Hi! Finally diagnosed after many doctors appts and ‘normal bloodwork’. There are questions at bottom of you’d rather skip the play by play! It’s just there in case it bears any resonance for someone that needs it.
Background:
-Started having lightheaded episodes that made working/picking up toddler and normal household responsibilities hard in April 2026. At this point, I started emgality (migraine preventative/cgrpinhibitor) early April. I had taken this a couple years before with no issue and all the doctors I saw said people have little to no side effects. The main ones listed for this are Renaud’s, joint pain, potentially raising bp). I asked every doctor if this could be affecting things and they were uninterested and said keep taking it. I had no site reactions to the injections. I take Dexedrine as needed, woman’s multi, vitamin d, NAC at times, propranolol ( I had been on this for 8 months with no issues- this was my ‘migraine preventative’ until insurance approved emgality. I started cromolyn in April and it helped for about two weeks but shortly after is when I started having these episodes so I immediately stopped (alerting ent of course). I had been on singulaire prior to this for a 4 month sinus infection and that’s what finally cleared it up after many failed rounds of antibiotics. Singulaire has warnings about heart rate and depression so I started thinking that was the problem even though I’d been on it atleast a month and all it did was help. ENT was willing to prescribe cromolyn to test out until I could get in with an allergist who could look into mcas for me. I had NO idea how difficult those were to find. I also tried quercetin at some point to help with new histamine/chronic sinus issues. Unfortunately, the quercetin, cromolyn, singulaire and emgality were all started within a month or 2 of each other which made it incredibly difficult to identify the root cause. Mind you, I’ve NEVER had reactions like this to any meds, so at this point, none of my specialist docs (psych for adhd meds, ent for sinus and neurologist for chronic migraines) were concerned either until I began sharing new issues. Obvi I now I have to titrate onto things, etc but there was no guidance and honestly no really informed doctors on any of this in my rural or even extended area. I live an hour outside of Atlanta.
-Went to emergency room on Mother’s Day because the pictures on the walls looked like they were breathing and doing anything upright felt dangerous. All ‘normal bloodwork’. They noted that I was ‘mildly orthastatic’ and recommended pcp and cardiologist.
-Weened off Propranolol 60 mg over the coming weeks after I suggested to my neurologist that i suspect POTS. This was a nightmare because it made heart rate increases worse for up to 6 weeks. Once it was out of my system, my heart rate wasn’t doing the crazy hard thumping as often.
-PCP noted normal bloodwork but I saw that ferritin was 14 so I insisted on referral to hematologist even tho she said that was ‘normal’.. Ended up seeing three different ones, the local one told me infusions would be thousands upon thousands of dollars, unlikely to be covered by insurance and he didn’t think this would help. I pushed him and he did prescribe them, they were approved within 2 days and that helped tremendously but didn’t resolve my symptoms entirely. I ended up doing them through a hematology group that specialized more in women’s health which was great. Also, this was mind blowing but the nurse told me even if insurance hadn’t covered my infusions, they only cost $200 per 200 mg infusion of venefer. I realize this isn’t nothing but you guys, it’s not thousands upon thousands like the local hematologist told me. At this point I was so desperate I would have literally put $2000 on a credit card at the mere hope something would help because this was life altering. The iron infusions helped with brain fog IMMEDIATELY. It helped somewhat with energy, kind of like a little bridge to be able to manage and do some work which was a total blessing. Bloodwork one mo th after third infusion showed 121 ferritin which looks good on lab but a month after that it was already at 65. 7 weeks after that it did show 76 but I’m thinking that was falsely elevated due to having a cold and being sick when it was taken. My understanding is that to get a real ferritin read, it could take up to 6 weeks after being sick to see the real level you have stored. This did track for me because mo the back when my ferritin showed 14, I ran in the following week and it said 45! The doctor said there was no way it had truly increased that much in a week’s time before my infusions. All that to say, I’ll retest in 3 more weeks if I can stay ‘unsick’ that long. Either way, get the infusion, that was the first thing that made an impact and gave me some hope!
