I'm 2 weeks into a 4 week stay at hospital following a complete MH crash after nearly 2 years of increased fatigue, depression, overwhelm and rarely leaving my bed for any more than a couple of hours.
I've had ADHD tests (questionnaires for myself, wife of 28 years and parents/siblings, old school reports) and my Psychiatrist concludes that my ADHD predates my 36 years old TBI. She is about to try me on medication and as per usual my memory of what she told me what the medication is eludes me but I believe it's the standard NHS amphetamine type one for ADHD in adults.
I'm currently on Agomelatine, Melatonin, Diazepam and Zopiclone which are all taken at night. I also take 2mg of Diazepam mid afternoon before my daily 1hr nap.
Does anyone have any experience of ADHD meds ?
Are there other/better alternatives to the usual amphetamine type meds ?
I'd be grateful for the benefit of anyone's experience.
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Glenquoich
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Is it possible that you may have been ADHD before the brain injury, but very mildly on the scale. And since your brain injury it’s been exasperated. Damage to the frontal lobe must have an effect.
Having gone through the questionnaires, school reports from as far back as 1973 and extensive discussions with therapists. The general conclusion is that I had ADHD as a child before my TBI in 1984 aged 17. It wasn't that mild though, it's just that they used different methods to deal with it back then; usually corporal punishment via a leather strap briefly attached to the hands at great speed. I had quite a bit of that 'treatment' in my school days, usually for staring out of windows; what else are school windows for ???I did well at school in maths, science and music but spectacularly poor in everything else and my TBI was in the final month of my school career.
I would hazard a guess that the TBI turned it all up to 11 because I've had the attention span and short term memory of a goldfish my whole adult life. It only took the 33 years in 2017 for my post TBI sequelae to be recognised so attending to a lifelong attention deficit problem just 3 years later is a bit of a bonus.
Pardon the dark humour, it's my well established coping strategy.
I'm a wee bit perplexed as is the usual before embarking on another medication voyage.
Yes and to think ADHD wasnt recognised back then. Seems a lot of input from professionals and after all these years they just want to help, sadly it came to breaking point before preventing this current situation. I believe ADHD medications takes longer to have recognised results it wouldnt be 3 wks, more 6wks onwards with monitoring med review possibly dose may change. I dont have any answers as everyone different and reacts differently on meds whilst taking others. But glad you are in safe place and please think positive, people who know you and professional around you want you to have positive outcome .
My son was diagnosed with adhd at 7 he'd been hyper since a toddler but they said they couldn't diagnose properly till he was 7 and then he was seen by a child physiologist and put on Ritalin I didn't notice a great deal of difference whilst he was on it,at 11 he went to a school that specialised in treating boys with adhd but insisted on no medication just constantly keeping him active that made all the difference
I'm not a fan of medicating. The amount of meds you are on sounds like a horror show from a 1970's mental hospital. My mother was sent to a mental hospital for having epilepsy in the 70's. 20 years later she was 'released' into the community, she still had epilepsy. The effects of all the medication had turned her into a vegetable with the simplistic voice and mind of a small child.The more meds the more problems they cause, the side effects of each cause more problems which leads to more meds to tackle that new problem and on and on.
Throw the whole lot in the bin, get some fresh air, eat some real food and get some exercise and use meditative techniques to control your feelings and emotions and thoughts which will help train your attention and concentration.
It may also be an idea to have some kind of talking therapy to deal with issues you may have had in the past. Unravel them and free your mind and get on with life.
Sorry if this sounds a bit brutal but pills will not make you 'better', they'll scramble your brains or worse turn you into a vegetable.
I've seen it happen. The doctors etc don't care about you, you are a case file, a statistic.
Whatever your views on medication, it irresponsible to advise someone to throw their medication in the bin. Suddenly stopping medication can have serious consequences, both physically and mentally. If someone decides to stop one or more medications, this needs to be done very carefully and often very gradually, (and preferably with medical or pharmaceutical supervision,) otherwise the consequences could be downright dangerous. I understand your argument, but I think your advice needs to be put in a different way in order to ensure the person's wellbeing.
I'm not a fan of meds either Pinkvision, I'm not a fan of some pop music either but there are times I have to play it as a musician because it pays the bills.A wee cursory glance at my back story and recent posts might offer a bit of context to my situation at this moment but I do appreciate your contribution.
I had a log chat with my Psychiatrist who knows me very well last night and we agreed that meds are only a short term fix to get me back on my feet, nevertheless they are necessary at this time, this has been a condition that has dominated my entire adult life and I'm in my mid 50s now. The meds are just the first step of an overall contingency and at 8 years clean and sober I do not want to go back to the self medicating route.
