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Old 03-10-18, 09:49 PM
clarysage clarysage is offline
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newbie with questions about methylphenidate

Although I've known for 30+ years that I'm ADD, I recently brought this up with my therapist, who advised me to ask my PCP for a prescription for methylphenidate. The PCP asked me a series of questions to confirm, for her, that it was legit, and then gave me a prescription for 5 mg to be taken once a day; she said that it might not be enough, and that I might need a higher dose, and told me to call her in two weeks.

Two days of 5 mg produced only mild and vague improvement, and I wondered if it could just be the placebo effect. I tried 10 mg for two days -- that seemed somewhat better, but I was expecting something more dramatic, I guess. Called the PCP's office, left a message relating that, and asked for a callback so I could ask her some questions. Instead she called in a new prescription for 20 mg (again, to be taken once a day), and did not call me back. My therapist is away on vacation for 3 weeks, so I couldn't call her for advice.

I tried taking 15 mg the next day, and felt weird ... as if there was, for lack of a better description, electricity buzzing in my head, and a feeling of pressure -- not severe, but still, it didn't feel comfortable. I don't think I want to try the 20 mg.

Now for the last two days I'm back to taking 10 mg, and I'm taking it twice a day, first thing in the morning and again around mid-day; I feel happier, more relaxed at work, more able to focus when interacting with other people, more mindful of what I'm doing ... but it's not at all the "lightbulb suddenly coming on" or "fog clearing out" that I've read other people experience when they hit the "right" dose.

So I realize my PCP isn't the ideal person to help me with this. I don't know if there's any practitioner in my neck of the woods who's more experienced/skillful, but I'm turning to the group mind here with some questions:
1) Was going from 5 mg to 10 mg to 15 mg in one week too quick an increase? Should I stay at 10 for awhile and then try 15 again?
2) Do most people have an "aha!" experience when they find the "right" dose, or can it be less dramatic?
3) If I am taking one dose early in the day, and another at midday, is it safe to have a beer or glass of wine in the evening? Am I correct in thinking the drug has made its way through my system by then? Should I avoid any alcohol during the several hours after taking a dose?

Thanking you all in advance for any advice and/or sharing of your experience!
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Old 03-10-18, 10:23 PM
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Re: newbie with questions about methylphenidate

What kind of methylphenidate is it? Immediate release (IR) only lasts a couple or so hours. There are various extended release formulations that are designed to last longer.

The dosages you mention are on the low end, but everyone reacts differently. You should follow your prescriber's instructions, and if your prescriber isn't a good fit for you, then you should find another one.

Stimulants should have their effect right away. They don't need time to build in your system.
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Old 03-11-18, 06:51 AM
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Re: newbie with questions about methylphenidate

Im not sure what you are looking for. How were your symptoms? It sounds like when you took it twice a day it was working. I dont know if you expect some euphoria or to feel like superman but even if you did feel like that it wouldnt last. Those types of effects go away.
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Old 03-11-18, 10:58 AM
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Re: newbie with questions about methylphenidate

Hi Clary, I hope you don't mind, but I copied a recent post that can help with some of your questions. Also it references amphetamines, but IMO it is just as applicable for MPH. I was thinking you could give it a quick read and post your remaining questions/comments. -LN

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Originally Posted by Little Nut View Post
Hi *****, Keep in mind this is MY EXPERIENCE w/ amphetamines. YOUR EXPERIENCE will/may be different.

Your body takes time to adjust to starting a new med or changing dosage or changing dosing frequency. During this adjustment period you can't fully evaluate how well/poorly the med is doing for you. You just try to ride it out. You likely will have a euphoric period for a few days initially and then it will go away.(This has nothing to do w/ treating your symptoms. The euphoric period going away is often mistaken for the med wearing off. It isn't wearing off.) You will/may have side-effect that will/may lessen during the adjustment period. How well each of your symptoms are addressed may stay the same during the period, get better, get worse, start worse initially and then get better. The way to approach all of these unknown issues IMVHO is to keep a daily journal and just wait until YOUR adjustment period is over and it "lines-out" for you. Then you can look over your journal and evaluate how well the meds are working FOR YOU. On top of this, the adjustment period can be different for everyone. For me it is ≤2 weeks for most things, but up to 4 weeks for others (sleep disturbances). If it helps, we have all gone through this and it was equally confusing, but only at first.