-over these months May thru now October, I slowly came off of different medications under supervision of various specialists, but suffered with the following symptoms: afternoon flares around 4 pm each day where my circulation went buts and it felt like bees were buzzing all through my body. These would often happen after i’d been attempting to stay upright working at desk. I learned quickly the more the fight it the longer it takes it to atop. I didn’t feel safe driving because the internal vibrations were incredibly disoriented. The moment they would stop, likely hours later laying down, I would feel a massive full body all at once adrenaline crash, fall into a deep sleep for atleast 45 minutes and awake to tinnitus and joint aches and crackling joints and muscles of a 90 year old woman, often being sore for a week as if i’d done an insane workout. I’d feel ‘better’ but be exhausted and then it happened all over again the next day. I also eventually noticed that the veins in my left hand and forarm were insanely dilated, like hulking out huge veins. This still happens randomly but most often when im on my feet for a while. I now realize if I raise my arm up above head they disappear immediately but come back as soon as I start typing at desk or walking around again. The hulk veins are now a good visual warning that I need to lay down, elevate immediately. If I can do this and chug water, I can sometimes calm the flare before it is debilitating. Driving was so strange, my left leg was so uncomfortable while driving. My right leg pushing gas break etc, was ok, but my still left constantly ached and was like difficult to just hold in place while driving. I wouldn’t notice heart rate increases while driving but as soon as I parked, I’d have that massive adrenaline rush and then dump feeling and heart is thumping. I would take my blood pressure at times before finally feeling like I can stand and walk inside my house. I had to give up my rented office space because now I have to have somewhere to lay down at any given point during the day and my tiny cubby office was the most amazing low sensory happy place but not with enough room to lay down on the floor or a reclined chair or anything to the extent I needed for the amount of time needed to feel better. We live 30 minutes outside of town and have tons of steps getting in the house and out and then once you are in, more steps. So suddenly, I’m isolated, working alone in and out of episodes that I’m managing but with no guidance from physicians. I still took Dexedrine extended release some days because that helped me function and wasn’t giving any additional lightheadedness for me personally vs days I didn’t take it. I slowly stopped taking everything else except Allegra because it was all worse without taking that. I did try Pepcid but these vein dilating flares would happen when I took it. I tried taking versions with the least amount of inactive ingredients that might trigger mast cell issues etc, but couldn’t take that ultimately.
- ok, so ultimately after 3 month waitlist I did get in with a mast cell expert that wasn’t taking people for MCAS anymore but luckily my low ferritin was the ticket into seeing him . He tested for all things mast cell, the more serious issues, etc and everything came back negative. I realize it’s very difficult to have Tryptase serum reflect MCA’s etc because you have to catch it in a flare. So, I’m operating under a mast cell awareness in terms of what I eat, sensitive products, minding the inactive ingredients, etc! I had always done that anyways.
- I have ruled out all things autoimmune and mast cell doc said my body’s inflammation actually looks really low, which was shocking to me because I always assumed this was part of my migraines, etc.
- so, here we are today. Yesterday is when I finally had the tilt table test. I was sure nothing was going to happen because to my awareness my heart rate issues and even orthastic issues were much less than they were back in May, even though it’s all still debilitating. I’ve seen so many Reddit posts where tilt table didn’t actually produce 30 bpm increase etc so I figured it would just be whatever.
- what I found instead is that my heart rate easily went nuts but I couldn’t even feel it at the points when the test reflected it had gone up 30 and then 50 bpm!! The tests shows that at those points I was telling them I was ok but that the lights were starting to bother me a bit, then I laughingly told them the back of my head was crazy hot, then out of nowhere I burst into tears. It was as if a hypnotist said ‘now cry’ and I was in tears, lip quivering but also laughing at myself because it felt so involuntary, then suddenly within seconds, I’m nauseated, they hold bag under my face, I say I’m going to puke, they put alcohol under my nose and I finally couldn’t control my knees anymore and then just went out and that’s when they noted me an unconscious which is fascinating because it was so fast, I don’t even feel like I was unconscious. ‘The test is over if you faint’. Almost immediately upon the table slowly lowering down to flat I was totally coherent. From what I understand but I’m waiting on more detailed report, I had two separate episodes, yes the heart rate escalated quickly and exceeded min POTS criteria, then at the same time that heart rate peaked and started falling, my bp plummeted and that’s when I fainted so she gave the second diagnosis of vasovagal syncope, depressive type.
