Is ADHD actually a sleep disorder?

[Basilico]

@keenly , still waiting for a reply to this:

My husband grew up in Italy, where his mother cooked every meal from scratch. He did not eat anything sugary or processed. In fact, he actually hates sweet stuff, desserts and candy make him nauseous. And even now with all our health problems, we still cook almost all our meals from scratch using high quality organic ingredients.

It was not until he was an adult and living with me in the US that he realized he had ADD because it is not a recognized diagnosis in Italy. His whole life he suffered and forced himself to cope with it through his sheer willpower.

In the US, he saw a psychiatrist, who confirmed his diagnosis, and prescribed ADD meds. When my husband took the first pill, he said it was a mind-blowing experience, because for the first time he understood how insanely chaotic his brain was.

On medication, he said he was able to have linear thoughts, just think about one thing at a time which he’d never done before in his life. Normally he thinks of many things simultaneously in a somewhat confusing mess. On meds, it’s like being alone in a quiet room, focusing on one task, off meds it’s like trying to think about, fix, and deal with 10 unrelated problems in the center of a crazy party with blasting music.

He ultimately doesn't tolerate those meds and hasn't been able to take them in years. If he were able to cure his CFS tomorrow, he still wouldn't be able to hold down a traditional job because his ADD is too extreme. It also causes symptoms that are sometimes similar to OCD; when he gets a thought in his head, he can't think about anything else until he researches or deals with that thought.

On the positive side, he absorbs and remembers information like a sponge, he has a scary high level of intelligence (he's never been tested, but I think it's likely his IQ is extremely high), and he has an extremely creative and out of the box approach to problem solving and can come up with novel solutions to any problem.

His ADD is very much real, and something he must fight against every day of his life. You claiming that it is a diagnosis that doesn't exist is the same as claiming CFS doesn't exist...extremely ignorant and just plain wrong.



Big Pharma makes tons of money on blood pressure medicines...does this mean that blood pressure/heart problems don't exist???

 

[boombachi]

@Silencio, it is interesting that you feel these symptoms appeared with onset of ME. 2 members of my family have recently been diagnosed with ADHD and my dad has said he thinks he probably has it. I recognise these traits in myself and my son (and my dad keeps saying how much my son reminds him of himself as a child).

My experience is that my illness gives me some relief from the racing thoughts and insomnia. Not much of a trade but I'll take what I can get. When I struggle to focus because of ME symptoms it is more a case of being blank. On my better days I will be deeply focussed on something else. I am a master at holding conversations without paying attention which my kids love to take advantage of.

Sensory sensitivity is also a feature of ME and ADHD so maybe some of the same systems are affected.

It might be interesting to hear from anyone who takes ADHD meds on PR and how it affects their ME.

 

[Basilico]

It might be interesting to hear from anyone who takes ADHD meds on PR and how it affects their ME.

Before getting CFS, my husband could take his meds (Dexedrine) with no problem, but he generally only used it once/week. After getting CFS he could no longer tolerate those meds, they gave him excessive rebound effective with a lot of palpitations, tachycardia, etc... and they seemed to work for a shorter amount of time.

His ADD is significantly worse if he hasn't slept well.

 

[MEPatient345]

@boombachi I can't say if my symptoms are the exact same as what it feels like to have ADHD, since I've never had it. But they are what psychologists have measured and described doing cognitive testing. It's gotten worse the longer I've been sick. But my inability to focus, retrieve and retain information is part of my brain fog and sensory sensitivities, which I assume ADHD patients probably don't experience? I go blank a lot too, like you. I don't have racing thoughts anymore but I used to have that brain on fire wired feeling where random words and images would cycle through my mind constantly. It calmed a bit w aggressive rest.

My MECFS doctor in New York had wanted me to try adderall or something similar, but I was hesitant to put a stimulant into my body given my system is already over-sensitive. I know some other patients have tried adderall but most say it gives them temporary energy that sometimes has payback so isn't worthwhile.. would be interested in this other drug and how it might work for us.

 

[Basilico]

But my inability to focus, retrieve and retain information is part of my brain fog and sensory sensitivities, which I assume ADHD patients probably don't experience?

I, myself don't have ADD, but from my experience with my husband (and the TONS of students with ADD/ADHD I had over the years as a special ed teacher) I can say that rather than having a lack of focus, there is typically an excessive amount of focus, but often on the wrong stimulus. In a classroom, it might be that a student is paying an extraordinary amount of attention to what's going on outside the window, on/in the desk, other students, but not on the lesson/work. Interest and motivation play a huge role.

