jwilli

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  • in reply to: Medication for adults #172461
    jwilli
    Participant

    Hello,
    I agree with what Penny just posted. Stimulants still are the best first line of treatment for ADD/ADHD. When I was diagnosed I had a thorough evaluation done with a psychologist and psychiatrist and they concurred I have ADHD with NO co-morbid issues. I think it’s shame that some doctors just seem to insist that an ADDer must have a co-morbid issue when in fact that’s not always true! Before my diagnosis for ADHD I did however experience some frustration and dysthymia, but after I started on stimulants the dysthymia and feelings of frustration totally dissipated, and I didn’t need to be prescribed an SSRI or anything other than a stimulant.

    I was first prescribed 5mg Ritalin IR three times a day, and over the years I was prescribed dextrostat and then Adderall XR. I took a few years off from treatment and became a workout fanatic and changed my diet too. But after I went back to school to finish my degree it became apparent to me and my wife that I needed to talk to me doctor about getting back on stimulant treatments. During the past year he has prescribed only Vyvance. For me, it clearly isn’t as smooth and effective as Adderall XR was and I have to also say I’ve had some real mixed results with it. Mostly not good! I’m going to ask my doctor if he can prescribe a different stimulant.

    Hey, I understand the stigma surrounding amphetamine based stimulants and the unfortunate rampant misuse of stimulants has made some healthcare workers and others very cynical about stimulants. But for those of us adders who comply with the law and our doctors we shouldn’t have to suffer maltreatment or mistreatment because of other people’s ignorance and bad behavior. This “medication issue” is a very unfair problem that’s like an insult on top of injury! I feel for any ADDer who is experiencing problems getting the right stimulant medication for their treatment.

    • This reply was modified 1 year, 6 months ago by jwilli.
    in reply to: dopamine deficiency or dopamine receptor deficiency? #172091
    jwilli
    Participant

    Hi, This dopamine deficiency vs. dopamine receptor deficiency is a very interesting topic. I intend to do some research on this and see if I can add anything to our collective post.

    As for ADHD becoming more like ADD as we age I think perhaps there is something to that concept. I was a hyperactive child but didn’t get an official diagnosis for ADHD until I was in my twenties. That later diagnosis was partly due to the fact that ADD/ADHD wasn’t nearly as well identified in the late 60s, when I was a little kid.

    I’m now in my late 50s, and as a result of natural aging, I’ve slowed down a bit and along with that my super impulsive ADHD habits have somewhat diminished too. However, I still fidget and bounce my leg, and have trouble staying on tasks….So, I’m very much at least still ADD.

    I have recently been trying different dosages of Vyvance with very mixed results. I did much better with Adderall XR, but the stigma attached to it these days makes you almost feel guilty to bring it up with a doctor. Is anyone here currently taking Vyvance and if so can you share some of your experiences and insight with me. Because I’m still not settled with how it acts with me, and it’s pretty frustrating at times.

    in reply to: VYVANSE HELP #172058
    jwilli
    Participant

    Hi jd, I noticed your post as I just got back on after some time off this forum. I too am having some issues with Vyvance. I’ve only been taking it on and off for about a year and a half. Before that I took a break from treatment for a few years to try natural alternatives. Exercise is always good and eating a healthier diet with certain supplements helped me somewhat too, but nothing alleviates and sooths my ADHD symptoms better than prescribed stimulants, like Adderall XR, and methylphenidate etc…I was diagnosed about 25 years ago with ADHD and dysthymia (mild depression) by a psychiatrist. He tried me on a few different meds until we found that just Ritalin worked the best for me! Ritalin was a wonder drug for me and also alleviated my dysthymia. Over the years my psychiatrist switched me to Adderall and then Adderall XR which worked wonders for me too! For years those stimulants soothed my fidgety body and mind and allowed me to settle down, concentrate, focus and thoroughly complete each task at hand.

