Doctor suggested "as needed" use of meds--don't think is working

For those who want to skip the novel below which is specific to our case, what are your feelings about medication holidays or taking meds on an 'as needed' basis.  Please give me the reason behind your answer because we need to come joint accord with this issue between ADD hubby, I, and his psychiatrist & psychologist.

We are limited in doctor choices in our area by insurance, so that is a factor.  I met the original doctor who diagnosed my husband....we actually had a long appt where both of us were asked to participate freely.  Quite frankly I liked his original doctor, he seemed to come to the ADD conclusion fairly easily (we'd already done a ton of research too, and he prescribed Ritalin which was changed later to Adderall because of side effects--jaw clenching bad enough that he gave himself headaches, mid afternoon crash, and general jitteryness.  None of the side effects were such that Eric ever discussed discontinuing meds because of them.  The coach (psychologist) we were provided there was more ADD than my husband and abysmal for actually helping with anything--Eric liked him cause he sympathized with everything and had no expectations of him.....ie "You didn't keep a list of x y or z like I asked you to so that we could decide where you need help first? ha ha I didn't think you'd do it!  You do have ADD after all..."

I posted about him at the time before.....just dreadful.   Anyway my husband was transferred to a closer clinic about 2 years ago just after the switch to Adderall, and I have never met this psychiatrist, but his coach (the psychologist) called me in to join a session about a year ago and now involves me in his homework though I have not been asked to sit in on other sessions. 

About 3 months ago back before our anniversary trip at the end of October, my husband came home from his appt with his psychiatrist (once every 6 months) and asked what I would think of him taking meds only on an 'as needed' basis.  Quite frankly I am not a fan.  I am also not a fan of weekends off of ADD meds.......if your brain needs an extra chemical, why would you deny it sometimes?  My husband heard me out, said he wasn't really tied to the idea either way, but that his doctor seemed to think that since he is mild and functions so well that perhaps he could start thinking of getting off meds. 

I tried to be calm but was a bit spooked......why mess with something working so well.  I'd assumed his doctor was an ADHD specialist but then Eric said he doesn't think so and that the DR said that it wouldn't hurt anything to get off the meds as most of their effect was PLACEBO!??!  I mean what the heck???   His current psychologist, who functions as a coach, is not listed as an ADD specialist, but she has an ADD son and really seems to know her stuff.  She assigns great homework for my husband to do between visits and doesn't let him off the hook if he has some lame excuse why he didn't do much with it.

I was completely thrown for a loop and all my research has basically said 'give your brain what it needs and don't mess with holidays etc' so I said it is obviously his decision and I would support what he chose, but x, y, and z are reasons why my understanding is that you stay on meds.

We talked about the options pretty intensely and while Eric didn't seem to feel very emotional about being on meds vs not being on meds, he seemed a little hurt at how anti off meds I was.....as if I was implying by my attitude that he couldn't handle it.  Which is ridiculous as he was 35 before he started taking meds and he managed a degree without, BUT things were going so well and smoothly and the balls were mostly being neatly juggled and I am not one to mess with a good thing.

It wasn't until these conversations that I found out the doctor felt that this was the direction we should be moving in ....to meds 'as needed' and then possibly to no meds at all.  After this came up Eric said he's always gotten a vibe from this doctor that his ultimate goal would be to take Eric off meds!??!!?  He never told me this.   From Eric's description, the doctor seems to think the meds are for keeping you on track while you develop tools and tricks to get everything done.  Then you get rid of the medicine......like you are cured??  like now you can cope w/o?? I don't know....I don't really understand.  I mean we all know ADD is incurable so why doesn't he seem to realize this?  This seems very much to me like taking a diabetic off insulin because their blood sugar has been steady...just no sense at all.

Eric saw his coach just after our convos about going 'as needed' or possibly trying no meds at all during 1 week of our 2 week vacation...I was willing but reluctant.  The decision they came to was not to risk messing up any part of our anniversary trip (RELIEF) and that sometime in the future if he wanted to experiment with 'as needed' meds he should do so.   I don't think she meant on his own when the fancy struck him, but that is how he took it and without informing me or her, he started taking them whenever he felt like it around mid to late November.

