I am a 68-year old woman who was diagnosed with ADD (the Inattentive Type) 23 years ago, in 2000, by a reputable psychiatrist. She quickly put me on Ritalin and I have been taking it continuously since that time.
I have done some incredible things and accomplished things I never even imagined due to having 'clarity' for the first time in my life!
At the age of 50 I went back to school, graduating magna cum laude with a BS degree. Shortly afterwards I launched my home-based, freelance writing business. I'm a technical writer as well as Certified Professional Resume Writer. It took some years but I did achieve a good deal of success.
Okay, fast forward to 2019, when I suddenly fell ill with some mysterious symptoms. I spent the better part of that year running to the ER, etc. finally to get some half-assed *(sorry) diagnoses, but I thought it was over and I'd be fine with some meds. Nope, not at all.
Since then, I've experienced a series of ongoing medical problems, bad enough to hospitalize me a few times, along with a lot of "here take this" meds.
Next we had COVID and while I didn't think it was going to affect me as I worked from home anyways, somehow, things went from bad to worse and eventually my mental health was a bigger issue than the physical stuff.
I started having bad breathing problems but now realize I think many of these episodes were panic attacks. Anyway, not much has moved forward in a positive way for me since that time and basically I'm a mess. There's always something wrong and when I think, hmmm, I feel okay now, something new and even more awful happens.
So, I'm battling both physical and mental health issues. Recently, the mental health problems have surpassed the physical matters but it's all related and horrible.
I am married, have 3 adult sons, bla bla bla.
Okay, that's the background.
Here's my #1 problem and reason I am writing. Like I said above I started taking Ritalin in 2000 and have been on it non-stop since that time. But, as you can also see it has changed my life in many positive ways.
Since I work from home and am always stressed because if I don't have clients we have no money, so I work a lot of weird and often long hours. I'm prescribed 20 mg tabs 3 times a day; however, for a lengthy period of time I was prescribe 4 due to my work schedule and hours.
All my life I've metabolized any and all medicines, antibiotics, even tylenol, etc. in a weird and fast manner. So, a 20 mg. tab does NOT last 4 hours, and I got used to taking 4 and often have to take more than 3 to work.
So, I'm always running out early and the last thing I can do is ask for an early refill. We all know how that goes! (In previous years I had a doctor who was much more reasonable and would refill them pretty much whenever needed.) Now, it's a major issue. Yeah, I get it. The drug is abused, but some of us need it!
The issue is it's not a mild inconvenience when I don't have this med in my system. It's a nightmare! I am a totally different person. I absolutely cannot function on any level. I do nothing other than watch YouTube. Even the thought of having to go out, answer a call, or do even the most minor thing on the computer is terrifying. I get totally phobic about everything. I fear everything. I can't do ANYTHING! I will literally stay on the couch all week, barely getting up to eat, and use the bathroom. Showering, nope, I can't do it. I can't do anything. It's the worst thing I've ever experienced and seems to be getting worse as time passes. After 23 years on this stuff, I guess in a way I understand, but don't understand what it is doing to my brain. Obviously, all my Serotonin or Dopamine is totally zapped, because I have no emotions other than bad.
I've had many years to deal with this and have tried everything to talk myself out of the way I feel, get up and do stuff, but I can't. I can't. Plain and simple. It's not a mind over matter thing. It's real and terrifying! I can't work and the thought of having to do anything is overwhelming and a nightmare.
I've been trying different types of vitamins and other OTC, like Steve Harvey's L'Evate You, powder, anything to try and boost my health but absolutely nothing helps!
I cannot and will not talk to my doctor or any doctor about this because the first thing they'll do is yank the Ritalin out from under me for good! There's just some things you can't rock the boat about and I know this is a big one. And it sucks!
I don't know what to do anymore, but I do know I cannot live like this. The ups and downs are unbearable, because it's not just the period when I don't have the pills, but after not having them for any amount of time, when I finally do take them, I go through that initial period of not being able to sleep and trying to get everything done NOW because who knows what tomorrow will bring! I cannot live like this anymore, and want to know 2 things. What is happening in my brain to cause this? And the big question, what can I do or take that will produce a similar effect? Is there anything OTC? I tried some things years ago and nothing really did much good. Is there any where I can buy it OTC? I am really desperate. I can't stand this anymore. I'm not me when I don't have the meds.
