ADHD, anyone?

[JoKalsbeek]

Hi folks...

Took a while to get the next drug to try, which was methylphenidate slow release. I was hopeful for a bit there, because there was no nausea, no headache... But after about 4 hours my kidneys quit on me, and I started filling up with fluid again. Not just my feet this time, but everything. My hands, my gut, my throat, feet and ankles. The pipes started working again half past midnight, so been doing my best to wee for England since then, but it'll be a day or so to get back to my normal proportions. Last time it took days for my feet to swell to a bad point.... Now it was a matter of hours, and is happened everywhere. Yikes. Scary stuff. So that particular avenue seems closed off. I did check blood sugars when I was fasting, saw a 6.2 and a 7.0 come up, which was high for me, but.... Doable, if that was to be the cost of being in charge of my own mind. But if the kidney issues persist, then that, is the end of that. Next appointment is the day after tomorrow, and I'm guessing dex'll be the next medicinal stop. I hope it's available!

I wonder what that'll do with blood sugars... Can't wait to get back onto the saddle, especially after yesterday... I mean, I interacted with actual humans I didn't know, without so much as a hint of a panic attack, had a good time with my mother in law, did dishes, the kitty litter boxes for a big clean, and for the first time in two years, I tackled the windows, which requires me being outside... I felt like I could handle whatever the world was going to throw at me, even if it was just for a few hours. So the quest is not over yet!
Love,
Jo

 

[Tiredbunny]

I'm an idiot. No, really. I spent last week trialing generic methylphenidate, and I completely forgot to check what it did with my blood sugars. Checked pulse, checked blood pressure.... Completely forgot to poke!

So here's the thing. In 2005 a shrink diagnosed me with a whole bunch of things, and he pretty much got the main part of it, completely wrong. I don't have a Borderline Personality Disorder. I never did. And the anxiety, panic disorder and depression all resulted from the main culprit, which was entirely overlooked. Quelle surprise when the meds/treatment didn't work! (Which I got blamed for, being an "uncooperative patient"... You don't put an arm in a cast, when the leg's broken!) When certain things happened last year, it finally dawned on me... It's ADHD. My GP agreed, but couldn't officially diagnose nor prescribe. So... Now I've finally gotten through waiting lists and am getting help, it turns out it's not just ADHD, but AuDHD: a combo with autism. That one came entirely out of the blue, but due to some reading material I got from a friend, it immediately made oodles of sense! Palatable relief, to finally know why I don't function around people, why I can't keep our little flat in order, but I can hyperfocus on things like, oh... Diabetes treatment through diet, haha. And cats!!! I have a proper diagnosis at long last, proper help from an entire team at a psych practice.... And the first medication tried was an absolute disaster. Lots of very nasty, mostly painful side effects, even in a low dosage, including an inability to properly urinate. Try not being able to wee when your mouth is cotton-dry and you're drinking lots. As it turns out, after a week of that you can't actually walk properly anymore, because there's so much fluid and pressure in your feet, it'll make you weep to try. I'm very sensitive to side effects and usually get a plethora of them, so I'm a little worried there's nothing out there that'll actually fit me. It's so nice to have a calmer, more focussed mind though... But if it's not meant to be, I'll accept that. I'll try everything I can before throwing in that particular towel, though!

On the 22nd I'm going in for a consult to see what we're going to try next. Is there anyone here who has experience with T2 and ADHD medication? I've had trouble in the past with all types of antidepressants, alas, and now I'm worried the stimulants aren't going to be workable, but the more I know, the better. Anything I should watch out for, ask for? Supplements any good that don't mess with vein width? (Migraines....) I appreciate not all medications may be on offer here in the Netherlands, but you never know.

Anyway, thanks for the read, and any ideas one can toss out there. They're appreciated.
Love,
Jo

PS: So far I've been told that ADHD just "takes a little extra grit", and that it can be solved "with a cold shower in the morning". Yeah. Nope. Diabetes certainly isn't the only thing underestimated by the public at large!

Wow, I love the "chin up" advice we get. I have fibro and literally everything gets blamed on that. Adhd is a life long condition, ye you can learn to manage it, same as with diabetes but it takes time and sometimes meds. My eldest is 27 and has been on adhd meds since he was 15 ,he couldn't manage them at 13 as it messed his head up. Im also being tested for autism/adhd might just help to understand why I can't make or keep friends . Sounds like your case is quite unique by the way you react to medication so it will all be trial and error. Hopefully meds will work for you but if not you'll need that bit of extra grit. Sounds like you've managed it for some time already so I recon you'll be good. Maybe do a journal to keep a record and make sense of your journey . Good luck

 

[Tiredbunny]

Type 3c
Anyone else have it?

