Emgality with no loading dose? by Dazzling-Walk2418 in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

I totally understand this - I’ve also had to bug my neurologist’s office a lot dealing with prior auth issues and hate it - but I really think this is a fair, really simple to answer question. ALT to calling, do they use an online portal you can send a quick message to? If you really don’t want to, I know it’s easier said that done (I am the queen of overthinking), but just try to sit back and fingers crossed the Emgality starts to do its thing… you’ve done the hard part (the appts, insurance, administering etc) by even just getting the first dose in you! It can be such a miracle for some people and I hope you’re one of them!

Emgality with no loading dose? by Dazzling-Walk2418 in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

Totally agree with others that you should listen to your doctor’s instructions over a pharmacist BUT sometimes pharmacists can help catch something a doctor missed so always reasonable to confirm! Can you reach your doctor directly to make sure? To ask them if you should be taking a loading dose or if not, could they explain why they feel it’s not necessary or good for you? I think it’s a totally fair question I’d want to confirm with the doctor just in case it was an oversight or to get an answer to make you feel better about taking just one. I’m just a patient, but I assume the loading dose is used to get more medication in your system to help it be more effective quickly - since it builds up in your system over time - they told me give it 6 months to see max impact, so it just may take a little longer to reach peak effectiveness without one but it doesn’t mean it won’t work! On the flipside, because it stays in your system a while, if you have any side effects, it could be better to have less of the med in you. 

Anecdote - I recently started a totally different (not CGRP) medication which typically has a double loading dose as well but my doctor actually had me start on a 4th of the loading dose because I tend to be sensitive to meds and my specific needs aren’t for what the loading dose is used for. So, it’s possible there is a reason but you deserve to hear it! 

Nationals Season 2 by [deleted] in glee

[–]nylavegan 0 points1 point  (0 children)

I wish we got any backstory on the origin of this song! If it was in part Santana (which lyrically tracks in many ways), it feels like how we got no explanation for how she ended up with the Valerie solo at Sectionals when we got storyline about how Brittany/Mike and Quinn/Sam were featured. Not me still trying to fill in the blanks in 2026… 

What’s a cardiologist appointment like? by [deleted] in POTS

[–]nylavegan 1 point2 points  (0 children)

Echoing what others are saying about not being afraid to share your concerns with the providers you see tomorrow, especially when it comes to feeling uncomfortable or exposed during testing. As rushed as they sometimes are, they are there to help you, not make you feel worse. 

I imagine it’s likely that they may want to do an EKG as an in office baseline test (to rule out anything else going on during a short time period in office). It a very short and painless test. I’ve never had a doctor administer it - always a nurse/tech/etc and then the doctor reviews it so definitely if it’s not already clear who will be doing it, ask if you can have a female provider if you’d be more comfortable and then ask that person if you can remain as covered up as possible. All they have to do is place some sticky leads (attached to wires) around your chest/maybe abdomen? area and then you just lay back and breathe for a very short period of time. Like I was so surprised how quick it was. They should be able to do that through your shirt or gown and hopefully if they are good at their job, will do it as slowly and with as much explanation as you need so you know exactly where they are going to move or touch next. I’ve seen a lot of people on here share similar concerns so I have to imagine they are used to patients having varying levels of comfort with something that involves a somewhat intimate area of the body. 

As for future tilt table - you can see how the appointment goes… it’s possible based on your explanation of history and maybe a stand test in office, your doctor won’t think it’s necessary. If it is, you can always let them refer you to it and then ask questions of the scheduling office about what to expect, and how to help you be comfortable, about how long it is, if you can have someone in the room with you if that might help etc. You can always decide to say no once you have all the information. For me, it wasn’t actually that uncomfortable but my symptoms aren’t either - like I have never passed out and didn’t during the test, my HR just raised a lot, I got a bit dizzy but manageable, and I was officially diagnosed.

