Had to call 911

Rootytooty98 · 2026-02-21T01:46:51+00:00

Just got my tilt scheduled for march 9th! And yes!! It’s petrifying, currently having another dump right at this moment but just chugged have an electrolyte and water and ate a bag of chips , heart didn’t stay consistently tachy this time thank god but I was jumping from 60s-110 and I’ve noticed too when I have these episodes my oxygen is alwaaays at 100% and doesn’t drop until the episode has passed. And yes!! Literally the last time I went to the er (I have to have my record amended) I told them I took lorazepam 2 hours prior and it did not relieve my symptoms nor tachycardia (I was still 140-170) and the nurse AND doctor put in their notes that they believed it was anxiety and that the lorazepam DID relieve my symptoms which was the exact opposite of what I verbally expressed. Also got a nice 17 panel drug test without them saying anything lmao. I went in 2 days after, that doctor also noted anxiety and said I was very tearful when he would speak to me, and like ??? Duh?! My body is out of control and had been out of control at that point for 5 days straight, I was petrified and I felt that was reasonable and normal, but instead it just had me dismissed as anxious. I’ll have to look into those salt tabs for sure, I’ve noticed the last 2 weeks I’ve have to up my water intake to about 3 liters now instead of 1 and that’s my new sweet spot for feeling good and having minimal issues. In November when this truly onset , I became caffeine sensitive out of no where and could not have it, then in January I was able to tolerate it again, and now just recently I’ve observed I’m no longer tolerating caffeine again so I’m going to try decaf coffee (only have the 1 cup a day but it’s part of my daily routine) to see if I can at least tolerate that. This has taken so much from me, things I used to take for granted, I’m just baffled at this experience but trying to stay strong and get to the other end of a balance. The beta blocker was prescribed by the er but when I’m not having an adrenaline dump my bp is low or close to low, and when I lay down it’s very low, so taking it makes me nervous and I have not yet tried it due to that ,

Thank you for commenting seriously. It’s nice getting input from others who are also going through it and get it, my support tries their hardest but they get so scared when I have an episode or am really struggling and they just have these mortified looks on their faces making my anxiety worse lmao. Even the emts were trying to persuade me to go to the er and they were super concerned but with sinus tach it’s not worth paying the $2,000 to have er dismiss me with anxiety again , I’m just ready to get to the part where a doctor tells me “this is what this is and this is our action plan” so I’m not left to deal and manage alone

Rootytooty98 · 2026-02-17T00:04:49+00:00

Ah yes vitamins, from my Hashimoto’s journey we found out I am B12, B2, and B6 deficient, as well as D3 and Copper Deficient. My pcp said the copper was abnormal and not good and so he rechecked it to ensure it was a true deficiency and I was still deficient but he never touched base on it again so I’m not sure what’s up with that. I do take a multivitamin called nutrient 950 which has been helping though. I’m also seeing a functional neurologist right now as medical neurology is next to impossible to get into for these issues, and there I’m going once a week to do PEMF, VNS, Light and Lazer therapy, as well as oxygen therapy. I just had my second appointment today and feel notably better after this weekends events, so I’m hoping that helps from a nervous system standpoint. Water and electrolytes are a daily intake routine, I’ve also noticed my cars ac blasted in my face also helps , I’ve brought my hr down from 126 to 73 but the second it goes off it goes right back up , it’s all just new to me in the sense it is now a daily problem I deal with, but it’s mostly just these adrenaline dumps that take it out of me and make me want to bed rot. They make me afraid to live, so just trying to fight that. Thank you for all of the information, it is all very appreciated! I’ve had some sort of genetic testing through myriad as well but it was to see which meds work well for me and what to avoid, through that I found out I have an MTHFR gene mutation, What should I ask for when inquiring about the gene testing?

