Need Dex advice to help my care provider – appt in 3 hrs

[billd]

Sorry, in a bit of a hurry – gotta get to work, have appointment in about 3 hours with care provider at Mercy Mental health to evaluate 2 weeks on dextroamphetamine. She had never prescribed it before, but since I wasn’t getting anywhere on Concerta or Ritaline (sp), I suggest we try something a bit different.

I was on 2 20 mg adderall xr for a little over a year. I have borderline narcolepsy – they are calling it officially EDS. I yawn a lot and can actually fall asleep doing almost anything, but it was a point shy of being official narcolepsy. A noted neuro-psychologist (note that they don’t/can’t PRESCRIBE meds, they diagnose and use other methods to treat, but can’t recommend or presribe) – anyway, this Dr. Campbell, who I respect a LOT, diagnosed me with severe ADHD and social anxiety. I was also diagnosed with EDS by a “sleep doctor” – I underwent all the tests, including a sleep-over with something like 16 wires on me. WOW, I start REM within minutes! In fact I can be in both worlds at once, I start to sleep and as I’m going into sleep, I am already dreaming! How cool is that? Not very…….
Sleep doctor said MORE ADDERALL – she’d give me up to 60 if it was up to her. The other gal prescribed a 20mg xr when I got up, and another a few hours later, 2 20mg xr a day. It got to the point it wasn’t helping the sleep part – EDS returned, I got sleepy at the drop of a hat, really wantted naps. And I noted a reduced effect on the ADHD, although it never did a LOT for me, it was of at least SOME help in some areas – but I never did have a “gee, this is much better” moment – never did.
So I suggested to the Mercy mental health (I think they call themselves mercy behavioral now) we try something that’s a departure from the other stuff-  I’d read some people did ok with the dex stuff and since it was for narcolepsy too – it might help the EDS. So she had to look in a couple of books to figure out how to prescribe it. She wrote it for just 2 weeks worth of 2 10mg pills a day. Glad I read the pharmacy sheet as they said to take them 4 to 6 hours apart. Gee, it just said take 2 a day on the bottle! I may have taken both at one time – actualy I did and decided – oops, that ain’t right! SO I read the pharmacy materials, said 1 at a time, 4 to 6 hours apart, etc.   However, that’s 1 at 5am, another say at 10am, or 11 if I don’t mind feeling tired for a while, and then what about afternoon/early evening? I’m ready to crash and nap by mid-afternoon again.  I think I should mention that I have weird eating habits – I drink a lot of soda (we call it pop here), like diet coke, diet pepsi and other stuff – which is of course acidic. CAN THAT CAUSE PROBLEMS? The ENT says I have too much acid in my stomach and it’s causing me chronic throat problems although I complained of that BEFORE I started on increased soda/pop consumption – I’ve had lumps in my neck for years that prevent me from sleeping on my back. I can’t do it – things close off and I can’t breathe – so I MUST sleep on my side or at angles that are anything except flat on my back. So I’m not so sure the ENT is right – the dental hygenist said it was due to constant sinus drainage, she’s seen it a lot of times and she could see the trail and red throat.

Oops, sorry, I see the dex 10mg hasn’t impacted my random thinking or writing one lick! Back to the meds – so what would an adult male, 57 years, life-long severe ADHD, social anxiety, anxiety a lot really in other forms as I always feel overwhelmed with my huge long lists of things to do, always in a hurry, always behind, always so much to do, can’t say no, take on more stuff, do more work, gotta stay up to get this finished as others have things for me to do…….

I need to help this lady figure out doses of the dextroamphetamines – 2 10mg a day isn’t cutting it. In fact other than a slightly tense or nervous feeling in my chest, I don’t really feel any impact when taking any what are commonly called “uppers”.

