Methylphenidate (Ritalin) and the diagnosis game

Hello everyone :)

I'm about to try and get methylphenidate (Ritalin in the US, Concerta in the UK) on the NHS. I'm in a weird position, because they refuse to believe my brain injury is real. The official diagnosis is "medically unexplained symptoms", which in treatment terms gets you zilch.

I'm going to try the sneaky route and aim at an ADD diagnosis instead, which is the only way to officially get the stuff. My attention span is rubbish, as confirmed by the neuropsych last year, so it wouldn't be totally wrong.

So...

1) Has anybody here had results from methylphenidate?

2) Any advice for me?

Thanks in advance,

Lia

18 Replies

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  • All I'll say is, make sure there are no contraindications to the drugs you're on. I would love to experiment with Dexedrine/ritalin for the same reasons, but I'm taking blood pressure medication so it would totally be out of the question as Dex raises blood pressure. USA/Canada seem more willing to offer these drugs after brain injuries/strokes, it seems sadly we lag far behind....same ol, same ol! certainly with the NHS. Although, having said that, I did contact a private gp once who was quite willing to consider it. I didn't follow through with making an appointment though.

    Good luck if you go ahead. Please let us know how you get on.

  • Thanks for the reminder. I've checked the contraindications, and there's nothing to worry me there. I'm on no medication that might interfere (or be interfered with).

    I'll keep you informed. :)

  • Hello Nightbird - Jules here,

    Its really sad you are having to fight that battle without the support of your doctors.

    I hope you find what you are looking for and its safe for you and that maybe the doctors will support you better in the future.

    kindest regards Nightbird

    Jules

    x

  • Thank you for the support. I do have a few avenues to try if they can't help. It would just be so much easier if they believed me.

  • Hi NightBird

    Imperial College London has a traumatic brain injury clinic. They are also well-funded to conduct various clinical studies. One such study involved 40 people who had suffered TBIs being given 2 weeks of a placebo and 2 weeks of Ritalin. It was double blind so the docs didn't know which was which.

    My daughter was one of the 40. The first drug produced no reaction whatsoever. The second one had a real impact on her. She felt jittery, like she had had too much coffee (and believe me since her TBI she can really knock back the coffee). She's back at work now and her manager noticed a difference in her. She was making more mistakes and her mood had deteriorated. Her manager insisted that whatever she had been taking she needed to stop. My daughter finished the two weeks, swears that was definitely Ritalin and not a placebo and never wants to touch the drug again. The docs agreed, it didn't work for her.

    Happily, during the study other people who took it found it very beneficial and were then prescribed Ritalin. I don't believe it has been tested specifically for BI but the docs say they can still prescribe it. This study was very small but hopefully they'll do more research in future because for some participants it gave them more energy and their cognitive functions improved greatly.

    Hope you can get it to at least try it out. It doesn't stay in your system for more than a few hours so if it isn't good for you, there won't be some long winded withdrawal process.

  • I need coffee to wake up too, and I'm still half-asleep most of the time. The jitters are interesting - they sound a lot like what I experienced on modafinil and its variants. Is that something your daughter has tried?

    Maybe Ritalin won't help, but it definitely seems worth trying to me :) . Modafinil increased the sense of spaced-out disconnection until I couldn't keep track of anything. But I've heard anecdotes from other people who found it brilliantly useful.

    Lia

  • No, apart from the Ritalin trial she hasn't tried anything else in that category. She does take an anti-depressant for her anxiety.

    It really is trial and error with all drugs as to whom they help and whom they do more harm than good.

  • It can't hurt to try it especially if you're not already on medication. I've never been offered Ritalin despite having a frontal lobe injury and problems paying attention that accompany it. I don't know if that's because doctors here aren't clued up on it or my problems aren't judged to be severe enough. I've only ever been prescribed antidepressants and to be fair they do have a beneficial effect on my mood and productivity living with a BI, although I know not everyone with a BI seems to be able to tolerate them.

    I know about a drug called Modafinil that is supposed to improve memory/attention, it's mainly issued for narcolepsy as it was originally intended for and I doubt it's issued to people with brain injury/brain disorders to help their cognition, evidence-pending.

    "Modafinil promotes attention, concentration and maintains wakefulness in a patient with narcolepsy, obstructive sleep apnea and shift work sleep disorders."

    I seem to remember someone on here saying they used modafinil a few years ago but can't remember who.

