XaggitinXL-Elvanse-ConcertaXL - CHADD's Adult ADH...

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XaggitinXL-Elvanse-ConcertaXL

HappyMedNerd profile image
6 Replies

Hello, one and all. This is my first post. I would like to share with you my experience moving through the above medications.

A bit of background, before I was diagnosed I had been on Sertraline 100mg, pregabalin 300mg and diazepam 10mg a day for the last 10 years. I was first started on XagXL at the lowest dose once a day but as Sertraline is an SSRI I wanted t come off it. I dropped from 100mg of Sert a day to 50mg 5 days before my first dose of XagXL. Coming off Sert so quickly can give horrendous side effects known as brain zaps. Like electric shocks going through your body when you move your eyes.

Well, I had come off them before and knew I was highly sensitive to BZ's but I was so desperate to get on ADHD meds as it had taken nearly 3 years to get on them, that I threw caution to the wind and just went for it. I was also formerly alcohol dependent and used that to self-medicate due to having very loud tinnitus, you might see where this is going!

So I'm getting zaps, and side effects from the XagXL like strange tingling in my brain, headaches, poor sleep etc and on top of this I was using alcohol which was a big mistake and adding to all my woes. I'm 52 and had a hellish childhood which set me on the path to a certain lifestyle which itself led to self-destruction as my go-to escape.

So I stay on the XagXL for about 3 weeks going up in dose, whilst coming totally off sert and still drinking. (When I say drinking I'm talking a bottle and half of red wine a night) So this does not go well. I ended up coming off the XagXL until the zaps went (or so I thought) for about a week before starting on Elvanse. This time with no alcohol.

We are all different but I had an allergic reaction to Elvanse, my face got swollen and very very red, I would have very hot flushes and my breathing became shallow at certain times each day and I felt terribly ill for about three weeks until I again stopped taking them as it was too much. My BP was through the roof.

I again had a week off, no alcohol, and am about to start ConcertaXL today.

NOW WHY SAY ALL THIS?

Well tbh, I wanted to be a warning of what not to do when starting ADHD meds. If you are on anything your Psyc says you will be better off without, come off it very gradually and well before you start your new meds. SSRIs like Sertraline are not good for ADHD anyway as I found through research, they are helpful for those that need a balanced amount of serotonin but again my research suggested that they are more damaging to those misdiagnosed with depression who actually have ADHD and need dopamine more than serotonin as is what happened to me.

Also, keep clear of alcohol! Now if you do plan on having the odd social drink that's up to you. My advice would be to plan ahead. If you are going on a night out, do not take your ADHD meds that day or the day after, well that's what my Psyc told me. However, for me, I find it hard to do that so I am keeping off the booze.

As far as Elvanse is, well I am 1 in 1000 that suffered from the more severe side effects, so don't let it put you off. You may be fine. I think all the years of abuse, mentally, physically and via substances have made me very sensitive to meds as a whole. So I have to keep a written diary each day of exactly how I am doing including the good the bad and the ugly. I share all my notes with my Psyc.

Also on a side note these medications have varying ways of delivering the active ingredients and of course, your body has varying ways of handling the load. This is called your pharmacokinetic profile.

A PK profile is generally the result of four key physiological events: absorption, distribution, metabolism, and excretion, typically referred to as A.D.M.E.

The med I'm taking today for example ConcertaXL, works as follows. The tablet coating of Concerta dissolves within 1 to 2 hours and releases 22% of the total dose of MPH. The remaining 78% of the dose is osmotically controlled (osmotic-release oral system [OROS] technology) and released over 10 hours through a laser-drilled hole. The maximum effect occurs 6−8 hours after dosing.

Each med has its own way of delivery: OROS MPH

This means: Osmotic-release oral system of Methylphenidate. Different brands have patents that deliver the MPH in different ways. This can have a dramatic effect on how your body reacts to the osmosis and the concentration of each released dose. The tablet coating of each brand has variables in terms of its breakdown within the body and the release of MPH within it. Some are quick some take much longer.

It's a good idea to do some research on this which can readily be found online, just so you are aware of why and when you may be feeling like you do when taking certain medications for ADHD.

I hope my body accepts ConcertaXL, I have had real moments when it felt like my brain was awake in a new and exciting way, I could think more clearly and see what I needed to do but sadly my body rejected the med and here I am again. Though, I will not stop as I believe these medications can be life-changing and am learning each time when I need to eat, to drink a lot of water, and most of all to be patient with myself.

I will post an update at some point during this next new phase. Have a great week everyone.

Johnny

Quick tips.

