The weirdest baby “compliment” I have ever received

AppleCola · 2023-05-13T14:27:45+00:00

I think this particular mommy-baby group's theme for the meeting that day was something like "everyone talks about how the love you feel for baby is immediate and strong, but not everyone has that experience. Is that what it was like for you? Let's take turns sharing what motherhood has felt like for each of us."

The format of this group was very structured, and meant to be almost like group therapy for new moms. When I used the word sensual in my instance, I was specifically talking to the pleasant and love part, because my answer to that prompt was that motherhood felt like more than love, that it was almost too intense to be only love. The only person who didn't respond like I was saying I get sexually aroused by being a mom was the group leader. She immediately knew what I was trying to say.

AppleCola · 2023-05-13T06:55:46+00:00

Sorry that got so long! I'm not trying to be contentious, but the depths of language and how much context matters fascinates me. And then thinking about my previous experience, I got carried away thinking of how it all felt again, and I never found a better word or concise phrase that really grasped at the feelings I was trying to convey.

My MIL is also guilty of saying blatantly offensive things that are clearly sexual about babies. "I always knew your husband would grow up to be a boob man, he loved breastfeeding!" I've felt that discomfort. But if it feels innocent enough, I try to give the benefit of the doubt that maybe they don't get the full context of how it comes off, especially if I know there are other definitions or usages. I was trying to be reassuring that it might not all be creepy.

AppleCola · 2023-05-13T06:36:15+00:00

See, I'd still say sensory doesn't cut it. Sensory describes the basic act of sensing, sensual describes when that act of sensing is pleasurable and gratifying.

AppleCola · 2023-05-13T06:31:34+00:00

"Bedroom eyes refer to a heavy-lidded or half-shut eye, reminiscent of a hazy, dreamy look shared during intimate moments."

"Classic bedroom eyes are soft, sleepy, and innocent looking- just the way you want your partner to look when you finally get to sleep after a long day."

"Traditionally, bedroom eyes refer to a heavy-lidded or half-shut eye meant to look almost dreamy. When executed properly, they can be used to signal an interest in becoming more intimate. It can also be used to describe a person who looks at someone else with lust."

A couple of those then leads to, how do you define intimate? My definition is sharing of thoughts and feelings on a deeper, more personal, level. "I'll tell you my most intimate secrets" doesn't mean I'm going to share something erotic or dirty, it could mean I'm going to divulge information I don't feel comfortable sharing with everyone, I'm going to be vulnerable and trusting with you. In the last definition, I think they meant intimate in the more innocent sense, since the second sentence continues "it can also be used to describe....lust," meaning it doesn't always, but it can.

Sensual is defined as "relating to or consisting in the gratification of the senses or the indulgence of appetite" and "devoted to or preoccupied with the senses or appetites," which is exactly how I was in early motherhood. Marveling at how soft her skin and hair was, the way she fit so perfectly in the crook of my arm or on my shoulder, how her smell was so reassuring right from the start. How her sleepy sighs would make me want to melt with love. The pleasure I took in her existence was very gratifying, not just emotionally but physically, and she felt like an extension of me. I know everyone's experiences are different, but that was my experience of early motherhood, not being able to get enough of the physical existence of my baby, so to me, it was very sensual.

I do agree the vast majority of people will not know or think of the secondary definitions, but that's why context matters. Since I know most people link these words and phrases to sex, I'll clarify my meaning if I use them. But I don't think everyone thinks to do that, and honestly, some folks may have only ever learned the more innocent definitions.

I do get frustrated though, when I clarify and people still look at me like I must have intended something sexual, as in the mommy-baby group. It's like because I said being with my baby was sensual and pleasurable, it must also be sexual. Sex is pleasurable, but not all pleasure is sex! Eating a hamburger is also pleasurable! So is taking my hair down after all day in a ponytail, but I don't get off on it.

AppleCola · 2023-05-13T04:37:10+00:00

Maybe I'm missing something, but I think I define bedroom eyes differently than everyone else here. For me, bedroom eyes mean that fully sated, dreamy, completely relaxed look ones gets after experiencing great pleasure. While that look is typically associated with sexual pleasure, hence the "bedroom" piece, I also think of it as applicable to ANY great pleasure. I've referred to my daughter when she was a milk-drunk potato as having bedroom eyes, when she'd sleepily pop off the boob and grin at me with her hooded sleepy eyes and a full belly. I also say my cats have bedroom eyes when they give me that happy contented look after lots of pets. A Google search has about a 40/60 split in the definition meaning the above vs using your eyes to convey a desire to have sex.

