goldfish
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Post by goldfish on Jul 19, 2017 23:44:44 GMT
Hey everyone,
I've been on methylphenidate for about 6 months, it's been helpful but I don't feel like it's reallllly addressing my ADHD. It helps me concentrate and makes starting stuff a little easier but that's about it
I've looked into atomoxetine (Strattera) but it looks pretty scary, and also leaves a lot of symptoms behind.
I was wondering if anyone has tried guanfacine (aka Afken, Estulic, Intuniv or Tenex) - from what I've been able to figure out from the internet, it seems to reduce the racing thoughts / anxiety-ish symptoms, which I have quite a lot of.
It can be taken alongside methylphenidate which sounds good to me, but I'm not sure how my doctor would feel about me suggesting this. I don't want to stop methylphenidate because I can't really face everything taking 50% more effort again... And I'm worried that if I tell my doctor that methylphenidate hasn't been super effective he'll just stop prescribing it
I get the impression that the way medication conversations are supposed to go, is that the doctor suggests something and I say yes or no, rather than me just coming up and suggesting some drug I found on the internet
tl;dr: - Anyone tried guanfacine? - Anyone tried guanfacine + a stimulant? - Can I just suggest drugs to my doctor
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Post by marionk on Jul 20, 2017 5:15:59 GMT
There are only three medications licensed for ADHD in adults in the UK, anything else would have to be prescribed off label or for some other ailment. This is partly why I have pursued a dx of narcolepsy. (Modafinil can be prescribed for narcolepsy by a sleep specialist, and is reported as being beneficial for ADHD.) Even prescribing off label has strict rules, and fairly obviously the more restricted a particular drug is, the less likely it will be possible to get a doctor to prescribe it off label. Many drugs cannot be prescribed by GP's at all (like dex), without the authorisation of an appropriate specialist.
I would expect it to be easier to get guanfacine or lisdex prescribed off label than e.g. modafinil, as they are licensed for use for children with ADHD, but my specialist wouldn't even prescribe dex! I definitely asked about lisdex, and modafinil (no luck with either) but can't remember if I specifically mentioned guanfacine.
Different doctors seem to be more flexible than others though, and I have definitely read of people being prescribed/taking lisdex, so there is a definite possibility that you could get guanfacine.
There's certainly no harm in discussing alternative drugs with either your GP or your specialist.
I've practically given up trying to get anything else. I get a lot of benefit from a higher intake of protein, and some benefit from natural MAOIs like coffee and turmeric, I have also experienced some benefit from ginkgo (also a natural MAOI) and (Siberian?) ginseng (not the usual one, and it's quite different apparently).
I've looked into getting prescription MAOI's, but they are on the official scary list these days. I expect they got their scariness from being prescribed at too high dosages, as they do indeed seem to be excessively potent.
I just wish there was some medication that would give the same benefits as the loads of protein, without having to keep tabs on my diet or risk feeling like crap (normal for the last 20 years) the next day. On the plus side, keeping tabs on my diet, with loads of protein, it's not much more effort to lose weight as well!
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Deleted
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Post by Deleted on Jul 20, 2017 11:04:35 GMT
I wish the answer was yes.
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goldfish
Member's not posted much yet
Posts: 41
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Post by goldfish on Jul 20, 2017 20:11:43 GMT
Thanks for the info! I'm always impressed by how much you know about this stuff Guanfacine is licensed for "teenagers and children" ( www.nhs.uk/Conditions/Attention-deficit-hyperactivity-disorder/Pages/Treatment.aspx ), I'm 20 so technically don't come under this but the NHS service overseeing my treatment is for 16-25 year olds so maybe.... However the NHS site says guanfacine is used when stimulants haven't been effective, rather than being used alongside stimulants. I didn't realise dex- and lisdexamphetamine weren't licensed for use in adults, it seems weird that one stimulant can be deemed effective but others not. So I agree that this might be a sign they're willing to prescribe other unlicensed medications such as guanfacine... I've seen a lot of people on this forum saying they use/have used dex/lisdex I've tried a lot of supplements/natural stuff and they've been more or less useless... A friend of a friend has also tried modafinil after ordering it online and found it useful, but more in the sense of keeping them awake so they can spend more time trying to concentrate Like I said I'm finding methylphenidate helpful, I'm just torn between wanting to try a few solutions to find the best, and staying on methylphenidate because I'm lucky to have found something that works at all with no side effects
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Post by marionk on Jul 23, 2017 7:37:27 GMT
Thanks my knowledge is very 'patchy', but I do like to be sure of my facts, and I always like to know why. Dex is licensed (but my specialist would not approve it for me), lisdex isn't licenced, but some people on here have been prescribed it, ttbomkb as adults. Mph was ok, (though bloody brilliant compared to the antidepressants and c*** I've had over the years!) but it wasn't as effective as I had hoped, so I tried atomoxetine, which was awful (for me, everyone is different). When the psych refused to try me on dex or anything else, I asked to go back on mph. He was surprised and said "But you said it didn't help." I said it did help a bit, just not as much as I had hoped and not my memory. It helped with my anxiety, sleep and mood, and he re-prescribed it for me. I was a little worried about dropping it again, when I found that protein helped even more, with absolutely no possibility of undetected side effects, but I have been told that it will be ok to get it again if I find I need it again. I will probably take it again while I am abroad, as I did not manage to keep up my protein intake adequately while I was there last time. I have over a month's supply in reserve still though, so I will use that this time and if it helps (I expect it will) I will ask for a month's supply next time. I hope to stay a bit longer this time (three or four weeks), and hopefully have time to see a doctor, and maybe (fingers crossed!) get to try modafinil without having to go to the dark side of the web!
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Deleted
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Post by Deleted on Jul 23, 2017 13:55:44 GMT
Are you sure Elvanse isn't licensed for adults?
I'm not sure how to, authoritatively, check? MHRA, perhaps?
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Post by vagueandrandom on Jul 23, 2017 21:15:23 GMT
I'm pretty sure Elvanse Adult (lisdexamphetamine) is the only med actually licensed for adults.
The rest are only licensed for children.
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Post by marionk on Jul 25, 2017 9:42:08 GMT
NICE is a nightmare to find anything on, and unless I can find those same pages again, I can't be 100% sure if mph, atomoxetine and dex are licensed for adults or just recommended. Similarly this link implies that mph, atomoxetine and dex are licensed for ADHD in children, but doesn't actually say so, and doesn't mention lisdex or guanfacine at all. www.nice.org.uk/guidance/ta98/chapter/3-the-technologyThis link clearly states that lisdex was licensed for children as of 2013 www.nice.org.uk/advice/esnm19/chapter/Key-points-from-the-evidenceMore relevantly, as an update, it says that lisdex is available for adults as of 2015. Woohoo! Unfortunately my psych won't prescribe that for me either, I can't remember what reason he gave, I can't believe he was unaware of this though. However this:- www.nice.org.uk/guidance/cg72/chapter/Recommendations#treatment-of-adults-with-adhdis the official guidance for treatment of ADHD in adults, and says what I have read elsewhere, that mph is to be tried first, followed by atomoxetine or dex if mph is not effective. Sadly there is no mention of the update. I have just remembered, there is another official source of info for what drugs are licensed for what but I can't remember the site name right now, and I've spent too long on the computer already this morning. Hopefully I'll find it later today and post it, but for now, I have to go.
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