 

[mouseee]

Today I texted my back from uni daughter while she was upstairs! She is beginning diagnosis for ADHD and if I ask her to do anything she hits that brick wall and won't do it, or will stop if you mention what she is doing. I now recognise this as what happens to me too, hence a new approach! (I now tell my husband not to comment on anything I'm doing or I'll stop!)

I texted and said I understood why she reacts like this but that I need her to do some things while she's here. I asked her the best way to do this. She said 'just ask'..... well, fine but that's never worked in the past!

I've now sent a list of things for the weekend and the holidays and we'll see if it works! Taken me 50 yrs to know how my brain works, how amazing if she gets how hers works at 21!!

Just to say... she does do lots when she's here....including lots of cooking for meals.... but also leaves lots of mess!!

 

[JoKalsbeek]

Type 3c
Anyone else have it?

Hi @Tiredbunny ,

You're posting this in a thread about Type 2 diabetes, and ADHD (-medication), which means it is very unlikely you'll get a useful answer. Maybe one of the mods can help you make a post for you, like @lovinglife , @EllieM or someone? (Helloooooo? Moooooderators? I think you might still all be asleep at this point in the morning!).

In any case, yes we do have T3c's here, and you can find them in this subforum: https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

Welcome to this merry little band, and I hope you'll find it a helpful place.

Good luck!
Jo

 

[JoKalsbeek]

Today I texted my back from uni daughter while she was upstairs! She is beginning diagnosis for ADHD and if I ask her to do anything she hits that brick wall and won't do it, or will stop if you mention what she is doing. I now recognise this as what happens to me too, hence a new approach! (I now tell my husband not to comment on anything I'm doing or I'll stop!)

I texted and said I understood why she reacts like this but that I need her to do some things while she's here. I asked her the best way to do this. She said 'just ask'..... well, fine but that's never worked in the past!

I've now sent a list of things for the weekend and the holidays and we'll see if it works! Taken me 50 yrs to know how my brain works, how amazing if she gets how hers works at 21!!

Just to say... she does do lots when she's here....including lots of cooking for meals.... but also leaves lots of mess!!

That sounds familiar! I wanted to declog the shower drain, but my husband's lumbago is back. That means I can't do much of anything, because after unclogging the pipes, I'll leave the very heavy drain snake and the like, exactly where I last used them, -scattered around the bathroom- and he then gets that sorted... And right now, he can't, because that's heavy and he can't bend over! And yes, if I do it, leave behind a disaster area, and come back into the bathroom later, I will be quite surprised it is a mess, because I don't remember leaving it like that. I can do and fold laundry, but I can't put it away, either. Brains are weird.

Recently, ADHD-Love put out a Body Doubling app, Dubbii. Body doubling is when you just are present when an ADHD-person is doing something, for some reason it helps us when we're not alone, it gets our thoughts sorted and makes concentrating a little easier. And Rich and Rox made an app for that. https://www.adhd-love.co.uk/ has more info. I haven't downloaded it yet because I have someone to double with, but I have a friend from here who told me about the Sweepy app, and that's made a world of difference in keeping my flat in some semblance of order. Maybe that would help, too, as it makes chores into a bit of a game. It's not a miracle cure, but it did make things more managable... Reminds me of what needs doing and when, every day, and I get a tiny little dopamine-hit when I can cross something off the list.

I hope the visit goes well, and doesn't leave your house looking like something exploded in it.
Hugs,
Jo

 

[JoKalsbeek]

Yesterday I tried Dexamfetamine for the first time, in an extremely low dosage (1,25!), and my kidneys kept working. Yay. Between the nurse and the pharmacist they do think I basically had an allergic reaction to the methylphenidate, especially since on the last try my throat swelled shut too, and it likely wasn't just swelling but angio-oedema, so yeah... Not quite a side effect, then! But so far, so good, with the other stuff.

I did test, but at an absolutely useless time... After the dexamfetamine wore off I got the munchies, and I tested while I was still spiking off a rediculously large dinner with some foods I didn't know the carb count of. So did hit a 8,2, but that meant next to nothing. Hope to do a better job of it today. No guarantees though, because there's a lot to distract me (first anniversary of mom's death is today, and Kornelis' lumbago is acting up), but we'll see how it pans out.