How long should you wait until you are pretty much done adjusting to the Meds? I donno. Initially that is something you need to talk to your Doc about. Then after you go through it a few times you will find out what works for you. Then talk to your Doc about incorporating into your titration.

When should you discontinue taking the meds and talk to your Doc? This is something you need to get from your Doc and feel comfortable with before starting on a new med. In addition to serious side-effects associated with your new med, your medical history history needs to be taken into account.

How much latitude did your Doc agree to give you with respect to adjusting your dose and/or frequency? You need to stay within these boundaries. If you want to reduce your dose and your Doc didn't explicitly OK it already, you need to talk to your Doc. The same especially goes for increasing your dose. If you want to change your dosage frequency and your Doc didn't explicitly OK it already, you need to talk to your Doc.


Getting back to your explicit questions in your OP...

How long the dose lasts is different for everyone. My experience is that it is somewhat dose dependent but not much. Your dose can be too low and not all of your symptoms are being treated. Your dose can be too high and you experience side-effect and/or some of your symptoms get worse. If you're lucky enough to find an acceptable range with good treatment AND acceptable side-effects the duration will be pretty much the same over that range. For me with Adderall and dexedrine IR it is 2Ĺ - 3 hours. I believe other's have talked about 4-5 hours. Bottom line is YOU need to find this out by trial and error, keeping good notes, and doing good reviews.

How do you know what the right effect is? You were diagnosed w/ ADHD based on symptoms that you have. You were given meds to treat these symptoms. So write down each of YOUR symptoms. Next to each one, write down specific real-life examples of the symptom causing you problems in the past. Next to that write down specific real-life examples of that symptom, improving, staying the same, or getting worse. For some you may not have examples for, but others you should be aware of at any given moment. For me that is "focus" and working memory. If you keep a daily journal and try to evaluate each one, examples will occur for the others. Be sure to document undesirable side-effects too.

Should you wait for the crash to leave to evaluate? The answer is yes and if you can get your dose right and/or after your body adjusts there won't be a crash. At that point you will be able to evaluate your focus as well as other symptoms for treatment effectiveness. Sorry about the long response. May be too much coffee. Good luck and hope this helps. -LN
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Old 03-11-18, 03:34 PM
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Re: newbie with questions about methylphenidate

Chirona, I so appreciate your response and can relate to nearly everything you said. What spurred me into getting diagnosed (or my self-diagnosis affirmed) was reading a few articles about recent research on adult ADD; several people interviewed used phrases like "a lightbulb going on," and "medication turned my life around," which appealed way too much to my longterm fantasy of finding a magic bullet that would "fix" me. I get that what I am experiencing with 10 mg can be considered a fine improvement, and perhaps as much as I can expect, and that's okay; I have yet to see how it will play out over time.

"I happen to naturally be a bit of a dreamer, lead by emotions and not logic, and a little scattered just because I have emotional priorities that supersede my desire to be organized. I'm also hypersensitive and absorb so much input all at once, which becomes overload. Does that sound familiar to you, just in terms of your innate personality? ... " -- yes, that is very much me too, although I have always fought my emotions in a losing effort to live logically (and that has created a lot of problems, as you might expect). I have noticed in this past week on meds that the hypersensitivity is so much less, making my mood lighter, my work easier, and my days go more smoothly. It's encouraging; but there are still lots of unfinished projects, desires to start more, piles of books everywhere, lots of great inventive ideas, and so on that fill my head and my home with "too much," if you understand. How to deal with all that will likely always be a challenge, I suspect, but I'd like to make some headway.

Like you, I have found strategies over time that help -- a weekly list that lives on the kitchen table of appointments and things that need doing, two calendars (one carried with me), emailing myself reminders and leaving messages for myself on my voicemail. Nonetheless, some things still manage to fall through the cracks. I feel on overload all the time, even though I know people who have much more on their plates than I, and have long wondered why I haven't been able to accomplish as much as I think I should.

I like your ideas of acronyms, and putting self-care on the weekly list; that's one of the things I tend to let slip all too often. I go to a yoga class weekly, and get a monthly massage; I've been trying for years to establish a meditation habit without much success.

