. Or flip it over and say, it was a good thought exercise for myself, self reflection, analyzing things I don't usually dwell on.
A friend who was recently prescribed ADHD medication and has been having side effects took a genetic test that's supposed to help predict which meds your body will be most responsive to (both in good and bad ways). She expected to have to pay up to $300 out of pocket, but it looks like her insurance may cover some of that. It was worth trying for her because she was really struggling with the trial and error process, with a lot of error.
Still waiting to see how that works out, but maybe it's something to look into. Based on that, I think they put her on strattera.
The gene sight tests are not recommended in the UK so I'd probably have to send it all over to America and I'd definitely have to pay for it. It would be cheaper to try 3 meds than pay for the sight test. Another issue is there are such bad supply problems at the moment I wouldn't necessarily be able to get what they recommend? Although it's a nice idea it's probably still too new for the NHS, plus I have a lot a medical complications that would make the test even less reliable.
I totally get your concern.all 4 of us in my family didn’t do well with our first med. my partner got a gene sight test done and it picked he med that he should take. He had so much benefit from that he urged me to do the same. I am on my first med since the test and it’s like night and day. We will be doing the same with my youngest.
I’ve lost too many jobs with my adhd symptoms, and having a gene sight test is taking the guess work out of which med to take. My partners side effects were anger, mine had no positive effects, my daughter started tics and my stepkid feinted. This is why people are adverse to taking meds. Definitely get a psychiatrist that understands these things and you should be fine. This is also why I didn’t go through my pcp for meds.
a gene sight test is basically done like a paternity test, where it takes genetics from a cotton swab on your cheek. The lab then mixes those genetics with all mental health medications and will list out the amount of adverse effects your genetics has to each medication. I have included an example. I am currently dealing with insurance to have it covered but it’s being a pain, even after my doctor gave prior authorization.
Everyone’s body is so individual with these meds, I think everyone should get the test. These meds are no joke and can have some major issues related to it, but it’s all in moderation and learning what is best with you. Medication is just some of the treatment you should do. You should also do counseling and lots of water/physical exercise and sleep. My psychiatrist also is having me take vitamin d to help my other conditions, like thyroid issues.
Sadly there's no way I can get any talking therapies/counselling on the NHS and there's no way I could pay for it myself. I had a lot of that sort of thing 20 years ago, although they didn't know I had ADHD then, but they were never able to help anyway. They had no experience of people in chronic pain plus mental health problems, although on paper they're supposed to be better now it would take years of waiting lists for me to be able to get any. They've already said my needs are too complex and said there is nothing they can do for me. I'm on my own with this, as is my daughter really. I'm just going to have to do a lot of reading!
Do you have fibromyalgia? Chronic pain comes with that a lot. Also, I have a counselor that will let me see her for $25. I’ve been a complex case too, but resources are out there. I had to look up specialists will all of my conditions and was able to find a couple. I’ve had bad experiences until I did that. If you pm me (or write your conditions here), me or other people may be able to help research.
Yes I do, fibro, migraines,Ibs,raynauds, Insomnia, Bladder Pain Syndrome,Osteopenia with spinal fractures, prediabeties (although I'm probably out of that now) anxiety/mental health stuff although that was probably ADHD. The list goes on but I've had most of them for 30 odd years now so I'm well beyond research!
My partner’s mom had fibromyalgia, and she had a huge list like that too. Unfortunately it comes with that particular diagnosis. Zen hugs and hope you can figure things out. It looks like none of your issues have to do with your cardiovascular system. That is the biggest concern with adhd stimulant meds. However, you do get more dehydrated as well, so that could affect the other things you have. I would talk with your doc and probably start with non stimulants just in case.
In the future, if you do end up with diabetes, be weary of GLP-1 drugs like Mounjaro and Ozempic. The can help or block psychoactive medication depending on the person. And they have no way to know which way someone would react, or not react at all. Totally screwed me up.
You may be surprised someday. Research is continuous and they know lots of stuff now that they didn't just 5 or 10 years ago.
Cat00, make of this what you will, as I am not a doctor. This is my experience, though, which I've put 100% of my effort into and I am finally getting good results.
I am a male executive, diagnosed two weeks before my 50th birthday and I am now three months into being 51, so it's been about 15-16 months of grinding it out.