I do not take prescription type stuff unless it’s prescribed for ME – so no, other than caffeine or that sort of thing, I do not self-medicate. i did “experiment” with the dex and one day did take a third 10mg pill about 4 hours after the 2nd and it did help! I had a much better evening, more productive. I’ve noted that my body does weird stuff with meds. and frankly, meds that work miracles for some folks do nothing for me.
I don’t smoke, don’t drink other than an occasional beer IF we happen to get together with my wife’s cousins for a party, and then I cut myself off after 2 or 3 in an evening. I don’t like the feeling of being drunk, I hate the loss of control. I take prescription drugs for Menieres to control the dizziness, triamterene (sp) which is a diuretic (makes me pee a lot). I take a fish oil cap in the AM, multivitamin, and vitamin D.

Is she just not giving me enough? Not enough of the “right stuff”, or am I in that 30% of adults who have ADHD that drugs simply won’t help – or am I in that 1% who don’t benefit from ORAL doses of these drugs?
Strattera made me feel REALLY REALLY strange, bad, hard to urinate, we won’t even talk about other functions it impacted badly.  Adderall did for a while – at 2 x 20-mg xr help with the EDS, but little help with the ADHD.

It’s deep in my family – mother had ADHD, and depression, anxiety. Her brother had mental health issues and couldn’t live on his own. My youngest son has ADHD very severe.

Dr. Campbell of Johnston, Iowa, diagnosed me severe ADHD, combined sub-type, severe social anxiety, said I rated “superior” in pattern recognition, math, problem/puzzle solving and some other areas. IQ something in the 130 area if I recall – similar to what the school psychologist said when I was young. My oldest son also rates very high IQ and exhibits mild symptoms of ADHD, mostly under his own control, not enough symptoms severe enough to be formally diagnosed but both he and I recognize there’s traces of me in there.

Is it worth me continuing to try the dextroamphetamines – but at a different dose, and what dose should we start with, I know – it’s different for all people, all drugs have differing impacts and doses have to be varied for the individual, but there must be a good common starting point??

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[blackdog]

Hey @billd,

Once again, not really able to read everything….

I don’t have any experience with dex but I wanted to give you an answer, since I am here.

I know one person who takes a combination of Vyvanse and Dexedrine- 60 mg Vyv in the morning, then two boosters of 5 mg Dex, one mid morning and one mid afternoon. Maybe you could try that? That way you have the sustained effect all day long and a little extra shot when you need it.

That’s just one idea. I’m certainly no expert and you will need to do some research or talk to a pharmacist or something to know if it’s right.

Good luck. 🙂

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[blackdog]

Okay, just went back and read a little more….

I was thinking maybe your ADHD was caused by brain damage and that’s why the meds don’t work. But then I read the bit after that about your family. I totally lied at my assessment when he asked about head injuries. I was afraid he would decide not to prescribe medication if he knew. And it is working, a little, so it probably is the genes and not the piñata head.

The poor eating habits and cola addiction are not helping you, but you already know that. If you can get the meds straightened out you may find you don’t want as much cola.

Excess stomach acid could possibly be affecting how the meds work. It is also not something you should take lightly. Over time it will damage your esophagus and that can lead to more severe conditions. So an antacid med of some sort might be a good idea. And, of course, reducing stress, which is easier said than done. Also, you need to eat regularly. Not eating will make it worse. Trust me, this is one thing I do know about. And figure out what foods make it worse and try to avoid them. Typically it’s coffee, carbonated beverages, and greasy stuff that are the main culprits.

Those lumps in your throat sound scary. I have the constant sinus drainage thing, my throat is always red and a little sore and I have a bit of trouble breathing every now and then. But nothing that severe, that it actually closes up and I can’t breathe. I think you really should push them to look into that more. Even if it turns out to be nothing serious at least knowing that will help to ease the anxiety.

Wow, it’s getting late and I haven’t even had breakfast yet (speaking of poor eating habits ;-)) And I have a ton of stuff i was planning to do this morning. I should know better than to come here first…..

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[billd]

I had my appointment and she prescribed 2 15mg “spanules” of the dexoamphetamine or whatever. She had intended to do that last time but got into the pill stuff instead. So she’s upped it, and 2 x 15mg capsules which are supposed to act more like the XR of adderall – slower to impact, slower to let you back down, longer acting more smooth and less up and down.

