Neurological conditions
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Has anyone got experience of coming off Adhd medication?

lostandconfused81lostandconfused81 Member Posts: 4 Listener
edited July 23 in Neurological conditions
Hello, 

im a woman in my 30s who has always been told ha suffered high level of anxiety since childhood that’s never resolved with therapy or medication. My gp has referred me on for an adhd assessment after I flagged a lot of boxes and he wanted me to be investigated. I’ve been told treatment would be medication but the medication would not be a permanent solution before moving onto therapy cbt to find ways to deal with it.

 Can anyone tell me their experiences of being on the medication for it then coming off to find ways to deal with it? I know someone who says she’s been told she can stay on the medication forever and take breaks at the weekend for recreational drug use but this doesn’t sound right to me and reading online and speaking to my own doctor and neurologist (I have epilepsy to) this sounds like she’s either Ben told wrong info or she’s lying, either way it sounded a bit strange to be told she can stay on a medication for the rest of her life and come off every weekend so I don’t have any real life experiences to go by 

any advice would be welcome 

Replies

  • Sonny5000Sonny5000 Member Posts: 18 Listener
    Have u read my experience that I am still experiencing? It shoukd be on the ADHD part as it explains that I am still trying to use my rights for a dual diagnosis rehab but I’m facing so much ignorance neglect it’s all absolutely appalling I have spent two years on my criteria which is now worse after I was officially diagnosed with severe adult adhd ICD10 F9 which means I have to self medicate and need a dual diagnosis rehab which they now have loads in the uk but none last year.I am still having a battle with titles who are saying that my funding should come from another title but there wrong as my extensive research on adult adhd rights in the UK state that high criteria such as myself is stilll being mistreated although I have had a Mind advocate write up a draft stating that I have rights to exercise them to go to craig castle who are a adhd clinic.A recent meeting with Pals after many of my complaints trying to get heard and using there own guidelines they are still not taking the funding seriously.I am 53 a registered carer and have all my official paperwork although it’s taken me four years so I have various titles of support like Scope and Mind but my life is literally on the line so tonight I have written to the parliament nhs service complaints as I have joined up all the legal dots.we are unfortunately still facing ignorance uneducated titles but on paper in the Nice guidelines it’s taken very seriously but not in real life so I’m still waiting for my rights to be reinstated as I will be another statistic where certain counties and titles need to read the newer rulings for adult adhd and I am an example of this ignorance so I’m hoping once I get the titles who can help me see there own rulings then I can hopefully be on the mend and help others.
  • Sonny5000Sonny5000 Member Posts: 18 Listener
    Just to add that I have to self medicate because once you researched all this about issues etc it says our brain transmitters are not the same and we feel more normal not high there’s a difference.You do things you do not want to do but until you get proper treatment where you are seen regularly and monitored as there many adhd meds out there now and every one is different so you mention recreational using which to me makes total sense but it may be worth researching your rights to get better treatment.
  • lostandconfused81lostandconfused81 Member Posts: 4 Listener
    Sonny5000 said:
    Just to add that I have to self medicate because once you researched all this about issues etc it says our brain transmitters are not the same and we feel more normal not high there’s a difference.You do things you do not want to do but until you get proper treatment where you are seen regularly and monitored as there many adhd meds out there now and every one is different so you mention recreational using which to me makes total sense but it may be worth researching your rights to get better treatment.

  • lostandconfused81lostandconfused81 Member Posts: 4 Listener
    Hiya thanks for your reply! I’m sorry to hear of your struggles and I hope getting the gov involved gets you some solutions. Unfortunately this friend is very reckless and I’m struggling to want to maintain the friendship, she has no intention of stopping the drug use and drinking whilst still on the medication and is responsible for being a carer - I don’t really want to be involved. I do understand the self medicating. I probably have been doing this but as soon as I start the meds I will no longer do this due to the risks fo my own health. I’ve found a lot of the advice I’ve been given is nonsense hence coming on here!

    habe you been given the option to medicate at all or totally fobbed off? 
  • Tori_ScopeTori_Scope Posts: 5,038

    Scope community team

    Hi @lostandconfused81 :) 
    I know someone who says she’s been told she can stay on the medication forever and take breaks at the weekend for recreational drug use but this doesn’t sound right to me and reading online and speaking to my own doctor and neurologist (I have epilepsy to) this sounds like she’s either Ben told wrong info or she’s lying
    I'd be very surprised if your friend had advised by a doctor that she could come off her prescribed medication at weekends to take recreational drugs. 