I realize I probably sound like a lunatic addict but really, think about it all. 23 years? Of course I've built up some kind of tolerance.
I just don't know what to do but I cannot go on like this. Someone please comment and help me.
Thank you for listening.
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I don't know many people on Ritalin they mostly take Adderall but they have all described your issue about increased tolerance over the years and are ALWAYS out of their scripts incredibly early which is a sign of addict behavior. If you are using your whole script in 2 weeks you definitely have a problem and that also means you are going without it for 2 weeks. If you start taking 4 pills again right after that I can see why you'd have trouble sleeping because it probably is too strong after having none in your system. If it's been a really long time since your dose has been adjusted it's not surprising you may need a change- I'm unsure why you feel you cannot talk to your doctor or any doctor. Medication Management is an ongoing process. If you've been going to a general doc for a really long time for refills vs saying this isn't working for you anymore you probably need to make an acctual appointment for medication Management with a psych doc or LPN.
They may suggest things like changing the dose, adding something like wellbutrin or even trying another stimulant like Vyvanse. You aren't going to find your med solution over the counter with what you are describing.
You’re going to need an appointment with a psychiatrist. Period. And they will help sort everything out. A primary care physician will probably not feel comfortable managing your ADHD. Best wishes.
I COMPLETELY understand! I get your struggle with the fast metabolizing! It's terrible bc doctors think 'ok the pharmaceutical company says every 4 hours' and, here we are 2 hours later feeling useless. I understand not wanting to talk to your prescriber too.
I would cautiously suggest trying another stimulant but, idk. Maybe you'll be able to start at zero again and it'll affect you differently. I'd say also *maybe* to think about adding an antidepressant if you're not already on one. I think it could help with the chemical changes in your brain (I'm nothing near a doctor so, grain of salt).
It's a shitty thing to go through. I hope things get better and you do what's out there like maybe trying another med or taking a med vacation. I've heard of people doing that.
I was also thinking of trying another medication.Definitely must see a psychiatrist. They can change medication or maybe add like a nonstimulant to see. You may have to through various trial and error.
Wow... I can totally relate to your fears !! I am 61. Diagnosedf at 30 with severe ADHD. No need for me to boo hoo about my fucked up life because all of us adhd victims have a story. I started self medicating at 12 years old. Again,.. not going to get into details of my drug adventures but weed, beer have always been a staple in my life. After diagnosis the only medical treatment available was antidepressents. Ive experimented with many any settled with paxil. So for 30 plus years I have been on antidepressents. Have they helped?? who knows. But after so many years if I even miss 2 days I start falling into the abiss. God forbid something happens ,.. by the forth day I would become suicidle.
Now ,... 8 years ago I discovered adderal. My world changed !! From the very first dose I felt a clarity like never before. From that moment my life had hope. Generic adderal, dextroamp-amphetamin is my wonderdrug. For me, fortunately I dont build up a resistance. Un like opiates to which eventually you need to up the dosage . However,..... counting on a monthly supply that needs to be filled at a specific time or risk running out is a risk I cant take. wether it be my antidepressent or adderal, the " what if" .. What if the pharmacy cant fill the script on time, what happens when I no longer have insurance and cant afford my meds? What happens should I run out??? All I know is I have no desire to even attempt life with out adderal. Going back in time is not an option.
So, what im about to share may not sit well with others but its what I do to survive. Over the years I have seen many physicians. My initial dosage of adderal was 15 mg twice a day. Although I have not built up a tolerance after 8 years I am now prexcribed 30 mg twice a day. Im pretty sure 60 mg is the max dosage legally allowed. I have since stockpiled a large inventory. I live alone , very remote, and income potential is extremy difficult. The reality that a year from now I may not be able to afford these drugs I need to survive is very real. Having a stockpile to fall back on, to buy me some time and not deal with the stress / fear of running out is for me a necessity. I only recently had my antidepressent upped for the sole reason to have extra at the end of each month. Worst case senerio, for whatever reason I can no longer sustain my medications, It would take months and months to slowly wean off. Going cold turkey on medications like this is not an option. I wouldnt make it a week.