I didn't clue in until we'd been having a rough time...Eric was spacey and not like himself.  I thought it was delayed reintegration from vacation reaction at first...and Eric didn't seem to have any answers for why he wasn't functioning as well.  FINALLY something clicked and I asked about his meds and he told me that he was only taking them when he felt he might need them--amounted to about 2x per week.  I was really angry he did something like this with no one monitoring & I was especially angry that the response to "What is going on, babe? Why are you struggling so much? What can I do to help?"  Were all met with "I don't know".   He claims it never occurred to him that it could be med related because he never feels any different on or off them.  He thinks he is accomplishing just as much too regardless of how little he is getting done...maybe because it is the same amount of effort without meds to just think of doing it??  I have no idea.

So shortly after our argument about this, he saw his coach who told him he went about it all the entire wrong way.  That he needed to let me in on the schedule so that I would be aware of tracking how he was doing day to day on a meds/no meds basis.  She had told him she thought he could try 'as needed' but that he went about it entirely wrongly. Now when she tries to find out how it is working, there is no info at all except a very non self aware ADD person sitting there saying that he thought he was doing well but his wife seemed to think he was dropping the ball.

I have been wondering all along if it was really the doctors pushing this or if it has been Eric, but no matter how subtly I question him, he does not seem to be emotionally tied to taking meds or to being free of them.   He was up for seeing how he would do without meds, but now the concern seems to be that he really can't tell a difference on or off.  I don't want him to take them just for me, but he is SOOOO much better on that & it isn't that he doesn't believe me when I tell him so, it is just that he has no frame of reference to say "You are right x y and z are much better on meds".

I think this lack of self awareness is part of the reason his doctors don't think the meds matter.  Eric had been taking 20mg in the morn for a while, but he was feeling overwhelmed sometimes. So the doctor added an extra 10mg in the afternoon, and when I asked if it helped he said "I don't feel overwhelmed anymore but I don't notice anything different"  Like WHAT else are you expecting to notice if it solved your problem??   But the last time he started acting all spacey was because he was adjusting to the doctor taking him off that extra 10mg.  I asked why and he said it didn't do anything for him.  Umm ok. My husband claims there was very little difference when he stopped taking the extra dose, but I assure you everyone else in his life noticed that he all of a sudden had something diff going on. EVERYONE was asking me what was wrong with him.

So anyway, after reiterating to Eric every point I made about why it was a bad idea to change the med schedule with no one knowing about it, she assigned homework for us both.  Eric has a goal of trying to step up and taking control of situations since his natural default is to be passive.  Both of us were to keep lists of what he did well at this and what he did badly at this for the month, and both of our report cards were to be given to her at the next appt.  The problem I see with this in hindsight is that he's been hit or miss with the med schedule (just found that out he's struggling with not having it as any sort of routine--should have seen that coming) so we couldn't/didn't know to track his accomplishments along side whether he'd taken meds or not.

Interestingly almost all the stuff on Eric's GOOD list, I also had on mine (and I didn't write mine up the night before like he did :BIG EYE ROLL:) though I had many more things than he did.  I had about 10 EXCELLENT items.  I also had a list of 4 items that I listed as GOOD because he didn't really step up, but when he was asked he jumped on them pretty quickly.  But our BAD lists weren't very similar at all.  I had another 10 items including the one big argument we had during the month--he hadn't even listed that item.  One fight all month because of something he didn't step up on, and he didn't list it on his BAD list??

Anyway the coach when she read through the lists and talked them out things there is a strong correlation between the items on his BAD lists and not having medication steadily in his system.  She asked what he thought, and he told her that he honestly can't tell anything but that I certainly can so he doesn't know what to say.  She set up an immediate appt with his psychiatrist to evaluate the meds, which was supposed to be today but he forgot and double booked the day, so it is now rescheduled for next Thursday.  We have the same assignment for the psychologist for the coming month with the added item that I am putting in whether he took or did not take his pill, BUT the problem is that the meds appt will be before much data is in on this. 

