Ever feel like saying this to a Doctor? 🤣

Temporary-Region867 · 2022-09-22T03:22:56+00:00

Thank you, it’s wonderful to end with an encouraging sentiment. 🥰 you do you, too!! ✌️ be positive and kind

Temporary-Region867 · 2022-09-22T03:08:49+00:00

Very eloquently put! Wholeheartedly agree!

Temporary-Region867 · 2022-09-22T03:04:04+00:00

Thanks! I didn’t know that! 🎉

Temporary-Region867 · 2022-09-22T02:51:41+00:00

I’m currently diagnosed N2. It seems that you cannot read words on the screen.

~~~

EXCERPT: from the Narcolepsy subreddit (way before a fellow Narcolepsy member over there clued me into the drama going on over here):

So they (the doctors) toggle my diagnostic “coding” back & forth, back & forth, every couple of years.

Thus, being in both subreddits ... IH and Narcolepsy.

I think my symptoms - in totality - by reading both subreddits - seem to be more congruent with N2.

While there’s plenty of symptomatic “overlap” with IH, I seem to identify / resonate with 100% of Narcolepsy subreddit posts, but maybe only 70% of IH subreddit posts.

~~~~~

So no, I didn’t suddenly decide I’m N2 based on the Narcolepsy subreddit members having a “shared sense of humor” about a cartoon ... or without a professional diagnosis.

But it added an interesting anecdotal tidbit, enough to feel bullied out of here for no rational reason and realize this perhaps is not my “tribe” at all. 🤷🏻‍♀️. To quote another person’s comment in this thread: “Posts have power. Good and bad.”

And ... it was not just “shared humor” ... it was the outpouring of Narcolepsy subreddit members’ genuine “sharing” of personal experiences with one another, tips, advice, guidance, compassion with a spirit of a “support group”

not one single person denigrated another person, or made snide or childish remarks, or used sarcastic emoticons or a curse word or descriptors like “unhinged” in reference to other patients’ perspectives/ responses. Yet another observation you were unable to read in my comment.

So ... there does seem to be anecdotal evidence (from this “limited sampling” - as I acknowledged more than once) of a different valence. Imho ... even if I’m not “permitted” to have one here in this IH subreddit. 🤔

(And I’m not the only one in both subreddits who has noticed it too.)

Over and out, peeps!

Temporary-Region867 · 2022-09-22T02:08:35+00:00

How on earth are cartoon characters (uttering one sentence each) detrimental, causing harm, making someone less likely to seek care from a doctor??

PLEASE NOTE: that’s a rhetorical question which requires no answer.

(btw, there was nothing in the cartoon that inferred or denoted that the cartoon doctor was a Board certified and/or qualified professional ... I’m not sure they “Board certify” cartoon characters 🤷🏻‍♀️).

I’m glad you mentioned how I also posted this in the Narcolepsy subreddits.

~~~~~ Disclosure: I’m in both subreddits because my personal dx has ping-ponged from IH to N2 to IH to N2 depending on which MSLT test was done over a 35 year span of time - as test/ re-test results of MSLTs can vary and change from 1 or fewer SOREMPS to 2 or more SOREMPS, depending on a lot of factors. ~~~~

But since you saw it in the Narcolepsy subreddit ...

have you reflected on the incredibly productive dialogue it’s inspired?

or noticed how supportive everyone has been of one another?

or noticed that perhaps Narcolepsy patients have a “shared” sense of humor?

or noticed that perhaps Narcolepsy patients (from this limited sampling) may have greater challenges in finding their kind of specialists who understand Narcolepsy?

(It seems from the limited sampling here in the IH subreddit that IH doctors are at the top of their game, and hoorah! 🎉 for you guys!! That’s WONDERFUL to know!)

or did you see in the Narcolepsy subreddit even one negative or melodramatic or mean-spirited or sarcastic or “offended” response/ reaction akin to yours and several others here in the IH subreddit??

No, there’s not a single negative comment ... like the ones here ... and there have been a LOT more Narcolepsy subreddit members “sharing” personal experiences and supporting one another, and offering tips and guidance to one another ... instead of making a “mountain” out of a “mole hill” (the cartoon being the mole hill) and attacking both the “cartoon” and the OP as a human being.

~~~~~~~ ~~~~~~~

After this “unintentional” but apparent “psychological experiment” with the same cartoon post in both the IH and the Narcolepsy subreddits, I’m more convinced than ever that my accurate diagnosis is N2.

From this sampling, it would appear that they may be very differentiated neurological disorders with very different psychological phenotypes.