Get a BP machine from Amazon for £17 and I bought the cheapest Fitbit which gives me invaluable data that helps me see my HR through the night how long I slept, how my breathing was and my readiness for the day. Trust me the data does not lie! :)

PS. I make films and attached is a poster from my award-winning short film from a year ago JFYI.

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HappyMedNerd
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6 Replies

I don't get (maybe I missed it) why you had to come off of the Zoloft? Depression is a widespread condition among people with ADHD and many of us take antidepressants and a stimulant. I take Wellbutrin and Ritalin. I happen to really like Wellbutrin, but if it wasn't that I assume I'd be on something like Zoloft.

Have you told your provider about your drinking? Here's the thing: in order to minimize ADHD symptoms and troubles, we have to be basically nakedly clean with our doctors. Including pot and eating disorders and everything else ...

HappyMedNerd profile image
HappyMedNerd in reply toGettingittogether

Hi there, how are you? Thanks for replying. :)

You may have missed this bit?

'SSRIs like Sertraline are not good for ADHD anyway as I found through research, they are helpful for those that need a balanced amount of serotonin but again my research suggested that they are more damaging to those misdiagnosed with depression who actually have ADHD and need dopamine more than serotonin as is what happened to me.

I think that should have answered your question really.

However, not all folks that have ADHD suffer from depression, read for yourself about the effects that SSRIs can have on someone who is not depressed but has ADHD or ASD or CPTSD which I have all three. Great that it works for you and great we are all different, what works for one may not work for another.

My Psyc and my medicine provider both know everything about me, and I mean everything, It sounds like you are from the USA? I don't know how things work over there but I have nothing to hide and I've done just about everything going at one point or the other. It's all in my records.

And for the record, I chose to come off Sertraline, it never felt right, it did not help, it just chemically castrated my mind. Again we are all different.

This section is from an article by Gina Pera. Author of the four-time award-winning book: Is It You, Me, or Adult ADHD? It basically swayed my opinion.

SSRIs and other antidepressants are NOT first-line medications for ADHD. Period.

Yet, ADHD often has traveling companions—depression, anxiety, bipolar disorder, etc.

It is tricky to tease out ADHD and co-existing conditions until the ADHD is treated. Because the terms “depression” and “anxiety” are non-specific; they are simply descriptors. Plenty of people with ADHD start stimulant medication and then find that their “depression” or “anxiety” resolves; it was fallout from untreated ADHD.

But sometimes the depression, anxiety, etc. are neurogenetic. That is, part of the person’s neurobiology, as with ADHD.

If the person with ADHD also has neurogenetic depression/anxiety and it is actually more severe than ADHD, it might make sense to treat that before the ADHD.

Otherwise and in general, SSRIs can actually intensify ADHD symptoms, due to the complex relationship of dopamine/serotonin/norepinephrine in parts of the brain. (End)

So that was my choice and I am NOT saying, quick everyone come off SSRIs.

It's totally down to you and how you feel your mind and body work.

There is no exact science but being in my head I'm closer to knowing what works (FOR ME) than anyone else.

Have a great day :)

Gettingittogether profile image
Gettingittogether in reply toHappyMedNerd

As long are you're comfortable with your answer, that's all that matters. I have not seen any researchers back the findings you present here about ssri's being bad for ADHD sufferers.

Here's what CHADD, the site sponsoring this forum, has on this issue:

The SSRIs (selective serotonin reuptake inhibitors), which by themselves do not effectively treat ADHD symptoms directly, appear to be successful in the treatment of individuals who have co-existing depression and who are taking stimulants at the same time for ADHD.

chadd.org/for-adults/medica....

HappyMedNerd profile image
HappyMedNerd in reply toGettingittogether

Don't want to be mean, just trying to help or share life experiences.

And your quote from CHADD is almost identical to what was in my reply.

You wrote from CHADD...

'The SSRIs (selective serotonin reuptake inhibitors), which by themselves do not effectively treat ADHD symptoms directly'

And I wrote from Gina Pera...

'SSRIs and other antidepressants are NOT first-line medications for ADHD. Period'

Just saying I do not have depression so do not need SSRIs which I was on for ten+ years and caused me misery.

However, you may have depression and find they work alongside stimulants to help treat both your depression and ADHD.

All good in the hood. As I said we are all made up differently.

HAGD 👍

Gettingittogether profile image
Gettingittogether in reply toHappyMedNerd

No problem, I got that the ssri's weren't good for ADHD. And so yes, I'm happy you finally got a stimulant.

I assumed (my mistake) that you did have an issue with depression. I'm glad you do NOT!!!!!

HappyMedNerd profile image
HappyMedNerd in reply toGettingittogether

Thnx much appreciated :)

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