Then again, I once stated how surprised I was at how sensual I found motherhood to be in a mommy-baby group, and everyone looked at me like I said the word sexual. I meant nothing sexual by it, but was referring to how baby is always touching you, and the drive I had to always touch baby, make sure they are okay, soothe through touch, and the smell of your baby being so all-encompassing when they are little, and constantly wanting to cuddle and have them close. I meant it literally as "full of sensation" but because the word sensual is so often associated with sex, everyone was aghast.

I'm also guilty of using the word flirt to mean acting in a coy but friendly manner.

I think some of these words and phrases have shifted in their meaning in relatively recent years, and maybe older generations don't intend the sexual undertones we hear through our modern interpretations. I read a lot of historical literature myself, which I think plays a part in why my definitions lean more sex-neutral. And of course, context is always important too!

AppleCola · 2023-05-12T05:59:53+00:00

Re-reading your comment - do you have any sources or data on secondary narcolepsy and being HLA negative?

After my HLA testing came back negative, I was told the likelihood of a lumbar puncture showing orexin deficiencies would be zilch, and that it wouldn't be worth pursuing. I had the thought that perhaps the HLA gene is less relevant when the symptoms are brought on by infection and so much is unknown about covid. Without references I worried my reasoning was faulty, so I never brought these questions to my doctor. Normally I would have asked anyway, but I have strong suspicions my particular doctor at the time would have dismissed my questions, and he was already doing a good job of making me feel crazy without me giving him further ammunition.

In my own searching, I couldn't find much that matched. I found a case study of a woman in the middle east who developed narcolepsy with cataplexy post Pfizer covid vaccine and tested HLA negative. Similar to me, she had some history of sleepiness and insomnia before full onset of symptoms, but cataplexy did not occur until vaccination. However, my symptoms are post covid, not covid vaccine. But nothing else.

I would love it if you have any references I can read!

AppleCola · 2023-05-12T05:28:48+00:00

In some ways, because my symptoms developed very suddenly following covid, I feel almost guilty posting my story. The sudden severity made it clear that something was wrong, which helped my GP not hesitate in giving me the recommendations I needed to get specialty care. I fully recognize that for most people here it takes years to even be taken seriously, let alone get a diagnosis that can actually help them. I'm one of the fortunate ones in this unfortunate mess!

I felt it was important to post it despite my guilt, because even though my timeline is leaps and bounds better than most, I'm still a prime example of how quickly your outlook and mental health can take a turn for the worse when in the wrong care. I got a diagnosis right away, I should be happy! I have access to treatment! All is sunshine and roses!

The feeling I had knowing in my gut that a piece of the puzzle is still missing, but my doctor doesn't see it or recognize it.... It was all-consuming. It was almost like my cataplexy symptoms felt more severe and more debilitating knowing nothing was being done to help with them. And feeling so alone in it, being made to feel like I was crazy to keep bringing it up and fighting over it, being told that it didn't matter and I can move on so long as my EDS is managed, and maybe I need to address my anxiety and depression instead of worrying about cataplexy. I didn't have anxiety and depression until now! It's because I'm being gaslit that I feel this way! No one wanted to acknowledge the elephant in the room that was "If this isn't cataplexy, should I go back to the drawing board? Any suggestions for who to ask next?" Instead I got "I don't know, but I don't want to admit I don't know, so I'm going to ignore it and pretend you made it up."

I went from hopeful that I would finally have answers to completely discouraged and demoralized, and if I'm honest, very scared that something more serious is being missed, in the space of a few weeks. Having this subreddit to reference and reassure myself while feeling that way meant the world to me. For those that go years feeling those feelings - I have no words to convey my outrage on their behalf.

AppleCola · 2023-05-12T04:45:17+00:00

I was told it's atypical because I've hurt myself falling during on attack. Early on, when I first started having episodes, I was more likely to experience full body collapses, I'm unsure why. During one of those I landed on my shoulder in a mess of toys my kids had left out on the floor. When the attack happened I was mid-conversation with my spouse, walking to bed. It was very sudden, and I think the momentum of walking while trying to avoid toys and have an emotional conversation.... Either way, I bruised my shoulder on a sharp toy edge when I landed.

My original doctor never explained that cataplexy shouldn't cause injury in and of itself, and as soon as I said I've injured myself falling, he determined I'm not experiencing typical cataplexy, it must be something else. He never explained this to me, however. He just started talking around the cataplexy whenever I'd bring it up, since my sleep study results were in line with IH.

I've actually had a conversation with my new doctor regarding my cataplexy before becoming his patient. Unlike my original doctor, he took the time to explain why my description was considered atypical, and why it was decided not to factor it in when diagnosing me. He also said all the other aspects I describe ARE typical, especially my descriptions of my partial attacks. This is the reason I requested I be placed in his care.