Journaling is something I've done rather obsessively during the last few decades, but now I am keeping one specifically for the purpose of taking note of what's happening in this regard.

While I read quite a few books on ADHD when my son was diagnosed nearly 30 years ago, I wanted to see if there are any newer ones out that utilize more recent research and understanding; can you or anyone else recommend any? I've just requested Dr. Amen's "Healing ADD," revised edition, via interlibrary loan.

And Chirona, I didn't think you went on too long at all -- I loved it. Thank you so much for taking the time to respond and share your thoughts and your story with me.
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Old 03-11-18, 11:37 AM
Chirona Chirona is offline
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Re: newbie with questions about methylphenidate

Hi Clarysage,
I too was diagnosed with ADHD as an adult even though I had been experiencing problems with it since I was a kid. I'm also a therapist because I know how hard it is and now that I've made it through years of uphill battles I want to support other people who go through it too. So, I'll try to pass on to you (and anyone else who reads this) what I've learned and practiced so far.
I've had very similar experiences as what you've described when trying meds to see what works. Treating and especially medicating/monitoring ADHD symptoms is really confusing because so much of it overlaps with the same things neuro-normative people experience. I think that might have something to do with why you're not getting that light bulb effect. My belief at this point in my experience is that it's not going to go away, it's just about to what degree it pervades your ability to function the way you feel reflects your best self. It's part of who we are and it'll always be a frustration, but medication and therapy combined is the best way to keep after it.
My response to your questions is that I notice you appear to be having some anxiety about how quickly and dramatically it's working and what you should/shouldn't do about dosage. You also talk about how everything has made you feel, and I recommend paying the closest attention to that. It's great that you have a good idea about how each dosage has affected you, even though it's often subtle and hard to distinguish.
What stood out to me was when you said 10mg seems to be working for you but you didn't experience the light bulb moment or fog completely clearing. That really resonates with me innumerably; I remember having those moments over and over again, waiting and wondering when it was going to happen. I'll say at this point I don't think it's likely that there will be a lightbulb moment, at least not for everyone. It's also important not to feel too rushed trying to find a medication that works. It really does sound like 10mg is working for you, so I wouldn't be in a hurry to mess around with that too much. It's normal to have to try things out and then increase dose or switch the type of med later when your brain builds a tolerance. (I've gone from Ritalin to Adderall because of that, and it helped, but I imagine I'll have to change again in another year or so). You learn what to look out for. Most importantly, I try not to wait for a lightbulb moment, but just pay attention to whether or not things are going poorly, and especially my mood. If your life stops being as stressful and chaotic as you remember it being before, even if you're still having some symptoms, that's a good sign and it might be the best possible outcome, especially if your mood is mostly stable.
I like to keep in mind we all have different personalities in addition to our different forms of ADHD. I happen to naturally be a bit of a dreamer, lead by emotions and not logic, and a little scattered just because I have emotional priorities that supersede my desire to be organized. I'm also hypersensitive and absorb so much input all at once, which becomes overload. Does that sound familiar to you, just in terms of your innate personality? Those are not my favorite things about myself, but I know a lot of neuro-normative people also have those traits. Some people actually find it charming, as long as I'm able to be productive and reliable at the end of the day. The hardest part is parsing out what about you is you, and what about you is the ADHD intruding.
I like the idea I read above about keeping a journal. It seems like it would be yet another task to add to your pile, but I can testify that it really does help and it's worth trying to jot down a few things you notice each day.
Lastly, creating and keeping a system is one of the hardest but most effective things to do for yourself. You can google ideas and find ideas that catch your attention as to what might work for you.
For example, I keep both a paper calendar, an agenda, and my iPhone calendar. It could get more confusing that way for some people, but I find it helps because it forces me to update all 3 to keep them consistent, which then reinforces what I need to remember.
Another one is coming up with acronyms to use habitually. I used to forget my keys and lock myself out, or forget my wallet or phone, so I say "PKW," (phone wallet keys) every time I leave my apartment. Then, even if I know I already put them in my bag, before I walk through the door I make sure I look in my bag to see each one of those objects so I can feel confident shutting the door behind me.
It also helps to make a weekly schedule, not only with work and appointments, but also with regular tasks and responsibilities I wouldn't normally imagine putting on a calendar, but that really make life hard if I forget or mix up. My favorite part about this is I make sure to schedule "self-care" in there. That way I'm able to get things done in a manageable way and also look forward to things I enjoy. And I don't mean just a bubble bath here and there; I'm also thinking of tiny things you can do for yourself to engage the reward system in your brain. For example, I love to paint my nails, so I'll tell myself to spend an hour doing the things I need to get done (from a list) and then after that hour passes and I've got a lot done, I take 15 minutes or so to paint my nails.
This was very long - sorry, I have ADHD. Hopefully you and others out there will find motivation and focus to read all of it, but I don't blame anyone if they don't! haha
Best of luck to you, and all.
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Old 03-11-18, 12:34 PM
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Re: newbie with questions about methylphenidate