I was also put on methylphenidate, but my dose was WAY too high, starting at 10mgs. Within 4 weeks, Dr had me at 40. It almost killed me. Anxiety, mood swings, rage, balance issues, shortened gait while walking, impaired memory, impaired spatial problem solving. A complete disaster. I got off it cold turkey and white-knuckled it for 4 months, still not able to do do everything on my own. He put me on atomoxetine under the premise that at least it is not a stimulant. Right. Again, 4 weeks and it kept me awake at night - Horrible stuff. I went 8 nights and 9 days without sleep and it almost killed me. Again. Another few months white-knuckling it, which again, was not effective, but this time I started reading and researching a lot.
I call it 'mesearch', as I tasked myself to become an expert in MY ADHD (as we all should, really. It's the only way to engage with it and learn to manage it).
Very long story very short, believe it or not, I went back on methylphenidate and I've been on it for 2 months now. I did so because I felt great, almost euphoric the first two days on it and it was all downhill from there (back to Rx #1 above). Another reason is that it is widely available in generic form, cheap, and effective in its own way - More on this below.
Why would I go back on that "horrible poison"? Because the more I researched it, while understanding that I also have a 20 year history of being misdiagnosed and mis-prescribed all manner of anti-depressants, anti-anxiety medications and sleeping medications (until I got off all of it cold turkey on Dec 23, 2019), I also was left with an acutely sensitive brain. So, whatever I put in it would likely be very low dose and very carefully administered by me.
Add to that two concussions right before the initial Rx, leaving me alone and as scared as I could possibly be about my prospects in this world, I decided to approach a careful titration schedule starting at absolute zero. My Dr. agreed and I started with 5mg IR methylphenidate and I only took 2.5 (yes, lowest pediatric dose, cut in half. Nope, not kidding) in the morning only. As expected, I got anxious, hyperactive, a bit angry/irritable and the rest of it. Complete flashback, but only 10% of the first time around. I did that for one week. I noticed that by day 5 or so, I could focus a tiny bit better and only for a short 1 hour window, but I was not getting as upset anymore. Week 2, added second 2.5 dose at noon/1:00pm. Again, upset afternoons for a few days, until it went away. Week 3, added third dose around 4:00/5:00pm. All the while, sleeping very well (CRITICAL). Without proper sleep, Rx will simply not help. In fact, it can backfire -> Focus on sleep quality AND QUANTITY first, middle and last. Always.
I continued like this so on week 4, I started with 5mgAM, 2.5 Noon, 2.5 PM. Week 5, 5mgAM, 5 Noon, 2.5 PM. I continued layering 2.5mgs on each dose, shortening the cycles eventually to five days and I am now on 3 x 10mgs / day. I will soon start on extended release, as I am not the biggest fan of having to take it multiple times per day. That said the 'three crashed per day' routine has also abated. I will admit, the first 4-6 weeks were rough in that regard.
I would encourage you to show this post to your Dr. and take a careful titration approach, as your symptoms sounded suspiciously familiar to me, and I wonder if you simply started on too high a dose?
All that said, PLEASE READ THIS PART TOO -> Medication is merely a tool in the toolbox. I finally learned to approach it as such and taught myself to collaborate with it, rather than fighting it, which I did not realize I was doing before, which only exacerbates ADHD symptoms and leaves you at the end of the day feeling defeated and sad with that 'nothing works' feeling. Thriving as an adult with ADHD takes ALL the tools in the toolbox, most often including Rx as well. I literally taught myself to sleep correctly, with proper sleep hygiene again from scratch, after being a life-long insomniac about 8-9 months ago. I drink zero alcohol (never did much, but especially not at night), I take all the proper supplements (especially super-high quality O3s), I have a much better diet than I did 16 months ago, and I finally am able to get out of the house to go on walks / run or go swim laps nearly every day. I even learned to meditate and did so consistently for a few months (I need to get back on that!) The Rx is NOT a panacea, nor is it a magic pill, nor was it ever meant to be. The good news is that when I do all these things I need to do to live a healthier life, the Rx does help accelerate progress far beyond what I would be able to do on my own, and I am finally reaching that feeling of achievement, drive, ambition, and motivation to keep leaning into the effort without caring about the result. Paradoxically, I am getting much better results, and with increased consistency. On some days I even feel, I daresay, euphoric, if only for a moment. That is the litmus test for me. If I start feeling 'too good', I am on the bubble and It's best I stay there, hence the 10mgs.
