eva
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Post by eva on May 23, 2021 14:07:35 GMT
Hi all, recently diagnosed 46 year old woman. Struggled whole life, have mananaged somehow to just about maintain a career, have a family and sustain a long term marriage. Husband brilliant organiser. I know its early days but I'm on day 3 of 18mg of methylphenidate and I'm all over the place. Most worrying are bouts of almost manic like behaviour, pulling stuff out cupboards while things still not put away upstairs from yesterday's session, mind racing, not sticking to lists. It's like ahdh symptoms worsened. Was shaking and 'speedy' 2 hours after taking. Shouted at whole family in fairly uncontrolled way. Feel better now like I've come down, although tired, but know in an hour or so ill feel it creeping up my arm again and then shaky. Totally unfocused, and weepy. Just forgot to put a chicken in the oven 3 times in a row there. Heartily dissapointed that's its not a light switch for me as I kind of hoped for but now more worried that its making me worse. Should I contact my psychiatrist? Any words of advice, encouragement? Thank all, Eva
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Post by Emilyjane1978 on May 24, 2021 12:38:31 GMT
Hello
I wanted to reply to your message as I too have recently started to take methylphenidate, 30mg daily. I am 43 yo. I reacted in a very similar way to yourself. I was very manic, rushing around and talking quickly, almost like symptoms had worsened? I only took it for about 5 days as it seemed to do nothing at all. Have you taken anything other than methylphenidate? My psychiatrist said they will trial me on something else. It's very difficult as I was so hoping for a marked difference,😔
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Post by Eva123 on May 24, 2021 20:41:58 GMT
Hi Emily Jane. Thank you so much for your reply. I'm finding this forum really overwhelming so its nice to make contact with another human being. it just feels like so many people struggling franticly but not a lot of answers. I guess that's just he way of ADHD - It's a bit like being Alice down the rabbit hole! Interesting to hear your reaction too. I wonder if you need to get a lower dose? Why did you get started on 30mg - I though the protocol was 18mg then work up? I'm not even sure I want to take it again tomorrow as I have to work and I was a mess on a zoom call today. I feel like I'm getting a big blast after an hour of taking and I'm 'speeding' for 2 hours, feeling like i could take on anything and then I come down in stages and realise that I have totally over estimated and over committed. Bit embarrassing. Stuff I was really trying to get away from because I then become overwhelmed. I'm finding I want to eat as well even in the manic high bit like I'm burning through calories or something. I have disordered eating and although I'm definitely feeling more in control and not making myself ill by stuffing everything into my face I'm still craving food. Very strange. In general I just feel weird all day and then exhausted later (like I've done drugs) and then fine again in the morning. It really is a bit of a dream state, just not that nice a dream. Its 9 at night right now and I still feel weird. Took my little pill at 9am. My heads itchy a lot too. I'm really trying to find the positives and stick it out but its all bit too much. I don't feel I'm that in control which is really unsettling. Don't think I want to drive at all. Its making me doubt I even have ADHD - the only hope I'm holding onto is that this is not the right drug for me for some reason because surely even a non ADHD persons appetite would be suppressed by methylphenidate?! How are you feeling about it all? Its such a let down after these long journeys isn't it - the promise on the horizon - like finally, finally finding the holy grail only to discover its actually only an old out of date packet of fig rolls. I try to keep my sense of humour. Anyway let me know how you are getting on and vice versa. Try and stay positive. Eva x
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Post by Eva123 on May 24, 2021 20:43:03 GMT