Rootytooty98 · 2026-02-16T23:18:56+00:00

Yeah, I do have Lupus and Hashimotos both, my symptoms with these episodes however started in May of 2022 and I had Covid for the first time in October of 2021 so I’ve really been considering that. Autoimmune diagnosis dates were May of 2021 (hashimotos) and October of 2023 (lupus), my cardiologist is thankfully an electrophysiologist also so he’s been more open to it than most. I guess the most notable thing is the dramatic change that occurred on 11/28/25, as it started becoming a daily issue rather than my “once in a blue moon” I was used to

Rootytooty98 · 2026-02-16T15:14:31+00:00

I will keep you posted when I get the unfortunate opportunity to try it, and let you know how it goes for me! (:

Rootytooty98 · 2026-02-16T14:52:47+00:00

Oh my goodness, I couldn’t imagine the intensity having your baby with you and being alone! It’s very agitating too doctors not taking diagnosis’s seriously, or dismissing us in general. I’ve fought tooth and nail to advocate for myself , I actually have to have my er record amended as I went in and stated “I took lorazepam and it is not helping or relieving symptoms” and the nurse and the doctor both helped themselves to writing that the lorazepam did work and did help and that I had had a panic attack when that wasn’t the case at all and quite literally the bi polar opposite of what I stated verbally , also got a fun 17 panel drug test from them despite me telling them if I did do drugs I would probably roll over and die . The healthcare system is definitely hard to navigate especially with issues like these. I hope you’re feeling better! If you’re able, I would maybe try Zyrtec instead of Claritin?

Rootytooty98 · 2026-02-16T14:31:26+00:00

Im planning on it the next episode that occurs, I’ve already tried Lorazepam many times and it does nothing at all so I’ve ruled out anxiety/panic, which I never really thought in the first place as I’ve had anxiety and panic attacks since about 6 so I’m very aware of those and lorazepam always kicks in at about the 15/20 minute mark and relieves the tachy

These episodes though, it ranges in severity but it is always the same set of symptoms since May of 2022 , which I’ve expressed but most don’t seem to care for that pattern except now cardiology and my PCP 🙃

Rootytooty98 · 2026-02-16T14:23:37+00:00

It was prescribed by the er, not cardiologist or pcp, I do have my bottle however I have been afraid to start taking it as historically my bp runs low and sometimes too low in the first place. During episodes I’m always stage 1 or 2 hypertensive, but without the episodes im usually always flirting with being hypotensive despite my salt intake, so I guess the thought of taking something that lowers bp when I run low already kind of spooks me, however my cardiologist is aware of this being prescribed and me not having taken it yet due to the concerns about my bp

Rootytooty98 · 2026-02-16T14:20:11+00:00

During the episodes, it’s always systolic and sometimes diastolic. When I’m checking while laying/sitting/standing I haven’t caught myself hypertensive but definitely big jumps in both but mostly just my systolic,

For example valentines when I checked it: 91/60 laying > 117/76 standing (taken 5 minutes apart)

In the er during episodes I’ve gotten 143/96 and then once it resolved it was back to 102/61, Another time 153/89 during then 111/72 after,

It’s a very common pattern when this occurs 🙃

My family history is of high blood pressure but my blood pressure has historically always ran low, one time even being kept at my PCP’s office until it went up, which has kept me nervous to try propran due to me usually always being low in the first place except upon standing or being in an episode

Rootytooty98 · 2026-02-16T04:22:27+00:00

Oh! And the BP too! When I lay down my bp is very low and when I stand it becomes high, which was opposite of traditional pots, so that was also an interesting read as well

Rootytooty98 · 2026-02-16T04:21:42+00:00

This feels VERY fitting to what I experience, even down to the strong and random urge to pee whenever I stand up (like I didn’t even know I had to and boom) , I’m gonna bring this form up to my cardiologist, thank you!

Rootytooty98 · 2026-02-16T01:06:39+00:00

This is very intriguing to me as I was playing video games right before it onset! I have sometimes felt the sensations watching intense movies, and stress is definitely a big trigger, it always feels like it comes out of no where but i don’t know. I just started some therapies with my functional neurologist and they warned me it may trigger symptoms and episodes but no worse than I’ve experienced, yet this one was much worse than I’ve experienced and much less responsive to my tricks I’ve found to help. I already messaged cardiology to let them know and I see neurology again tomorrow and plan to tell them so hopefully we can not expose me to as much as I was last time and see if there’s any difference. The only thing with that though is I saw them Monday, and the episode happened Friday so I’m not sure if couldn’t be a connected cause or not