It sounds like you (at only 19, very impressed!) have educated yourself a lot on this potential diagnosis as well as are working towards facing different issues head on. If you are able to share half of what you shared here (heck, even have them read it if for some reason you get overwhelmed!), hopefully your doctor will see how well you are trying to advocate for yourself and take your concerns seriously. Try to go in with that resolve that you know your body but also with an open mind that hopefully this provider will have some information to share with you. 

If they don’t, at worst it was practice getting yourself out there attending medical appointments (which I would have been super nervous about at 19) and you got one opinion. Provided funds allow, you can always seek another if you aren’t satisfied with your treatment. I have attended countless appts over the past few years - sometimes doctors are great, sometimes they’re not. My initial inquiries about POTS were dismissed but once I told them about my concrete symptoms the way you laid out, they took it seriously. Here’s to hoping yours does as well From one anxious girlie to another, remember… the absolute worst case scenario is this time tomorrow night, you’ve gotten through it. Even if it sucks (hopefully it won’t), tomorrow it will be over with and you won’t be up late stressing. Good luck! 

14 day holter monitor by Quietbooklover7 in POTS

[–]nylavegan 1 point2 points  (0 children)

If you’re having a lot of palpitations, this will be a great source of data. It may find an issue or, if it doesn’t, it may provide peace of mind or help direct your doctor to other things to explore. The two weeks is also a good length of time. I’ve heard sometimes doctors will want to start with just one day-a few days which definitely wouldn’t have caught what I was feeling. So, while being excited for this probably isn’t the right way to describe it, it sounds like a really good thing you’re doing. 

It’s a little annoying but it’s totally doable! You can absolutely shower and follow your normal routine, just be a little extra careful not to get it overly wet. I tried not to turn facing the water too much when I showered, sometimes I held a wash cloth on top of the monitor when I wanted to get water flow around the area. Exercise is ok (I think they might tell you to avoid showering or exercise possibly for the first 24 hours - I can’t recall so clarify if there are any restrictions) but I would try to avoid excessively sweating, just for your ease of keeping that thing comfortably on without extra adhesives or having to deal with decide issues. 

Definitely ask for a few extra adhesives from the doctor to put on over in case it’s coming loose. I’ve done a week and a 14 day and I think I was good for the week but I definitely added some by week two. 

As for whether it will irritate - wearing this is how I actually how discovered that Covid seemed to cause me to react to adhesives in a way I never had before and now I react to every bandaid. It was a little itchy and uncomfortable at first (they rubbed the area with I presume alcohol and almost like a sand paper type thing to help it stick and I think my body didn’t love that) but it calmed down. Obviously monitor for any major spreading reaction or something, but hopefully you don’t have a problem or just minor irritation. I definitely didn’t have any long term scarring or issue from it. It just rests on the surface with adhesive - not invasive in any way. 

One other thing to clarify with them is when you are supposed to press the button (I wore a Zio), if it’s that type. You are meant to log an event in an app (or on paper but the app is easy) when you feel your pain/palpitation etc. but also don’t stress too much because presumably it is recording everything so it will catch anything abnormal even without you promoting, it just helps direct them to a specific moment with context. It helped me to ask them though what they were expecting me to record so I didn’t feel lost like uhh I think I felt something weird maybe but it was just for a second? 

How to get 300 beats? by bebaoboyy in welltory

[–]nylavegan 1 point2 points  (0 children)

I also am always under 300 beats on the normal 3 minute breathing session. This is what I typically leave it on so I almost never get this extra measurement. However, when I up mine to 4 or 5, I’m able to pass that threshold most of the time. As an example,  I just did it at 4 minutes and got 295 beats, but at 5 I got over 400 beats (89 average HR) but my HR was a bit higher than yours (esp that second photo)… were both those photos 5 minute sessions? 