    That being said, I think it's the case that not everyone needs to take their ADHD medication every day. For example, some children with ADHD may only be told by their doctor to take the medication on school days. The following quote is from the NHS page on ADHD treatment:
    Some medicines need to be taken every day, but some can be taken just on school days. Treatment breaks are occasionally recommended to assess whether the medicine is still needed.
    Some people do find it helpful to stay on medication for long periods of time, but others don't. I've heard of some people with ADHD who've found going on medication for a shorter period of time really helpful, as it gave them some brain space to learn skills to help them manage their ADHD that they struggled to implement in their life before. It's good that they've mentioned the possibility of talking therapy to you. I'd definitely recommend sticking to what your doctor and neurologist have said to you. 

    I'd also suggest that it could be worth speaking to your doctor or neurologist about the self-medicating you've been doing as, as you say, you wouldn't want the combination of drugs to harm you. 

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  • lostandconfused81lostandconfused81 Member Posts: 4 Listener
    Hi Tori,

    I like a drink and have been told to cut down if I go down the medication route which I’m more than happy to do as I believe the drinking is my form of self help if that makes sense!

    yes I don’t believe the doc said that to her either. I spoke to this friend as I believed having someone on the same journey would be helpful but so far it has been discouraging. My own gp said the Same as you that I could take it for days I feel I need more focus (like exams) but I would like to stay on it then wean off with the help of therapy etc. 

    I’ve also been told it’s not something I can take for the rest of my life like the meds for my other condition which makes sense but this friend has been told she can take it for the rest of her life which has made me confused. I’m already very busy, is this true that we can stay on the meds forever ? My doctor said staying on it forever can mean the meds become less effective 
  • Sonny5000Sonny5000 Member Posts: 18 Listener
    I am talking from my extensive research in the uk where I have had to screenshot hundreds of rights that we have but are not being used.I now know that I have rights all along when I was having therapy for severe adult adhd for two years and when I look back on the letters it’s absolutely unbelievable the way iv been left untreated trying to palm me off to the local drug and alcohol CGL system where they are not educated enough to deal with a dual diagnosis condition which means we have to self medicate just to feel normal as thanks to scientific research in the US which is now coming over here and is in the adult adhd guidelines that it’s all in one condition hence my code of ICD10 F9 which should carry a lot of power in itself as that means self medicating due to being untreated but my local mental health team are acting ignorant uneducated over my life where I now am trying to prove that my life is on the line as I do not want to self medicate it has caused financial issues along with daily issues we have as it is along with my responsibilities of statemented mild caring duties and my age .So from further research they should have offered me a dual diagnosis rehab three years ago I have now put in a complaint to the ombudsman as iv contacted literally every one that can help make a difference but again it due to uneducated titles.It’s just so frustrating and crazy that my condition is now worse as there is no cure for adhd but it can be managed by the appropriate meds as there are so many more now.There are stimulating ones and non stimulating available and someone with my condition health and rights my rights have not been met I am having to send of proof of my rights to educate the titles and I’m still waiting! It’s the commissioners duty to look into my case and health three years ago to explore other options which is a dual diagnosis rehab as they have a duty of care and all my work has to reach a point of god forbid another statistic or they will finally actually read the rights the whole situation is beyond frustrating for myself and my family.I am now trying to prove all this after putting in a complaint against Pals who again did not want to take responsibility of communication and my health they have done me wrong and it’s every where that the ignorance is still happening so I will keep you posted.
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome to the community 

    My advice would be to follow the advice you have been given by professional people and ignore what your friend has said 

    Some people only hear what they want to hear and ignore what doesn't suit them 

    Good luck with the therapy 
  • Tori_ScopeTori_Scope Posts: 5,038

    Scope community team

    Yes, that does make sense @lostandconfused81 :) It's good to hear that you'll be cutting down on the alcohol. There's plenty of support out there to help you do this should you need it. 

    I suppose we don't know the full situation, but I hope that your friend is being open with her doctor about her drug usage.

    Some people do take it consistently every day, it just depends really. Did you share your view with your GP?

    My understanding is that many people can take ADHD medication for a long time without negative side effects so long as it's well managed and monitored by a doctor. That being said, you can build a tolerance to it, which could mean having to take higher doses and so on. I'm not a medical professional, but I think that's what your doctor may have meant by it becoming less effective.

    I'd encourage you to see how it goes, and make sure you keep in touch with your doctor. I'm sure you'll both agree a period of time you should try it for, before seeing how you cope without it with the help of other forms of therapy.

    You mentioned taking exams- are you in education at the moment? 
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