As for the talking therapy, I'm currently the only patient in the mental health section of this hospital, the other patients are either in addiction or eating disorder therapy. This has afforded me the strange and unique situation where I'm getting 3 hours per day of 1 to 1 talking therapy with some really good therapists. I'm no stranger to this hospital, I got clean and sober here 8 years ago and this is my 5th stay since 2014 regarding my mental health and my TBI sequelae was only recognised in 2017 after 'living with it' for 33 years.
I'm only looking for the benefit of some other's experience of ADHD medication and having a TBI (if such another person(s) exit) in order that I get an idea of what may lie ahead of me.
I saw that list of medication and thought 'jeez' don't do it man', 'you'll end up monged out.' I was genuinely fearful for you. Apologies if it came across strong but I've seen what these pills can do. You only need to read the side effects. I hope it all works out for you.
If you think Glenquoich's meds are a lot, I wouldn't even begin to list mine, each has improved my life.
Sometimes medication is the only way to get the brain working.
Glenquoich's meds are fairly limited, but looking at them in list from there is one that stands out as possibly being unhelpful, and a couple that will need to be gradually reduced to be safe. I'm not going to put my penny's worth in the hat unless asked as to what. I have limited knowledge of ADHD, and that is more around adolescents. But if Glenquoich wants to bounce any questions my way, I will attempt to find the appropriate information, although I'm sure his Drs will be able to answer.
Hiya, I hope this is working out as the boost you needed, you'd been having a rough time.
I know ADHD in children is treated with ritalin/ methylphenidate (which incidentally, is also used as a treatment for chronic fatigue in the USA I think).
I have read that post concussion problems are worse if you have ADHD too. Your psychiatrist might be onto something? Any chance that she can get a second opinion from a neuropsychiatrist?
Usual caveats with head injury and meds apply - start low, and go slow....
Hi Pg, it's methylphenidate they're putting me on. I start them tomorrow. I'll ask her about talking to a neuropsych, great advice. She's actually a very rare species of psychiatrist herself, she's easy to talk to and hasn't got the normal psych ego.
At least I'm in a safe place to start the treatment, should anything go awry and I'm out of the road from all the Christmas madness this year and all the dysfunctional family dynamics for a change.
I'm feeling a lot more optimistic about all this after the recent mental health crash, I'll just need to stop fighting with officialdom when I get out in a fortnight because there's only ever going to be one winner.
They've stuck me on a strong antibiotic as well tonight because I've developed some back acne since arriving here, I'll be rattling like a maraca this Christmas! Who'd have thought it; acne in my 50s, maybe I'm getting younger!
It's probably all the recent stresses leaving my body, as Bessel van der Kolk says, the "Body Keeps the Score".
Good to hear from you too Gq , was wondering how you were getting on. Glad you are in a good place too. Can't be bad - will be good to hear how the ritalin goes for you too. Hope you get on alright, fingers crossed for you. (You're lucky with the psychiatrist, I understand good ones are hard to find - I like mine too).
Do you think you fight officialdom because ( though let's face it, someone has to) if you feel really strongly about it, then it keeps the ADHD out of the way? Trouble is, I suppose then you would probably be hit by BI fatigue? I can relate to that because since my TBI, I have to decide not to pick battles unless strictly necessary - doesn't always work! 😊
Christmas isn't happening anyway this year! My area is being locked down Boxing Day .. bit of a relief for me - probably means I won't be crashed out till February 😊.
Do you think you fight officialdom because ( thoughlet's face it, someone has to) if you feel really strongly about it, then it keeps the ADHD out of the way?
Yes, never though of it like that before. I think it might be a massive exercise in spleen venting, no wonder I end up cream crackered. I'm going to pick my 2021 fights a lot more carefully; strictly the weeds in the garden and the mice in my man shed, maybe even buy a goat and a cat to fight them for me.
We're locked down as well and I think it might be longer than they're telling us at the moment. I thought I'd never hear myself saying this but I think the restrictions that my BI has brought me has left me better equipped in dealing with the covid adversity.
Good resolutions, I think I might need to borrow them too! Probably can't get a goat though - think that might be pushing the boundaries a bit far on the communal gardens, even for me 🤣 Might try for a greenhouse though... 🤔
Suspect lockdown might be for a while as well.... I need to catch up with my watercolours anyway 😊
It's funny, but I think you're right about handling lockdown better, I wondered if it was the hours of psychology appointments on 'dealing with uncertainty' paying off for me?
Oh, and the other thing, is that ADHD would make sense, because you have to be really intent or excited by something to be able to concentrate on anything for any length of time. So something you enjoy is easier than something you don't. It's really tough for children, but adults with ADHD can be hugely effective, because they can do so much stuff at once if they are enthusiastic enough (have a family member - nightmare child, spectacularly productive adult - but only in spheres that attract her and where she can use her particular skill set).
