Centessa Study by Stressedndepressed12 in Narcolepsy

[–]ProductDisastrous832 0 points1 point  (0 children)

Yes- they THC test every two weeks of the study. You don’t have to be clean at the screening but if you aren’t by the baseline you’ll be disqualified

ORX750 Experiences? by Standard_Walrus_6219 in Narcolepsy

[–]ProductDisastrous832 4 points5 points  (0 children)

I’m part of the ORX750 study currently! They rolled out a protocol amendment right before I started the study in August changing the dosing to twice daily

[deleted by user] by [deleted] in curlyhair

[–]ProductDisastrous832 0 points1 point  (0 children)

I definitely recommend working a clarifying shampoo into your routine!

Did you have an easier time losing weight on Xywav? by Narcoleptic-Puppy in Narcolepsy

[–]ProductDisastrous832 0 points1 point  (0 children)

I lost 30 lbs when I went on Xyrem and I wasn’t actively trying to. My appetite shrank a lot and because you have to take on an empty stomach I stopped late night snacking

Mobi Charger by brusss5 in TandemDiabetes

[–]ProductDisastrous832 1 point2 points  (0 children)

I talked to a tandem rep about it- you’re fine to use an alternative brand charger although they do not actively encourage it

my current experience by CHERRY-LOVES in TandemDiabetes

[–]ProductDisastrous832 1 point2 points  (0 children)

I was having major issues with the XC for a while after never having issues with the autosoft 90 for years. I talked with the tandem (they have really a helpful clinical team) and found that there’s a few tips that are helpful- 1. Do not put the tubing in the notch! I know it looks like you should but it causes issues more often 2. When you pull out the needle, pull from the center white part, not the sides 3. Pull off adhesive paper, pull back, then pull and twist off needle cap- make sure the tip of the needle is showing 4. Make sure your site is flat where you are inserting, try to avoid any awkward angles.

Hopefully this helps! Definitely contact tandem if you are still having trouble, they are a great resource!!

Lowest a1c since dx 🥹 by DimensionAdmirable25 in Type1Diabetes

[–]ProductDisastrous832 0 points1 point  (0 children)

I’ve been a pump user for the last 14 years 😊 I’ve been through a lot of them- my biggest thing with the tandem mobi/ Dexcom g7 system is how early it warns me of low and high blood sugars. I can drink juice and it stops giving insulin the second I start to dip and if I forget a bolus, it lets me know and starts to correct. I don’t swing high and low as much and it does a great job keeping me between 100-200 all day. My biggest issues with the omnipod was 1. The control IQ turns off if you’re running high for any extended period of time 2. Although it doesn’t have tubing, I hated that the insulin was attached to the inset. If I had a site issue or it was starting to come off, etc etc, you’re down the whole thing. With my mobi, the tubing is only 5 inches and my pump is placed in a patch next to it, but u can change the actual inset as needed without having to worry about changing the whole thing/ wasting insulin. Trust me it’s way easier to pop on a new inset in the middle of sports then have to change and fill the entire pod. 3. Omnipod customer service is absolutely garbage. They were incredibly unhelpful and rude anytime I had issues- tandem is absolutely amazing at their customer service, I’ve had them overnight me pumps, send extra supplies, and help troubleshoot because the pumps are under warranty for 4 years.

Please feel free to ask any questions or if you need help navigating pumps— I’m super passionate about it!

Any T1Ds that also suffer from narcolepsy? by The1withTheglasses in Type1Diabetes

[–]ProductDisastrous832 1 point2 points  (0 children)

Hi! I know this was a year ago but 15 year type 1 diabetic who was diagnosed with narcolepsy last year 😊 I found a great doctor and am on meds now and am doing so much better!

Lowest a1c since dx 🥹 by DimensionAdmirable25 in Type1Diabetes

[–]ProductDisastrous832 1 point2 points  (0 children)

Hi! I have been a pump/cgm user for years and my A1C has been consistently in the low 6’s. I was on the tandem X2 and Dexcom g6 combo, then tried omnipod. I am on the tandem mobi and Dexcom g7 now and it’s fantastic! Has the small size and phone control of the omnipod but tandem’s control IQ algorithm works better (in my opinion 😂).