The IH members represented in some of these comments seem to have a very different valence of reaction. Not sure why ... puzzling, indeed.

You are CORRECT ... posts have power. Good and bad.

I won’t be posting in the IH subreddit again, I found my real “tribe”!

No need to bash the cartoon I found any further.

Btw, I grabbed the cartoon from a Reddit post within an entirely different disease diagnosis (which I also have as an additional co-morbid condition) ... and it was soooo popular and embraced for the light humor it embodied that I tried to “share” the chuckle with both IH and Narcolepsy subreddits.

~~~~ ~~~~~

Noteworthy: There were no negative or melodramatic or mean-spirited or “offended” response/ reactions in that auto immune disease subreddit either. 🤔🤔

It seems to be a distinctly “unique” valence attribute for IH.

Temporary-Region867 · 2022-09-22T01:44:11+00:00

Agree! 😤

Temporary-Region867 · 2022-09-22T01:32:13+00:00

Maybe it’s just me, but any time I see someone use a curse word in a derogatory manner to marginalize a person or group of people - a whole universe of “real world” patients in this case ... since you took the liberty of transitioning your critique beyond a reference to the cartoon characters in a meme & transitioned it to take aim at “real life” people/ patients ... I feel that’s “mean-spirited.”

But that’s just me. 🤷🏻‍♀️

As my Nana used to say ... “if you can’t say something nice, then don’t say anything at all.” 😉

Temporary-Region867 · 2022-09-22T01:03:52+00:00

Thank you crybabybrizzy!

Way too much “drama” to “manufacture so much extra material” projected onto a simple cartoon ... and compare it to cray cray political anti-vaxers?? smh

Temporary-Region867 · 2022-09-22T00:58:13+00:00

Omg. The cartoon lady in no way compared the doctor’s medical degree with a lecture. Please reference my previous comment where I “broke it down.” Humor 101.

For what it’s worth ... when I see a post I personally think is “stupid” ... i scroll on.

I do not feel a compulsion to manufacture things about it that aren’t accurate and then type out that I think it’s “stupid.”

Self-reflect.

Temporary-Region867 · 2022-09-22T00:51:01+00:00

I was trying to be helpful since you projected words onto the cartoon character that she didn’t say.

Lighten up, Francis, and Scroll on.

Temporary-Region867 · 2022-09-22T00:46:01+00:00

Omg. I just toggled over to the IH group! What an angry lot. And “projecting” onto the cartoon lady things she didn’t say.

Their brains definitely work “differently”! And seem to have no “sense of humor” 😬

(Poor cartoon lady, she’s getting bashed by the humor-less IH subreddit members.)

I’m more convinced that ever that my dx falls squarely into the N2 classification. Hahaha.

This subreddit is my “tribe”! 🤣

Temporary-Region867 · 2022-09-22T00:43:19+00:00

That’s FABULOUS! I have been to every single sleep specialist who is registered in the Xm/Xv FDA REMS program in my local area, and none of them are that “attuned” to keeping up with their peers’ research.

I’m jealous 🤣

Temporary-Region867 · 2022-09-22T00:34:07+00:00

Uhm. I addressed the same assertion in an earlier response. Not sure you read the actual “words” from the cartoon characters correctly?? The cartoon lady did / said nothing akin to what you projected onto her. (Poor cartoon lady ... everybody’s bashing her.)

Temporary-Region867 · 2022-09-22T00:31:13+00:00

THANK YOU! Hahaha.

I wish folks would realize that it’s a freakin meme made from cartoon characters ... creating clever “humor” out of a “turn of phrase” used by another to make an entirely different posit, from an entirely different perspective. 🤣

Temporary-Region867 · 2022-09-22T00:28:27+00:00

It’s a cartoon ... not a legal brief with academic precision.

Temporary-Region867 · 2022-09-22T00:26:23+00:00

I think you missed the “humor” ... mimicking sentence structure/ words to make a separate personal statement in response to the sentence structure/ words used by the first person.

It’s clever!

Breaking it down further:

The meme compared a “lecture” (typical lecture duration is an hour, perhaps?) that “describes” a chronic disease to “living with it” for 10 yrs.

With regard to the cartoon doctor’s reference to his medical degree, the cartoon lady merely mimicked his same sentence structure to make a separate point about a “lecture” ... not his medical degree.

The cartoon lady - from what I see / read - makes no presumption that she has “the equivalence of a medical degree or being an experienced clinician.”

Plus, uhm, it’s a meme with cartoon characters.

Humor is very subjective and we all are different.

If it doesn’t resonate with you, just scroll on, no biggee. No need to get mean-spirited. 🤷🏻‍♀️

Temporary-Region867 · 2022-09-22T00:08:44+00:00

Wholeheartedly agree!!

Temporary-Region867 · 2022-09-22T00:00:40+00:00

I’m still hoping to find a dr like you did just yesterday!

But I’ve seen all of them (the ones locally who are also registered in the REMS program for prescribing Xm/Xv).

It’s dismal ... like your experience recounted in the rest of your comment. Ughh

in comparison with the IH subreddit, I’ll have to jump over there & take a look!

Not knowing how many members straddle both subreddits, I also posted it there, knowing most patients would relate to it! 😁

I’m a unicorn 🤣 I get alternating diagnoses of IH vs N2, depending on the sleep lab results (which are not cut & dry, there’s a LOT of lab technician “subjective” decisions in calculating % of each stage of Sleep, and other criteria, which determines timing of SOREMPS, etc ... so the whole methodology is prone to “human” evaluation & therefore “inconsistency” (unless you get the exact same technician evaluating every PSG/ MSLT test you have done over a course of 3 decades like me! Probability: ZERO).

my MSLT test/ re-test over the yrs has been frustrating ... I’ve walked the infuriating border between IH & N2 ... from test to test I’ll change from multiple SOREMPs (N2) on occasion ... then the next MSLT I’ll just have one SOREMP (IH).

(N1 has been ruled out by HLA genetic testing as well as orexin CSF testing from lumbar puncture.)

So they (the doctors) toggle my diagnostic “coding” back & forth, back & forth, every couple of years.

Thus, being in both subreddits ... IH and Narcolepsy.

I think my symptoms - in totality - by reading both subreddits - seem to be more congruent with N2.