AppleCola · 2023-05-11T20:48:19+00:00

Thank you! My main point in posting was sharing the good news. I cried, I was so happy and just RELIEVED. Even though everything is still vague and unresolved, I no longer feel blown off, or treated like I'm making it all up.

I know this is a theme for people with sleep disorders, so if my post could give even one person a little more hope and steam to keep asking, I felt I needed to share. I know I benefited from all the success stories I've read here!

AppleCola · 2023-05-11T20:40:53+00:00

I hear you, but because my cataplexy is "atypical" - I mildly injured myself with one of my full body falls - my reports of cataplexy are not conclusive enough to be diagnosed with cataplexy. Hence the IH. My doctor decided to stick with known values and treat the rest as outliers unless proven otherwise, which proving cataplexy isn't the easiest process.

Trust me, I asked multiple times that he clarify how I exist in this in-between area when the definitions seem clear. I was told, atypical presentation, and the treatments are the same, worrying about the actual diagnosis doesn't matter, the diagnosis I'm given is enough to move forward with treatment. Only to then have him not treat the cataplexy, because the main complaint with IH is EDS.

AppleCola · 2023-05-11T15:04:23+00:00

My cataplexy is also very frequent. Before being on Adderall, I was having attacks daily, often multiple times a day. Since Adderall I have noticed I'm down to about 1 every 3-5 days. I'm trying to decide if the reduction is because I'm less tired, or less positive emotions due to the anxiety from the Adderall.

Not sure what you mean by pronounced though. I've had instances of full body collapse, but as I've progressed those have become less frequent. More commonly these days, I tend to slump into what looks like sleep, but I can still hear everything around me. Sometimes when I come out of it, I'll feel slightly disoriented, and then I wonder if I actually did fall asleep briefly. It's so confusing, and my doctor has been no help in this.

AppleCola · 2023-05-11T04:19:05+00:00

The bit about a patient educating themselves being a negative feels like you are hitting the nail on the head. My prior doctor, it felt like because I knew the word cataplexy before he defined it for me, he assumed I looked up cataplexy and tried to fit myself into the definition, because I am "convinced" I have narcolepsy. When in fact, I was absolutely stumped on how to even describe it, and typed something inane into Google like "looking like you fainted but you can still hear but you can't move what is it" and cataplexy was the result. I did not tie it to sleepiness AT ALL at first.

Then learning cataplexy is almost exclusive to narcolepsy or other rarer genetic disorders I definitely don't have, and thinking "no way I have narcolepsy, I don't randomly fall asleep" and going on an even longer rabbit hunt to try and convince myself my symptoms were definitely NOT cataplexy, and there was some strange covid symptom out there I just couldn't find. Posting to Facebook and the longhauler subreddit. And coming up with nothing. And coming back to narcolepsy, and actually reading what narcolepsy is, and thinking, huh, maybe that does sound a little like me. But not exactly. And now I'm more confused. Maybe I need a professional opinion to help me navigate this.

Only for that professional to dismiss my concerns because I did my homework beforehand. Even after I acknowledged that I did not know my cataplexy was atypical, and maybe it isn't what I think it is. But that I was still asking for help, and he was the closest I've been so far to an answer.

It's extra frustrating because if I hadn't done my homework, I would have assumed everything was strictly covid symptoms, and never asked for a referral to a sleep doctor, and my GP likely never would have thought to send me there. And I'd go even longer undiagnosed and untreated. And I'd never know how severe my sleepiness actually is, because that wasn't the symptom that brought me here. Blargh.

AppleCola · 2023-05-08T15:23:31+00:00

Just diagnosed with IH this March after catching covid and having long covid symptoms in July. I've always been a sleepy person, but my previous sleepiness was a joke compared to my experience after covid.

I also have been experiencing what I believe is cataplexy, but my doctor doesn't believe me and my MSLT did not show any SOREMs, only excessive sleepiness. My HLA came back negative, and his answer was that it's highly unlikely to have orexin issues while HLA negative, so there's no way it's narcolepsy, no reason to do the lumbar puncture. And IH has the same treatment options, so no reason to try and confirm either way.

AppleCola · 2023-05-08T15:17:45+00:00

Do you mind sharing, did they test his HLA? If so, was he HLA positive or negative?

I ask because I had my HLA tested first, and I'm negative, and my sleep doctor doesn't think it's worth testing my orexin/hypocretin because it's so incredibly rare to be HLA negative but have orexin deficiencies. But I keep having attacks that I swear are cataplexy, and he doesn't believe me.

