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Post by peytonfire on Jan 22, 2018 1:56:46 GMT
Hello fellow ADHDers,
I'm 27yo living in London. According to the psychiatrist, I've been undiagnosed because of being a girl without hyperactivity and being born in a developing country.
My ADHD diagnosis story began when I started dating my current boyfriend, who pointed out to me that I might have ADHD symptoms, since he was going through the diagnosis process himself. Long story short, I've been fortunate and persistent enough to convince my private insurance to pay for private assessment, which confirmed that I have the inattentative type ADHD. Shortly after getting all the blood tests done, the psychiatrist put me on trial with Elvanse. I've done a week on 30mg, which made a difference, I was calmer and much more inclined to do things. Then with the 50mg for two weeks I noticed a bit difference, and felt excited about finally having the will to get things done. I've experienced some of the usual side effects, like dry mouth and reduced appetite but nothing major.
Shortly after coming back to London from holidays, I've struggled with time difference, going to bed on time and waking up, as well as taking the meds on time in the morning. When I saw the doctor for a follow up appointment, he suggest I continue with Elvanse 50mg for a month and take them early in the morning and the go back to bed, so I could fight my insomnia problem. It's been two weeks since then, and honestly I don't think Elvanse is working for me. I still can't go to bed before 2-3-4am, I have an alarm at 8 to take the pill and then go back to sleep, but could hardly wake up before 10-11 sometimes. I stopped all caffeine since that would have made me worse. But the worst part is I don't feel much of positive difference. Actually some of the symptoms are worse. For example, while I was working, I got distracted and hyper focused on researching something, which is completely unrelated to work. I've spent 2h just doing that barely noticing time, forgot to eat the whole day, didn't even drink water. It felt a bit like an obsession. At the end of the day, I only felt miserable that I haven't experienced any progress. It just frustrating, not knowing if the drugs are working or not and what to do.
My question what is your experience with Elvance? Should give it more time? Would an increased dose (50mg+, 70 maybe?) help? Or should I ask the psychiatrist for another drug?
My only issue with that is as I'm currently on private route, it costs me 300£ (£200 appointment +£100 Elvanse) each month to continue this. (Insurance Bupa does no longer pay, cause they don't cover ADHD cause being chronic condition, ridiculous I know!) I really can't afford it going forward. Does anyone has experience with switching from private to NHS after diagnosis?
Also does anyone living in Southwark, London, can suggest an ADHD friendly GP? I don't believe my current GP/practice would be supportive of shared care or anything really. It was a massive struggle just to get the private referral letter.... I'm also considering asking for CBT as I've heard it would help a lot, but don't know what to do, as private is not an option.
Many thanks in advance for your help! And apologies for the super long post.
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Post by marionk on Jan 23, 2018 11:43:16 GMT
hi there, and welcome to the forums It seems like they're going through a super quiet period just lately. Sorry to hear that Elvanse isn't working as well as you need, but medication often doesn't help, and there's not much choice either. Mph was only minimal help for me, and I never even got to try dex or lisdex. ADHD and sleep disturbances are frequently combined, and I've just found out why. In all these last 20 odd years that I've been going to the docs with various problems, none, not even the private ADHD specialist I saw a couple of years ago, nor the specialist at . . . err a well known sleep specialist hospital, ever linked any of them to a food allergy, even though the information is "out there" now, and I even said it was weird how just a pot of yogurt practically knocked me out. He wanted more acute symptoms before he would even consider the possibility of a food allergy. I don't know that sorting out the food allergy will help with your ADHD itself, but it will almost certainly help with your sleep issues and fatigue. There are many websites that make out that changing your diet will cure ADHD but I'm not convinced, some of them are seriously dodgy. I do think it affects how an ADHD child develops though, and you are still young, so maybe it's not too late. As you have ADHD, and it is known that there is a link between casein intolerance/sensitivity/allergy and ADHD and Autism, it's probably cow's milk dairy that's causing the fatigue issues, but there might be other 'triggers'. (Gluten is a common one, and is also associated with ADHD, gluten and casein are quite similar apparently.) Many doctors in the US are now routinely suggesting anyone with a whiff of trouble cut out both. I won't bore you here with details of my personal investigations, but as the effects are so slow to manifest or clear up, I am considering shelling out for some fairly comprehensive tests, only problem is, I'm skint. Now that I've confirmed casein (by elimination and re-introduction) as a major culprit of one of my more visible issues, as recommended by GP, I am going to go back to him to see if this puts me on the right path for more specialist testing. (Rather than just gluten/celiac test.)