Attention on 'uninteresting' things can happen, but often can only be held for short periods of time or there needs to be some type of reward. With my students who were more extreme, I'd give them a math task (3 problems instead of the 10 or 20 the rest of the class was doing) and after those 3 problems, I'd give them an unrelated math challenge that was highly engaging, or have them get out of their seats to do something physical like pass out papers.) Then back to 3 more problems. In short spurts, they could focus fine, and as long as they had a short break, their brains didn't get overloaded with trying to focus for too long on something that was draining.

My husband has no problem focusing on things he finds interesting or challenging. He absorbs information like a sponge and has excellent recall for extremely detailed and highly complex information as long as he's interested in it or is in some way motivated. For example, he spent about a month researching and learning about the methylation cycle so that he could understand what protocol made sense for us to do. He didn't find the methylation stuff particularly interesting, but he was highly motivated. It must be said that he did get very burned out as a result of all his research, but by the end of it, I think he understood methylation better than many doctors!

When he's in a state of concentration, he can not handle any additional stimulation, so if he's reading, I can't even ask him a question because he is unable to shift focus even temporarily.

Once he's not interested or challenged, he has to force himself to maintain even minimal attention, and doing that for a prolonged period of time will make him crash. Probably because it puts him under prolonged stress. He doesn't suffer from sensory overstimulation, and as a general rule doesn't seem to get brain fog (unless he's burned out from excessive research or trying to do boring repetitive tasks, which are particularly torturous for him).

With ADD, the inability to retrieve information is often not due to a retrieval issue; it's usually that the person never knew the information to begin with. Say a student in class is staring at the board, but they are daydreaming and not paying attention to the lesson. Later on, they won't know what to do, not because they don't remember the lesson, but because they never absorbed that information in the first place. When people with ADD do absorb information, they typically have excellent recall.

What you're describing has some elements of ADD, but several things that sound more like typical ME cognitive issues. It would be interesting to see if the narcolepsy medicine helped you.

 

[boombachi]

@Silencio it could be that the same areas of the brain are affected but in different ways. That seems to be what your tests show. Sensory sensitivity is common in ADHD and autism. What do you think might be different about mazindol? It is another stimulant according to google. I have tried illegal stimulants since becomming ill and they just made me sick and didn't keep me awake either.

@Basilico you sound like a wonderful teacher. And your husband sounds wonderful too doing all that research. That over focus comes in handy sometimes by the sounds of things. Did you have an 'Ah' moment after his diagnosis or did you already suspect?

 

[Basilico]

@Basilico you sound like a wonderful teacher. And your husband sounds wonderful too doing all that research.

Thank you for the compliment...I miss teaching very much, and he amazes me everyday with the superhuman feats he accomplishes.

That over focus comes in handy sometimes by the sounds of things. Did you have an 'Ah' moment after his diagnosis or did you already suspect?

I'm assuming you mean his ADD diagnosis, right? Well, at first, it didn't occur to me that he might have ADD, which in retrospect seems really stupid since I taught so many kids with ADD. I was seeing him doing stuff at home that was just really wacky - I could go in the kitchen and follow every single thing he'd done that day by following all the open cabinets and drawers. Originally, I just thought he was being sloppy or lazy.

He didn't have many expensive things, but the few he had (laptop, iPhone) he took meticulous care of. But I'd sometimes find them balancing precariously in very weird places, which clued me into the idea that it might not be a laziness issue, and once I started thinking about his character I realized that he wasn't a lazy person at all, so that didn't make sense as an explanation.

He explained that as soon as he completed an action (like getting a fork) he was already thinking of so many other things that it didn't even register in his brain that the drawer was still open - he could be looking right at it and not see it. In fact, it's a pretty common occurrence that he'll be looking directly at something and and ask me where it is, because he's concurrently thinking of 10 other things and literally does not see what's in front of him. We have a running joke that his brain is a computer running multiple operating systems simultaneously and when he gets caught in one of his ADD loops it's due to his RAM being insufficient (man, we sound like such nerds!)

When I found his beloved laptop balancing on the edge of the bathtub (he was horrified when I pointed that out) was when a lightbulb sort of went off and I had him look through an extensive online questionnaire to gauge whether ADD might be his issue. He scored something like 99% chance of having ADD on that questionnaire. He was shocked when answering those questions, because he had always assumed he had an unusually messed up brain (even though he was so smart) and couldn't understand why certain things like repetitive tasks were painful for him to concentrate on.

Just knowing that there was a legitimate diagnosis for why his brain worked the way it does gave him a huge sense of relief, it helped him to see that a lot of his issues are not his fault, and I was able to use a lot of my teaching strategies to help him (and improve our relationship!). Now, I don't ask him to do multiple things at once, or ask him to do something if he's in the middle of a task already. Little things like that make a huge difference.