Thanks again, everyone... I love you guys.
Jo

 

[lovinglife]

Hi @Tiredbunny ,

You're posting this in a thread about Type 2 diabetes, and ADHD (-medication), which means it is very unlikely you'll get a useful answer. Maybe one of the mods can help you make a post for you, like @lovinglife , @EllieM or someone? (Helloooooo? Moooooderators? I think you might still all be asleep at this point in the morning!).

In any case, yes we do have T3c's here, and you can find them in this subforum: https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

Welcome to this merry little band, and I hope you'll find it a helpful place.

Good luck!
Jo

Thanks for the tag @JoKalsbeek .
Hi @Tiredbunny, would you like one of the moderators to move your post for you?

 

[Melgar]

Today I texted my back from uni daughter while she was upstairs! She is beginning diagnosis for ADHD and if I ask her to do anything she hits that brick wall and won't do it, or will stop if you mention what she is doing. I now recognise this as what happens to me too, hence a new approach! (I now tell my husband not to comment on anything I'm doing or I'll stop!)

I texted and said I understood why she reacts like this but that I need her to do some things while she's here. I asked her the best way to do this. She said 'just ask'..... well, fine but that's never worked in the past!

I've now sent a list of things for the weekend and the holidays and we'll see if it works! Taken me 50 yrs to know how my brain works, how amazing if she gets how hers works at 21!!

Just to say... she does do lots when she's here....including lots of cooking for meals.... but also leaves lots of mess!!

I think that is one of the most frustrating aspects of ADHD is procrastination. It does a number on your personal and work relationships. For me, paying a utility bill or any bill for that matter is like asking me to swim through syrup. It's hard if not impossible until it isn't. It is difficult to comprehend if you don't have ADHD. Paying a bill is always a last minute thing. It quite literally feels like moving through syrup. Then on the day the bill is due, that syrup feeling disappears and whoosh a pay the thing, just like that. Anything that doesn't inspire me is like a syrup thing. So doing something, anything you don't want to do is extremely hard. telling someone to just pay the bill is like telling someone to jump off a cliff. There is a wall that stops you. A dramatic analogy but it demonstrates the difficulty you face doing somehing that does not fire you up in the moment.

The other aspect of ADHD involving procrastination is perfectionism. It can paralyze me. So I don't do it until the very last second. I have it all going on inside my head. It's perfect. Transforming that perfect idea into reality starts the perfectionism part. It has to be perfect else I've failed.

Another frustration is disorganization. I have difficulty organizing anything. A typical manifestation of the compromised 'executive function' part of your brain. I'm scattered. It's hard to impart these aspects of ADHD on a neurotypical person. Hpw many times I have heard, just do it, what is wrong with you.

 

[CANL]

TS, how very brave of you to start this tread.
Thank you . For now I’m just following.

 

[Melgar]

Yesterday I tried Dexamfetamine for the first time, in an extremely low dosage (1,25!), and my kidneys kept working. Yay. Between the nurse and the pharmacist they do think I basically had an allergic reaction to the methylphenidate, especially since on the last try my throat swelled shut too, and it likely wasn't just swelling but angio-oedema, so yeah... Not quite a side effect, then! But so far, so good, with the other stuff.

I did test, but at an absolutely useless time... After the dexamfetamine wore off I got the munchies, and I tested while I was still spiking off a rediculously large dinner with some foods I didn't know the carb count of. So did hit a 8,2, but that meant next to nothing. Hope to do a better job of it today. No guarantees though, because there's a lot to distract me (first anniversary of mom's death is today, and Kornelis' lumbago is acting up), but we'll see how it pans out.

Thanks again, everyone... I love you guys.
Jo

Those darn ADHD meds. My body cannot tolerate them or else the side effects outweigh the positives. Pretty much all traditional ADHD meds cause vasoconstriction if your body is prone to it. Is it the vasoconstriction side effect that compromises your kidney function? I'm guessing that your Dr put you on that very low dosage for that reason.