Oddly enough, while reading the papers that come with the meds from the pharmacy, I read what to not take, warnings, etc. and checked to see if Triamterene was something to be aware of with this dexoamphetamine stuff. Not specifically, however, it’s often used with a med that IS on the list of things to watch – then I started looking up the tramterene and wow – side effects can include chronic sore throat, leg cramps, sore joints….. and I have all of those. Hmmmm, I’m going to check with the ENT and see about pulling out of the triamterine for a little while and seeing of those symptoms clear up!

I checked directly with the pharmacist – and got the straight scoop on the acids interacting with the dexo and other similar meds – it’s certain citrus drinks and juices. She said the pop would have little impact as it’s mostly phosphoric acid and similar, but the citrus had more of a direct impact, and she said specifically grapefruit, but also apple and orange juice were things to watch. It’s ok, just don’t take the meds WITH those drinks or juices, or within a short time of taking the drugs.  Although a few beers will really give me a buzz – and more than just a few can totally waste me pretty fast, many drugs just don’t do much to or for me. A few have a big whammy, Strattera, for example, totally messed with my systems. I hated it – absolutely hated it! Nuvigil was similar – that drug was nasty to me. But Adderall, for example, ha, about all it does is keep me from yawning and getting sleepy during boring stuff.

And frankly, I find a LOT of stuff boring! It takes a whole lot to stimulate or excite me. Most stuff is ho-hum. It takes certain TV shows to keep my attention or i’m gone. I flit from thing to thing, project to project unless I’m REALLY into it, or really motivated. So drugs are a bit different with me – what sends some people straight to the ceiling for a while simply prevents me from being bored or falling asleep. (the life I lead would even make a dead man yawn)
I don’t think I drink as much soda – or pop, as I did when I was younger. And back then it was all regular sugared stuff. Mountain Dew was my drink of choice. I drank it with most meals and for breaks. When the boss and I went for coffee break – he had coffee, I had my dew and a donut. I was a whopping 29″ waist back then.  The Mountain Dew calmed me.
I’ve pushed on the throat thing – in fact I’m on my 4th ENT. However, when I spoke today with my prescriber lady about the impact of these drugs in various systems, how the body metabolized them, and so on, we got onto the topic of kidney function, the triamterine, diuretics and such and I could tell she wanted to ask something, and I sensed it was similar to my thoughts – and so I said “it’s been over a year since I had any tests or a physical or even ust a checkup. She wanted to have some blood and other work done to see how the drugs were being metabolized – kidney functions and all, but she almost said “yippee” when I said I’d not had anything checked for a very long time as she SO wanted to order a complete workup done, blood, urine, etc.  So once I get that done I’ll know a whole lot more. I had stress testing done about 3 years ago and it was so funny – on the treadmill it usually takes just so many minutes to get your heart up to the beats per minute they want to see in the tests. I had reached full incline, was over the normal minutes and my legs wre cramping before my heart finally reached the number of beats per minute they needed for the tests. The lab gal was sort of surprised. In the past the doctors always wanted to do my blood pressure checks in spring and fall – in the middle or planting or harvest season – just so certain I’d have high blood pressure or whatever. But as one doctor told me years ago – my heart just idles along like it’s not got all that much work to do, BP is normally in the lower end of what is considered normal, it borders at the bottom of what they like.