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curlylucy
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Post by curlylucy on Jan 24, 2018 19:36:43 GMT
Hi there
Are you eating before you take your elvanse? When I was prescribed it, I was advised to take it with or just after food, I can't remember why, but I'm sure it was something to do with it helping the active part (dex) split off from the other part of the compound.
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arte
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Post by arte on Jan 24, 2018 22:48:54 GMT
Hi! I can't help with the GP recommendation since I'm new to London myself.
I can see why the doctor wants you to continue for another month. To be honest, I don't even know why they increased the dosage after only 1 week, especially since you were doing pretty well.
When I first started taking Concerta (different acting stim) it took about a month for things to "settle", even though I noticed considerable improvements from day one. But the anxiety, headaches etc. calmed down after about a month.
Elvanse, unlike Concerta, doesn't act immediately. It needs two hours to be metabolised by your body, so that's probably why you wake up at 10 after taking it at 8 (I'm not a doctor, mind). The up side is that the effects last for 14 hours, so it should still be in effect if you're trying to go to sleep at 10 pm.
One thing that really helped me get to sleep (and stay asleep) was working out every day. I know, I know, everyone recommends this and it's annoying. When I started taking this medication it became a lot easier though, both in terms of energy and motivation. So give it another try, maybe?
Ultimately you may need to try different dosages and different meds until you hit the sweet spot. I recommend reading about the differences between them and their other uses. Elvanse/vyvanse is used to treat binge eating disorders, so that's where the reduced appetite comes from. Concerta is used to treat narcolepsy, so it might help you more with sleep issues (not a guarantee though).
Unfortunately, only you know how long you can keep paying those ridiculous prices. Can you believe a month's supply of Concerta costs less than 20 pounds in my country? And it wasn't subsidised at all. Sure, that was still a big chunk of my ~300 pound salary back there, but it tells you how much they're producing it for....
I say keep fighting, keep trying to find a gp who will listen. Good luck!
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Post by Wendy on Sept 28, 2018 9:49:59 GMT
hi there, and welcome to the forums It seems like they're going through a super quiet period just lately. Sorry to hear that Elvanse isn't working as well as you need, but medication often doesn't help, and there's not much choice either. Mph was only minimal help for me, and I never even got to try dex or lisdex. ADHD and sleep disturbances are frequently combined, and I've just found out why. In all these last 20 odd years that I've been going to the docs with various problems, none, not even the private ADHD specialist I saw a couple of years ago, nor the specialist at . . . err a well known sleep specialist hospital, ever linked any of them to a food allergy, even though the information is "out there" now, and I even said it was weird how just a pot of yogurt practically knocked me out. He wanted more acute symptoms before he would even consider the possibility of a food allergy. I don't know that sorting out the food allergy will help with your ADHD itself, but it will almost certainly help with your sleep issues and fatigue. There are many websites that make out that changing your diet will cure ADHD but I'm not convinced, some of them are seriously dodgy. I do think it affects how an ADHD child develops though, and you are still young, so maybe it's not too late. As you have ADHD, and it is known that there is a link between casein intolerance/sensitivity/allergy and ADHD and Autism, it's probably cow's milk dairy that's causing the fatigue issues, but there might be other 'triggers'. (Gluten is a common one, and is also associated with ADHD, gluten and casein are quite similar apparently.) Many doctors in the US are now routinely suggesting anyone with a whiff of trouble cut out both. I won't bore you here with details of my personal investigations, but as the effects are so slow to manifest or clear up, I am considering shelling out for some fairly comprehensive tests, only problem is, I'm skint. Now that I've confirmed casein (by elimination and re-introduction) as a major culprit of one of my more visible issues, as recommended by GP, I am going to go back to him to see if this puts me on the right path for more specialist testing. (Rather than just gluten/celiac test.)