Keep at it. You're asking all the right questions. Do your 'me-search' and customize your life approach to the behavioral tools (and other tools) that fit and make sense of your particular constellation of ADHD symptoms, and you'll see how things start falling into place. Your anterior mid-cingulate cortex will thank you. (Listen to Andrew Huberman's podcasts on motivation and drive to understand that reference) 😉
Wow you write in such a fantastic way, so engaging! I certainly have an oversensitive brain, apart from everything else it's a side effect of chronic migraines from childhood. Everything is permanently ramped up. The only thing healthy that's really keeps it calm is exercise, when the day is my own (like tomorrow Yay) I will do a weights/cardio class in the morning, after lunch I'll swim for 45 minutes and then after dinner I'll be at my kung fu class. My mood will be stable. But then it's back to a 6 year old boys conflicting needs with my 9 year old daughter etc. Back to living in my disordered head peppered with moments of fear.
The elation you wrote of I came to regret the most on methylphenidate. I would have a brief moment when suddenly everything seemed possible, it was wonderful, my future would suddenly expand infront of me, like double doors opening to a glorious sunrise. Then almost as soon as it came it would give way to a crushing depression that would lasts hours until the stuff was out of my system. Feeling so good a moment made it feel even more cruel. I couldn't bare to feel that way.
My sleep has always been my achillies, we've gone down every possible avenue we've found but the NHS doesn't have much and we don't have money. Same with the ADHD meds we don't have the money to take the long route.
My husband and I are just about rebuild the roof of our house, make it watertight, tile it, make all the rooms, plumbing, electrics, windows, staircases etc. He has a full time job and I'm disabled with 2 young children were doing it ourselves bc there just is no money for it to happen any other way.
I don't have a doctor, I have a prescribing nurse, although I suspect she won't engage with most of what I learned on this forum I reckon I could ask her about microdosing the stuff?
I'm only trying meds to see if it could help my memory and my sleep, I've managed 47 years without......well I say 'managed' 😁... I'm still here though!
I hear you, on multiple fronts, but especially the elation followed by what can only be described as a personal apocalypse in stages that can last days or even weeks. Nope. No more. I of course am not telling you I'm right, but to me, that is a tell tale sign that you were simply prescribed /taking too much. I'd start lower dose and Immediate Release, generic to try it out and keep titrating up slowly until you're juuuuuuust below or 'on the bubble' with that feeling of elation. That's the approach I took and although I'm not where I want to be yet, I'm vastly better than I was just two months ago.
That said, I also agree that my Dr is basically there for the equivalent of routine oil changes on a car. I mean, I use the guy to dot the I's and cross the T's, but I have zero (ZERO) faith in the medical community after the last 20 years and almost zero in pharma as well. The fact of the matter is that it is a misnomer to call it healthcare; I prefer to call it symptom profiteering, but I'll digress and get off my soapbox here before I really get going...
Anywho - Remember, tools in the toolbox. You're doing all the work of figuring out which ones to pull out to use depending on the time of day, your mood, what you have going on, etc., so you're doing great. As far as exercise, I am nowhere near doing '2-a-days', or more, including swim training and Judo in ONE Day... Wow. I would strongly recommend that even on your off days, though, you just go out for a leisurely walk, especially to a park or by a body of water, if you have one nearby. Just a 12-23 minute walk can have a huge reset effect, and it sounds like you do greatly benefit from the calming effects of exercise. Good on you. If you don't even have time for that, learning the basics of meditation is HUGE. I highly, highly recommend it. 12 minutes a day on the physiological side of meditation (skip all the hippie-dippy stuff) will make a surprising difference in mood stabilization if you haven't tried it already. I recommend you read Amishi Jha's 'Peak Mind'. Great book, it makes a ton of sense and I learned all my basica from that and Jack Kornfield's 'Meditation for Beginners'. Super easy, accessible read, and easy to put into practice. Be warned - Meditation is work, it's not as easy as we tend to think it is.
At the very least, I'm very proud of you because you are fighting the good fight, and you have little ones to help you remain patient and grow in virtue, all while staying busy with house projects and minding the till due to economic circumstances. I totally get it. Keep at it, taking a good four to five 5-10 minute rests during the day to revisit your to-do list and reorder/reprioritize and timebox the remaining items for the day. That also helps me relax and extend my serenity throughout the day, as it's not getting away from me; I keep 'reining it in', as it were, like a wild horse.