I also find using a timer to be an extremely valuable tool (which I also used with some of my students) - if we know he's likely going to get completely absorbed in researching something, he can decide ahead of time how long he wants to devote to it, we set a timer, and when it goes off, he decides if it makes sense to keep researching or take a break. When he's focused on something, 5+ hours can go by and he doesn't realize how long he's been researching and it doesn't even occur to him to check the time.

 

[boombachi]

Yes I did mean when ADHD was diagnosed. I recognise a lot of what you are saying @Basilico. I grew up in a house like this. It wasn't until my niece and brother were diagnosed and I was trying to figure out my son's unique way of doing things that it started to fall into place. I have not said it to anyone in my family, but I think both my sisters also have similar traits. I remember my sisters boyfriend telling me that she always leaves all the cleaning stuff out when she does the cleaning. I do the sames and its only because i go onto the next job before finishing the first. My mum spends her days pottering around the house leaving destruction in her wake too. She never puts anything away and uses her dining room table and sofa as a filing system.

I can view all these things with affection now I understand it, but we have all individually been through some dark times which is why I think it is so important that ADHD is recognised. Medication helps some and for some, an understanding helps them cope. But its also about recognition that you are not lazy, naughty thoughtless.

I have been touched to hear how you and your husband support each other with life's challenges. I too am lucky with the partner I have found.

 

[Basilico]

@boombachi , thank you for such a kind reply - I enjoyed reading about your family, too!

Hopefully, no one minds that I keep writing about ADD, since this thread is about a narcolepsy med for ADD.

I wanted to mention that it if you have ADD, it is possible to train yourself to do certain things to leave less destruction your wake, but it takes a lot of effort and practice. It's important to have certain routines where specific actions are always performed; this eventually leads to these actions being automatic instead of being a cognitive task.

For example, for a long time, my husband had a habit of leaving his dirty dishes/glasses around the house because once he was done eating/drinking, he didn't "see" the plates or glasses. Over time, I trained him to immediately put his stuff in the sink the moment he finished with them, so that it became an automatic response to finishing his snack or drink. This took a very long time, but eventually he developed an association between taking that last bite/sip and putting the used items in the sink.

I also had to train him to not put something he just rinsed in the sink on top of a stack of dry dishes...he just didn't see those dry dishes sitting there, waiting to be put away. Over time, he trained himself to actually look at what was in the dryer before adding something wet.

These probably seem like really minor things that most people wouldn't think too much about, but for someone with ADD it takes a tremendous amount of effort to train themselves to do these small things. Once they're trained, it takes much less effort because it seems to get imbedded in muscle memory. So if you or a loved one has ADD, it is possible to improve certain areas with routines; it will just take a lot of practice and reminders and patience.

And there are certain things that you just have to accept for what they are. He is a really excellent cook (he learned from his mother, who's father was a chef) but he CAN NOT clean a single thing he's using while cooking. When I cook, I typically wash things as I use them to avoid a huge sink of dirty dishes by the time I'm done cooking. I've tried to train him to do it my way, but he's said that he can't do it because if he starts washing something, he will completely lose track of what he's cooking - multitasking for him is impossible.

So I don't badger him anymore about the dirty stuff he generates when he cooks. He rarely has enough energy to cook elaborate meals now anyway, but when he does, I try to stay on top of washing things so that he can focus on the cooking and there isn't a disaster in the kitchen when we're ready to eat. People with ADD tend to be highly inventive and creative, and the mess they leave is the trade-off, it's not intentional.

 

[MEPatient345]

@Basilico i also wanted to say thanks for explaining ADD so well! It's very interesting and will make me have more patience for one of my nephews who exhibits some of these traits.. It sounds like you were a great teacher and are a very empathetic spouse!

@boombachi I think my symptoms are more typical ME cognitive problems, but it's interesting that on qEEG they show up as similar patterns to ADHD.

 

[Basilico]

@Silencio , thank you!

I would like to also mention something else. The last I heard, ADD is no longer diagnosed separately from ADHD; everyone is now labeled "ADHD" regardless of whether hyperactivity is present or not. I have to admit that I don't understand or agree with this change, and I can't bring myself to say that my husband has ADHD because he isn't remotely hyperactive.

So I continue to use ADD because I think it's more accurate, even if there isn't a "deficiency" in attention, it's just that attention is often incorrectly allocated. Having an actual lack of attention toward anything whatsoever is a completely different issue than having a lot of attention focused on the wrong stimulus, so I think that ADD is a bit of a misnomer.