View Full Version : NEW HERE: 41 w/ADHD-I : All meds paradoxical! What to do...


ADDCJVA
08-03-17, 05:19 PM
I hope I put this topic in the right place.

I was diagnosed in January with ADHD-I (ADD) and when I read about SCT, that speaks very close to me, though I also am verbally impulsive, and tap hands a lot.

Was put on Ritalin IR (generic)
-Day 1 started falling asleep on 5mg.
-Day 2 - 45 increased and it worked very well for motivation and functioning.
-Day 46 - sudden REVERSAL of effects = falling asleep on any dose, high or low.

Was put on Evekeo (50 l-amp / 50 d-amp)
-No effect up to 20mg. Higher doses just gave be high blood pressure.
Stopped after 1 week.

Was put on Adderal XR (generic)
-No effect on 10mg
-No effect on 20mg
Stopped after 1 week.

TOOK A BREAK FOR 2 MONTHS -
SWITCHED TO A P-DOC WITH TONS OF EXPERIENCE

Now on Zenzedi brand (Dextroamphetamine)

-Day 1 falling asleep on 5mg
-Days 2-10 at 10mg to 30mg
No amount gives motivation or clarity. Only tiring side effects, or nothing at all.
Took 20mg at 9:30am (no food) and felt mildly sedated, but generally ok. Took 10mg at 3pm, and feel slightly more sedated.



I have no idea what to do.

The motivation that I had with Ritalin reversed itself. Took a GeneSight test, which showed "mild" interaction with Ritalin, but showed Amp's are "safe". But none of them work.

Am I on too much of a dose? 5mg of Dextroamphetamine put me to sleep, but higher seems not to cause too much sleepiness, though still sedation.

...even coffee or red bull makes me tired.


What am I doing wrong, and what else should I be trying? I stay away from acidic foods, and try to take on an empty stomach now.

Thank you

sarahsweets
08-04-17, 06:31 AM
It seems like you gave the meds other than ritalin only a week to see if they work. Unfortunately, medication can be a merry go round and you have to try and be patient, which is brutal for people with adhd. I can tell you that the thing that made a difference for me was dosing frequency over dose amount. I am on a higher than normal dosage of adderall due to absorption issues but I take it 5 times a day. That makes all the difference for me.

ADDCJVA
08-04-17, 09:58 AM
Indeed, though I used Evekeo (50/50) XR and Adderall generic IR (75/25) for about a week each, then stopped because my NP had told me when she prescribed them "The good thing about these meds is you'll know if its the right medication fairly immediately". So, after it didn't work immediately, then also didn't work after a week, I thought it was prudent not to waste medication that seemed to have zero efficacy. Evekeo would have cost me several-hundred dollars to go past one week, as I had gotten a test pack for free to try which lasted about a week. If she said "You won't notice effects for many weeks" I would have stuck with either med, but telling me the opposite made me stop.

Additionally, the Nurse Practitioner had told me (and I did not ask) she would never prescribe Adderall IR nor Dexedrine to anyone, yet both were on my "safe" list from the gene test, so I started to question whether to trust the gene test results, or the NP's reason to refuse to prescribe certain meds.

The new p-doc I'm seeing has psychiatric credentials though-the-roof said he wanted to try Adderall again, but at a higher dose, since I had previously been prescribed a low dose to try. I asked (from so many reviews being positive) if we could instead try Dexedrine since it missed the "jittery" amp, and he said that was fine with him, as its choosing a medication in his opinion will be fairly hit-and-miss, so starting with any med seemed to be fine with him. He sent a prescription to the pharmacy for Dexedrine, which is no longer made, so he changed it to Zenzedi which is the new name, and had the same generic, but I'm currently trying brand-name Zenzedi to remove the potential that generics might be a factor.

Sarah (or anyone else) can you tell me if Adderall, or any other stim made you sleepy? I was sleepy on the low dose of Ritalin 5mg (which was half the amount the NP recommended to start on) and I was sleepy on higher amounts, and the middle lost its efficacy. I was sleepy starting Dextroamphetamine, and I get sleepy on coffee, which I never drink but tried again recently.