    It essentially helped me to get shit done like normal people, and stay gainfully employed in a high stress, but high reward job for years!
    But back to Vyvance, I have tried 20mg, 30mg 40mg and now recently tried the 50mg. The problems I’m dealing with seem to stem from formulation inconsistences, not dosage, but what’s in the active ingredients here. I know the listed active ingredient is ONLY supposed to be lisdexamfetamine dimesylate, which turns into dextroamphetamine after it combines with lysine in your digestive tract. But for me the effects can vary greatly from month to month, prescription to prescription.
    When it’s working right, the Vyvance usually takes about an hour to metabolize before I feel any positive effects of the stimulant to start working, and then it stays with me most of the day. But other times like now, shortly after taking the Vyvance the initial feelings and physiological effects I get are the like opposite of the typical stimulant effect. It’s a woozy, spacey even dizzy feeling. My thinking gets slowed and the worst part about this initial “Vyvance” effect is I have a very difficult time staying on task and concentrating and remembering what the heck I’m even doing!…I laugh now but it can be pretty frustrating.
    The problem is all this happens before the stimulant even has a chance to metabolize into dextroamphetamine and take effect!!…So, it leads me to feel like I’m being drugged with some other active ingredient that’s mixed into the Vyvance. Are you experiencing a problem like this?

    • This reply was modified 1 year, 6 months ago by jwilli.
    • This reply was modified 1 year, 6 months ago by jwilli.
    • This reply was modified 1 year, 6 months ago by jwilli.
    in reply to: Teva patent expiring 2020 (???) #134178
    jwilli
    Participant

    Which med are you referring to that Teva makes?

    in reply to: Uneducated Doctors #133993
    jwilli
    Participant

    It seems to be true that many doctors are not trained well if at all to treat adults with ADD/ADHD. I was fortunate to be diagnosed by a psychiatrist in 1992. I’m currently 57 and I’ve been re-diagnosed with ADHD over the years by other doctors too. But my original diagnostic psychiatrist was very thorough and the diagnosis required several office visits, with multiple interviews with me and even my parents. He also conducted testing such as MMPI, Wechsler etc…Frankly, I think a big part of what brought on the stimulant abuse problems over the years was because of improper, quickie one office visit diagnoses. In my opinion, simply rattling off a few symptoms to your doctor is NOT sufficient to accurately diagnose ADD/ADHD. Also, it sadly seems that too many doctors only know what their drug reps tell them about the medications. Drug reps are salespeople, not doctors…Need I say more?

    Hey I’m not saying you have to go to a psychiatrist to get diagnosed properly, but you should at least be seen by a doctor who understands ADULT ADD/ADHD. It’s just not the same as kids with ADHD. For me, the best treatment I’ve had overall has come from mental health professionals vs. family doctors. But having said that, I recently had to discontinue seeing a certain psychiatrist because he seemed more interested in pushing various drugs other than stimulants for illnesses and complaints I don’t even have and never have been diagnosed with having either! When I’d ask him to clarify what exactly he was treating me for, he told me ADD. But when I complained about the lack of efficacy of the treatments and the awful and unorthodox side-effects I got from the so-called stimulants, he would get very defensive instead of hearing my subjective and objective complaints about the stimulants When I asked him what was the purpose of prescribing “compounded” stimulants that contain drugs other than stimulants? He refused to give me a straight answer. Yet his own nurse told me on several occasions that “all the stimulants nowadays are tainted, that’s just the way it is”…Oh Really!? That’s Not good and NOT acceptable!

    The sad fact is about 15 years ago the landscape for ADD treatment with stimulant medications changed to “compounded” stimulants that contain other active ingredients like SSRI’s and anti-psychotics. These compounds mostly don’t work well to treat adult ADD/ADHD symptoms. I’m also sorry to say too that most people who started treatment within the last 15 years have probably been getting these illicitly compounded “stimulants” all along, so many may not even know the difference. So, if you’re wondering why your stimulant meds don’t work and feel the same like they used to? It could be that the formula has been changed without your knowledge or consent. It’s become a lot trickier to find a doctor who not only understands how pure stimulants really work for folks like us who have ADD and no co-morbid issues So, it’s important in this day and age to do some homework on medications and doctors first before seeking treatment. Just remember if the doctor has you sign a “Informed Consent” form for your stimulant meds, you have a right to know exactly what’s in your medicine. So, please do some research, and if it doesn’t feel right trust your gut, seek answers that make sense, and maybe even consider getting the drugs tested.

    in reply to: Uneducated Doctors #133924
    jwilli
    Participant

    I was diagnosed by a psychiatrist in 1992. I’m currently 57 and I’ve also been re-diagnosed with ADD/ADHD over the years by other doctors too. But my original diagnostic psychiatrist was very thorough and the diagnosis required several office visits, with multiple interviews with me and my parents, and testing such as MMPI, Wechsler etc… Frankly, I think a big part of what brought on the stimulant abuse problems was because of improper, quickie one office visit diagnoses. In my opinion, simply rattling off a few symptoms to your doctor isn’t sufficient to accurately diagnose ADHD, and then prescribe stimulants. Also, it seems that too many doctors only know what their drug reps tell them about the drugs. Drug reps are salespeople, not doctors…Need I say more?