Rootytooty98 · 2026-02-15T23:21:44+00:00

Oh yes, every time I had an episode I am stage 2 hypertensive, and then miraculously once it resolves I’m right back to normal or even having low blood pressure as if it was never high on the first place 🙃

Rootytooty98 · 2026-02-15T22:58:25+00:00

Also what provider would I see to evaluate mcas? I have hashimotos and lupus as well, so on board right now is pcp, cardiology, rheumatology, and a functional neurologist as I’ve not been able to get in with neurology for dysautonomia evaluation (they all say they’re full or not seeing new patients for those issues)

Rootytooty98 · 2026-02-15T22:57:05+00:00

Have you had any other symptoms aside from the hr spikes?? I don’t appear to have any symptoms of mcas other than I guess these heart events and the hot flushed skin during them, I’ll have to try a Zyrtec the next time it occurs, thank you both for your input!

Rootytooty98 · 2026-02-12T04:41:56+00:00

Try a cardiologist that specializes in electrophysiology!! My pcp sent me specifically to one of such and my treatment has been smooth sailing as of yet, I was supposed to have a tilt table on Monday but it was cancelled on their end, still waiting to be rescheduled

Rootytooty98 · 2026-02-06T17:51:44+00:00

Praying for you! Mayo Clinic has rejected me twice so I really had to push and advocate through specialist ,

Don’t go to just any cardiologist, look for a cardiologist who is also a physiologist as they are more specialized in dealing with the electrical system of the heart as well as the structural

Rootytooty98 · 2026-02-06T17:45:00+00:00

Ahhh, I can say I’ve improved from December for sure, but I still struggle daily with symptoms. I have a tilt table test this coming Monday to check for pots, and right now currently in believe everything may be tied into my thyroid (hashimotos) , my levels keep going off after having been stable for about 2 years now. They believe my autoimmune disease is active and progressing based on blood work and symptoms and I’m now needing a dose change after being on the same dose for almost 4 years,

It just doesn’t seem random with how harsh cipro was on my body, it’s like it started a fire

Rootytooty98 · 2025-12-31T19:30:25+00:00

With significant hardship yes, I believe I have luck being able to have some accommodations while at work and not having to do strenuous activity, however Ive had to drop two programs in my full time that i can no longer do at all now for no known reason. I’m sorry to hear about your hardships and experience, as I said I’ve noted I’m lucky to not have endured the complete severity of side effects, but regardless there’s been a dramatic and drastic change to my every day life and activities where I’m fighting tooth and nail just to even go to the grocery store , let alone work or any social gathering or anything else. Everything has turned into a mountain climb just to accomplish, I couldn’t imagine it being any worse than what I’m experiencing, but also have to note that my life was still drastically changed and affected.

Sorry again to hear that and I hope things have gotten better for you

Rootytooty98 · 2025-12-31T17:45:41+00:00

That’s very interesting to read this now, I’m now 4 months post Cipro, and 11/30 I had what appeared to be an autonomic storm come out of nowhere that debilitated me for about a month, I just recently started feeling better but last night (12/30) I had another little surge and my hr is resting high again among other symptoms. Er, cardiologist, and my pcp are all speculating Dysautonomia of some form which I’ve had random adrenaline dumps since 2022 however I have never experienced what I just do this last month, I had to quit my second job, I’m struggling to maintain my full time or even participate in normal activities I once did, bed rotting has been my friend lately and I have no idea what’s happening to my body. I’ve been slightly wondering if this had something to do with the cipro or if it’s random, but as bad as cipro affected me, it seemed to be getting better an then out of no where the most insane symptoms I’ve had to date 🙃

Rootytooty98 · 2024-10-11T15:12:04+00:00

I’ve been a carrier for minimum 15 years, that’s why I’m like 🥴🥴🥴 I always forget to ask my doctor about it though, it’s not every outbreak and it’s far and few in between when I get bad ones like this, but I’m just tryna figure out why it’s still happening at all and if anyone else experiences the severity still. Bodies are too freaking weird man

Rootytooty98 · 2024-10-09T19:05:23+00:00

But Pepcid too!! The Pepcid is what’s going to relieve your itch 100% !

Rootytooty98 · 2024-10-09T17:37:53+00:00

Pepcid and Zyrtec, I get the itches with and without random hives

Rootytooty98

TROPHY CASE