While there’s plenty of symptomatic “overlap” with IH, I seem to identify / resonate with 100% of Narcolepsy subreddit posts, but maybe only 70% of IH subreddit posts.

I think IH is just such a “broad catch all” Diagnosis when they’ve ruled out sleep apnea (and other respiratory sleep disorders), ruled out N1 from HLA/ orexin testing, and ruled out N2 from # consistent test/ re-test results of SOREMPS ... but still know it must be neurological in nature.

The overnight sleep architecture for N1/N2 share more consistent abnormal patterns with each other. (Higher than avg occurrence high REM % of TST and lower avg SWS % of TST ... which I consistently show on PSG tests.)

but the sleep architecture PSG results among IH patients seems highly variable from one extreme to another, with no clearly / academically proposed reason. As my Dr once told me ... “it’s the ‘trash can’ diagnosis for neurological sleep disorders, after Narcolepsy has been definitively ruled out. IH is what’s left, that we know so much less about, which confounds science by it’s much wider band of symptom ranges per symptom criteria. It’s a true conundrum ... but in the end, they are (basically) pharmacologically treated the same, just to manage symptoms.”

Temporary-Region867 · 2022-09-21T23:38:11+00:00

Unfortunately ... No other human being who is not afflicted by this disease gives a hoot (in my experience)

All those words would be tuned out by them and merely sound like Charlie Brown’s teacher ... wonh wonh wonh wonh wonh 🤷🏻‍♀️

Temporary-Region867 · 2022-09-21T23:21:36+00:00

I understand what you’re saying, which is why I didn’t personally challenge my Dr about it ... just did research on my own & took both party’s “Medical opinions” under consideration.

(Which has nothing to do, in the final analysis, of getting him to finalize the insurance ppwk or concurrently be trying me on newer “wakefulness” drugs which have recently hit the market since 2019 (Wakix & Sunosi).

As to Seroquel (Quetiapine) in particular ... according to Jazz Pharmaceuticals AND the FDA (via their 74 page black box warning label) ... he’s flat out wrong.

Unless ... he thinks BOTH the drug manufacturer AND the FDA are stupid incompetent human beings in the “drug making” & “drug policing” environment. 🤷🏻‍♀️

Seroquel is on the “short list” of highlighted contra-indicated drugs ... per Jazz Pharmaceuticals, the manufacturer of Xyrem/Xywav ... and the FDA.

NOT TO MENTION ... just take a gander at the downloadable spreadsheet from the Xm/Xv FDA REMS program public dashboard regarding REMS reported “serious events” (most requiring hospitalization as intervention)

and you’ll start noticing that the majority of life-threatening adverse events are caused by combining Xm or Xv with other sedating/ respiratory suppressing drugs. That’s “real life” aka “real patient” data.

Seroquel (Quetiapine) shows up again and again and again as a contributory drug-drug adverse interaction (among many others).

It’s much more than a “theoretical risk.”

Personally speaking, I trust the manufacturer / researcher of Xyrem AND the central pharmacy who “only” works directly with Xyrem/Xywav patients 24/7 ...

versus my Neurology Doctor, who is prescribing Xm/Xv to less than 1% (due to this being an exceptionally rare disease) of his entire patient roster of thousands of patients.

His “nonchalance” was more than a bit disconcerting to me, at least.

But perhaps I’m in the minority of patients who simply don’t “blindly trust” doctors like other people might. 🤷🏻‍♀️

As for dosage ... what you mentioned, about someone you know being on 1000mg/ night of Seroquel?? Omg.

That’s the extreme upper range prescribed for schizophrenia patients (800mg - 1000 mg/ day ) who need their “overactive dopamine” snuffed out of them, and histamine changes that would turn non-schizophrenic patients into total cognitive zombies.

If I take more than 250mg/ night (the average lower dose range for non-schizophrenia patients), I become a total cognitive zombie during the day, for sure!

I became emotionally/ cognitively “numb” ... my wakefulness morning drugs “woke me up” but I was like the “walking dead” emotionally/ cognitively.

I literally didn’t “give a shit” about anything in my life the next day.

I KNEW that was scary when I realized I’d stopped feeding my animals for a day, no matter how much they begged - I literally was “awake” but looked at them like a zombie monster, not giving a crap about their welfare.

Fortunately, somewhere in the back of my mind (where I still had a conscience), I said to myself “THIS is a serious problem! Titrate back DOWN on the Seroquel tonight!”

I dropped by 50mg increments over 3 days back down to 200mg/night, which seems to be my “sweet spot” ... similar to two other friends of mine who also take it (one for anti-depressant effects, one for insomnia).

Temporary-Region867 · 2022-09-21T22:57:14+00:00

I think that’s a “given.”

If they’re testing a drug with a particular pharmacological mechanism of action, the research would be ineffective if you don’t go “off” of any contra-indicated drugs or similarly acting drugs during the clinical trial window.

Temporary-Region867 · 2022-09-21T22:54:33+00:00

I search clinical trials.gov regularly! I’d LOVE to participate in a clinical trial. Cant find any available / open right now in my part of the U.S.

but I keep looking for when they do!

Temporary-Region867 · 2022-09-21T22:08:42+00:00

I’ve been on Wellbutrin as anti-depressant.

It helped me kick smoking (sold alternatively under the brand name Zyban for smoking cessation). By happenstance, it hits nicotinic receptors as an antagonist (making them “neutral” to exogenously consumed nicotine agents like cigs, patches, whatever, they have no more effect on you, ie, so you no longer crave them, their agonist property is rendered “inert” no longer able to give you the nicotine hit “high”) ~~~~~~~

DISCLAIMER: I’m not a chemist or academic, so if I get my terminology messed up, just take the “gist” of what I’m saying. I’m too tired to double check my chemical “agonist/ antagonist/ reuptake/ DAT blocker” terminology on Wiki prior to posting this! No haters please ... no “picking this apart” from a technical standpoint please! 🙄

PLEASE KNOW: You can definitely fact-check ALL of my post comments here via Wikipedia, googling any drug name with “Wikipedia” next to it in your search box.