    I’m not saying you have to go to a psychiatrist to get diagnosed, but you should be seen by a doctor who knows and understands ADD/ADHD. For me the best treatment I’ve had overall has come from mental health experts I’ve sought out, because they typically know or should know better how to treat ADD. But unfortunately that’s not always the case. So, do some homework on doctors first. I just recently chose to discontinue seeing a psychiatrist because he was eager to push more than stimulants for illnesses and complaints I don’t even have and have never been diagnosed with either! When I’d ask him what exactly he was treating me for he would tell me ADD. But when I asked him what was the purpose of prescribing “compounded” stimulants that contain drugs other than stimulants? He couldn’t give me a straight answer. His own nurse told me on more than one occasion that “all the stimulants nowadays are tainted, that’s just the way it is” Really!? Not good! The landscape for ADD and stimulant medications has become a lot trickier. So, do some research on meds and doctors and by all means ask questions, especially if it doesn’t feel right!

    • This reply was modified 2 years ago by jwilli.
    • This reply was modified 2 years ago by jwilli.
    • This reply was modified 2 years ago by jwilli.
    • This reply was modified 2 years ago by Penny Williams.
    jwilli
    Participant

    HI there! Can you please clarify, is your doctor giving you a urinalysis to see if you are taking your Adderall?? Are they testing to see if you are positive for amphetamine, which would be the typical result for mix-salt amphetamines’, Adderall. Or are they testing to see if you have other drugs in your system? If you’re being treated for a co-morbid disorder then you may also be taking anti-depressants or neuroleptics. Correct? Did he or she explain the reason for the urinalysis?? This doesn’t make sense. I was taught in my medical classes that a urinalysis to verify patient compliance would make sense if the patient is taking a drug such as anti-depressant or antipsychotic in order to ascertain specific safe dosage and efficacy levels. Or if it’s a court ordered type medication. But simply testing to see if a patient is taking their amphetamine (Adderall) medication is very strange to say the least.

    I’ve given myself home urinalysis recently to discern what other drugs may be in my tainted stimulant prescriptions. This isn’t out of paranoia, it’s because I know some Adderall and other simulants are being tainted with other UNDISCLOSED psychotropic drugs. In fact, some of my urinalyses results have recently shown positive results for these other drugs. The kicker is the nurse at my doctor’s office even recently told me that “many stimulants are being tainted with other drugs.” No kidding she actually told me that! I appreciated her honesty, but this issue is just wrong on so many levels!

    Anyway, I’m curious to know more about why your doctor would be giving you a urinalysis. I hope you’re able to get to the bottom of it!

    • This reply was modified 2 years, 1 month ago by jwilli.
    • This reply was modified 2 years, 1 month ago by jwilli.
    in reply to: Switching meds & how to know the right meds for you? #131525
    jwilli
    Participant

    Rosalie, I was prescribed Adderall XR 30 for several years, and it worked very well for my ADHD symptoms all day. The problem however, as I’ve now also discovered with other stimulants, was the (undisclosed) change in formulation! These changes drastically decreased the efficacy of the stimulant, and similar to what you described, brought on unwanted side-effects. So, I too quit taking Adderall XR, and stopped treatment altogether for quite awhile.

    Since going back to school to finish my degree, my ADHD symptoms became so bothersome that my doctor suggested I try Vyvance. It is a different type of stimulant med. It’s active ingredient lisdexamfetamine dimesylate, is a prodrug that’s designed to turn into an amphetamine after it binds with lysine in your digestive tract. So, Vyvance doesn’t activate nearly as fast as Adderall, and there can be other issues as well. But you never know until you try something, and it doesn’t hurt to talk to your doc about it. This site is sponsored by Vyvance and maybe you could get a coupon off for trial. Best of luck to you!

