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

[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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