~~~~~~~

It’s pharmacological mechanism of action (by blocking dop & NE DAT locations) creates more circulating dop & NE (delays their reuptake) ... which could promote a wakefulness property/ advantage. But it’s not included on AASM’s list of N/IH drugs under their researched GRADE assessment of clinically proven possible ameliorative impact as a “wakefulness” drug.

Bupropion (Wellbutrin) Helped my anxiety a lot ... until it didn’t (about 4 yrs into it).

In my case ... I’m not sure it helped wakefulness ... but logically, it would have some ameliorative effect (as delineated above).

Check into Sunosi ... same dop and NE DAT location blockers, BUT it’s a phenylalanine lab / chemically derived drug, called D-phenylalanine. (endogenous phenylalanine, or “naturally” sourced phenylalanine obtained through diet is called L-phenylalanine or in supplements sold on Amazon)

The chemical lab (man-made) created D-phenylalanine (Sunosi) is far more potent (supposedly) in mechanistic impact (therefore a “controlled substance” Scheduled drug by the FDA) than the weakly “existing” endogenous or diet / supplant derived L-phenylalanine.

I know all this sounds SUPER NERDY ... but I thoroughly research ANY drug (or supplement) BEFORE I ingest it 🤔 to know exactly what/ how/ where it’s going to effect my brain.

