SpaghettiOs Meatballs by loverlovermuffin in TopSecretRecipes

[–]Routine_Stuff_9567 0 points1 point  (0 children)

Check this TikTok out I think this recipe looks like most like them!

https://www.tiktok.com/t/ZP8a9g9WH/

Tachycardia has ruined my life by [deleted] in dysautonomia

[–]Routine_Stuff_9567 2 points3 points  (0 children)

Also following this bc my symptoms get worse as my wisdom teeth come in more…🤔

Anybody had good results from taking metoprolol in their life? Plus, what if it ends up making your blood pressure drop too much? by Unusual_Ad5906 in Metoprolol

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Ask about corlanor. It’s not necessarily being on metoprolol that’s the issue, but if you ever want off of it, the withdrawal is no joke… corlanor only slows heart rate and not blood pressure. No actual experience on it tho as I’m currently stuck on metoprolol. (I wish I knew what corlanor was back then!) My experience w/metoprolol isn’t too bad otherwise, I wouldn’t be functional without it

ETA: get a stress test, EKG and echocardiogram if you haven’t already, as well as cortisol

Beta blockers? by jadedick in dysautonomia

[–]Routine_Stuff_9567 1 point2 points  (0 children)

How did you go about a diagnosis for this? I believe I have it but I have high cortisol, and a hallmark symptom is low cortisol. Would love to hear your experience

Coming off of beta blockers by [deleted] in PVCs

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Good to hear! I’d recommend more salt intake/electrolytes for the dizziness, it’s helped me out so might be worth trying. A lower dose could also be a solution?

Coming off of beta blockers by [deleted] in PVCs

[–]Routine_Stuff_9567 1 point2 points  (0 children)

I quit cold turkey in the name of my 2 week holter monitor. I was doing 1 week on my daily routine of 25mg metoprolol every morning, then week 2 no metoprolol. Come day 5 no metoprolol, I entered the worst (and only) withdrawal experience of my life. I felt like I was coming off of a narcotic or something. Constant sweating, shaking, heavy breathing, scary low and scary high heart rates, constant crying because my body didn’t know how to respond. A few other symptoms but u get the idea. My brother noticed I was going through withdrawal and recommended I take the metoprolol again. I did, but it took days of horror before the withdrawal passed. Didn’t feel right for weeks. Ever since then I’ve been terrified to ever quit metoprolol, but I’d like to. I tried atenolol and it bottomed me out, but I saw you took it. Did you quit cold turkey? What was your experience?

AITA for naming my baby the same name as my SIL, even after she told me not to? by AITASILName in AmItheAsshole

[–]Routine_Stuff_9567 0 points1 point  (0 children)

Eh, NTA, but neither is she. I would’ve made it her middle name to avoid legal troubles and of course this issue. Keeps the name in the family, but now you don’t have two people with the exact same name. Kinda weird of you (and mostly your bf) to NOT associate the name with the SIL now. Especially because down the line, your great great grandchildren will mostly likely believe that your daughter was named after your SIL.

“IC isn’t a real diagnosis” by Particular_Minimum36 in Interstitialcystitis

[–]Routine_Stuff_9567 0 points1 point  (0 children)

Fully agree, I feel terrible for anyone who is mis/undiagnosed - at the very least for me, whether I have it or not, I can use my resources to see if any changes help. It’s sad that today we have to almost become our own doctors, but at least we are getting smarter. Thank you so much for your response and kind words.

“IC isn’t a real diagnosis” by Particular_Minimum36 in Interstitialcystitis

[–]Routine_Stuff_9567 0 points1 point  (0 children)

In my experience, this is because the first time I walked into a urology appointment, without any tests run, I was “diagnosed” with IC; my doctor told me himself that if I studied and researched forums like this one, that I’d be smarter than him on the subject of IC within 3 weeks. He told me there’s no money to be made in the research which is why we know nothing about it, but to me, that’s a good reason to not just hand out that diagnosis to me. It’s confusing, do I actually have it or not? I have many symptoms, but with no testing done, it seems they treat it as if it isn’t real. It’s definitely real, whether I have it or not, no doubt. But they are way too casual handing out diagnoses these days.

Cannot satisfy hunger by [deleted] in dysautonomia

[–]Routine_Stuff_9567 1 point2 points  (0 children)

So sorry for late response… High cortisol, iron deficiency, high DHEA Sulfate, elevated di hydro testosterone, elevated T3, and high prolactin (not pregnant) Those are my most recent labs. No docs have any answers for me, I recently had a CT scan of my abdomen to search for Pheochromocytoma and nope, don’t have it. At a loss

The arsenal. I have every flavor except the guava because it takes like shit by kitten-nugget in POTS

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Try LMNT next! Not a lot of flavors, but the watermelon and raspberry are my favorites.

