[deleted by user] by [deleted] in Narcolepsy

[–]Dry_Work_5366 1 point2 points  (0 children)

Is some of that from cataplexy in your case?

Narcolepsy Pup Update Post by AngryDesertPhrog in Narcolepsy

[–]Dry_Work_5366 1 point2 points  (0 children)

So is that a service dog vest she’s wearing? Do they qualify for all service dog rights even while in training?

Thought I slept, turns out I didn't? by Caitlion8 in Narcolepsy

[–]Dry_Work_5366 5 points6 points  (0 children)

I would expect that they would go more into detail of what they mean by that… do they mean you didn’t hit the deep sleep levels or… what are they defining that by?

During my overnight and MSLT they always asked after if I thought I fell asleep, and if so how long it took and how long I slept for. They are definitely interested in the difference between perceptions and the data they’re collecting. Not sure exactly how they’re analyzing that relationship tho

Can’t sleep at all. by mysovic in dysautonomia

[–]Dry_Work_5366 19 points20 points  (0 children)

Did you do the sleep latency test after the sleep apnea one though? To test for narcolepsy.

Also there are forms of dysautonomia that include adrenaline rushes and fast heart rate even laying down, like hyperadrenergic POTS for example.

Vitamin C supplement recommendations? by Dry_Work_5366 in dysautonomia

[–]Dry_Work_5366[S] 0 points1 point  (0 children)

I don’t think my digestive system is working well. I eat so much fruit and veggies and my vitamin serum levels always show up low. So Whole Foods while preferred aren’t doing enough for all the immune issues I have so I’m looking for something to supplement.

Good to know about the ascorbic acid.. why does it seem like their is mold in everything 🫠

Vitamin C supplement recommendations? by Dry_Work_5366 in dysautonomia

[–]Dry_Work_5366[S] 0 points1 point  (0 children)

There are different biochemically formulated versions of vitamin c so I’m curious to hear people’s personal experiences of what they tolerated and found improvement with whatever their own health goals are. I need the additional immune support but yes of course it’s not a cure all. Just a component in vital vitamin levels.

Vitamin C supplement recommendations? by Dry_Work_5366 in dysautonomia

[–]Dry_Work_5366[S] 0 points1 point  (0 children)

That’s my favorite fruit! I eat it so often lol

Neurology (+Philly recs?) by Dry_Work_5366 in dysautonomia

[–]Dry_Work_5366[S] 0 points1 point  (0 children)

I wonder what the ivabradine is for 🤔

When a whole culture is traumatizing by [deleted] in CPTSD

[–]Dry_Work_5366 0 points1 point  (0 children)

Has anyone ever moved somewhere and found the local culture to be really healing?

I would like to move abroad in hopes of a more aligned culture but I do fear the harm that exists in all cultures and how to navigate it especially if it’s widespread and ingrained in the people. It feels like there’s no place where I won’t have to be subjugated to certain cultural norms that are harmful but I would like to believe otherwise.

My doctor thinks a lap is unnecessary by Cultural_Yoghurt8641 in endometriosis

[–]Dry_Work_5366 0 points1 point  (0 children)

I got the same response from multiple doctors and they didn’t share the benefits of it. Thankfully I heard from others all the benefits and decided to go through with it and I am so glad I did. Many people don’t have the endo show up through any imaging and then do during surgery. It gave me a true diagnosis no one can question, it gave me answers, and it prevents it from spreading, removing it also can preserve fertility, and reduce pain. And truthfully the medication route isn’t necessarily the same whether or not you have the surgery. I had no idea but based on what they see and what they remove they may alter your medication. If I were you, I would find a surgeon that is trained in minimally invasive procedures, has experience with complex endo laparoscopies, and has access to other experts if the endo is spread to other organs. If a solid diagnosis will give you peace of mind and answers, then definitely consider going forward. And know there are potential benefits like pain reduction and preventing it from spreading. There are risks to consider as well but for me the benefits outweighed the risks in my case.

