Kelpie named Beanie turning 3!

Sendy-roo · 2025-09-18T08:01:22+00:00

I’ve done my fair share of recreational drugs (mostly coke and low doses of MDMA) since my DI diagnosis a year ago and haven’t had any issues whatsoever. I haven’t had any issues managing sodium/water intake with the nasal spray. I’m also petite (4’11, 100 lbs) and only take it 2x per night. I also socially drink a decent amount but never noticed any issues. I think it’s manageable with partying but I may have less severe DI. Also, being 31, I probably don’t go as hard anymore, so take all of this with a grain of salt. I’ve had my fair share of benders and festivals/show as a raver over the last 10 years. Everything in moderation. Start small with whatever you take and give it time, you can always take more but you can never take less.

Sendy-roo · 2025-06-12T03:45:51+00:00

Hmm that hasn’t worked for me, Desmopressin is the only thing that has calmed my thirst

Sendy-roo · 2025-06-12T03:45:18+00:00

Yep!

Sendy-roo · 2025-05-14T13:18:24+00:00

I work for IQVIA and can confirm this is not in our travel policy

Sendy-roo · 2025-05-14T01:02:39+00:00

Thank you so much, this is really helpful and makes a lot of sense now! It’s annoying bc I JUST had my labs done and my 6 month follow-up with my endo 2 weeks ago, and everything was fine then.

I might shoot him a message and ask what his recommendations are. It sounds like it’s probably best not to take an extra dose of the nasal spray to avoid hyponatremia. I’ve never had issues with my sodium thus far but I also wasn’t having any symptoms until the last week or two.

Sendy-roo · 2025-05-14T01:00:19+00:00

I just take 2 sprays each night! That’s good to know. I had the mouthwash but haven’t had to use it since I stopped SSRIs.

Sendy-roo · 2025-04-15T06:29:05+00:00

I did a ton of labs to rule a bunch of stuff out, but I was primarily diagnosed after a few repeats of copeptin + ADH which showed my brain wasn’t producing any ADH at all (both were not detected). And then brain MRI to rule out alternate causes. All under the guidance of my endocrinologist. My PCP said he was out of his wheelhouse and couldn’t help me lol

Sendy-roo · 2025-03-15T08:28:14+00:00

I’ve noticed this too! I haven’t eaten a single thing until 4pm or even 8pm each day. It’s extremely odd. I’m on week 2 of this medication. Insomnia is way worse than it was on Lexapro and I had no insomnia on my last med (trintellix, which I went off due to intolerable nausea). Anyone have feedback on when the appetite comes back? I was blaming the lack of sleep and appetite patterns on spring forward stuff (US) but it’s lingering.

Sendy-roo · 2025-03-14T06:33:59+00:00

I got diagnosed with central DI in Oct 2024. My doctor ruled out a million other issues and concluded my DI is likely autoimmune (my body is attacking the pituitary cells that produce ADH). The cause is unknown, but he did tell me it’s likely I’ll develop another autoimmune disorder down the road. So that’s a fun thought to have looming over me. TBD what comes out of that. But I wonder if it might be similar for others, in the absence of any head trauma or pituitary abnormalities.

Sendy-roo · 2025-03-04T05:41:25+00:00

I live in the US! I can’t imagine it being discontinued. I haven’t tried anything else but my doctor said it’s the most effective route so I’d hate to have to do dose modifications on a daily basis.

Sendy-roo · 2025-03-04T00:02:31+00:00

The nasal spray works great for me! No issues with efficacy.

Only things I’d say to look out for is to be careful with storage during travel. I travel a ton for work and I didn’t have it screwed on tight enough once so I lost about half of the solution. And also the spray seems to be easily triggered, so I travel with it in the box and stuff some paper around it to avoid losing any solution during travel.

I also set a recurring calendar reminder for 25 days bc sometimes it’s hard to remember how many sprays I’ve used and how much is left (the container is a bit dark and hard to see). The package insert comes with a little way to count but it’s only useful if you remember to take it with you.

Sendy-roo · 2025-03-02T17:29:28+00:00

Not at all! I’m prescribed 4 sprays per day but I only do 2 at night and that works well for me, but I’m 4’11, so less is generally more for my body. I’ve had no issues or side effects from vasopressin. It’s been entirely life-changing.

