@Chasingsunsets Long delay is always fine; I understand. 😘
So my nap… I lay down on the couch to nap … and got distracted with needing to look up something on my phone 😂. Then after 30min realising I needed to have a shower (due to limited time in the morning), and then remembering in the shower I needed to make jelly (for Saturday) because I don’t have time on Friday. But of course I was tired after my shower, but I setup my stool in the kitchen to sit on so I could still make the jelly on the stove (it’s not normal packet jelly lol. its milk-jelly). But I got it all done! and then I got to rest.
Thank you for your encouragement re: MH advocacy/spokespersoning. Public speaking is indeed something I’ve never felt uncomfortable with — which is curious given the amount of times people misunderstand me 😂. I think the difference is that when I am “prepared” for what I need to say, and can plan how to say it then I am clear. But when I am rushed/spontaneous it comes out in my own communication style and that… well… sometimes gets misunderstood lol. Like accidentally inferring my male doctor was a female 😂 (which i assume they understood what I meant to say, I think?, but their sense of humour was like mine so they joked back about being feminine which is how I then realised what I had said lol). Sadly though there have been times (eg work) where someone has misunderstood what I meant by my wording and has taken offence without raising it with me for clarification.
I’m of two minds currently re: advocacy.
1. I want to share my experiences to highlight the severe risks/impacts of the current system. I would hope that real tangible examples (in a respectful delivery) can help change awareness and future for others, even if it’s not possible for a short-term/rapid change. I actually don’t want an individualised solution for the systemic problem because that would only help me, not everyone else. I would prefer to help others and the longterm even if it sacrificed my own short-term needs.
2. I am also mindful of how any positives and negatives arising from successful or unsuccessful advocacy can impact my mental health, and in turn that could impact (skew) the research trial data. If I deteriorated due to a negative experience in trying to advocate, then that looks like their treatment isn’t working. However, if I improved because of a successful advocacy/assertion experiences, that could make a placebo/control treatment look like it is working. In a similar vein to this, it’s why I won’t start the pain medication the rheumatologist prescribed until after the trial because I don’t want to murky the data with “other factors” since we have already done all the baseline measures of mood.
So i think advocacy is something I will have to shelve for 3 months at least.
Blood pressure. New but not new, lol. When on my antidepressants (which treated the ADHD unknowingly) my baseline BP was elevated, but not hypertensive - so no treatment needed. It only got dangerous when I as in acute distress (which I didn’t know until January because I had never sought a nurse/doctor during distress, so no one ever took my BP when I was in acute distress lol) - but looking back I can see that the symptoms were there in the past too.
Coming off the anti-depressants my meltdowns became more often as my ADHD symptoms returned (after 15 years lol) making it even harder to regulate frustrations. Plus I had increased stress and frustrations from external triggers - which was triggering me more often the past 2 months. Plus my baseline isn’t dropping back to the pre-hypertensive (elevate but OK) levels anymore since coming off the antidepressants, and I suspect that is because of the ADHD-brain causing unconscious stress of “always busy thinking a thousand miles and feeling in a rush”. When I slow down, take time out, focus on breathing and relaxing - then my BP can return to the pre-hypertension state if I’m otherwise not stressed. But… I can’t focus on breathing or relaxing for more than 3-5 minutes because of ADHD-brain 🤣. I now know why my watch has a visualisation for the breathing because that is the only way I can not get mentally distracted from focusing on breathing (by watching the visualisation lol).
My new GP yesterday has prescribed some BP meds which will take a few weeks to properly kick in and then we can monitor & increase to the required level (and future decrease when stress reduces). But she’s also give me some pathology tests to do to check for some other possible things that could drive higher BP and to check my adrenal system. I’m glad she is being thorough just in case there is something else driving the baseline elevation in addition to the stress triggers exacerbating it.
Otherwise I am OK post-ED lol. A massive bruise from the cannula, but all my heart-tests were normal which is a relief to my doctors. Some minor abnormalities in my blood tests - But I haven’t read into them yet; I assume they are likely to be related to stress; they are abnormalities I have had before when doctors have done testing during periods of high stress or fatigue — and docs have never questioned them or looked into them so I am not worried about them; but glad the new GP wants to look at it all holistically since they are outside “normal” ranges.
Re: Trial & AuDHD
I am glad to have the diagnosis pre-trial because I believe it helps them in their data notes to be able to also correlate anecdotally (if they wish; it’s not an actual measured thing in the trial) how this treatment responds for an AuDHD person (because whilst there may not be enough in a single study to draw conclusions, a meta-analysis of multiple studies could compile any data if the researches report as an aside on the data from those with diagnosis, to then draw statistically-relevant sample sizes which can then be used to support requests for future research into specific-diagnosis cohorts). And they themselves acknowledged that there is likely higher proportions of ND in TRD populations (for which this treatment is exclusively used) - even if undiagnosed.
However the feelings re: AuDHD and trial are mixed. There is also research/theory that this same chemical-drug might be beneficial for autism and fibromyalgia too — that is encouraging. Research is very early on both of these and so far mostly anecdotal evidences; it is not an approved medication for either condition in any country. And even if it was (since I can legally access it for TRD diagnosis) it is prohibitively expensive - I’m talking $10,000-$40,000 per year ongoing (depends on how long each "dosage” lasts). And it’s delivered in an outpatient setting usually which means it is not covered by private health insurance, and medicare doesn’t cover it either (maybe you could get a 1 hour consult rebate of ~$170, out of the $10,000 fee per dosage day). So that doesn’t give any hope for being an accessible treatment post-trial even if it were effective. Research so far indicates that about 70% of patients have at least some positive short-medium term benefit from the drug-therapy. That's way higher than most depression treatments, especially for TRD-cohorts. By contrast, TMS treatment (which is much less invasive or side-effect-risk than ECT) has a 40% effectivity rate for TRD, a 30% “no effect” rate, and a 30% adverse effect rate (this is what my TMS pdoc told me prior to my treatment). And it is medicare-funded for one round of treatment and a single booster if the initial one was successful but relapsed later — in your whole life (unless they change the “not received previously” current criteria). I had an adverse reaction and no positive effectivity from it - so it would rule me out from the “previously tried” funding rule now even if I was willing to risk another adverse reaction occurring (which I’m not lol; it was debilitating). I do note though for anyone reading that my adverse reaction was super rare and should not be taken to be seen as a “common risk” of TMS treatment; it’s not unheard of but it is very rarely occurring. I still support TMS as a treatment option for people to consider with their doctors 😊.
I think we can say which neurotransmitters it works on, as long as we don’t mention the drug itself. 😊
This one works on serotonin (H-5T2A receptors), you are correct. As opposed to SSRI and SNRI which are re-uptake inhibitors and in some cases work on other serotonin receptors.
I’ve run out of time and have to run!
Part 2 will come at some stage later lol.