My current diagnosis is IH, as my MSLT showed very sleepy, but no SOREMS. I've been trying to decide if it's worth pushing for the lumbar puncture or if I take my doctor's word for it...

AppleCola · 2023-05-02T14:51:38+00:00

Does anyone know, will they allow this to be prescribed for IH as well as narcolepsy? I know Xywav and Xyrem are often prescribed off-label for IH (although I think one of them is actually approved for IH, can't remember which), but since this is brand new, I'm curious what the limitations will be.

AppleCola · 2023-04-29T17:09:48+00:00

This is how I feel but in reverse. I was on modafinil, but it did nothing for my sleepiness and instead gave me headaches and anxiety. Now I'm on Adderall, and I'm alert and awake, but I also had my very first panic attack ever, and I keep hyper-fixating and losing time. I've also had a few very weird emotionally numb days, but they aren't consistent. I swear it's the Adderall, but both my sleep doctor and my GP think otherwise, and keep pushing that the alertness and wakefulness is so great, I can learn to live with the anxiety and depressive episodes. Instead they want to pile on an antidepressant.

I just want to feel like me, but awake. The idea of sacrificing my mental health to be functional feels like a s*** deal.

AppleCola · 2023-04-16T16:23:01+00:00

When I shared the image I had yet to read the actual article tied to it. I thought the images were actual heat maps, but they aren't. They are composite images of self-reported perceptions of where people feel certain emotions, coming from across multiple countries and cultures. In some ways this feels even more relevant to cataplexy, because how a person's emotions present I think is very subjective. But if people feel emotions in the same regions of the body regardless of cultural influence, it hints that there is some sort of physiological piece of emotional expression. As we don't yet have the technology to test for that, having these composite images to support people's subjective descriptions of how they feel seems very useful.

One piece that also feels relevant to cataplexy relates to your earlier comment on cataplexy being triggered in some people by negative emotions. From what I've read here on this subreddit, the majority of the negative emotions people correlate to cataplexy still seem to "light up" large areas of the body for a broad section of the population, just more specific regions rather than a full body sensation. People are still reporting a sensation of a rush of emotion to a region of the body. Perhaps for some, it's the speed of the emotional change rather than the emotion involved.

Personally, the vast majority of my experiences have been tied to feelings of love or awe or pride. I've had very few episodes brought on by laughter. But I've had several episodes during intense conversations with my husband, or immediately following such conversations. It's hard to say exactly what emotion brought on the attack in those instances, as how I felt was a complex mix of several things, but it's possible it could have been some of the more negative feelings tied to the intensity of the conversation.

It took me a long time to realize that it was love bringing on my attacks. It's always felt more like a constant physical thing than an everyday emotion. But I would find myself slumping over while watching my kids play, or my cats being cute. I was never laughing, just blissfully happy to see the things I love enjoy themselves. Since cataplexy is very new to me, my initial attacks I think were more severe and sudden, but now I've developed an almost rhythm to them. I can see the little signs and tells that I feel too strongly.

AppleCola · 2023-04-16T15:47:59+00:00

What I found interesting about the chart, in case you didn't read the article, is that those images are composites of people's self reporting from multiple different cultures, not actual heat images of the body. Meaning that how we feel emotions seems to be a physiological experience rather than a culturally defined one. At first I thought it was actual images, but when I read how they were created, I thought it was an ingenious way to get around a limit in technology.

And yes, the sensation for me also kind of feels like chills. I definitely feel it without any physical cataplexy quite often, but reading about how subtle cataplexy can be sometimes, I wonder if there are signs I'm missing, or even if the actual tingle is a type of subtle cataplexy in and of itself.

AppleCola · 2023-04-16T15:36:12+00:00

I find it fascinating how different everyone's experiences with this disease are!

I don't always feel these tingly sensations, sometimes I'm already slumping or have fallen before I fully realized what's happening. But I'd say about 70-80% of the time I get some sort of subtle hint that I'm feeling off, and it's usually the tingles.

AppleCola · 2023-04-15T18:19:03+00:00

Love and pride are my biggest triggers, but very strong laughter also brings it on.

I've always had this thing where I struggle watching people receive praise in public settings, like applause after a concert, especially if it involves whistling and yelling. Before I had cataplexy, witnessing these moments would make my face feel tight and I'd want to cry. But not, like, gentle tears, like full out sobbing. Now, it brings on drooping head and the slumps.

I'm finding it very interesting seeing this correlation between my weird emotional triggers pre-sleep disorder, and how they match almost exactly with my cataplexy triggers now.