Thank you all ... yes, it's IR. My insurance will not cover extended release.
Little Nut, that post you shared was SO helpful, and is the kind of information I wish I had gotten from my PCP. I've started the daily journal and will see where it all goes.
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Old 03-11-18, 10:16 PM
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Re: newbie with questions about methylphenidate

Pretty same situation and diagnosis. Doc had me on the XR. 10mg at first abs no better with my symptoms. She then moved me to 20 mg but itís expensive as all hell but more importantly, I noticed my Fitbit reporting me resting heart rate going way, way up which scares me. Iím trying to take the 10mg just like idk ďas neededĒ which isnít really working at all. Doc told me to move to 20 mg. I felt at 10 at first and now 20, the same how you described. For me, it feels like being the top G sting on an electric guitar - taut and humming but not anything where I can dial in and focus on one channel. It feels like Iíve always got 12 radios on in my head to different stations st the same time.
I know I should just talk with the doc but itís costibv me hundreds of dollars every visit and the bottom line is Iím scared of how itís making my heart race. Hmm. I donít know. Iím almost at a breaking point with work and life, trying to handle everything when my head works like this. Good luck to you! I want to hear how it goes with your meds.
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Old 03-13-18, 08:55 AM
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Re: newbie with questions about methylphenidate

Quote:
Originally Posted by Magentazer0 View Post
Pretty same situation and diagnosis. Doc had me on the XR. 10mg at first abs no better with my symptoms. She then moved me to 20 mg but itís expensive as all hell but more importantly, I noticed my Fitbit reporting me resting heart rate going way, way up which scares me. Iím trying to take the 10mg just like idk ďas neededĒ which isnít really working at all. Doc told me to move to 20 mg. I felt at 10 at first and now 20, the same how you described. For me, it feels like being the top G sting on an electric guitar - taut and humming but not anything where I can dial in and focus on one channel. It feels like Iíve always got 12 radios on in my head to different stations st the same time.
I know I should just talk with the doc but itís costibv me hundreds of dollars every visit and the bottom line is Iím scared of how itís making my heart race. Hmm. I donít know. Iím almost at a breaking point with work and life, trying to handle everything when my head works like this. Good luck to you! I want to hear how it goes with your meds.
Hi Magen, I have a cupla suggestions to investigate that may save a few $. Your post mentions that the prescriptions and Doc visits are cost prohibitive. Some of the pharmaceutical companies have programs for people to reduce the costs associated w/ their products. I believe most are for people w/o Rx insurance, but some will just limit maximum costs. You'll have to do some "searching". You're taking Adderall XR, so start w/ the different manufacturers. The big chain pharmacies have programs as well. In addition I would look into alternate meds that your Doc may prescribe; Adderall IR, Vyvanse, Dextroamphetamine IR, Mydayis. If you do have Rx insurance, I would review your insurance companies Drug Formulary. They'll likely have a "tiered" pricing system and you'll need to understand it. Then review the ADHD, Stimulant, Amphetamine sections and see if they have any that would be a much lower cost. In my case, my insurance company gives a big preference to dextroamphetamine IR (lower cost and few restrictions). As for the Doc, you could ask if he/she could help w/ the costs. If not, you may need to shop around for one that will or one that is preferred by your insurance (if applicable).

Wish I had more specifics. If you have more questions, feel free to post specifics and someone will come by that will be more helpful. GL, -LN
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