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Post by Wendy on Sept 28, 2018 9:52:01 GMT
Re changing from private to NHS diagnosis. The NHS will recognize your private diagnosis, no further assessment should be required. How are you doing now?
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Post by marionk on Oct 20, 2018 16:43:38 GMT
Who me? I'm doing much better since cutting out dairy and gluten. Doc said the tests were rather hit and miss, often giving false positives and false negatives (waste of time/money) so I haven't bothered.
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murtster
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Post by murtster on Oct 22, 2018 9:16:19 GMT
Work on your ‘sleep hygiene’ also, if you can, have a protein-rich breakfast with your elvanse, and avoid acidic foods like orange juice. I find it I take my 50mg after 10am, my sleep will be disturbed. Exercise is important to burn off some of the restlessness. If your private psychiatrist considers you as stable on your current dosage, they should be able to write a letter to your current NHS GP who should be agreeable to taking over the prescribing. With a prepay prescription card you can get a years prescription cover for £104. The GP can only prescribe one month at a time, and will need to monitor your blood pressure - your BP will increase on Elvanse but they need to check that it’s nof excessive. The GPmay want you to consult with th psychiatrist once a year. In my experience, the level of awareness in the NHS has increased in recent years, after all, statistically, one in 20 have ADHD, so it is pretty common even if people don’t talk too openly about it.
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Deleted
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Post by Deleted on Oct 22, 2018 9:44:35 GMT
If you're worried about the costs, that feeling of anxiety may be negating the benefits of the tablets.
Mention this to your psych and see what he/she suggests?
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Deleted
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Post by Deleted on Oct 22, 2018 9:46:12 GMT
...and if Bupa doesn't cover ADHD I would cancel that shit ASAP.
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reg
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Post by reg on Oct 22, 2018 9:55:35 GMT
Work on your ‘sleep hygiene’ also, if you can, have a protein-rich breakfast with your elvanse, and avoid acidic foods like orange juice. I find it I take my 50mg after 10am, my sleep will be disturbed. Exercise is important to burn off some of the restlessness. If your private psychiatrist considers you as stable on your current dosage, they should be able to write a letter to your current NHS GP who should be agreeable to taking over the prescribing. With a prepay prescription card you can get a years prescription cover for £104.The GP can only prescribe one month at a time, and will need to monitor your blood pressure - your BP will increase on Elvanse but they need to check that it’s nof excessive. The GPmay want you to consult with th psychiatrist once a year. In my experience, the level of awareness in the NHS has increased in recent years, after all, statistically, one in 20 have ADHD, so it is pretty common even if people don’t talk too openly about it. Why have i never heard of this? I can save a lot of money on prescriptions using a prepay card. Thank you for highlighting it.
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Switching from private to NHS
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Post by Switching from private to NHS on Jan 4, 2019 0:32:03 GMT
Hello I just wanted to let you know that there is hope for switching from private to NHS. I done it last year after being told the waiting list was 3-7 years in Liverpool, I went private for a diagnosis and a prescription, then battled my GP to honour my repeat prescription. It took a while and I had to make my case by writing a 3 page letter of how disappointed I was that I had to go private using my student loans to pay for my diagnostic assessment and prescription, I also explained how not having the medication would effect my mental health and also my studies. They agreed once I asked for a written reply with their answer.
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