Do hope this all works out for you, getting a diagnosis of dyspraxia post TBI upset me at first, but has helped me to understand why I do the things I do - and why things are so tricky post TBI...
I got diagnosed in August 2020 with adhd and am on 70mg Elvanse (quite a high dose) it has given me light where I could only see dark, its given me focus and the ability to see through tasks to the end.I had a TBI in March 2019 but it has been untreated up to now, ive managed to talk my doctor into a referral (once my covid symptoms have gone) as ive now got covid! The sound and light sensitivity is unbearable and my head just feels like it needs a pressure cook valve on it.
I hope they can help me as I cant imagine the rest of my life like this, im spending so much time in bed and not with my boys.
In my experiance I had adhd before my diagnosis and the TBI just made my symptoms worse, medication is not a magic pill, we need to work on our executive function skills as well and for me doing these 2 together are priceless. I just need support for my head pain sorting and I can get my life back.
The headaches have never went away for me and I'm now 'allergic' to most of the pain meds, I'm finding recently sipping water and 2-3 minutes of deep breathing every hour helps; yet another alarm on my phone, I'll need to get one of those 'smart' watch thingies because I constantly lose my phone.I'm on the third day of methylphenidate, it might just be the placebo effect but I'm already getting small glimpses of fatigue absence. I got some memory tests done on Thursday and my short term memory is like a goldfish's. I also found out I can't count objects visually above 4 or 5 without using my finger to point at them. It's strange what I'm finding out even after 3 decades into this new life.
That seems like is a lot to do with adhd and concussion combined. I have struggled with numbers all my life but have really learnt more over this past 8 months about how great I masked this as a child. I have dyslexia as well and im sure Discalculia is a part of my learning ability to. Im learning to set up a good morning routine as ive learned this sets the bar for the rest of the day. I do lots of planning which is helping my memory.
Im going to try learn to do some breathing exercises to help me meditate. I could never quieten my mind before but now I'm on medication I can focus so much more.
I've been told by my physio to start exercise as well so im going to start this as soon as I can go back out side.
I know there is a big connection between the head and the gut and that if one is poorly the other is to so it makes sense that your pain meds are hurting your stomach. I think your alternative may be the best way but its difficult as it makes life hard when your trying to get some sort of normality.
My short term memory is dreadful, but ask me something that happened when I was like 2.5 and I can picture it like it was yesterday.
My concussion has made my short term memory shocking! That's why I do lists and timers for appointments to. I've signed uo to a thing called peak pro and I due brain training every day as part of my morning routine it is helping as I can see where I really struggle but being consistent with something really helps me feel like I can stick to my word.
I think I've got a similar memory to you. I can't remember why I'm going downstairs half the time, it takes about a week of repetition before somebody's name sinks in but I can remember details from nursery school, phone numbers and birthdays of classmates from primary school as if it was yesterday. It wasn't, this information is 40-50 years old and it's been like this since my TBI in 1984. It's a pity I didn't learn about this until a few years ago, I might have been a bit less self critical.I'm going to give peak pro a good look today, thanks for the info. After 4 months on this forum, I've picked up loads of small tips that make huge differences.
To early to know with the methylphenidate just now it's still a low dose but I was walking around the ward singing to myself in silly voices yesterday, something I normally only do at home alone.
Its a good sign that the dopamine is kicking in, thats the part I missed the most with no medication. Just to feel happy at the things that should make you happy 😊. Dr Barbara Cohen has some great podcasts yo, she is a wonderful lady who has been through all of this to. She works on Executive function skills and they really help, well they have helped me get organised and feel like I can achieve again. Omg me and names!!! Im shocking but I saw another thing and apparently if you associate a name with an object then you never forget it, ive not had time to try that one out yet! But you have to practice it quite a bit, same as everything, ive always taken longer than most and I never got times tables! Been bloody hard trying to teach my children this when I still don't get it 🤦♀️
Hi G, Glad you're trying out the methylphenidate and it's ok so far.
My short term memory and executive function are pretty awful since my TBI - same thing, masses of alarms and reminders on my phone, plus endless lists.... and the occasional post it 😊
I used Lumosity quite a bit for brain training, which is pretty interesting, but one of the best brain training things is apparently reading novels ( which sort of explains why I went from being a fluent reader pre TBI to struggling with tougher stuff afterwards - my neuropsychologist suggested re-reading novels, and trying out audio books )
I was diagnosed with adhd at 25, and put on meds. I tried for 6 months, but I ended stopping them. I felt not myself. I would not recommend you add another medication since you are using so many. I do alternative remedies including essential oils, herbal teas, and supplements. Changing to a healthier diet like paleo will help.
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