    • This reply was modified 2 years, 1 month ago by jwilli.
    in reply to: My parents are blocking treatment for my son #131171
    jwilli
    Participant

    Hi, I’m so sorry to hear of your dilemma. I totally agree with what Dizzy shared with you. Your mom has no ethical or legal right to deprive your son of his stimulant medication. As it should be clearly printed on the bottle that ‘federal law prohibits the transfer of this drug to any other than the patient for whom it was prescribed.’

    As soon as you are able move out! But of course that’s easy for me to say…I sincerely wish you and your son the best in this situation.

    in reply to: Anxiety on every med I’ve tried #131170
    jwilli
    Participant

    Hello, I’ve tried a generic Adderall XR by Teva and unfortunately it tested positive for other active ingredients that aren’t labeled as being in the medicine. So, unfortunately it left a lot to be desired. I think you might be referring to the drug company Shire? They make the original Adderall XR and now Vyvance. I fortunately haven’t had anxiety problems from stimulants. I have had badly tainted stimulants though.

    If you’re new to simulants treatment let me suggest you go with a name brand if your insurance will cover it. There are a lot of sub par generics out there. Also, if it feels off or wrong, trust your feeling and if you can have the drug checked or by yourself some home urinalyses tests. I’ve found other drugs in some of my stimulants this year. There is clearly some problems in the supply chain.

    in reply to: Change in Manufacturing of Adderall XR #131168
    jwilli
    Participant

    You are right, it is creepy! As well as corrupt, unethical and in the light of day illegal. I realize this is an open post on a site that gets advertising revenue from certain drugs makers that I’ve criticized. So, with that in mind I’ll share SOME general insight on this problem as I have come to know it over the years.

    First of all, I’m sure we’re all aware of the stigma that’s attached to taking prescribed stimulants. Sad fact is, even some in the medical field are against stimulants, while others have ignorantly compare prescribed stimulants to meth. Ridiculous! Unfortunately, I’ve learned from some ethical doctors who treated me, and a few other credible sources that this illicit cocktailing of prescribed stimulants is no accident. It’s actually a “program” for lack of a better word, that was originally (back in the late 80s and 90s) touted as a patient abuse deterrent, and more importantly to stakeholders, an oversight protection for the pharma stimulant makers, and doctors to help shield them from lawsuits. I believe the original concept wasn’t designed to be nefarious, but as the cliché goes, so much for good intentions; money talks!

    As you may recall in the latter 90s ADHD became more diagnosed and stimulant prescriptions became more prevalent. So, the media started reporting that development, along with the skyrocketing college abuse of simulants too. Which made the oversight become more of a political lightning rod issue. Once that happened the MONEY “influencers”, such as pharma lobbyists, and other special interest types who’s agenda had nothing to do with good ADHD treatment practices came pouring in. But the real turning point that led to tainted simulants, and the abuse of a patient’s right of informed consent for stimulant medications wasn’t implemented until 9/11.

    As we know 9/11 and the subsequent Patriot Act changed the rules on a lot of our civil liberties, and on how communities can “police” themselves. During that period, some so-called “officials” used the opportunity to include a category of people taking prescribed stimulants as a possible threat to National Security because as they stated stimulants can cause insanity… Nevermind that insanity due to prescribed stimulant use is so rare, that NIMH and SAMSA ranks it as extremely rare side effect after dry mouth! But the bottom line is this quasi-legal system is now rife with blatant abuse. People like us with ADHD can essentially be turfed without good cause from getting real pure simulants to treat their ADHD for virtually ANY reason.

    I don’t mean to sound sinister, and I’m not a conspiracy theorist. But what I can confidently, and verifiably say is the system is seriously broken and corrupt. The only chance I see for things to change is if we speak up and collectively work together. Because my biggest concern is if we allow our stimulants to be tainted with undisclosed other active ingredients, then whose to say that other drugs won’t get tainted too. As a parent I sure as hell wouldn’t want my daughter to go through any of this medication fraud. If you aren’t informed about what is in your medicine it could seriously harm you or worse. That’s all I got. I wish you all well.

    in reply to: Battle for getting proper treatment #131074
    jwilli
    Participant