What do we do?  Do I trust him to handle it even though he seems completely unaware of how much less he accomplishes without meds?  Do I ask to meet with the doctor also, or does that look like a controlling mate?

THANK YOU FROM THE BOTTOM OF MY HEART FOR ANY SUGGESTIONS.......actually just for reading the whole thing to anyone who did :)

Going without meds

First of all, I can't imagine what his any of his doctors are thinking. If it ain't broke (and it sounds like it wasn't) don't fix it. I think the goal of ADHD meds is to correct the problems (memory, inattentiveness, whatever) without making the person FEEL different. During a brief trial of anti-depressants I found that I really did feel like a different person (and not in a good way) so they took me off of them. The object is not to change the person's basic personality but to help control the symptoms. I can also see where something that is not a routine part of an ADDers daily routine would get forgotten even when it is "as needed."

I have experience with this with my husband. He had a job as a peer specialist, which is a person on a mental health team who has a mental illness and is successfully managing it. But, even with meds for depression and ADHD he wasn't perfect. His notes were inconsistent, he lost his debit card and his keys, etc. We figured mental health professionals would accept the occasional ADHD-related lapse but they didn't and he lost his job, and with it, his insurance.

I got him to go to the county-run mental health clinic. The person he sees there has decided he doesn't have ADHD, that all the forgetfulness, procrastination, etc. is caused by his depression, and keeps him on higher and higher doses of anti-depressants and he gets more and more depressed. It has gotten to the point that I can't stand to live with him any more and am making plans to leave. I simply won't survive working while he doesn't. Since I work from home, I am incredibly conscious of his channel surfing, sleeping until all hours and doing nothing to maintain our home while I work on this damn computer 7 days a week to support us. So for me, the lack of ADHD meds and treatment will lead to the end of my marriage to a man I still do love, but can not live with. I don't know what will happen to him, he can't pay the rent here on his unemployment but is not looking for a job.

My advice to you would be to fight as hard as you can to keep him on his meds. My husband's and my world fell apart without his.

I completely agree

First of all, I can't imagine what his any of his doctors are thinking.

I know, right?  So confused about this.

 

If it ain't broke (and it sounds like it wasn't) don't fix it.

Exactly....had really been smooth sailing around here.  To be fair it isn't like the bottom has completely fallen out as we do have some decent safety nets in place, but the difference to my peace of mind to have him mostly handling things to now having it a bit up in the air is a big change.

I think the goal of ADHD meds is to correct the problems (memory, inattentiveness, whatever) without making the person FEEL different.

I also agree with this.  I didn't think it was a negative thing that he didn't feel different......I am not hoping for a zombie here!  If he felt like him self and could accomplish what he'd agreed to, I saw that as a win/win. 

I can't deny I wish he had a bit of XYZ's feeling of fuzzy headedness in the morning to make him want to be on his meds, but I like that he can take meds and not feel like something in him has fundamentally changed.

I can also see where something that is not a routine part of an ADDers daily routine would get forgotten even when it is "as needed."

This is the biggest reason that I see all this as a crock. He has inattentive ADD.  He has a poor memory.  You are telling him it is a good idea to toss his routine and go with what feels best, even when he has told you he feels no different.  How is he supposed to decide it if is needed or not?

Is this something that doctors do?  Suggest 'as needed' to be sure you aren't getting a placebo effect, or to make sure you still need meds?  I mean I am baffled by this....completely baffled.

And if there is research that says 'no one does this anymore', then how come we are dealing with ppl that seem to think it is a reasonable & possibly even inevitable part of care?