As someone with severe ADHD, its safe to say I suck at writing and communicating. I also dont read and comprehend well. This response may have absolutly nothing to do with the point you were trying to relay in which case "welcome to my brain"
I guess the moral of my story is, always prepare for the worst. Do your best to not be held hostage.
I can only tell you that my son at 22 was on the highest dose of adderal 65mg ER for about 4 years at that amount and he had a manic episode. Anxiety started so his doctor added hydroxyzine and gaufacine. Then anger started and added abilify. It was all coming from the adderal and the other meds made it worse- just a heads up. See a psychiatrist and it maty be time to have your medication changed.
We stopped seeing that psychiatrist and he is now seing a nurse practioner in an SOS recovery place to safely wean him off all this crap. Understand meds help. But if something isn't working or is causing a side effect, my thought now is change the first med- don't start adding more mg or other meds.
Maybe you need to need to be seen by a specialist, like a psychiatrist or a neurologist, rather than a general practitioner.
If you've already been seen by a psychiatrist, then I'd suggest a neurologist, because their specialization focuses more on the biological aspects of the brain and central nervous system. So, perhaps they would have some other ideas, like how to address your fast metabolism for Ritalin.
I know that some people with ADHD have ended up switching from IR (Instant Release) to XR/ER (Extended Release) form of their medication, with an IR booster for later in the day.
Others have had medications switched between methylphenidate-type medications (such at Ritalin), to amphetamine-type medications (such as Adderall) and back, over time. That's because it's possible to develop a tolerance over time.
Another treatment option which has become used more over the years of Wellbutrin (bupropion), which I believe treats both serotonin and dopamine needs. It's not a stimulant, so it works differently. (I don't know if that means that it can be prescribed in combination with a stimulant. That would be a question for your doctor.)
As for non-medication treatments, you mentioned supplements. Meeting your nutritional needs is definitely important. Besides meeting vitamin and mineral needs (such as with a multivitamin), I've heard of Omega-3 supplements working well to help with ADHD. (Which reminds me that I ran out of Omega-3's a while ago...time to put that on my shopping list.)
Getting enough sleep and keeping stress* levels down is essential.
In addition to all that, exercise (even just walking) and [mindfulness] meditation are said to be the most helpful treatments for ADHD, besides ADHD medication.
------
* I recently heard the concept that not all stress is bad. It can be enhancing and can spur creativity, instead of being limiting by causing anxiety. Just think about how people rise to the occasion, even in the most strenuous of circumstances. A recent episode of the Huberman Lab podcast included the topic of the benefits of a stress-is-enhancing mindset.
I thought it was interesting, and worth passing along, because I know that anxiety has caused some of my worst performance, but just as often I've experienced a rush of creative problem-solving inspiration and energy when faced with a tough situation.
There is no legal maximum, it's FDA recommended max dose. I take Zenzedi 4x a time, but recently had it reduced to 3x a day because OHIO is intimidating prescribers about stimulants. I would never take extra, it's just not something I would ever do because when you are using it like you describe, really everything you say screams addict. It's not a matter if you lose your medication, it's when, especially asking for early fills that is a huge no, no you need a specialist. If I increased my dose and ran out, then I would be dismissed as a patient for sure. I also take urine screens. So, fish oil, meditation, none of that nonsense works. I know because I've spent thousands on vitamins’ supplements with no luck. There isn't a single supplement recommended for ADHD do to lack of efficacy, but Focus Factor assures you get essential nutrients. I wouldn't ever recommend amphetamines because they are much more dependence inducing than methylphenidate and rarely do people react well to both, it's one or the other. I wouldn't recommend taking more ever again because you will get turfed quick, and then it's on your record, which means you are for lack of a better term screwed.
I relate. I found that once I had a shift in estrogen, my entire ADHD became more pronounced and unmanageable. I’ve been on Add_erall since I was 38; I’m now 60.
My ability to focus, make decisions and cognitive abilities took a hit. Thus, leading to stress and huge anxiety.
My stress levels lead to my autoimmune disease. My health has suffered.
That was two years ago. I ended up seeing a therapist that I continue to see.
In April, I finally saw a gynecologist and described my executive functions that had changed after menopause. I was placed on a patch of estrogen…very low amount.