Remember - Most often, and following Occam's Razor, the simplest answer is the right answer. Sometimes less is, in fact, more. Try a very low dose and track it carefully over a few weeks as you titrate up and you may just be lucky enough to experience what I'm experiencing. I can only hope this helps you and others I meet along the way.
I am what they refer to as "straight edge". A term from the hardcore punk scene meaning alcohol and drug free. ie. I do take drugs for medical purposes but not for recreational purposes. So when I was told my therapist was prescribing my amphetamines, I was reluctant. The vast majority of people with ADHD respond best to medication. And literally millions of people take them for that purpose. So, not really a big deal. If you have other mental or cognitive disorders that make your therapy more complex, then maybe consider a neuropsychiatrist if you can find one or even maybe a neurologist. They tend to have a deeper understanding of the drugs and their effects than psychiatrists.
People react differently to different medications. You may react fine to lisdexamphetamine or you may respond better to Strattera, guanfacine, or modafinil, or Wellbutrin. I know Strattera is sometimes prescribed to people with a history of depression due to some anti-depression effects. Wellbutrin is an antidepressant that can also enhance ADHD stimulants that are at low to moderate doses. If going the amphetamine route in a do-over, I would try lisdexamphetamine due to its much lower blood concentration and longer duration than most other options in that category. Which has the least potential to build tolerance or have side effects.
It may take a while and may be a combination of meds that work best for you. But you will get there eventually. Also, search online for nutrition and supplements that can benefit people with ADHD.
Long term side effects is dose dependent. Typically, if steady at low doses or depending on the person moderate one. the meds may have a bit of a crash if you stop taking them. Can be a few days or a week or 2. Long term effects for higher doses depends. Max dose of Strattera (atomoxetine), and max dose of Concerta (methylphenidate), not really an issue. Long term effects of Adderall (amphetamine), ruined my life. Most people are steady on Adderall and have a crash for a day or a week depending on how much they take and for how long. Mild crash, not like a meth addict or something. For me, and some other unfortunate people Adderall downregulated and damaged many of my neuropathways. Which is something many therapist are ignorant about and many even deny is an issue. Also very negative effects on my endocrine system. Which lead to anhedonia, low motivation, low energy, hormone imbalance, low sex drive, E.D., weight gain, amphetamine dependence (not addiction). Dependence in this case just means that my brains counter action to the meds and damaged pathways leave me far below my natural baseline off the meds. so, just to feel my normal pre-medicated self would require drugs just to get to that level. But doesn't actually feel the same. The biggest issue I have is a blame the victim mentality when it comes to issues like mine. They say negative side effects and tolerance only happen when the drug is abused. Yet, many people like myself got those issues on regular prescribed doses. Actually taking less than I was prescribed most of the time I have been on them. The ICD-11 diagnosis codes list some of my issues from Adderall. But they are under the heading of drug abuse and addiction. Again, at prescribed doses this happened to me. And others you can find on reddit trying to figure out how to fix their side effects and tolerance issues.
But, don't be afraid of my negative experience. Not likely to happen to you and again, most are stable on it. methylphenidate meds have a lower incidence of long term side effects due to how it works. Don't be afraid to try any of the ADHD meds. They often have a lower side effect profile than many other common drugs. But, if you find down the road issues with dose escalation, or other side effects that seem to be gradually building like the ones I mentioned. You can try a different medication, or you can also try taking something like memantine to protect your brain and can sometimes prevent or even reduce tolerance to ADHD stims.
Strattera, for me actually had mostly positive side effects. When I took it with Adderall, over time it reduced my tolerance to amphetamines. Similar neuroprotective effects on the NMDA/glutamatergic pathways as memantine but not as good for that job. Guanfacine can often reduce stimulant induced insomnia and enhance ADHD meds during the day, when taken at night with them.
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I forgive myself more than I used to. And when my mother or sister start to blame or guilt trip me, I try to be aware of it and not let them get me down. Remove myself from the situation and the conversation.
Should I tell my family about my ADHD?
Has anyone taken the GeneSight test? What was your experience, was it helpful for your medication management?
Have you considered not having children because of your fear to cope with them and adhd? 
ADHD medication alternatives?
