Help with ADHD meds

[spephspeph]

Hello all,

(I just posted this in the drugs and the media forum by mistake, hope it's okay to put it here!)

not sure if this is the correct forum, please reassign it if it's not.

I have ADHD, and I was diagnosed and started medication in January of this year.
I take Methylphenidate, and gradually increased the dose until I found a dose that worked for me.

Since March/April time, I have been taking Concerta XL 36mg, and I'm also given a box of 30 5mg instant release Methylphenidate (the brand is Medikinet, I think).

The past month or two, I've notice they've not been as effective as they were, with my mind wondering again, feelings of restlessness coming back, and generally slipping back to how I used to be. I've found myself using more of the 5mg top up tablets to keep myself going.
However, with an increased dose, I've noticed some negative effects, namely a more suppressed appetite, more anxiety, and my heart goes a bit too fast when I get anxious. (I sleep fine however).

When I saw my GP on Monday, he decided to increase my Concerta XL dose to 54mg (1x36mg and 1x18mg), in addition to the 5mg top up tablets to see whether that helps. I'm due to start this new regime tomorrow, but I'm worried that the negative effects will increase alongside this.
I guess it's weighing out the positives against the negatives here.

I've asked to see the Psychiatrist again (he/she is the one who decides whether I can change my meds, and to what).

What I'm really asking, is can this be made better, or is this something I have to learn to live with?
Has anyone else been in this situation, and if so, what was the outcome?


For reference, I am in the UK, and this is under the NHS. I've checked, and the following medications are licensed:
Methylphenidate (in various forms, Instant release, Concerta XL, Equasym & Medikinet XR)
Atomoxetine (as Strattera)
Dexamfetamine
Lisdexamfetamine (As Elvanse)


Any help, advice, suggestions or thoughts are appreciated here guys.

Happy Xmas. x

 

[Wesos]

Hi

I’m aware that my answer is 10 years late , I hope you found a good medication form for yourself, if you want make an answer to this message and tell me about if and how you’re handling ADHD today, what change since you created the thread 10 year ago.

I’m still answering, ‘cause maybe it could help others with the same problem and who knows, maybe even you .

Sometimes i will put some asterisks (*) at the end of a word/phrase, they refer to some clarifications which you can find at the end of the message. Those are clarifications, additional information which maybe not everyone needs or is interested to.

I had the same issue with Ritalin LA*, after a couple of weeks it wasn’t as effective as in the beginning, so I increase the dose every couple of weeks, sometimes after a month.
After this I also some abuse issues**, by oral and insufflated routes, which got really bad.

After that I requested a substance called lisdexamphetamine (Elvanse, Vyvanse, …) which you too reference at the end and the one I would suggest to everybody for following reasons:
- It peaks between 3.5-4.5 hours and its acting length is between 12-14 hours, but personally even after the main effect has finished I still feel some positive effects ‘til I go to sleep.
- It has a softer and more gradual effect than methylphenidate formulations, which I feel great because the effects are more stable and for a long time*** (8-10 hours, then between 10-14 lower but still relevant).

- Not relevant for everybody but it is highly less abuse risky. Lisdexamphetamine is dexamphetamine bond with L-lysine, so to be metabolised back to dexamphetamine it has to be digested, which makes sniffing/injecting/plugging and every other ROA useless.

- I experienced almost no side effects, with methylphenidate I had some.
An important example is that the heart beat was the same as while unmedicated or sometimes a little bit higher, even mixed with caffeine and nicotine, With methylphenidate (at rest) I went from my usual (80-100 bpm) to (110-130 bpm) and when i drank caffeinated drink (140-170 bpm) still at rest, which is crazy.

- Also not relevant to everybody. I have a relatively light form of Tourette syndrome with normal state voice and head/face tics and occasionally tic attacks which can be short (10-30 minutes) or long (hours, but those happen hardly ever) tics can occur every second.
Considering this stimulants are contraindicated by the country I live in as many others too, despite newer studies say is is safe or even therapeutic in most cases. In my expiration methylphenidate didn’t change anything until I increased to higher doses and then I started having more tics on normal basis and more frequent tic attacks which tend to be heavier. With lisdexamphetamine I experienced less frequent and less heavy “tics/tic attacks”.

Some negative points of lisdexamphetamine are:

- If taken in the afternoon the effect length may interfere with sleep making more difficult to fall asleep. Generally not with low dosage, also it is radically personal, i do not have problems with it even on peak of 60 mg other people have difficulty even with 30 mg.

- Appetite loss is one of the negative effects, which personally I experience hardly ever (1-2 times a month), same as with methylphenidate but with lisdexamphetamine those few times tend to be heavier, sometimes at the point where I can’t eat even if I want.

- One “negative” point which is important to know (there’s a way to not experience it) is that after 24 hours there is still a very low active quantity which isn’t enough to notice. Despite it, on everyday consumption it accumulates**** which won’t ever become great quantities, still after a couple of weeks, you will continue to experience the benefits of the medication, but the stimulating feeling will become lower until it becomes unnoticeable.
Just to be clear, I don’t mean the therapeutic benefits of the substance, only that low stimulating “high” feeling will decrease.
If you want to avoid it, once a month take a tolerance break of 2-3 consecutive days, you can also experiment with more/less often and longer/shorter breaks. With tolerance breaks I mean completely avoiding any kind of stimulants, beside caffeine and nicotine (if you want you can avoid them too).
If you don’t care about the low stimulating “high” feeling, than you won’t “need” to do it. If you want you could still do it, no need of doing it once a month, you could do it a couple of times a year, just to decrease tolerance development.


Please note that everyone has a different body and habits, so what works on me not necessarily will on someone else. On top of that I am not a Doctor and I’m not qualified to suggest to anyone to take a substance, I’m only telling my experience and based on that suggesting to evaluating with a Doctor if Lisdexamphetamine is a good idea.
Hope this extremely long answer can help someone.
And if you who created this thread, I’m very curious about what kind of medication form and/or other therapy your trying, how are you handling ADHD now.

Have a nice one and bye

* Clarification: Extended release form of methylphenidate which differs from Concerta in the following way:
- Ritalin LA consists of 2 methylphenidate realeses at 4 hours distance
- Concerta consists of 3 releases (still 4 hours distance)

** Additional information: It got bad to the point that i snorted 200-300 mg of methylphenidate everyday for 2 weeks, and 4 weeks before and after that period of time I snorted 100-250 daily.

*** Additional information: With Elvanse unlike Ritalin LA, you haven’t that quick onset then a short peak of 1 hour/1 hour and half max and then a downer in which you crave dopamine as hell and risk to redose, all of this repeating on the second release. Concerta is more gradual the Ritalin LA but still a little bit to “wavey”. With Elvanse you have a slower onset but still pleasant, and after the peak it stays pretty stable, slightly decreasing over time you don’t perceive the decrease until 8-10 hours after taking it, after that it lowers faster but personally I don’t crave another one.

**** Explanation: Lisdesxamphetamine has a half-life of 12 hours, to completely expell a substance from the body it takes 5-6 times the half life. That means, to completely expell Lisdexamphetamine it takes 2.5-3 days.
Considering this the tolerance breaks of 2 days expells almost everything, in 3 days the body completely eliminate the substance, so 2 days is good enough and 3 even better.
Best would be 4 days breaks because you completely expell the substance and stay one day clean from it