Anyway, I’m now trying the capsules of dexoamphetamine, 15 mg “spanules” I think they call them, 2 15 mg caps a day. They said to take both at the same time – that really surprised me! I figured one first thing, and the other just before lunch or something. When I was doing the adderall XR they prescribed 2 of those a day – but if I took those at one time, I shot up quickly and then crashed just after lunch, more tired than ever, so those got spaced 1 at 5am when I got up, and the other between 11 and noon, and that worked well, but wasn’t doing much for ADHD. I have no idea what it’s like – what that feeling is of a drug actually WORKING to help control any of ADHD – some folks say “so THIS is what it’s like”, I have no clue. Nothing so far has had much impact other than my wife says I am less likely to argue or put her off if she asked for my help – with the meds I at least say “I’m on my way” and am more helpful, otherwise, naw, no real difference that _I_ can tell anyway!  I asked all my friends if they could tell a difference, but he said not really…….  so here’s hoping we eventually find something that helps even a bit – so I can feel it, so I can tell, so I can know what it’s like, or I guess I’m the 30% it just won’t ever work for…………

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[dithl]

@billd; I think it basically boils down to the fact that from here on in, you are a scientific experiment. Just keep on trying different things. It’s slow, tedious, frustrating, but it’s all they’ve got for now.
A little belatedly – as for Dex, I take the short release as a booster for Adderall XR. I think I metabolize pretty quickly. It made a huge difference – I wasn’t getting through a whole day at work with the Adderall alone.
I’m a sleepy type too. Nothing diagnosed, but unmedicated I would have a really hard time driving an hour to work. As it is, I have been getting sleepy again lately. Going to try controlling other variables (see? Science experiment) like bedtime, diet, etc. Hopefully that will do it.

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[billd]

It’s worse when you live in Iowa and near Des Moines. Medical help here xxxxxx… well, it’s a family forum and I won’t tempt the moderators here….. but insert your own naughty word in there. (I could give examples of when they messed up my hand so bad I’ve lost 50% of the function in one finger, the doc botched the stitches, and further back when the ER doc messed up the splint or brace on my broken collar bone, etc.)
These clowns in ER and many doctors really do not care or are under such pressure from Mercy, which pretty much runs things around here, good doctors can hardly practice.
What I’m really ticked about now is that I read the sheets that came with the dextroamphetamines and where it tells about drug interactions and all  – it specifically mentions a drug I’ve been on for years (the help it gives it quite questionable, however). It’s traimterene-HCTZ. It’s basically a “water pill” they prescribed years ago for Meniere’s. It’s not labeled for such use, but some doctors prescribe it for Meniere’s as they think it may help. Check what it is, what it does, possible side effects – and then check the labels and warnings for Dextroamphetamines…. yeah.
uh-huh…. then worse, I started doing research on Triamterene – and find that it in itself could have those “rare” side effects, but when mixed with the stuff it’s normally mixed with, the HCTZ – it’s something to watch for when taking these ADHD drugs. But let’s get back to the triamterene for now – warning, stay out of the sun, etc. etc. Uh, I spend a ton of time in the sun. I have to be outdoors a lot, I live for the air and open outdoors. I love yard and garden work and spend many long hours in the sun. and NOW I see this warning. Ok, I’ve complained to multiple ENTs about CHRONIC sore throat, trouble swallowing, and other pains, swollen neck areas, back and joint pains – and gee, what can Triamterene-hctz do? Cause sore throat, etc. etc. etc. Interesting.
So I hit up the pharmacist about the Triamterene – asked her “what’s the HCTZ after it stand for? she told me (I already knew of course), so I replied “but this dextroamphetamine says that it could be a problem”, and she responded not to worry, they have to say that, etc. and there’s generally nothing at all to worry about. Uh, aren’t you guys supposed to watch for possible drug interactions and at least WARN ME when I pick them up “hey, we note that you are also on xxxxx so be watchful for xxxx”.  And if I hadn’t read those sheets in detail and spent 2 bloody hours on the web looking this stuff up, what then? They never said a thing about being watchful that I”m taking BOTH of those drugs that COULD interact – and the doctors never said squat – that they were prescribing triamterene on a guess that it may help, or that I needed to be aware of all of these other things – like very high potassium levels and other nasty things that can result from triamterene-HCTZ.
I swear I have so little patience for or trust in doctors any more – at least around Iowa. I think I’d have superior care if I moved to Canada or Korea! No joke. If I was closer to the border, I’d drive into Canada where they care and know a whole lot more about ADHD. No one around here knows squat about it except for the doc who did my final detailed analysis and testing.
Funny, unless I want to take adderall or one or two other things forever, whether they help or not, it’s up to ME to suggest other things to try. ME, hey, I ain’t the doctor here – but I seem to know as much as they do.