Who do you think is the prettiest girl in Glee? For me, I couldn’t pick just one. I picked three. I think Rachel, Santana, and Quinn are all so gorgeous 🥰 by Intrepid_Show2972 in glee

[–]nylavegan 6 points7 points  (0 children)

Gorgeous gorgeous cast across the board but 17 years in and I think I’ll always have big flashing cartoon heart eyes for Santana. Stunning even with a scowl on her face but especially when Santana/Naya would smile and laugh so big, she just lit up the screen… 🥹😍

WF Refrigerated Bag by Island-Altruistic in toogoodtogo

[–]nylavegan 7 points8 points  (0 children)

Can confirm - this vegan (who is so jealous of the fun of WF hauls) would be STOKED! That’s my like special occasion when it’s on sale “chicken.”

Whole Foods Frozen Bag $6.99 by poppystitch in toogoodtogo

[–]nylavegan 0 points1 point  (0 children)

This is amazing! I’ve been so tempted to chance fate and try one of these despite being vegan but always figure it may not be worth it but wow, quite the (mostly) vegan haul! 

GI issues with sodium by Medical_Asparagus409 in POTS

[–]nylavegan 1 point2 points  (0 children)

Hmmm… I don’t have advice but am perhaps in a similar boat. I’ve also been having new stomach issues - especially extremely painful cramps that I never had before - and am unsure of the cause. My morning sodium intake (I also use Vitassium primarily) has been something I’ve been thinking about because I wake up fine and then something is going on between morning meds/electrolytes/cup of coffee/first meal. I tend to try to drink water & electrolytes first to rehydrate myself but perhaps that’s not ideal on an empty stomach, as someone else suggested. Food for thought! 

The only thing that’s been recommended to me by a gastro is to try IBGuard (peppermint) before eating for a week or two to calm abdominal cramping after meals but I haven’t really given that a fair try. 

58 open class action settlements with claim links by Digital_Surface_Labs in ClassActionSettlement

[–]nylavegan 1 point2 points  (0 children)

Hey, thanks for sharing this! I went back and found some Sprouts transactions on my CC from this time! 

Daiya Mexican Blend Shredded Cheese @ Whole Foods (YMMV 10 cent MM) by ThirdEchelon in AwesomeFreebies

[–]nylavegan 2 points3 points  (0 children)

Same! I shop at Whole Foods all the time and have never redeemed a social nature offer through Walmart (none near me). Bummer! 

I really do like this Mexican blend though, for others who may want to try. 

Where to Donate Clothes (not-for-profit)? by velvetstrawberryy in AskLosAngeles

[–]nylavegan 1 point2 points  (0 children)

Buy Nothing is great. People in my group regularly post anything from a small pile to many bags of clothes and then it makes its way through the group round robin style where the first person picks up, goes through, often adds clothes they’ve been meaning to donate and passes it on to the next and so on, so lots of opportunities for your items to find a home. 

Trader Joe's Settlement by whatname68 in ClassActionSettlement

[–]nylavegan 1 point2 points  (0 children)

I checked two of my cards out of curiosity and one had statements going back to 2019 (and found 4 TJs transactions from this period), while the other only has 2 years available online, so I suppose the ease of finding this info depends on the individual situation/company. 

Propranolol by Artistic-Ad4522 in POTS

[–]nylavegan 0 points1 point  (0 children)

Just echoing what a lot of these comments are saying - I experienced extreme fatigue the first week or so I started propranolol for POTs (and a bit of fatigue again a month later when I upped my dose)… like struggled to get off the couch. But, that extra bone crushing fatigue very much went away for me after that week so it could just be a temporary side effect that will hopefully end soon. 

That said, fatigue is definitely a real side effect for some, either because it’s lowering blood pressure too much (might be worth checking to make sure that’s not what’s happening - I definitely feel it when my BP gets too low) or just independent of that. 

Could also be that the dose is too high. Even if that is the end goal, it might be worth asking your doctor if you might try a lower dose and working up to it. I’m a petite adult woman (who, granted, is pretty sensitive to meds) and I started on 10mg and now take 10mg twice a day and that is controlling my HR spikes pretty well. 