I keep wondering whether I am closer to SCT, since I used to fall asleep at friends houses when they would turn on WWE (which I have no interest in) and even recently on a day off I started falling asleep at 2pm when a family member wanted me to play a board game. Yet, I'll regularly tap my hands at a fast pace, fidget with my hands a ton or pick my nails like crazy. Wondering if I may have SCT + ADHD-PI (instead of i?).

fathom6
08-05-17, 02:18 AM
I might be stating obvious, but medicines can only pull weight to a certain extend, after all they achieve only measured results and not a cure. The rest is on you to stretch the medicines and aide their objectives. Like you need to excercise, find a hobby, a group class, intense training and others things like therap to aide those objectives

sarahsweets
08-05-17, 07:01 AM
Indeed, though I used Evekeo (50/50) XR and Adderall generic IR (75/25) for about a week each, then stopped because my NP had told me when she prescribed them "The good thing about these meds is you'll know if its the right medication fairly immediately". So, after it didn't work immediately, then also didn't work after a week, I thought it was prudent not to waste medication that seemed to have zero efficacy. Evekeo would have cost me several-hundred dollars to go past one week, as I had gotten a test pack for free to try which lasted about a week. If she said "You won't notice effects for many weeks" I would have stuck with either med, but telling me the opposite made me stop.
This is true in part. You will know if the medicine will work by not having awful side effects IMO. Like, you may not have the best results at first in a week at one dose, but you will know if it bothers you by awful side effects. I am wondering if your doctor is confusing those facts.

Additionally, the Nurse Practitioner had told me (and I did not ask) she would never prescribe Adderall IR nor Dexedrine to anyone, yet both were on my "safe" list from the gene test, so I started to question whether to trust the gene test results, or the NP's reason to refuse to prescribe certain meds.

This is plain silly, try not to deal with her again if you can.

The new p-doc I'm seeing has psychiatric credentials though-the-roof said he wanted to try Adderall again, but at a higher dose, since I had previously been prescribed a low dose to try. I asked (from so many reviews being positive) if we could instead try Dexedrine since it missed the "jittery" amp, and he said that was fine with him, as its choosing a medication in his opinion will be fairly hit-and-miss, so starting with any med seemed to be fine with him. He sent a prescription to the pharmacy for Dexedrine, which is no longer made, so he changed it to Zenzedi which is the new name, and had the same generic, but I'm currently trying brand-name Zenzedi to remove the potential that generics might be a factor.

They still make generic dexedrine- I cant remember if it was Barr or Teva but they do. I was taking the dex spanules for awhile, maybe thats what I was thinking of. Maybe they only make that one brand of ir tablets but you should know that there are dex spansules that are still cheap and generic. I always am leary of a doctor heavily promoting a drug that doesnt have a generic.....

Sarah (or anyone else) can you tell me if Adderall, or any other stim made you sleepy? I was sleepy on the low dose of Ritalin 5mg (which was half the amount the NP recommended to start on) and I was sleepy on higher amounts, and the middle lost its efficacy. I was sleepy starting Dextroamphetamine, and I get sleepy on coffee, which I never drink but tried again recently.

For me, when the dose was too low I got sleepy and this happened more with the dex than my adderall. I take higher than recommended doses because of absorption issues and metabolism but its not ridiculous. I take all adderall xr now and I take 5 doses a day.

I keep wondering whether I am closer to SCT, since I used to fall asleep at friends houses when they would turn on WWE (which I have no interest in) and even recently on a day off I started falling asleep at 2pm when a family member wanted me to play a board game. Yet, I'll regularly tap my hands at a fast pace, fidget with my hands a ton or pick my nails like crazy. Wondering if I may have SCT + ADHD-PI (instead of i?).

I dont know enough about SCT but I do think its understudied and needs more research. As far as I know the holy grail dsm hasnt added it yet so some doctors downplay what they dont have listed in their book.

ADDCJVA
08-05-17, 02:39 PM
This doc wasn't recommending the brand name Zenzedi (formerly Dexedrine, and currently available as generic Dextroamphetamine). It was only $30 more to get the name brand Zenzedi, and having heard that some generics work and some don't, I figured I'd go with "name brand" to know that if the med doesn't work for me, that I'll know it wasn't because it was a generic.

Which generic of Adderall do you use? I'm wondering which generics of Addy are safe, should the p-doc switch me.

So I just read my notes for the last 10 days. Either it makes me terribly sleepy, or it has almost no effect at all. Here's my notes:


I just don't know what any of this means.


7-26 5mg total

3:00pm 5mg dose
3:30pm Suddenly tired, eyelids feel magnetically closed, barely
functional,feel weighed down, distracted by significant
physical effects (tired)
4:30pm After short walk outside feel better. However, no efficacy.
Hands still fidgeting, and still unmotivated and
unproductive.