What I”d really LOVE to know – if I hit upon a drug that DOES help with ADHD – what’s it feel like, how will I know? Or will I know? Will there be a “gee, this is much better!” moment? It’s been over 2 years, I’m on drug number 6 or 7 if we count all of them, strattera, nu-vigil and some of the others that were really NASTY.
This dexro or dextro stuff – sort of ok for the sleep problems but then I feel really nappy at times. If I’m bored or feeling overwhelmed, I want to take a nap. And sometimes the need for nap is so overwhelming it feels as if I will quite literally collapse if I don’t lay down or sit for a while and “snooze”. It’s that bad, that serious. This dex takes the edge off that, but I still get that feeling now and then.

I’m on 2 15 meg spansules per day, pharmacist said “take them both at the same time” where the prescriber said “at the same time, or take one then wait 3 or 4 hours and take the other, depending on how I get by”. Well, the two 15s together or one a few hours later hardly has any impact on me. But then, nothing else has done squat for my ADHD anyway.
I’m about to give up – it’s costing a ton of time going back and forth for appointments, and having to go every 30 days and get the paper, then back to the pharmacy, remembering to take the pills, as well as the other stuff I’m on, then back again for another appointment, back for another paper so I can get more pills – and the best effect so far has been to prevent my napping or being TOO tired in the middle of the day. There’s been very little impact on the ADHD – best thing there was the adderall, but it lost effect.
I was told flat out that that can’t really happen – my body can’t possibly become accustomed to it so somethng else must have changed. nope – when I started taking the adderall it really helped a lot with the EDS and it did help my attitude AT TIMES, but then after a bit over a year, it stopped helping much with the sleep even.

So back to the original question – anyone here taking the dex stuff – if so, how much, when, and how does it help IF it helps?

I really am starting to believe that NO drug will help – if one has, I sure never had any “wow” or “eureka” moment!!

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[blackdog]

I hope this time it works for you. And I hope it turns out that your pain and sore throat were being caused by that one medication. It would help a lot if you could get that resolved.

I forgot all about the citrus, grapefruit in particular. You have to watch that with a lot of meds.

I used to like Mountain Dew too, but mostly Cocoa Cola. And tea. When I was little I used to practically beg for a cup of tea whenever the adults were having some. One time after some guests had just left I saw my mom’s cup wasn’t quite empty and snatched it off the table. Only  it wasn’t tea, it was coffee. The shock was enough to turn me off coffee for a long time. I finally started drinking it in my mid 20’s in a desperate attempt to stay awake and alert at work. But it never really helped. It does relax me when I’m stressed though.

I’m still waiting for the “so that’s what it feels like” moment too.  I sort of had it when I first started taking Vyvanse for a couple of days but then it went away. I have an appointment with my doctor tomorrow and I am planning to have a serious discussion about getting my dosage up to a decent level or switching me to something else if he won’t do that. I’m just wasting my money right now. And my time, since I might have actually been able to accomplish something over the last four months if I had been properly medicated.

I’m pretty sure there are dead people who live more exciting lives than me, so I know what you mean about the boredom. And even the things I’m interested in don’t interest me.

I’m a sleepy type too and I’m starting to wonder if there might be something that needs to be diagnosed there. In recent years I have occasionally fallen asleep while doing something, like when I’m scrolling through the guide on the TV looking for something to watch. And I do the REM while still awake thing too. I will just lie down and close my eyes and random images will start flashing through my mind instantly. I can also continue to dream for  awhile after I get up in the morning.

I need to get more regular sleep to start with to rule out the possibility that I am just tired. But it doesn’t really feel like that. And even when I do sleep well at night I still get sleepy during the day. Always have.

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