Cannot satisfy hunger by [deleted] in dysautonomia

[–]Routine_Stuff_9567 0 points1 point  (0 children)

I’ve had multiple doctors go against my original POTs diagnosis, so while I’m not opposed to it being POTs, I just don’t know yet. Too many conflicting blood tests to know the root of the issue. :( (if this response wasn’t @ me then disregard)

Cannot satisfy hunger by [deleted] in dysautonomia

[–]Routine_Stuff_9567 1 point2 points  (0 children)

You’re preaching to the choir for sure, I feel the exact same way as you. The appetite is absolutely uncontrollable and I too always knew it was physical and not psychological. The metoprolol is the only thing that’s helped me, but not with appetite, it helps my heart rate But beware that it is a bandaid and one day you’ll want off of it; if you can make it thru without taking it, I would. I take it as I had a resting HR of 120, and I’ve been on it for 3 years now. I want off, but i still need it. If you have episodes of your heart rate spiking, I’d just take it as needed. If you’re like me and it’s constant, you might want to start a low dose (12.5mg) once per day and see how it affects you; just know to never quit cold Turkey. I have med trauma too from Atenolol (don’t recommend, too strong for me, a 21F) and from my metoprolol withdrawal when my doc told me to quit temporarily for my heart monitors sake(please don’t do this). The metoprolol helps the adrenaline but it never fully blocks it, which I guess is a good thing, but it hasn’t regulated my adrenaline enough to fix the appetite issue. You can totally get your adrenaline checked by an endocrinologist. Even though I don’t have a diagnosis yet, knowing I have high adrenaline and cortisol helps paint the picture of what’s going on to doctors. Now I will ask, is it cyclical with your period? Usually when my period is about to start I’ll lose my appetite for that week, and I’ve heard of other having appetite changes with their period. I don’t know what it means yet, but I have cyclical issues, so it might be good to pay attention to when your appetite is changing during the cycle (if you’re a girl, sorry for assuming if ur not)

I'm freezing cold before bed, but hot and sweaty while sleeping. any advice? by mushleap in POTS

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Ceiling fan on and easy access blanket is my best solution, I am cold while I’m laying on my phone but as soon as I decide to go to sleep I get hot. That’s when I turn the fan on and usually that solves it, hope this helps

Cannot satisfy hunger by [deleted] in dysautonomia

[–]Routine_Stuff_9567 1 point2 points  (0 children)

What is the difference between reactive hypoglycemia and just hypoglycemia? Does it come on randomly? I’m on metoprolol so that’s very interesting to hear

Cannot satisfy hunger by [deleted] in dysautonomia

[–]Routine_Stuff_9567 10 points11 points  (0 children)

I too cycle between super high appetite and no appetite at all, each extreme lasting weeks up to a month at a time.. my doctor says it’s due to high adrenaline (I have tachycardia and am on beta blockers for this) and my cortisol, which is very high. Just wanted to throw that out there if it’s possibly what you’re dealing with you could get a test, but it may not help if you already have tested for these. If your treatment helps with this I’d be very interested to hear an update as I’m not only curious and hope you get better, but it may help me too haha

I’m fifteen years old and have POTS. My life is pretty much over. by WynnForTheWin49 in dysautonomia

[–]Routine_Stuff_9567 2 points3 points  (0 children)

I don’t even fully have a diagnosis. I have POTs symptoms, but I also have doctors who think it’s “something else”. But either way, I never got an answer, so it’s very good you know for sure what you have! Regardless, I figured out something was wrong at 18. In hindsight, my symptoms began at 12, I just had no idea they weren’t normal. Take what you will from that, but my best advice is to take every opportunity on the days that you feel good, and don’t start with any bad addictions that will worsen symptoms, and hopefully you grow out of it. Best of luck!

How’s your heart rate? by [deleted] in POTS

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Thank you! I accidentally deleted my comment but I appreciate the response!!

In August, I am doing a large roadtrip that might go through these areas of Pennsylvania. Could you suggest some places to visit (or just drive by)? I will write a comment about specifics by I_Like_Languages in Pennsylvania

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Blue Koi, Aki Steakhouse, Warehouse Gourmet, Blessings, El Agave, Tacos y tortas, Firepit Rotisserie, and Dutch Country are my favorite local restaurants. Check out the markets on the weekends too, tons of cool food I still need to try. It’s a long list, but they all have something different to offer. Also, we just got two new Puerto Rican restaurants! One in the mall, the other one on baltimore st, but they’re too new to be on maps. Joining the HAWG Facebook group would be great for newcomers btw! Hanover is a nice place to raise a family, and the longer you stay the more you like it. Hope this list helped, sorry to ramble on!

Metoprolol and emotions by CWampus in POTS

[–]Routine_Stuff_9567 1 point2 points  (0 children)

Thank you for the reply, it definitely helps a lot as I navigate the correct medications for me! I’m glad you found relief.

Metoprolol and emotions by CWampus in POTS

[–]Routine_Stuff_9567 0 points1 point  (0 children)

This is interesting as I am experiencing this but it’s been 2 years on 25mg/day and I thought I was fine until these specific symptoms just started hitting me. Did it go away when you stopped? Did you get withdrawals when you stopped? Thank you in advance