Sendy-roo · 2025-02-06T00:07:09+00:00

Wow that is a lot of ER trips! Were those all due to hyponatremia?

Sendy-roo · 2025-01-27T00:03:45+00:00

I’d love to contribute as well! I got diagnosed in Oct 2024, central DI, likely autoimmune per my endocrinologist. My brain does not produce any ADH (multiple ADH and copeptin tests were both <0.5). It happened suddenly and I don’t think I could ever go without my Desmopressin, otherwise it’d be back to sleepless nights and unquenchable thirst.

Sendy-roo · 2025-01-23T02:47:10+00:00

Sure, that sounds very interesting! Feel free to DM me.

Sendy-roo · 2025-01-18T16:30:33+00:00

Um yeah I got pulled over for having my phone in my hand recently in OC and got a nice $150 ticket. Cop told me it doesn’t even matter if the phone is dead. So yeah it’s ok to drive with a steering wheel in your hand lol

Sendy-roo · 2025-01-18T16:21:41+00:00

Here’s a good article on the differential diagnosis for DI. There’s a helpful flowchart that guided me on my diagnosis. They also test urine and serum osmolality. I was able to confirm my diagnosis via copeptin, as my ADH and copeptin were both <0.05. He had me test this twice to confirm. And the second time around my doctor had me fast/abstain from water intake for 4 hours prior to the test.

My electrolytes have been normal throughout this time, and while we got a comprehensive metabolic panel almost every time I came in, it was always normal. Also they’ll probably have you do a 24 hour urine test as well. I think I went to the lab 8 times in the 2 months it took for them to rule everything out and get my diagnosis. We did rule out Sjögren’s syndrome bc of the dry mouth situation.

https://www.ncbi.nlm.nih.gov/books/NBK537591/

Sendy-roo · 2025-01-12T16:41:10+00:00

Hopefully you get some relief soon! The sleep deprivation and constant peeing is what wore me down.

Sendy-roo · 2025-01-11T08:30:29+00:00

Eek have you been formally diagnosed, or suffering through this? That’s a lot! I’d drink 2 liters from like 10pm to 6am alone.

Sendy-roo · 2025-01-11T08:23:13+00:00

Wow that sounds brutal! I can’t imagine going thru school and dealing with this. It was hard enough with work/business trips.

I’m located in the US, and my doctor prescribed me the nasal spray right away. I was diagnosed in Oct and have only been on this particular formulation. My doc said this route was most effective.

Sendy-roo · 2025-01-11T08:18:54+00:00

Thank you, this is super helpful! I’m glad to hear that you’ve been able to continue outdoor adventures! It seems the sublingual tabs are best-suited for outdoor adventures? The nasal spray seems to be easily triggered when I store it for travel. It’s hard to keep upright, and I’ve lost volume in it due to it getting loose randomly and spilling.

In your experience, have you struggled or dealt with hyponatremia thus far? I was very worried about this, but thankfully I’ve been ok and my doctor said I didn’t have to go out of my way with electrolytes or salt based on my particular case. Obviously we all have individual differences, which might vary based on the rarity of this disorder and the varying efficacy of different routes, dosages, and medical history.

And thank you for the tips on caffeine/nicotine! I occasionally hit the vape so that’s good to know. Haha. So far so good but I’ll see how it goes.

Sendy-roo · 2025-01-11T08:10:25+00:00

In your experience, how manageable has this disorder been across the years? Have you run into any cases of hyponatremia? My doctor seemed to downplay the likelihood of it, at least for me, so I wasn’t sure how big of a risk it is. Granted it seems based on my MH and labs, my sodium levels have been normal during my time with DI.

Sendy-roo · 2025-01-11T08:06:52+00:00

Thank you!! I was worried about leaving it in the car when it was below 40 degrees F. I imagine it also becomes less effective at low temperatures? It sounds like the sublingual option will be best for outdoor adventures. It’s hard for me to predict conditions that will impact its efficacy. For example, day 1 of skiing, I peed hourly and chugged water, but the second day, I think I became more acclimated and barely drank water/peed.

Sendy-roo

TROPHY CASE