 

[mouseee]

I think that is one of the most frustrating aspects of ADHD is procrastination. It does a number on your personal and work relationships. For me, paying a utility bill or any bill for that matter is like asking me to swim through syrup. It's hard if not impossible until it isn't. It is difficult to comprehend if you don't have ADHD. Paying a bill is always a last minute thing. It quite literally feels like moving through syrup. Then on the day the bill is due, that syrup feeling disappears and whoosh a pay the thing, just like that. Anything that doesn't inspire me is like a syrup thing. So doing something, anything you don't want to do is extremely hard. telling someone to just pay the bill is like telling someone to jump off a cliff. There is a wall that stops you. A dramatic analogy but it demonstrates the difficulty you face doing somehing that does not fire you up in the moment.

The other aspect of ADHD involving procrastination is perfectionism. It can paralyze me. So I don't do it until the very last second. I have it all going on inside my head. It's perfect. Transforming that perfect idea into reality starts the perfectionism part. It has to be perfect else I've failed.

Another frustration is disorganization. I have difficulty organizing anything. A typical manifestation of the compromised 'executive function' part of your brain. I'm scattered. It's hard to impart these aspects of ADHD on a neurotypical person. Hpw many times I have heard, just do it, what is wrong with you.

All of that is so true!!
I have a short list of jobs for each school hols (I teach) and that has worked the past few times. If I get a bit more done than my list that's a bonus.
Bills however... if they are not direct debit I'm lost!! And its such a very quick job which is such an annoying thing.
You are so right.... wading through treacle.

 

[Melgar]

All of that is so true!!
I have a short list of jobs for each school hols (I teach) and that has worked the past few times. If I get a bit more done than my list that's a bonus.
Bills however... if they are not direct debit I'm lost!! And its such a very quick job which is such an annoying thing.
You are so right.... wading through treacle.

It's so true isn't it lolol.

 

[JoKalsbeek]

Those darn ADHD meds. My body cannot tolerate them or else the side effects outweigh the positives. Pretty much all traditional ADHD meds cause vasoconstriction if your body is prone to it. Is it the vasoconstriction side effect that compromises your kidney function? I'm guessing that your Dr put you on that very low dosage for that reason.

That's the funny thing... I am on a constrictor for the migraines, and it was a lot stronger than the smidge of methyl was. She figured that the restriction was the problem, but the same doesn't happen on triptans, which last for 6 hours too, so would be something I'd notice after being on it since my 16th year. Nothing of the sort happened. On dex, I did get very cold hands and feet, but could wee just fine, and no kidney pain either. Since the swelling everywhere is listed as an allergic reaction, the meds are basically out... And I am about to get started on my third day of dex, with a lot less dread than I started the first day with. I asked about other options, but all that's left to me is antidepressants.... Those never worked before for me, in any capacity, other than to stack pain upon pain in the side effects. So this is basically it, it seems. So I'm hoping this'll end up being quite workable. I have a bit of hope, after yesterday and the day before going well.... There's some side effects, but nothing I can't handle, so far!

 

[JoKalsbeek]

It's so true isn't it lolol.

Aaaaand this is why my now-husband bailed me out when we started off together, (Debt wasn't dramatic, but not something I could solve on my own the way things were going) and we've done financial admin together ever since. Only took me about 15 years to get a bit of a better grasp of it, having dyscalcula as well... Though I'm still prone to overspending, body doubling with finances really helped, haha.

 

[Melgar]

Aaaaand this is why my now-husband bailed me out when we started off together, (Debt wasn't dramatic, but not something I could solve on my own the way things were going) and we've done financial admin together ever since. Only took me about 15 years to get a bit of a better grasp of it, having dyscalcula as well... Though I'm still prone to overspending, body doubling with finances really helped, haha.

I'm dreadful with money, but I have got better at managing it with age. I don't have dyscalcula I'm just impulsive. My partner is exceptional with money and highly organised. And on that matter, brilliant at mathematics and music. Everything I'm not.

 

[Melgar]

That's the funny thing... I am on a constrictor for the migraines, and it was a lot stronger than the smidge of methyl was. She figured that the restriction was the problem, but the same doesn't happen on triptans, which last for 6 hours too, so would be something I'd notice after being on it since my 16th year. Nothing of the sort happened. On dex, I did get very cold hands and feet, but could wee just fine, and no kidney pain either. Since the swelling everywhere is listed as an allergic reaction, the meds are basically out... And I am about to get started on my third day of dex, with a lot less dread than I started the first day with. I asked about other options, but all that's left to me is antidepressants.... Those never worked before for me, in any capacity, other than to stack pain upon pain in the side effects. So this is basically it, it seems. So I'm hoping this'll end up being quite workable. I have a bit of hope, after yesterday and the day before going well.... There's some side effects, but nothing I can't handle, so far!