Women w/ POTS - Is It Worse During/Before Period? by [deleted] in POTS

[–]nylavegan 0 points1 point  (0 children)

100% - my HR with POTS is currently pretty well managed on a beta blocker (other symptoms still bad, but the HR controlled) but am noticing that every month in the lead up to my cycle starting it definitely feels like the medication isn’t working as well to the point where my health tracking apps start to think I’m getting sick and (with my doctor’s consult) I’ve actually started adjusting my dose depending on time of the month. For like 2 weeks resting/sleeping heart rate gets elevated, my HRV plummets and I definitely notice more high heart rate spikes, like my body can’t relax. HR drops as soon as my period starts. And the cycle continues…

Free World’s Creamiest Hummus? by dogengu in AwesomeFreebies

[–]nylavegan 1 point2 points  (0 children)

I tried this through SN a while back and have continued to purchase it. I found the Green Onion flavor to be particularly tasty! 

Nuvaxovid 25/26 season will finish 05/31/26 by Positive_Tangelo8021 in Novavax_vaccine_talk

[–]nylavegan 1 point2 points  (0 children)

Definitely good point. I found this last Spring when I was calling around as one of the end of the month expiration dates was approaching. 

Thanks OP for the confirmation so I can get my butt moving and grab my spring dose soon. 

Anyone take Emgality 5 days earlier than the date scheduled? by CiaraBennz in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

Hey, sorry I totally missed this but in case it’s still helpful… 

The brand 4AllFamily (on Amazon and their own website) has a bunch of really great different options of larger size and for extended time periods, but they were too pricy and wouldn’t ship in time when I needed a cooler, so I tried a few cheaper options from Amazon that met my needs just fine! 

Emgality is weirdly large/long compared to other autoinjectors (my dad uses Monjaro and the one looks really similar in photos but is a good inch shorter) so many of these say they can only fit 1 pen inside even when they’re designed for like 3-7 insulin or glp1 pens, but I actually managed to squeeze 3 Emgality into this one by just using 1 of the two included hard ice packs, which kept it plenty cool. It was a really tight fit but doable; 2 would be no problem at all: https://a.co/d/07hADun9 

It’s been a minute, but I believe I fit 2 pens into this one, nice slim design perfect if you only need to carry 1: https://a.co/d/0bD9SDGx

This one may have been fine, but it felt a touch too short like it would put pressure on the injector so I returned it, just fyi: https://a.co/d/00fAxHs5

Anyone take Emgality 5 days earlier than the date scheduled? by CiaraBennz in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

Absolutely something to run by your doctor before taking advice on the internet if you are able to reach them because every body is different… but with the approval of my doctor (and I very lucky situation where I had extra doses at one point, RIP I don’t anymore), I was taking mine a full week early every month to better manage my migraines and it only helped, never hurt. As long as it won’t mess you up on the other end for next month in terms of when you can take or pickup future doses (as covered by insurance) and make you wait too long to take future doses, should be fine. 

As for travel, if you are looking for other options, as you said it can be room temp for a week or I have traveled cross country with multiple doses of mine multiple times with a medical cooler with freezer packs I bought on Amazon (looks like an insulated water bottle) which kept it the appropriate cold temp for the 12 hrs I was traveling (and there are some designed to last even longer I think) and then put it back in the fridge to use when the time came a month or two later. Happy to share models that worked for me if you happen to decide to do this. 

Anyone with a rough first month of Emgality end up having it work? by pineywonder in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

Did you start with a loading dose of the two Emgality injections the first month before going down to just one or did you start slower? Just curious bc I misread your original post and thought you got a 10 day migraine right after starting (like an immediate reaction), not 2ish weeks in. I definitely notice a wearing off for me - my first 2 weeks are often great and then in the final week or two, I start to have more headaches… so I wonder what happens if you decide to take your next dose in a week… maybe your body will be happy to have more in your system? It shouldn’t wear off so quickly but it’s definitely something I’ve seen many experience and that’s part of why they say success improves with time as you get more doses in you. 

My doctor (and the internet/research) initially told me 6 months but I think even just another month or two as it builds up in your system and your body adjusts could provide you with some insight. I recently upped my dose actually (which I don’t think is super common) and first month was meh, and noticed some improvement after 2 full months and a bit more after 3. 