“While ADHD symptoms may fluctuate due to hormonal changes, particularly in females, it's essential to note that the exact relationship between ADHD and estrogen levels studies (National institute of Health) have suggested that a drop in estrogen levels during menopause could potentially exacerbate ADHD symptoms in women who already have the condition. “ NIH
Changed my life. Cognitive clarity, much less anxiety.
As for my health, things changed. I do not earn the same salary that I once did. Left a stressful, demanding job.
I’m hoping that my reply helps you by knowing you are not alone. That there is hope.
Thank you for contacting CHADD's National Resource Center on ADHD. Congratulations on all of your success getting your degree and starting your own writing business. Those are such wonderful accomplishments!
I am sorry to hear that you seem to be struggling after many successful years with your ADHD treatment. First, as a female, you may or may not be aware how hormonal fluctuations can affect ADHD symptoms. Also, ADHD symptoms can change over a person's lifespan making it especially important for continued evaluation and treatment. It clearly sounds like your symptoms have changed/gotten worse and that a new evaluation would be required. The fact that you are running out of medication whether due to fast metabolism or increasing symptoms, necessitates an appointment with an ADHD specialist (and one knowledgeable about being a female with ADHD). Here is some information about how hormones can affect ADHD symptoms:
Also, there are many medications, including stimulants and non-stimulants, that are approved to treat ADHD. Here's a list of those medications for your reference: d393uh8gb46l22.cloudfront.n....
If you have further questions or want to speak with a Health Information Specialist, you can call us at 866-200-8098 M-F 1-5 pm eastern.
So sorry to hear of your situation and your struggles.
I don't get that you can't talk to your doctor. Of course you can talk to your doctor. I suggest you copy and paste this note right here and hand it to the doctor the next time you see them.
Asking for higher meds does not automatically equal abuse in the minds of doctors. The difference between 3 x 20mg and 4x 20mg is hardly evidence of abuse. You're literally asking for one more pill.
I have never heard of a doctor cutting off all meds because someone make a higher request. It's not at all unusual for people with ADHD to ask for a higher dose. Happens all the time.
I had hip surgery in the fall and got prescribed opioids afterwards and the surgeon had a packet with a lot words about we can't automatically extend or increase your opioids. But I was still in pain when my oxy rx ended, so then I called my surgeon's office and they refilled my opioids--with not problem or hesitation!
I say print out what you write here and add something. Add how you are able to function with the 4 x 20mg daily dose. Describe life in detail when you can get that dose.
BTW: no, you don't want to ask for an early refill. Yes, doctors don't like doing that--though that's what my surgeon did, but surgery was a very specific and time-limited condition. You want the higher dose prescribed up front!--so you don't have to ask for a refill. That's the goal of course. That's what you want to ask for.
What is your health insurance situation right now? And who prescribes you the Ritalin? Psychiatrists and nurse practitioners are generally more confident about prescribing higher doses than a family doctor is. Also, you might have some depression going on right now. Ritalin does help with depression for sure, but you might have more going on than ADHD.
I really encourage you to set up an appointment, hand them exactly what you've written here. Talk about the good side of how you function when on 80mg and basically share your life with the doctor. Building trust with the doctor (by just overall describing our lives) always seems to help in my experience.
It's not about dose, it's about using it as a crutch the word addict is the wrong term, you are dependent on a dose you increased. Doctors of course don't dismiss you for asking for more meds, but they will if you decide you will take how many you want, not what they want and that would create a strain and if doctors are asked constantly for increase they do suspect addiction. My dad, my sister, my first cousin are all doctors, so I know quite a bit of how they think and what are red flags. I have advocated for myself for 20+ very successfully. If you run out of your script, I wouldn't call to ask for more, just suck it up until next refill because doctors do go nuts when they have patients gone rogue. Just keep that in mind, I don't like to see anyone cut off what helps them.
They do make an 80 mg extended release methylphenidate tablet that's 20 mg 4x a day, and the doctor might go for it since it's extended release. The only downside, it's made by Purdue, the same company that caused the OXY epidemic. It's like Purdue made an 80 mg Ritalin as a joke, since 80 mg was the most popular OXY. The 80 mg tablet might be the ticket for you, it;'s the highest dose methylphenidate available.
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