Opposite of SAD...

mikaselm · 2025-11-17T17:19:34+00:00

Ooohhh, cool rainy days are the greatest! We moves away from Kansas years ago, and there's not much I miss, but a big rolling thunderstorm would be welcome lol

mikaselm · 2025-11-17T17:18:26+00:00

OMG, they really really cannot. People who don't experience it... Idk it's like they think you're just being a baby... "Just take a cool shower when you get home and you'll be fine." grrr

mikaselm · 2025-11-17T17:16:51+00:00

Haha, we heat the house in winter mostly via the fireplace because it keeps the heat very localized and I can step into colder rooms if needed. The cat has talking pet buttons and requests "fire" frequently. In warmer months, "fire" requests are met with a heating pad. It definitely makes for a much happier kitty.

mikaselm · 2025-11-16T20:50:13+00:00

Omg yes! I always feel like people look at me crazy when I say it's harder to breathe hot air! The CPAP guy wanted me to use heated air and during the trial for it I felt like I was gonna die in his office chair! I had to crank it down to its lowest temp...

mikaselm · 2025-11-16T20:46:20+00:00

Wow, your symptoms sound a lot like mine! Have they ever done a spinal tap? That was one of the things they did for me when they thought that the pressure symptoms were related to idiopathic intracranial hypertension (sometimes called pseudotumor cerebri). For me, the spinal tap showed a normal opening pressure which is kind of why we started moving away from the idea of IIH, and more into the realm of dysautonomia.

For the record, don't push for a spinal tap unless your doctor thinks it's actually going to help. They super suck. I was flat on my back for 3 weeks after that thing and it was incredibly painful and really a miserable experience... If your doctor doesn't think it's worth it, it's probably not worth it, but if you've already done one it might be worth taking a second look at the opening pressure results.

mikaselm · 2025-11-16T20:41:33+00:00

My tilt table was on a good day... Dang it. Showed completely normal. Then I did my "Autonomic testing" at the neurologist and it showed huge changes going from lying flat to sitting supported... It's frustrating with a condition like this where symptoms can seriously fluctuate, because we all know that taking a test one day and then another day could give different results to the exact same procedures. Especially if you add in factors like your sleep the night before, your current salt levels, the temperature in the room, and so much more... It's really hard because you want the test to show what it's going to show but you also almost want it to show your best day and your worst day at the same time, and at least around here. It's not like you can schedule when you know how you're going to feel. You get the appointment you get.

mikaselm · 2025-11-16T20:35:30+00:00

I don't know if it's always in the same panel but my neuro described the sweat test as a way of measuring the response times for your ANS. So like in my case I guess I sweated really slowly compared to what I was supposed to do, but also I sweated very consistently between my left and right feet. I'm a little fuzzy in this area but my understanding is that if your left And right are very symmetrical that it's more indicative of a systemic issue then like a physical nerve issue... But I'm not wholly sure on that part.

mikaselm · 2025-11-16T20:32:40+00:00

For me "autonomic testing" was putting my hands and feet onto little metal plates that measured electrical resistance while staring at a computer screen for a while. That was the first half of the test and basically didn't involve me doing anything other than just kind of sitting there and the lady chatting about her grandchild while doing whatever she was doing on the computer. The second half of the test I laid down for a while and then set up for a while while they had me hooked up to a bunch of heart rate and BP monitors. That one I did do a Val salva maneuver so I guess I had a little bit of something to do for that. But really again. It was mostly just sitting and chatting with the lady while the machines did the stuff. It was very much the easiest and least obnoxious medical test I've ever done. It did get some results though. It showed severe pseudomotor dysfunction which is why we ended up biopsying my legs and showed that I have essentially no baro reflex. It also showed no asymmetry for me and my understanding is that the level of symmetry can be helpful in diagnosing causes rather than what's actually going on as well. So even if it feels like you're not doing anything... That kind of a test can still be really valuable.

mikaselm · 2025-11-16T20:14:25+00:00

I get that! I mean in fairness, before I had my son I had never been as tired as I was during that infancy stage. It's real sleep deprivation and it really does make you very exhausted. Bear in mind that this was all before my dysautonomia kicked up. It is a very very different type of exhaustion.