Hi Emily Jane. Thank you so much for your reply. I'm finding this forum really overwhelming so its nice to make contact with another human being. it just feels like so many people struggling franticly but not a lot of answers. I guess that's just he way of ADHD - It's a bit like being Alice down the rabbit hole! Interesting to hear your reaction too. I wonder if you need to get a lower dose? Why did you get started on 30mg - I though the protocol was 18mg then work up? I'm not even sure I want to take it again tomorrow as I have to work and I was a mess on a zoom call today. I feel like I'm getting a big blast after an hour of taking and I'm 'speeding' for 2 hours, feeling like i could take on anything and then I come down in stages and realise that I have totally over estimated and over committed. Bit embarrassing. Stuff I was really trying to get away from because I then become overwhelmed. I'm finding I want to eat as well even in the manic high bit like I'm burning through calories or something. I have disordered eating and although I'm definitely feeling more in control and not making myself ill by stuffing everything into my face I'm still craving food. Very strange. In general I just feel weird all day and then exhausted later (like I've done drugs) and then fine again in the morning. It really is a bit of a dream state, just not that nice a dream. Its 9 at night right now and I still feel weird. Took my little pill at 9am. My heads itchy a lot too. I'm really trying to find the positives and stick it out but its all bit too much. I don't feel I'm that in control which is really unsettling. Don't think I want to drive at all. Its making me doubt I even have ADHD - the only hope I'm holding onto is that this is not the right drug for me for some reason because surely even a non ADHD persons appetite would be suppressed by methylphenidate?! How are you feeling about it all? Its such a let down after these long journeys isn't it - the promise on the horizon - like finally, finally finding the holy grail only to discover its actually only an old out of date packet of fig rolls. I try to keep my sense of humour. Anyway let me know how you are getting on and vice versa. Try and stay positive. Eva x
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Post by Eva123 on May 24, 2021 20:46:17 GMT
Hi Emily Jane. Thank you so much for your reply. I'm finding this forum really overwhelming so its nice to make contact with another human being. it just feels like so many people struggling franticly but not a lot of answers. I guess that's just he way of ADHD - It's a bit like being Alice down the rabbit hole! Interesting to hear your reaction too. I wonder if you need to get a lower dose? Why did you get started on 30mg - I though the protocol was 18mg then work up? I'm not even sure I want to take it again tomorrow as I have to work and I was a mess on a zoom call today. I feel like I'm getting a big blast after an hour of taking and I'm 'speeding' for 2 hours, feeling like i could take on anything and then I come down in stages and realise that I have totally over estimated and over committed. Bit embarrassing. Stuff I was really trying to get away from because I then become overwhelmed. I'm finding I want to eat as well even in the manic high bit like I'm burning through calories or something. I have disordered eating and although I'm definitely feeling more in control and not making myself ill by stuffing everything into my face I'm still craving food. Very strange. In general I just feel weird all day and then exhausted later (like I've done drugs) and then fine again in the morning. It really is a bit of a dream state, just not that nice a dream. Its 9 at night right now and I still feel weird. Took my little pill at 9am. My heads itchy a lot too. I'm really trying to find the positives and stick it out but its all bit too much. I don't feel I'm that in control which is really unsettling. Don't think I want to drive at all. Its making me doubt I even have ADHD - the only hope I'm holding onto is that this is not the right drug for me for some reason because surely even a non ADHD persons appetite would be suppressed by methylphenidate?! How are you feeling about it all? Its such a let down after these long journeys isn't it - the promise on the horizon - like finally, finally finding the holy grail only to discover its actually only an old out of date packet of fig rolls. I try to keep my sense of humour. Anyway let me know how you are getting on and vice versa. Try and stay positive. Eva x
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eva
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Post by eva on May 24, 2021 21:16:28 GMT
Sorry about the repeat posting - wasn't sure it had gone and I don't know how to delete. X
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eva
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Post by eva on May 24, 2021 21:18:38 GMT
I also forgot to say that at times dueing the day I feel real anger and upset then it goes away. Rollercoaster of emotions- just as per normal except more extreme.