In my opinion, any doctor

In my opinion, any doctor that would do this and not at least consult with those around his patient...especially those living with them and most able to accurately describe how the meds are helping/are not helping..is just wrong. The GP and my husband's psychiatrist both were eager for my input and our counselor URGED me to go along with him and give my input. Hell, the lack of self-awareness of the chaos they sometimes create is a big part of ADHD for some people...what the hell was this doctor thinking? I can fully understand why your husband doesn't see a difference, because the things he is 'dropping the ball' on are probably not 'important' to him or priorities. How might this be affecting his work too, that he's not aware of? If he were to stop taking the meds and something REALLY obvious to him, like if he were all of the sudden unable to play the guitar (if he plays, just using an example), don't you think he would be eager to take them everyday so he could do what was important to him? His ADHD causes him to have issues that, at the very least, cause added stress to your marriage. Why would anyone choose 'added stress' over 'managed symptoms'??? ADHD is not curable and medication is/can be a very important leg in the treatment of the symptoms. The doctor sees him once every 6 months...how can he  make such a huge decision without consulting other people who can give some valuable insight into how the meds have helped your husband. My husband didn't feel/see much change when he took them either...and although he was hostile and aggressive when he took them, I did see quite a bit of improvement in his impulse control issues. Even his best friend, who is also his employee, said he was so much better 'controlled' on the meds, when it came to the work environment. 

Go to his doctor with him...before this gets out of control. 

100% agree

Thanks also for your response.  Sometimes there are a little slow in coming and when you feel up against a deadline it makes you (or at least impatient ME) feel a little frantic.

In my opinion, any doctor that would do this and not at least consult with those around his patient...especially those living with them and most able to accurately describe how the meds are helping/are not helping..is just wrong.

I wonder if it has something to do with HIPPA?  I mean I just don't see how treatment involving the entire family (which is what you have to have with ADD) can entirely be based around what one less self-aware person has to say.  I mean I wasn't in love with him going to all the appts alone when he was medicated, but especially is his view skewed now.

Also I don't want him taking meds because I say it is necessary.  That makes me look like some kind of controlling witch I fear.......but no one else sees this from the angle that I do either.  I am not sure how to handle this!

I can fully understand why your husband doesn't see a difference, because the things he is 'dropping the ball' on are probably not 'important' to him or priorities.

Very good point that I hadn't considered in that way

How might this be affecting his work too, that he's not aware of?

Yikes this one gives me a bit of a sick feeling in my stomach!

If he were to stop taking the meds and something REALLY obvious to him, like if he were all of the sudden unable to play the guitar (if he plays, just using an example), don't you think he would be eager to take them everyday so he could do what was important to him?

Yes I do.  He is honestly not opposed to taking meds or not taking them....he doesn't seem to care a lot though I do have to say I think he really cared to have the trial to see what happened even though he hasn't expressed it that way.  Since he felt fine, I really think his hope was that he'd go off meds, be still just as high functioning, and that would probably make him feel 'cured'....I don't know. 

I do know that he seemed hurt that I felt even trying was a bad idea, and I agreed to support a trial, and I would have fully supported it if only it hadn't been done behind my back with no warning/notice.  He has apologized for that many times. I can see what he was trying to accomplish.......he saw no difference and expected me to see none either and since I didn't know he was without meds, I wouldn't have my pro-med bias affecting my decision on how great he was doing.  

The problem was that he wasn't doing great.....and he didn't know it.

ADHD is not curable and medication is/can be a very important leg in the treatment of the symptoms. The doctor sees him once every 6 months...how can he  make such a huge decision without consulting other people who can give some valuable insight into how the meds have helped your husband.

This is the sticking point for me right here.  You don't make decisions based on the perception of a person whose perception is flawed.  This is basic right??  I do know his psychiatrist and psychologist consult together.  I like his psychologist a lot....I have been brought into his care both through having a session together and through his homework.

But I see it frankly as....well my husband is more high functioning than the majority of patients to these ppl are meeting with daily.  His ADD is on the mild end of the spectrum, so even if they only treated ADD patients all day (and they don't as they deal with the entire realm of mental health issues), there is probably a point where they thing "this guy is doing AWESOME".  I would agree.  I posted here about how awesome we were doing..........it was a very very great time, but I have also posted about how even at his worst and unmedicated we weren't miserable.  We were never heading for divorce.  I didn't feel especially appreciated or supported, but I did always know he loved me; so I am afraid they are just thinking that Eric unmedicated and untreated is better off than a lot of ppl.  I can't totally disagree with that, but why is it wrong for him to be doing awesome?!