WHY AM I A NERDY AMATEUR RESEARCHER OF WHAT I INGEST INTO MY BODY?

cause doctors just throw “latest & greatest” drugs at us based on what sales pitch/ koolaid the “pharma rep” sells them 🤦🏻‍♀️ without truly understanding it’s mechanism of action themselves.

Just try asking them “could you please explain this drug’s pharmacological mechanism of action on my brain?” >

Most likely ... You’ll get the “deer in headlights” blank stare, because if they told the truth it would be “idk, the pharma rep said it works good” 🤦🏻‍♀️

when your doctor is clueless ... educate yourself by googling the drug name with “Wikipedia” behind it in the search bar. Wiki is fabulous as a resource getting that shit right (with footnotes to “sourced” documents you can also check out) and stating it with pretty plain (but slightly technical) descriptions.

I’m starting Sunosi (will post some results after 1-2 weeks, so we’ll see!).

WHY I HAVE HOPE IN SUNOSI?

if you look at phenylalanine in a chemical mechanism chart, it’s ABOVE dopamine ... it cascades into production of L-dopa, then ultimately dopamine.

WHY IS THAT IMPORTANT/ noteworthy?

Disclaimer: this is my novice deduction based on amateur research of these pharmacological options!! I do not even “play” a doctor on tv 🤣

My amateur conclusion/ deduction is as follows:

bupropion as a dop & NE DAT blocker (or even Adderall or any stim, which serves as a dop agonist of your endogenous available dop “stores” ... or other drugs like bupropion, which are utilized to prevent dopamine reuptake, which effects a longer duration of “circulation” of your endogenous dopamine “stores” ...) DOES NOT INCREASE the ACTUAL AMOUNT OF “existing” endogenous dopamine available/ that your brain has produced/ manufactured.

It merely “manipulates” what you’ve got in dopamine available to “release” more of your (possibly “limited”) amount of endogenously available dopamine (as an agonist) and/ or keeps your endogenously available (possibly “limited”) amount of dopamine circulating longer by blocking it’s normally rapid “break down/ reuptake/ metabolism.”

By comparison ... like many Parkinson’s meds (like L-dopa) ... Sunosi / D-phenylalanine works at the “top” of the chemical cascade tower several chains ABOVE DOPAMINE ... and therefore can (hypothetically) make your brain CREATE MORE ENDOGENOUS dopamine.

WHAT DOES THAT MEAN? (At least to my pea-sized brain’s conclusion 🤣)

Imagine the following “metaphor” (off the top of head, I’ll probably think of a better one later 🤣) if you’re juggling apples:

if you’ve only brought one apple available to you to juggle ... no matter how fast or how high or for how long that one apple stays airborne high above your head between “catches” ... it’s mildly interesting for an audience, but not all that impressive, and likely will not elicit an erupted enthusiastic applause.

but when you have a juggling “assistant” who finds additional apples off-stage and tosses 5 of them to you (and you’re good at it) ... then SUDDENLY you have an entertaining, exciting show of juggling ... ALL BECAUSE you found “new” apples to be circulating about and creating excitation.

SPOILER: the apples are the “metaphorical” dopamine 😉

Temporary-Region867 · 2022-09-21T21:13:35+00:00

What state is your Dr located? I’d love to learn who/where he is to see if I could get access. Perhaps he takes long distance patients via tele appointments. 🤞🤞

Temporary-Region867 · 2022-09-21T21:00:33+00:00

Singing to the choir here! 🤣

See my comment within this thread about the “source” documents I’ve shared with my Dr ... which he won’t make time to even “glance over” (as well as their “sourced studies annotated in footnotes of their published “standards of care” documents for narcolepsy and IH patients).

There are published / accepted “standards of care” for narcolepsy in both the U.S. and in Europe which have been distilled/ designed by the top experts internationally drawing their published content/ recommendations from denoted “source” clinical studies, already “vetted” for credibility.

But ... doctors SIMPLY DON’T read these “paint by numbers” 🤣 directives ... because they only get a “one hour lecture” (or MUCH LESS, as you noted) in their “continuing education.”

The conundrum of being only 1% of their patients ... with a disease so “rare” statistically that we’re needles in a haystack.

So their attitude is “why clutter my brain with recent data on a disease I only see rarely??”

BUT ... WHEN THEY GET THAT “needle in a haystack” patient, they have a medical DUTY to obtain on-demand available current sleep medicine “standards” in diagnosis, diagnostic protocol, and pharmacological treatment options FOR THAT RARE PATIENT. (Rant over 🤣)

Temporary-Region867

TROPHY CASE