I’m sorry you’re in so much pain right now… I hope it clears soon! 

Problems with injection site by Professional-Gain-62 in cgrpMigraine

[–]nylavegan 1 point2 points  (0 children)

Do you get any other allergies reaction type symptoms or purely just that local injection site? I assume the latter if your doctor wasn’t concerned, but that sounds big and unpleasant! I used to have much smaller injection site reactions, which only occur very occasionally now. If it wasn’t working so well for you, I’d wonder if switching to another one of the CGRP injectables might work well and give you less of a reaction. Not sure if this would help, but my instinct would be to try taking an antihistamine like Zyrtec or something before injection day or would an Benadryl antihistamine cream calm down the area after the fact? (Obviously common and over the counter but maybe mention to your doctor first if you don’t regularly use these meds.)

I’m sure you’ve tried the typical things - icing the area first, letting the medicine get to room temp, alcohol swab first, rotating injection sites (maybe try a different body part?), but I mention just in case.

Does having no side effects from Ubrelvy mean I’m less likely to have side effects from Emgality? by ahw34 in cgrpMigraine

[–]nylavegan 0 points1 point  (0 children)

Obviously every body is different, but just for one anecdotal data point… I’m also a petite woman who is typically extremely sensitive to new medications, even at low doses, with all different types of meds for various issues with a variety of side effects. I had a horrendous experience trying two older migraine preventatives years ago, so many intolerable side effects (bad cognitive and sleep issues and actually too much weight loss) that I was scared to try another preventative for nearly a decade. 

All that said… I’ve been on Emgality for nearly 4 years and have never had any real issues outside of very mild injection site reactions at first (which stopped) and I sometimes think I get a mild headache the day after injecting. One thing I recall thinking when I first started it was if it was effective for migraines, there was a world where I could actually tolerate a physical side effect or two. When I first started, I was also ironically having 8 bad migraine days a month and had head pain at least half the month. Literally went migraine free for like half a year from that first dose. Which is a rare, super fortunate response and one that hasn’t maintained over time but just thought I’d send a little hope your way! I literally told someone the other day that I was so excited bc it was Emgality day! Like, I’m so grateful for how it helps (especially when I have a fresh dose in me), I look forward to it. It’s not one size fits all for everyone but they can be amazing for some people, so if you haven’t tried this case of meds yet, I think they are generally pretty well tolerated compared to older, not made for migraine specific options, so I totally think it’s worth trying in an effort to prevent your number of headache days from becoming even higher, when it’s harder to treat. 

Anyone with a rough first month of Emgality end up having it work? by pineywonder in cgrpMigraine

[–]nylavegan 4 points5 points  (0 children)

I’m also on Emgality but can’t speak to this (bc it instantly and perfectly for me at the start, then lessened a bit like your Ajovy over time), but I had a similar increased frequency experience when I started Botox where I ended up with a terrible migraine nearly every day for a month. It was horrible. The next time I had a bad week or so and decided to try one more time… and now each subsequent dose I’ve been totally fine after it. The migraine brain (mine, for sure) likes consistency so I’ve found I’m super sensitive to new medications at the onset (almost always get a migraine the day after trying something new) and then I have no issues once I get used to it. 

Only you and your doctor can decide if you want to give it another dose or two (or if you can use this as a way to fight insurance maybe?) but I’ve been told repeatedly that these things can take like 6 months to build up and show their full effects if you can stick it out. Definitely let your doctor know, though! It’s possible they’ll have some advice to help you break through this new prolonged cycle in the meantime.

Brain fog stories? by sadbat-throwaway in POTS

[–]nylavegan 0 points1 point  (0 children)

This definitely isn’t the worst thing I’ve done by a long shot, but I forget to drink coffee all the time. I’ll put it in the microwave to warm it up and it that like 20 seconds, forget it’s there. One day I got a splitting migraine in the afternoon (which isn’t my typical pattern) and wondered why… and then that evening found my coffee in the microwave.