I feel they aren't seeing HIM as much as they are seeing HIM compared to many many worse ppl they see daily.  Does that make sense?

Go to his doctor with him...before this gets out of control.

I believe I will need to join this appt...at least for the part where they discuss meds.  But it seems just such a line between 'trust him to manage his care', 'trust his medical professionals', ' & 'advocate for where you feel like things are going off track'......you know?  

I don't ever want anyone to think.  'Here was a high functioning man whose controlling wife insisted he take meds he didn't need'.  I mean everything about that picture turns my stomach up to an including being mischaracterized by ppl I don't even know--not even sure what that says about me.

There is No Way I would try this...

I don't even understand this concept. Why would I want to be more handicapped on some days than others. One of the best things I can do to limit my ADD symptoms is set routines and repetitive schedules. I don't like how I feel as the meds wear off. Would I want to be "In Shape" on some days and "Out of shape" on others, until I decide that a "Shape Up" is needed. I don't think so. I guess if the meds were causing health issues I might consider a "As Really Needed" system, but until that day comes I will take my Adderall every day and right on schedule.

UPDATE: Meds "as needed" appt was today--HELP!!!!!

First of all thanks for ALL the responses!  XYZs I particularly appreciated your point of view as the spouse with ADD, but unfortunately you don't have the same point of view as my husband.  It seems he just frequently doesn't feel better when he is taking meds....he doesn't always notice the fog without meds so he doesn't really ascribe clarity to taking meds.  His actions make it obvious that he is more clear with meds, but physically the only consistent difference he feels is that on meds his jaw clenches and off meds it doesn't.  Therefore, he was interested in trying going off....or actually going 'as needed'.

I met his doctor this morning........it was....interesting.

The most positive part of the experience is that he wanted me to come in to the office.  Even though Eric can see my point in being involved in his care and was willing to have me insist on coming in, his preference was for me to send a note with my experiences and let him handle it with the doctor.  I didn't like that solution, but I was prepared to support it and stay in the waiting room unless called.  I guess Eric asked if the doctor wanted to see me and the doc was really excited. 

He'd never requested my presence in the past (didn't realize I was waiting for an invite) and Eric never asked him if I should be there, so E just assumed this doctor didn't involve family.  Eric honestly asks questions like he is being charged per word.....ie he asks as few as possible and seldom clarifies answers, so that is a challenge for us too. 

I am now deputized by his doctor am expected at all further appointments...........this would be more positive if I wasn't halfway convinced that his doctor needs a doc or two of his own.....

1.  I think his doctor is ADHD (capital H), and he made a couple comments that led me to believe that in addition to his all-over-the-place conversation.  Comments like saying "we" when talking about hyperactive kids, etc.

2.  His doctor said he is not anti-meds and claimed to have never said that the affect was placebo of ADD meds.  My husband said later those exact words could have been his interpretation of what the doctor was saying, which sounds like a cop out until you meet the doctor.  Easily 1/2 of what was said in the 40 minutes we talked to him was up for interpretation.

          After I asked about whether he felt meds were placebo, he gave a very good explanation of what the meds are supposed to do to help the ADD brain.  It sounded like what I have read in the books, but then he took a turn and acted like stimulant meds were like SSRIs.........I mean huh???

3.  He made several comments (many contradicting) about why my husband might not have ADD at all. 

               A.  He called the doctor who diagnosed my husband 'an idiot' because he has no hyperactivity.  When I said he was diagnosed inattentive type, he first acted like that isn't a type at all and then said that anyone who wasn't hyperactive as a child and was able to get As throughout grade school cannot have ADD.  My understanding is this is patently false, and as soon as Eric came up against material at the level of his current understanding (verses him having a head start in being an early reader, etc) in high school and college he struggled mightily.