    Since you're in London where the vast majority of clinical trials seem to take place, I only know of one that testing cognition with Ritalin for people with moderate-severe TBI ukctg.nihr.ac.uk/trials/tri...

    Looks like they've completed the trial and anyway you don't have a diagnosis of TBI.

    Looking at the drug interactions, I probably wouldn't be able to take Ritalin anyway being on Sertraline. drugs.com/drug-interactions...

  • Modafinil had a very strange effect on me. One of my symptoms is a constant spaced-out sense of disconnection, and modafinil made that worse. The only thing I can compare to it is the state when you wake up in the middle of the night after a lot of Nytol sleeping tablets. That stuff is called diphenhydramine and it's a known deliriant. Not a fun experience.

    I tried a few variants of modafinil. I bought it online - it's in a legal grey area for that. Unfortunately Ritalin isn't, so it's prescription or nothing. That's why I'm going to try for an ADD diagnosis. ;)

    Lia

  • That's weird, isn't it supposed to increase alertness not diminish it? I had a similar reaction to amitriptyline, an antidepressant but used for sleep disorders too, even on the lowest dose I felt so lazy during the day I was almost a living cabbage.

    Good luck, but beware you don't want them to think you're a malingerer.

  • I think there's a lot of unpredictability about the effects of these drugs. That's why people often have to try a few before they hit on the correct one. Different personal biochemistry and so forth.

    The worst thing they can do if they think I'm a malingerer is refuse to treat me. Which in practical terms is no worse than the "nothing we can do" brand of non-treatment they've already got going on. :)

    Lia

  • Hi Barny

    That may be the trial my daughter took part in because it ran for two years and ended Dec 16. She had MRI scans periodically, a SPECT scan and had daily cognitive tests to take on the researchers' iPad. Even we had to complete questionnaires as her carers. I'd be interested to read the overall result if the writing isn't too technical.

  • I presume they'll publish the results sooner or later however. Sorry to hear that your daughter didn't tolerate the drug, but it must have felt worth the try from the outset. Do you know what the SPECT scan showed, i.e. any effect?

  • To be honest the doctor ran through the scans with us and we were expecting more from the SPECT scan as far as visual images than we were shown.

    Up to that point her diagnosis was suspected or likely diffuse axonal injury but they now conclude that's a definite. The scans showed some swelling of the brain. I had thought that would have diminished completely by now. Doc said it can take up to 2 years. Well we are fast reaching the 2 year mark. I took that as a positive. Maybe she still has further short term improvement ahead of her. Scans did show that where the two lobes of the brain are held together at the top of the head, there was a tear of some sort. Originally we were told by a registrar, twice, that she had a slight brain bleed there, let her watch television and she'd be better in a month. Yeah, right.

    She had hoped the drug would help her but it wasn't meant to be. Worth a try though.

  • Doesn't SPECT scans show brain metabolism? This is probably more useful to know whether the brain is working normally than an MRI which only shows tissue damage. It's quite unusual to have a SPECT scan performed but in this case they were interested in changes in brain activity that an MRI or CAT scan wouldn't show. So I take it the scans didn't show any changes between before and whilst taking Ritalin?

    You can most likely expect more improvement/adjustment over the coming years as she's young it's in her favour.

  • The SPECT was done only once either before taking any pills or during the first lot of pills. Can't remember as I was abroad at the time this scan was done. So I'm not sure why they did it as they couldn't do a comparison study. When we got the results the doctor said the trial hadn't yet been 'unblinded' so they didn't know themselves what week she had the placebo or the Ritalin but it sure seemed pretty obvious to us.

  • According to the study I linked they were using the SPECT scans as a way of measuring brain dopamine levels to predict who would respond and the MRI as a way of observing the structure and function of the brain.

    So it was probably done at the start before taking any pills? I gather at some stage they'll be able to know which patient received the Ritalin at what stage. And whether the people who benefitted could have been predicted with scans. Hopefully, the results will be published at some stage and we'll know.

    I wonder how you came to be involved in a clinical trial? I've always felt it could be an option for me, but so far clinical trials on TBI seem to be scarce, perhaps because researchers feel they are least likely to benefit from any intervention. A lot of the progress in brain injury seems to be generated from stroke research, I think because types of stroke are similar to each other it makes them easier to compare, whereas TBIs can be vastly different to one another. Here's hoping for more TBI research.

  • Barni, have sent you a PM.

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