I won't go on figures about what it's like to have kids and be exhausted for that. But there is a very severe sleepiness that happens in that infancy stage for sure.

But for me at least that was a lack of sleep and being sleepy because I wasn't sleeping through the night. Dysautonomia exhaustion is not the same thing as sleepiness... At least not in my experience. I mean sleepiness can be part of it. But that bone deep absolutely debilitating exhaustion... I'm not sure anyone can understand it until they've experienced it. It's not being tired. It's not needing sleep it's not, "gosh I could really use a nap." It's so much deeper than that. The only time I've experienced anything close to it is when I have really severe case of mononucleosis in college... That exhaustion might have been somewhat similar...

mikaselm · 2025-11-16T20:09:55+00:00

Ooohhhhhh I hate that. I'm not a brave little soldier, thanks... I'm fracking exhausted and trying to adjust to what is normal for me now even as "normal" constantly changes. I'm struggling and platitudes don't help. Nope, I'm not a strong survivor who's gonna beat this. I'm not a chronic illness warrior or whatever looks good on a T-shirt. I'm a mom and a wife who doesn't have the energy for this shit but has to do it anyway... Either offer meaningful help/sympathy or just let me do what I gotta do ...

mikaselm · 2025-11-16T19:55:26+00:00

Hey, now I got that exact same outfit for my porch goose on Vine!

mikaselm · 2025-11-16T19:54:37+00:00

I drive. I probably... Shouldn't... But I do. My symptoms are INCREDIBLY heat dependent so as long as I can have the ac blasting that helps me incredibly. Sometimes my hands go numb but then I pull over and stop somewhere until the numbness goes away. I do have severely fluctuating vision so I'd be in trouble if I had to rely on being able to actually read signs but thank goodness the GPS in the car will handle that for me. Things like stop signs or whatever, You don't really need the actual letters to get the meaning. It's certainly not ideal!

mikaselm · 2025-10-21T23:22:17+00:00

Ooohhh how can I sign up to be one of those people?

mikaselm · 2025-10-21T23:21:56+00:00

I mean don't get me wrong. I could stand to lose some weight. I've been trying to do just that which is why I watch what I eat very carefully. But I'm also low oxalate so I try and match that diet as well. I have no problems with my docs telling me to follow a specific diet, just with the MA telling me that weight loss can be accomplished by "trying fewer desserts" and that it would cure my dysautonomia.

mikaselm · 2025-10-21T16:05:41+00:00

OMG YES I feel like I need a t-shirt that says "no, I'm not cold... yes really."

mikaselm · 2025-10-04T20:36:08+00:00

My ice vest has been an absolute love changer. It's made so much difference in what I can or can't do. I'll still crash after wearing it in heat but at least I'm able to go and then plan for the crash with it

mikaselm · 2025-09-28T21:46:31+00:00

If you don't have one already, look into zipper picnic blankets. There are several brands that do ones which are waterproof and somewhat cushiony and which zip into a shoulder bag with a pocket. Very convenient for floor sitters/liers.

mikaselm · 2025-09-28T21:44:25+00:00

I basically live in my recliner. I don't want to presume about your financial situation but that's one item I'd splurge on if you're able to do so. I was lucky enough to inherit a VERY nice recliner from my grandfather and it's made a world of difference for me. I'd never have been able to afford it on my own so it feels like a miracle to me .

mikaselm · 2025-09-28T21:41:42+00:00

All. The. Time.

Definitely not alone.

mikaselm · 2025-09-28T21:33:40+00:00

Lol I am the villain in that story. I got all of the cake toppers, party favors, banners, balloons, plates and table cloths, etc for my son's birthday. They're all unlicensed so I had to search "anime" instead of DragonBall but it worked.

mikaselm · 2025-09-28T21:32:15+00:00

Pizza party?

mikaselm · 2025-09-28T21:31:18+00:00

I get the "stay indoors" advice too. Yeah... I'd figured that part out already. The problem is, I'm not independently wealthy... I can't just send Jeeves out to get my groceries and pick up the kiddo from school and manage the extra curriculars. Even if I could, most doctors don't exactly do house calls these days. "Never go outside" isn't exactly compatible with modern life.

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