               B.  He said first my husband isn't inattentive.  When we each gave many examples of his inattentiveness, he said yes & the fact that he is inattentive means that he does not have ADD.  I thought he might be going to describe how inattentive might not be considered ADD in the future because they are discussing it being SCT , but he just dropped it.  Like his entire statement was being inattentive means you can't have ADD...the end...and then he jumped to another subject.

4.  He claimed on no evidence whatsoever that my husband is probably bi-polar cause his mother is and maybe his sister is because bi-polar is a co-morbid of ADD.  He also acted like this news about his mother and sister was brand new when Eric says he has told him about them when asked his history at least twice.  

It is true that his mom is diagnosed bi-polar and his sister probably soon will be, but they both also show many signs of ADD and he shows no signs of bi-polar.  Why would you assume he has the exact things they have.....esp if you have never met them?

When we mentioned in surprise that he was talking bi-polar that Eric has never been depressed nor has he ever had a mania, he all of a sudden started acting like what Eric has is ADD.  I mean bi-polar never came up again, but he did sorta act like the meds do the same thing and they really really don't.  I mean I am not insane here right??

5.  He also said the equivalent of the DSM providing criteria and people receiving various diagnoses based on that is a bunch of crap in that we are all a little bit of everything.  

Course he also agreed that some people are impaired enough to need medicinal help and that if the meds help you should take them.  He said he has no prob prescribing meds if that is what was helping when I made it clear I felt things are not as functional without the meds as they were before.

6.  He first called counselling a bunch of bullsh!t (that was his word!) and maybe I had a horrified look on my face cause then he back pedalled to "it has it's place, but I don't deal with that stuff.  I am an MD and I deal with biology".  I said "Right, and the biology says we need to be sure our bodies have what they need, right?"  He said right........but I still don't know what that means since diagnosis is bull, and counselling is bull, and sometimes meds were bull and sometimes not.

 

Heads were spinning at this point.  He wrote out the script, said take the lowest dose that works for you--Eric had been taking 20mgs 1 time per day in the morn, but I think he wrote it for 2 15mg tabs per day so that Eric can titrate it as he wants on his own.  And we thought he was on generic Adderall but he said they can't prescribe Adderall due to cost, so he is on something that is 1 part Adderall and maybe 2 parts Ritalin?? 

Not sure I think my brain had shut down.  He asked if there was anything else, and we just left shell shocked.

I liked him as a person....but as a doctor he was just baffling.  Eric says he can never figure out what he is talking about and has no idea what he is saying 1/2 the time, and I had to agree with him..  Many things Eric was saying about not really getting what was going on with the doctor REALLY make sense now.

At one point he was just tossing out every piece of information he seemed to know about the brain, so I asked him "So what is your suggestion for what we do now?"  He laughed and said "I think you need to relax."  I mean he might have had a point, but he thought that would solve all our issues??  He basically said "Communicate".  If I am reminding too much for Eric, just nicely say "I need you to relax"----And if Eric isn't doing something just nicely say "Baby I need you to do this"--I mean if that worked why would anyone need him? LOL 

And I am not even sharing the personal experience from his own marriage that made no sense but was supposed to teach us a valuable communication lesson. 

So suggestions..........where the heck do we go from here!?!?!?  Eric has a coaching appt with his psychologist the end of next month, and I think we need a game plan.

Oh and the doctor says Eric now has to see him every month in order to keep his prescription.........I understand this is common, but he has never had to meet with the psych more than 2x a year. 

I am exhausted!!!  And confused!!!  By the end of the appt I was thinking "maybe we should go off meds just so we don't have to do this ever again"  No doubt that is some of what Eric was thinking in agreeing to go "as needed" also.

 

 

Wow...

Your description of the doctor's visit made my brain hurt :) I take generic Adderall, it say amphetimine salt combo, I think. My GP originally said I scored high on the bi-polar test, then sent me to the psychiatrist who diagnosed my inattentive ADD on day one.As far as visits go, I see the doc twice a year and have to call the office for a script pickup every month. I cannot believe this guy went on so long. My appointments last 15 minutes and he shuts it down right away. I hope this guy did not short circuit your brain too badly ;)