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Post by ADHD in denial on May 24, 2021 22:20:26 GMT
Hi Eva,
I’m on methylphenidate 3 times a day. I was taking 1 5mg tab in the morning 1/2 a tab midway and then another 1/2 late afternoon. I’m super sensitive to drugs so I can tell if I take 1/2 a pill more or less In a day. Don’t know what your tabs are like is it possible to take 1/2? When I took one tab of Elvanse, I was aggressive and then high on it, was like I’d taken a street drug and didn’t feel ‘normal until 2am’ First time I took 5mg methylphenidate I was really irritable and paranoid during the come down, so i took 1/2 tabs for a couple of weeks and then tried a whole tab and it was fine no come down. I’m actually thinking of weening myself off my tabs as not sure they do much. Unfortunately the day I forgot my morning pill and decided not to bother with them I ended up with horrendous night time anxiety and couldn’t sleep all night. My Pysche takes this as an indication the pills are working. I think it’s more like I’m becoming addicted to them as I didn’t have that problem before I took them. Love your stale biscuit analogy btw can totally relate. I’m 42 diagnosed a few months back. I thought I’d finally hit the jackpot and now I’m totally doubting my diagnosis and still think that my anxiety issues which I’ve had for over 20 years and have been majorly exacerbated due to personal reasons and the pandemic over the past few years are to blame. Ha just as I thought things were looking up with new part time job and feeling better than I had done in ages, my husbands mum dies and he’s made redundant in the same week. Seriously! So all my lovely ocd like internet checking and obsessing has come back ten fold. Gotta love life! Anyways sorry for hi jacking your post. If these meds don’t work, there’s still others to try. Wishing you all the luck in the world!
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eva
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Post by eva on May 24, 2021 23:44:13 GMT
Hi adhd in denial! Really lovely to hear from you too. I'm so sorry about your recent events. It just seems all a bit much to be expected to handle a huge pandemic AND have to deal with life upsets and dramas as well. Throw in adhd (and the traumatic journey to get to diagnosis) plus whatever else we have, and its a right old explosive cocktail. It's strange because we 3 are in our 40's. Are you guys peri menopausal because I am. Its one of the reasons I think I couldn't cope anymore this year and a very common time women are diagnosed for the first time apparently. I have always been super sensitive to drugs all my life also so you may be right. I had wondered about getting a little pill cutting tool and micro dosing to see if its any different. Just can't handle that big dunt. Madness. I also just generally feel really terrible though. Its 12.30 at night and I still feel weird. I have taken magic mushrooms away in the long, long past and I swear I feel like I would feel after a trip. Still quite trippy, eyesight funny, strange tense body sensations,jittery tummy and just absolutely,totally wiped out and done. It's so incredible for me to think that some people get nothing from this drug. Our minds are amazing aren't they? I emailed my doc tonight as I just don't want to take it anymore so I'll wait and hear back soon hopefully but I may try a tiny dose sometime just to see. Right now I'm just so relieved not to take them tomorrow with such a busy day at work ahead. Please keep in touch and let us know how you are getting on. Whatever happens at least its great to know we are not on or own with our experiences. Take care, Eva x
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Post by ADHD denial on May 28, 2021 21:52:17 GMT
Hi Eva, How’s things going? I think a lot of people have ended up getting diagnosed during the pandemic. Funny you should say about Peri Menopause. I thought that was happening to me last year, I now think it was stress of the pandemic and health anxiety that was causing the short cycles, as I’ve been tracking and they seem to coincide with stressful events, finding a lump next to my boob before Xmas ADHD diagnosis a few months back. Early days, however I think the pills might be helping regulate my cycle. I know there is a link between hormones and chemicals in the brain including dopamine. I read a research paper where women were successfully treated for peri-menopausal symptoms such as memory loss and concentration problems with stimulant medication. I’ve given up trying to get off the drugs after 2 sleepless night cutting back by half a tab per day and increased night time anxiety. It’s all on the backburner until my mother in laws in the ground. Stupid Covid means that’s not happening for another few weeks yet. I need to be all there to support hubby. I’m impressed you managed a career and family. I managed neither, sporadic work in film & tv a lot of unemployment and lots of temp work. Basically it was stopping the IVF supposedly for a break to sort my head out and the the pandemic hitting that sent me into the worst depression I’ve ever experienced, so I was forced to get some help and many stressful months later, ‘nothings ever simple’ ended up with the ADHD diagnosis. Anways did you manage to get advice from your Dr? It’s great to hear from other women my age, hope we all get sorted, I think the diagnosis is still real headf**k for me at the moment.