    Scotjk, I sympathize and empathize with your struggle! I’m in my 50s too, and was officially diagnosed with ADD by a psychiatrist in 1992, as I’ve had ADD/ADHD all my life. Genuine stimulant meds were a godsend and changed my life in so many positive ways. But after moving up here to Michigan in 2006, I started getting badly tainted Adderall XR. So I stopped seeking treatment for a few years and it sucked. I’ve made as many “natural” changes to my lifestyle as humanly possible but I finally went back to a psychiatrist this year and got reestablished with treatment. He prescribed Vyvance and the first couple months the pro drug Lisdexafetamine Dimesylate seemed to work pretty well. But once AGAIN the last few months I’ve received more tainted crap! How do I know it’s tainted? Well without going to deep in this post, I’ll say I’ve had urinalysis tests which showed on several occasions positives for other drugs, such as anti-depressants and anti-psychotics, and other drugs too. These drugs are not listed as active ingredients in Vyvance or Adderall, and I’ve never been informed by my doctor or pharmacist that I was being given them! This is highly unethical and in the light of day would probably seen as totally illegal. But here’s the kicker, the nurse at my current doctor’s (psychiatrist) office has been telling me recently that “ALL the stimulants are tainted” Yep, I’m not sure if she said that out of sheer ignorance or profound stupidity. But that’s what I’m being told now.

    Having said that, I truly understand how difficult it is to lodge complaints about stimulants, because of the stigma. Even today so many medical professionals are ignorant about ADHD and stimulants. The fact is I know what pure stims do and how they work, as well as what the typical side-effects can be. I also know these tainted stims don’t help my ADD symptoms, they actually exacerbate them. If they helped I wouldn’t bitch!

    If I can offer any advice, I’d say at least find a psychologist and psychiatrist who specialize in adult ADD. At least then you have a fighting chance to be heard and understood. My psychologist and psychiatrist understand my dilemma, and advocate for me as much as they can. But the problem clearly stems from a corrupt supply chain in the pharmacy system. It’s always about money first and good quality healthcare run a distant second. Or so it seems.

    in reply to: Change in Manufacturing of Adderall XR #130985
    jwilli
    Participant

    I’m well aware Suz4nn3 of the flow of the conversation by the dates next to each post…I just noticed that a few like yourself had recently posted. In fact, your initial post on September 30 “OMG I’m so glad to have found this post” sounded somewhat “rousing”, and I was glad you joined in! I too get distracted by other things in life, ALL the time! I also agree however, that we need to combine our voices on this tainted (undisclosed active ingredients) medicine fraud. I apologize for my lengthy posts. I get exited and tend to over share at times. It’s just that I have a long ADD (stimulant) treatment history, since 1992, so I know from where I speak about the tainted stimulant meds. I had no problems or complaints with my ADD treatment until I moved to Michigan in 2006 and received my FIRST prescription of tainted stimulant (Adderall XR)and now Vyvance too. So, the poor ADD-meds supply hasn’t been a perennial problem for most of my treatment history. But today the supply chain is corrupt, and that’s wrong on so many levels! BTW, can you please tell me where you live? I’d like to have an idea where the problems are at. I’m crossing my fingers that your next batch is better for you!

    in reply to: N-Acetyl-L-Tyrosine (NALT) #130959
    jwilli
    Participant

    Hi I just noticed your post and thought I’d throw my two cents in if you’re interested…I’m an adult with ADHD and I’ve taken prescription stims on and off since 1992. I also, have investigated everything that might help outside of stims. Along with lifestyle changes I also discovered in my research that N-Acetyl L-tyrosine has been found to help with ADHD. Nalt acts as a precursor for important neurotransmitters dopamine and norepinephrine. I take it once a day and can’t say it has helped out that noticeably, but it also hasn’t hurt the cause either. So, I think it is helpful to a certain extent, but not even close to the help I’ve gained from prescription stimulants, such as Adderall and Vyvance. Jeff

    in reply to: Change in Manufacturing of Adderall XR #130956
    jwilli
    Participant

    I find it interesting that the dialogue abruptly stopped over a week ago. Hmm why is that? Would anyone like to add to the discussion? Or offer any helpful suggestions that might shed more light on the issue of inconsistent efficacy, and tainted stimulant medications? I had hoped we could find some mutual answers and support on this site. I hate to sound cynical, but I’m well aware that money and certain influences can have a way of sweeping problems like “bad” medications under the rug. So, I hope I’m wrong about that and everyone will feel free to express their experiences and concerns here. For me, it’s all about restoring good treatment!

Viewing 15 posts - 1 through 15 (of 17 total)