So the swelling, is that an urticarial rash? Too much histamine response from the drugs? I get that as an autoimmune response from gluten. Itchy and painful and it can erupt anywhere on my body and quite widespread. It must be affecting my mast cells. I also get the Dermatitis herpetiformis in the presence of gluten. That looks like shingles and mainly erupts in my hairline, very itchy. I've seen people with it on their body, small mercies it's in my hairline so not noticeable. Both rashes are from antibodies.
I'm very sensitive to drugs too. I take small amounts first to test it out. I still have the Secondary Reynards, but the warmer weather is helping with that. I'm sure that was drug induced and now I'm stuck with it. I never had it when I lived in Québec with dips as low as -60c with windchill.
As I had said in previous posts my Dr put me on 300 mgs Bupropion as a last resort. It has taken the edge off my ADHD and I do notice a difference with my concentration and mood. I don't feel so fast. Not as good as stims and non-stim ADHD meds but there is a difference. The biggest effect with Bupropion is on my blood sugar. The Bupropion stimulates insulin release. I have normal insulin sensitivity so that was definitely a bonus! The first time I have seen a significant drop in my blood sugars.So you see a happy face

 

[JoKalsbeek]

So the swelling, is that an urticarial rash? Too much histamine response from the drugs? I get that as an autoimmune response from gluten. Itchy and painful and it can erupt anywhere on my body and quite widespread. It must be affecting my mast cells. I also get the Dermatitis herpetiformis in the presence of gluten. That looks like shingles and mainly erupts in my hairline, very itchy. I've seen people with it on their body, small mercies it's in my hairline so not noticeable. Both rashes are from antibodies.
I'm very sensitive to drugs too. I take small amounts first to test it out. I still have the Secondary Reynards, but the warmer weather is helping with that. I'm sure that was drug induced and now I'm stuck with it. I never had it when I lived in Québec with dips as low as -60c with windchill.
As I had said in previous posts my Dr put me on 300 mgs Bupropion as a last resort. It has taken the edge off my ADHD and I do notice a difference with my concentration and mood. I don't feel so fast. Not as good as stims and non-stim ADHD meds but there is a difference. The biggest effect with Bupropion is on my blood sugar. The Bupropion stimulates insulin release. I have normal insulin sensitivity so that was definitely a bonus! The first time I have seen a significant drop in my blood sugars.So you see a happy face

..Itchy... Hairline...

****.

I'm still hoping it's just a hay fever flare, but I've been having a burning itch in my scalp-area since last night. Ears too. Still... The dex worked wonderfully in all other ways, so I'm hoping, almost against hope, here, that it can be sorted by switching brands. If that's the issue, rather than the seasonal stuff...

I don't know what happened with my kidneys and bladder, don't think I'll ever find out now. But histamines sound likely. I do drink a lot, but the swelling seemed like more than what could be blamed purely on the not weeing.

Onwards, upwards..!
Jo

 

[MissMuffett]

Having read ALL the comments (and believe me that’s a feat in itself as I get bored or distracted and I don’t mean that to be rude) I have found this so helpful and astonishing, recognising so many ‘symptom’ in myself. Thank you for the ‘Dirty Laundry’ recommendation. I have watched a few of her YouTube shorts but didn’t clock the name. Going through each of the comments and mentally ticking a lot ‘yep that’s me’ and ‘yep, I do that‘
I realise why I faked being unwell from as early as 5 so I didn’t have to go to school as it was better being safe at home. I went to train as a nurse 100 miles from home and was so homesick I quit. I was an au pair in Sweden, same thing so homesick I couldn’t enjoy it and left after 2 months! I had great ideas about a career, would jump in without giving it any thought and then realise 4-5 months down the line that I couldn’t cope or was bored, my parents couldn’t understand. Thank you all for chatting about your experience and thank you @JoKalsbeek for starting this thread x

 

[ElenaP]

I do drink a lot....

I smiled at this. It brought a memory to mind. In the UK 'drinking' is often euphemism for drinking alcohol. Some years ago, when my disabled husband was seeing a hospital consultant, the consultant asked if he drinks. To which my husband replied "No, my wife will not take me to the pub". It was just laziness by the consultant that he had not asked if my husband drinks enough water, but it raised a laugh.