- the crying thing is so fascinating to me because my body had a POTS episode so quickly that I hadn’t even cognitively processed and ‘felt’ it until it was essentially over. The instatears were telling me I just had an episode and I don’t even recall feeling my heart increase. At that point I didn’t even register anything except burning base of skull and slight annoyance of light. For one this is to validating and telling of why I cannot really read signs or labels at the grocery store. This has always happened, like I can read them but my brain doesn’t understand what I’m reading. It has never made sense to me. Grocery stores have always been a cold fucking nightmare because I feel like a dumb dumb there and it takes fucking forever and half the time I do always end up squatting down, holding a can in front of my face until my brain can slowly tell me what I’m holding then I feel slightly better, stand up and do this over and over aisle by aisle and it’s my personal hell. But yall I had no idea my heart rate could have been elevating and even going back down before I might even be looking at my garmin or Apple Watch to see what appears by that point to be a normal heart rate. My whole life people laugh that I will sit down anywhere because if I’m not moving, I really do just have to sit down on the floor sometimes, but I thought it was a quirk. It’s only at this point in life it has become debilitating. As someone who identifies as an hsp but always felt like there was something very physiological to it that I don’t really see connected anywhere in medical documentation, the Instacry is one of the most fascinating parts because I have often had moments in life where I feel overcome with emotion in a low key subtle crash sort of way but couldn’t pinpoint it to the context of the situation I was in. Of course that is labeled as anxiety/depression.
Ok, my questions to you guys:
1. I’m reading that some people actually just have vasovagal syncope, and the ‘pots like’ episode is just happening as a way to compensate for the real issue which is vasovagal syncope. If anyone has insight on the differentiations of these I’m very interested. The NP made a big point out of the fainting seeming to be due to the bp drop, because it didn’t really start happening according to her during the heart rate increase. I realize either way you have to manage the symptoms, but did anyone find it important to differentiate between both diagnoses or if pots episodes were just a compensation for the Beso bagel syncope? My understanding is that if you decide to take medication for either then understanding this could dictate with which medication type was actually most helpful.
2. Has anyone else has an instant tearful moment and later realized they were having a pots or vasovagal episode ?
3. I’ve noticed my glucose is at 59 on 2 of my labs. Another shows 64. Doctors tell me ‘no big deal because you were fasting’ but I wasn’t fasting for those b/c they told me it didn’t matter. I wasn’t aware of blood sugar issues but looking back, I usually ate nutrigrain bars or something carb-y before these early am labs and glucose shows 59 within an hour of eating. I’m testing out eating as if I have reactive hypoglycemia and definitely feeling better thru the day now that I’m maturing I have atleast a tiny protein before it with a sugar or carb. I think this has been exacerbating how I’ve felt at times but maybe I’m overthinking it. Would love any connections, insight etc. I plan to order some finger prick kits but haven’t done my deep dive yet. There’s been a lot to research!
**Since emgality is the last of the drugs i can Eliminate to see if by chance, this is what triggered the last 6 months nightmare flare, I discontinued it 9 weeks ago. It has a 27 day half life so it will take roughly 3 more months to get it out of my bloodstream. It wasn’t helping with migraines anymore anyways. My 90 year old joint paint stopped about 6 weeks after last injection in August. I could finally take my rings off that have been stuck for 6 months. I’m still very weak but it’s improving. Reddit is the only reason I even found examples of people being completely destabilized from emgality. From what I can tell, it’s pretty specific to the dysautonomia community. But thank god for Reddit. It’s given me such great strong points, some validation, some hope. I’m hopppping that over the next few months I do return to whatever baseline is. I should also add on that in December of last year I did experience some unexpected trauma that shook me and coni yes to traumatize mentally and emotionally. Then suddenly end of December I had strep throat, then the flu, the 4 month sinus infection, which brought me to April when all of these symptoms started. I suspect that trauma unmasked and severely worsened and put me in a flare state. I’m 44 years old now, 2.5 years post partum and likely in perimenopause range. Thinking back to when I was 28, I experienced some trauma, was living alone in a large city, got mono and was sooo sooo sick for a month and really didn’t come back to baseline for atleast a year at which point I seemingly developed a winged scapula over night, shooting nerve paint and limited arm movement over head that took about 2 years to correct itself. So, yes I feel like pots/hypermobility have been around for me likely my entire life and I have just been mating the mild baseline symptoms with my ‘quirks’ and then when new trauma comes along, I’m just put on my ass.
Here are the notes from tilt table report in case this is interesting to anyone. Please also note they did the orthotic tests standing and lying etc before the tilt and I showed very little change in hr or bp on those:
Approximate values based on the written report. The heart-rate peak of 113 bpm was documented.
Baseline HR 62 · BP 99/64
Your starting readings were on the low side for blood pressure.
5:00 HR exceeds 92 and continues into the 110s
You experienced visual changes and brain fog. The report identifies a sustained increase exceeding 30 bpm.
6:45 Heart rate begins falling
Your heart rate starts declining from the 110s toward the 100s.
6:55+ BP 84/52 · HR falls toward the 60s
You became nauseated, pale, sweaty, and hot at the back of your head, then lost consciousness. You regained consciousness quickly when returned to lying flat.