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Post by Eva123 on May 30, 2021 22:29:47 GMT
Hi in denial, good to hear from you. So I've switched to Elvanse 20mg. Lasted 4 days on methylphenidate and had a mini break down in the middle of the night. I think I was exhausted but it was horrible. Anyway only day 3 tomorrow of Elvanse but so far much milder. Still no light switch but feel I might be at least able to go these a good bash and see what's occurring. Early days though. Still feel very weird on them (self conscious and uptight at times with moment of clarity at times) then at times and come crashing down after 7 hours and need to sleep! So let's see what happens this week. Hope your situation is moving on and you are getting some sleep. Take care Eva x
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Post by londonwillow on Jun 3, 2021 0:38:21 GMT
Hi all, I hope you don’t mind me joining the conversation. I am 42 and was diagnosed on 24/5 and prescribed elvanse. My therapist is aware I used amphetamine recreationally in the past. This was 20 odd years ago but, conveniently, I liked the clarity it gave me. I am only on day 4 but my children are away this week so I thought it would be a good time to start in the hope I’d be more stable by the time they returned home. The thing is, I have a lot of major stress in my life and not currently working. I am, however, supposed to be having regular work coach appointments. While I’m happy to do this, I cannot seriously be expected to be ‘looking for work’ in my current state. Today, I called the docs and asked if it would be appropriate to get ‘signed off’ while I try and get used to these new meds. I am also on fluoxetine and while it has been helping, my mental health took a real dive toward the end of 2019 and I ended up getting sacked over it. I am going to tribunal under disability discrimination but while all my records show my history of MH issues and OH stated that in their opinion I am covered under Equality Act 2010, they are disputing it saying as it’s just her opinion, they don’t accept I have a disability. Unfortunately, my GP has said that they cannot comment on my status and that is job of OH. So I’m kinda stuck between a rock and a hard place. The diagnosis has been a relief in many ways as this whole business (which understandably would have anyone struggling) has had a huge impact on me. Anyway, the only thought I had to share with OP is pls consider speaking to your doc and getting signed off if this is what you are experiencing. Also, refer yourself to OH to discuss so that adjustments can be made. From my own experience, it is important to have all the support you can find. My children will be returning next week and I’m honestly terrified of how I will cope while adjusting to the meds. Thankfully, I do have older children who can help and my youngest is a very independent 9yo so I’m trying to keep reminding myself of that. I’m keeping a log of my side effects as I like to have as much info as possible. It was searching for such info that led me to this forum and I hope to be able to offer support as and when needed. Good luck to us all with our new chapter x
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Post by Eva 123 on Jun 9, 2021 10:02:06 GMT
Hi London willow, I'm rely sorry took so long time to get back to you but iys been s rollercoaster. I've posted s new thread about drugs not working. Anyway, how are you getting on with your titration? I hope it's going well for you. Mine not so much. Just got s feeling meds aren't going to work oit for me so God knows. Such a letdown after finally finding my tribe and then not being able to part of the 'inner circle' lol. Story of my life!' Let me know how you are doing. Onwards and upwards, Evaxxxx
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Post by londonwillow on Jun 14, 2021 19:45:57 GMT
Not doing well in elvanse. Being switched to Methylphenidate and a bit worried but if I don’t get on, I will be taken off it in four weeks. She also wants me to be referred for long term counselling. I have no idea where in my life that will fit but I know I need it. I’m in a strange limbo situation and it’s probably affecting me more than I’m admitting but slowly trying to. It’s a challenge.