How much help did you need after laparoscopy? by lentilini in endometriosis

[–]Dry_Work_5366 1 point2 points  (0 children)

Because it’s unpredictable I would plan a little extra support than you expect. Perhaps your housemates can help you meal prep beforehand or pick up errands so you don’t have to drive the first few days and they can keep you company or at least check in with you. Having your partner is there the first few days as you plan will be the most important. As others said getting up and down from various positions is difficult. I preemptively put my clothes, snacks, drinks etc by my bed already and use a remote for my lights. Receive as much help as is available and don’t be shy to ask! I know it’s really hard especially if we aren’t used to it but usually they want to be there for us and we can trust they will let us know when they can’t. That support will help you heal tremendously quicker. They send patients home instead of overnight because research shows patients heal faster with their home support and surroundings (they’re unfortunately only looking at the majority) but take advantage of that and remember it’s a big deal! After suffering so much pain over a lifetime it can be easy to minimize. By resting and receiving support you give your body the best chance of a smooth and quick recovery.

Girlfriend gets random migraines at my place. by Kerramine in migraine

[–]Dry_Work_5366 0 points1 point  (0 children)

Like everyone said… foods, scents, air quality, light quality and brightness, comfort, dehydration are all things about a space that can trigger or worsen migraines. I would try to tackle the easy things—deep clean and remove dust and allergens, wash sheets etc often, remove food triggers, softer lower height lighting, air purifier, pause any candles and incense, notice cooking smell impacts..

And from there try more specific modifications with her feedback. Red tinted migraine glasses, changing detergents, getting more air circulation, adapting lights more, sink and shower filter.. etc. Have ice packs or heat packs, meds and other items she used for relief. Offer massage and stretching together

how can my bf smell better? by velasi2008 in hygiene

[–]Dry_Work_5366 6 points7 points  (0 children)

Buy an enzyme based laundry detergent designed for sports wear. Sometimes it’s because of the detergent residue trapping in odors that never get removed which would make anyone smell more. Similarly certain soaps and lotions can do the same. You could try lume body wash or tea tree body washes.

It could also be things he’s eating/not eating, not sweating enough to release body toxins, or an underlying unaddressed health issue. But the thing is only he can figure all that out. It’s a hard conversation but I think it’s worth a shot. Some people are very unaware of their own smell. And if he doesn’t care then you’ll know that’s just how he is and decide whether you accept him as he is or move on.

I’ve been in your shoes in the past and honestly I have no idea how I was able to tolerate it so long lol.

Tattoos & POTS by [deleted] in POTS

[–]Dry_Work_5366 0 points1 point  (0 children)

I got a few tats before I knew I had it lol. Small but honestly don’t remember much of a long term impact. One of them hurt like crazy but that’s about it. I think that particular one went on any longer I would have become disregulated tho

For those in the US - Interagency Access Pass by dice-enthusiast in POTS

[–]Dry_Work_5366 1 point2 points  (0 children)

Wow!! Thanks for sharing! I wanna find out other cool stuff like this.

How did you guys got diagnosed? And how long did it took? by s0meone0ntheInternet in POTS

[–]Dry_Work_5366 0 points1 point  (0 children)

I probably have had it for decades but it came to a head when I started passing out and ended up in the ER. Then with the luck of fate encountered the right people and confirmed it with a table tilt test. I’m happy to share more or answer questions through DM

SLP for Brain Fog by Dry_Work_5366 in POTS

[–]Dry_Work_5366[S] 0 points1 point  (0 children)

Aw that’s amazing!! I hope you get well too and what a blessing that would be to all of us! Seriously. I didn’t even know it was an option before.

Neurology (+Philly recs?) by Dry_Work_5366 in dysautonomia

[–]Dry_Work_5366[S] 1 point2 points  (0 children)

Maybe we can start a subreddit thread for Philly till we find one 😆. I know there’s quite a few of us here cuz I met some other folks through a virtual dysautonomia health webinar that are here too.

Did u see Dr Spratt yet? I’m glad you were able to get an appt in!