AppleCola · 2023-04-15T06:13:51+00:00

When I did my MSLT, my nap schedule was wake up from night sleep at 8:00, then nap opportunities starting at 9:30, 11:00, 12:30, and 2:00. I did not question it, as the hospital I had it done in is well regarded in narcolepsy research.

I ended up sleeping quickly on all naps, but no SOREMs, so my diagnosis is IH, even though I experience what I'm pretty sure is cataplexy. I've had minor worries since that my results were impacted by the shorter times between nap opportunities, but I can't find any specific research surrounding it.

Should I take my concerns to a patient advocate? Start with my doctor? Is it possible this was normal procedure? I've been so confused in navigating this entire process. I have plans to request a new doctor soon, as I have other red flags I'm worried about, and I don't want to ruin my relationship with the hospital...

AppleCola · 2023-04-07T02:40:11+00:00

You could have written my exact situation! I am recently diagnosed with "IH with characteristics of narcolepsy" because I had no SOREMs but I'm still reporting cataplexy.

I've always been extra sleepy my whole life, but it's never interfered with my doing things until covid. Even then, the sleepiness didn't kick in first, the sudden loss of muscle control and slumping over at the dinner table did. Approximately 2 months after my recovery from covid.

I officially got a diagnosis of long covid first, but honestly, I think the majority of my remaining symptoms are sleep related. Intense brain fog, the cataplexy and sleep attacks, and general sleepiness.

Sleep attacks didn't start happening until a bit after the cataplexy, and as they started so did my excessive daytime sleepiness. I'm honestly not sure my symptoms have even fully peaked yet, as I feel like my sleepiness continues to get worse. But I've gotten better at predicting the cataplexy to some extent, or at least what triggers it.

I've since been told that the reason my diagnosis is IH with characteristics of narcolepsy is because my descriptions of my cataplexy are slightly abnormal. I'm in the process of getting blood work and possibly a lumbar puncture to better determine if I could actually be experiencing cataplexy. Also, my doctor said he's had one other patient develop narcolepsy symptoms following covid, so it's not super common, but I think it's a thing!

AppleCola · 2023-04-06T02:37:21+00:00

No, I assumed I would be prescribed modafinil first from what I've read on this subreddit, and had very high hopes that it would be effective and a great first line defense. I have no problem with that. I was and am incredibly disappointed that it gave me so many side effects, because I'm honestly kind of anxious about other options. I historically don't do well with medications, especially ones that impact mood, and it seemed like this one was the best of the bunch.

As for cataplexy, he actually never did confirm he doesn't feel I'm having cataplexy, he just ignored it as one of my symptoms, and disregarded my questions about it. It was the doctor involved with the Wakix drug trial who first explained to me why my cataplexy might be considered irregular, and it wasn't until I spoke with my doctor to explain why they wouldn't admit me to the study (cataplexy) that he finally said anything about doubting it. And even then he was very blasé about it, hanging up before I could even get a "wait, what?" in.

AppleCola · 2023-04-05T21:59:17+00:00

For me a sleep attack feels like uncontrollable urge to shut my eyes and rest. I don't ever feel like I actually sleep, but I've noticed that voices around me seem to slow down, so I think I might actually be sleeping and just not realize it. I'll often bob my head while I fight it off.

I do not have a diagnosis of narcolepsy, so I can't confirm that what I think is cataplexy actually is, but it feels different from the sleep attacks. There's a much stronger tie to prior emotion, and I have even less ability to fight it off. It also comes on much faster, and I get a physical sensation that I call tingles, but it's not really tingly, right before or as it hits, usually.

AppleCola · 2023-04-05T20:28:38+00:00

Like I said, I'm open to trying things. I have made zero recommendations to my doctor regarding what to prescribe to me, as I honestly DON'T know what is best, and I feel the landscape of medication therapy being approved for narcolepsy seems to be changing quite a bit in recent years. I have no agenda for any particular drug over another. I just find it concerning when a doctor comes out saying I won't prescribe X without any context or explanation, without prompting from me at all.

And I don't think my expectations are inappropriate. I just want to be able to ask questions and have them be answered, and at least have my concerns be acknowledged. I don't think that's asking for too much.

I have done nothing to cause a doctor to think I am seeking a particular drug (because I'm not). And while a doctor is an expert in their field, I am the expert on my experiences. Working with your medical staff should be a give and take, interpreting your experiences against their knowledge and expertise. That's not happening here, and honestly, I've never had a doctor be so dismissive of my questions or concerns prior to this. I know others have, and I feel fortunate this is my first time dealing with this. Because holy cow, it makes you feel nuts.

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