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Post by Eva123 on Jun 27, 2021 1:08:08 GMT
Hey guys, how you doing? I'm having a break off meds. Was only on for a month on and off but felt horrible. Couldn't face summer holidays with kids going through titration. Too much of an unknown quantity. Too erratic to trust myself driving etc. Maybe if the meds feel like street drugs to me I don't have adhd? Just got fed up with the whole thing and want to switch off from all the questions for a bit. Struggling at moment but really trying to keep on top of things as I know how easily it all goes to shit. Wish me luck. I'll check in sometimes. Really hope you guys are doing well. With love Eva xxx
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Post by Eva123 on Jun 27, 2021 1:10:21 GMT
London willow, how are you? Did you get councilling. My next step is to find an ADHD coach. Xx
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Post by londonwillow on Jun 27, 2021 7:00:59 GMT
Hi Eva et al I am finding the methylphenidate surprisingly okay. Every time I read through info, every sign is saying I shouldn’t be on it but I’m aware of the issues that could arise and keeping an eye on things as well as possible. Waiting for new glasses as o need bifocals or two separate ones (opted for separate) and started new job. But I do 12.5 hours and taking meds at 6am, by 4pm I’m crashing and still have four hours to go. NGL, it’s kinda rough and quite triggering given why I was dismissed from my previous role. My team are supportive but so we’re my last. It is management I’m terrified of. Still, I am a week in as of today and start higher dose tomorrow and so will see if it’s any better although not working again til Thursday after today. I have a follow up with IAPT tomorrow as they want more info but the methylphenidate and fluoxetine is working well together. So much better than the elvanse did for me x How is everyone else doing? Xx
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Post by londonwillow on Jun 27, 2021 7:02:53 GMT
Forgot to say, I do get occasional headaches with this it it’s easily sorted with OTC painkillers. Dehydration not so bad. Some nausea but less so than I get with my SAD so I can cope for now. This May all be a very different story in winter. I am slightly concerned about possible tics but I may just be over thinking that. I’m gonna speak to my brother and get him to keep an eye for me
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Post by ADHD in Denial on Jun 27, 2021 18:26:01 GMT
Hi Eva & Willow,
Good to here the drugs seem to be working london-Willow, very positive news, be interesting to here what happens as you up the dosage. Rooting for you! ADHD coaching sounds really positive Eva please post here how you find it. I’m assuming it’s something you have to pay for and not available on NHS. Maybe it’s just because it’s on my phone it’s a shame you can’t see the rest of the thread with your reply as I can’t remember what people wrote. Anyways update on my life. I’m going to try getting off my methylphenidate again soon now my MIL funeral is over thankgod! The social anxiety caused by all of the people at the wake was 1000 x more stressful than supporting my husband. The following day was my step daughter’s Hen do. I turned up only to be greeted by hubby’s X Wife, never met her before. Yet another social knightmare, the only positive about not being able to drink through it was I had an excuse to leave early. Fingers crossed things are going to calm down for hubby an me now and hopefully be able to see what is actually happening with the Pills I’m on when not under extreme stress. Want to get off them however, fearful incase they are actually working a bit for my mood and I won’t know until I come off them and then have to start all over again. Pretty sure don’t do anything for executive functioning , plus It’s really annoying having to take them 3 times a day. I swear at the alarm when I’m in the middle of doing something. Their one extra thing to remember when I’m leaving the house on top of the bloody masks. Sometimes both my husband and I are half way down the street and neither of us have masks with us 😂! Blind leading the blind. I wish I was one of those people who could just forget a tablet and it have no real effect. When first started taking I could happily miss the last dose if I wanted to have a couple of drinks. Not anymore! Also concerned about the night time anxiety and insomnia that ensues when I try to stop taking them. Anyways sorry to keep rambling on. Wishing everyone a productive and happy week x
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Post by londonwillow on Jun 30, 2021 23:26:43 GMT
I was started on 18mg and now taking 36mg. There is a 27mg but doc seemed to think this was the way for me. Annoyingly, I took my first gig dose on Monday. Tuesday I skipped as I’d left my meds at home while working away. Got home that night only to test positive for covid. So today (Wednesday) is the first time I’ve taken the high dose with a view to having another next day. Lolz. But I’m feeling quite rough and I actually think the meds have helped certain thought process feel clearer than they would given how ill I have been. It’s all sucks big hairy balls right now as it’s me, my parents, and my two small children (tweens) my eldest at uni is also positive and so not coming home yet but also feeling lonely as having to live by herself and couldn’t even say farewell to all her peers who are now finished with uni. (She has a sabbatical role next year) the worry over all the stuff going on would probably have sent me over the edge but I am kind of able to think through all the stressors without feeling completely overwhelmed. Saying that, I’m not sure I’d manage having to take a tablet 3 times a day. Hopefully you will find something soon that works for you. The lisdexamfetine made my anxiety almost unbearable. I’m okay on the methylphenidate but my experience in a different Med has made me realise how important for something to be properly tailored to your needs rather than a generic solution.
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