7-27 20mg total

9:00am 10mg dose
10:00am No efficacy, though feel slightly “medicated”
12:00pm 5mg dose
1:00pm Feel “medicated” but not motivated, not energetic, not
focused. Feel like I’m getting over a cold but only a little.
Still forgetful, unmotivated.
1:30pm Feel mildly sedated and calm. Unmotivated to work.
Unfocused.
5:00pm 5mg dose
5:30pm Feel awake (earlier dose wearing off?). Unmotivated.
Unproductive.
6:00pm Feeling normal. Not up. Not down. (normal being
“normal for me”)


7-28 22mg total

9:00am 12mg dose
11:00am No noticed effect. No noticed cognition benefit.
12:00pm 5mg dose
2:00pm Feeling dehydrated (had not eaten yet, but usually thats
not a problem)
4:30pm 5mg dose
7:00pm Feeling a little “off”.
8:00pm Mildly anxious. Somewhat tired, but not same “tired” as
previously. Generally off-putting feeling. Cut dinner plans
short to go home.

7-29 17mg total

9:30am 5mg dose
12:00pm No noticeable effects (slightly off and no motivation, but
no problems)
12:30pm 5mg dose
4:00pm 7mg dose
4:15pm Suddenly very tired. Was not tired before.
4:30pm Extremely tired. Falling asleep in chair.


7-30 7mg total

9:00am 2.5mg dose
10:30am 5mg dose
11:30am Jaw clenching. No other noticeable effects. No
motivation.
2:00pm Jaw aches from clenching. No motivation. High hunger
later.


7-31 15mg total

2:00pm 15mg dose
3:00pm No effects. No jaw clench. Not tired. Not motivated.
Regular self.
7:00pm Dry mouth, but high appetite.


8-1 (MED BREAK)

8-2 17mg total

3:00am (4 hours sleep due to wake-up for airport drop off)
6:00am 17mg dose
8:00am No noticeable effects. Not bad. Not tired, but not
motivated. Calm.
9:15am No noticeable effects.
11:00am Minor drowsy effect. No motivation nor focus.
5:00pm Hard crash. Exhausted and tired. Slowly blinking. Just
exhausted.

8-3 30mg total

8:30am Had my normal 9 hours of sleep
9:30am 20mg dose
11:00am No noticeable effect, though feel slightly “medicated”.
2:00pm No noticeable effect, but feel slightly “off”, not positive nor
negative. No motivation, but not tired. Not focused either.
2:30pm 10mg dose
4:00pm Mild sedated feeling. Not pleasant but tolerable. Like a
mild head-cold. Heart rated counted 112/60 (versus
70/60). Normal high appetite.
6:45pm Feel back to my unmedicated self.


8-4 2.5mg total

11:00am 2.5mg dose
11:30am Jaw clenching (medium)
12:00pm Medium sedation noticed. No motivation.
1:00pm Jaw clenching gone. Mild calm. No motivation.
3:00pm Feel mildly tired.
5:30pm Feel more tired.
6:30pm Even more tired.
9:00pm Unmotivated to attend concert I have ticket to, but going
anyway.
10:00pm Feeling somewhat tranquilized walking city street (no
alcohol).


8-5 (MED BREAK)

sarahsweets
08-06-17, 07:19 AM
I take adderall xr manufactured by GLOBAL. All generic adderall xr is made by the same company that makes the brand, SHIRE, except ACTAVIS and I think there is one other one that I cant remember but that one is newish too. My experience with actavis was horrible and I took it for three days and then promptly went back to my doc, turned in the nearly full bottle and got a new script. I havent tried the newer one that I cant remember the name of). Global, Teva/Barr are all made by Shire which means the same formula, the same raw ingredients and the same basic manufacturing process.

Arei
08-11-17, 10:52 PM
Additionally, the Nurse Practitioner had told me (and I did not ask) she would never prescribe Adderall IR nor Dexedrine to anyone, yet both were on my "safe" list from the gene test, so I started to question whether to trust the gene test results, or the NP's reason to refuse to prescribe certain meds.


IDK about IL exactly, but in Texas NPs cant prescribe C-IIs so it's possible she can't? Though it sounds like she probably just refuses.

Also just because a drug is "safe" on the gene list, doesn't mean it's actually going to work. It just means your body is compatible with the drug but it still doesn't guarantee its gonna work.