Maybe It's My Autonomic Nervous System

[zaghost]

Hi, I’m new here.

I’m diagnosed with mild gastritis, anemia (intermittent), seronegative rheumatoid arthritis, polycystic ovarian syndrome, and a whole lot of brain-weird (depression/anziety/ect).

I’ve had syncope for a long time. The first attack I remember I was probably 10. It was a hot summer and I was riding my bike all day. People called it heat stroke, sat me down and gave me water. I remember always feeling like I was more sensitive to the sun than everyone else, but I don’t remember having another one till I was probably 12. At some point, probably around 15, it became (at least) a yearly event. I have experienced the following things over the years with the attacks: narrowing and darkening of my vision (like someone pulled the plug) as well as kinda like rainbow static), flushing (along with feeling like all the blood vessels and pores opened up on my face) pallor, sweating, nausea & vomiting, numbness & tingling (legs, arms, lower abdomen, and head), weakness, lightheadedness, ringing in the ears, lethargy & sleepiness, confusion, and generally feeling like I’m underwater (deadening of sound, feel like time slows down).

I took forever to talk to a doctor about it. The first thing that I tried to get doctors to figure out was my nausea (almost everyday in the morning, and occasionally throughout the day – with intermittent lower GI complaints – lost 20lbs pretty rapidly when it got bad). Celiac’s biopsy was negative, endoscopy found inflammation in the stomach and atrophy of the villus. The motility tests was normal. They gave me some SSRIs and Zofran.

I talked to my doctor about the heart palpitations and intermittent tachycardia. EKG found an abnormal t wave (inverted), and I was just told the 3-day monitor was inconclusive.
We did a TSH test, negative. After pregnancy I had postpartum thyroiditis and the we ran a full thyroid panel, everything that wasn’t negative returned to normal a month later.

I talked to my doctor about the pain and numbness in my hands and he sent me to a neurologist. Never conduction tests were abnormal but inconclusive. So I asked to see a rheumatologist who did x-rays of my hands and found peri-articular osteopenia, but my blood work was negative. Prednisone helped though and my family is full of RA. (I also occasionally run a low fever and pretty much feel like I got hit by a bus)

I have abnormal liver tests that come and go (probably because I had an alcohol problem for 8 years (I do not drink anymore and I hope with time those will come down again). I have had anemia off and on for the last 8 or so years.

I’m starting to feel like a lot of my issues stem from my autonomic nervous system.
I started having nausea right around the same time that the lightheadedness became s regular thing.
Since my 20s I’ve become increasingly fatigued. My joint pain started around 27.

At 30 now, I’m constantly in pain, exhausted, and looking for answers. I spoke with my doctor recently about the syncope (with a 1 year old I kinda need to get it figured out). It’s exacerbated by heat and dehydration but not specific to only the conditions (the last two bad ones I had were at 10pm and I was well hydrated). He’s going go test my heart… again. Rheumatologist sent me to a neurologist because i’m getting numbness and tingling on the regular again.

And I just realized that blood pools in my hands. And I might be crazy but I’M PSYCHED that there’s finally a glaring symptom that I can replicate over and over. (Takes a couple seconds and my hands are red, swollen, with bulging veins, disappears instantly upon raising my hands over my heart)

So I’ve started to wonder, instead of looking at the usual suspects… maybe look at the ANS.

I’m pretty sure they think I’m a hypochondriac, but I have consistent, chronic, and progressive symptoms and I WANT IT FIGURED OUT!
They effect my daily life in a big way.

I don’t know what to do other than just surrender to the medical system while they look in the same place repeatedly. I sent my doctor a message saying that I have identified the blood pooling in my hands (he told me to look for it in my feet) and at least a 30bpm increase during a syncope attack. My doctor’s nurse emailed me saying that they’re considering sending me to a POTS specialist. (Considering?)

I’m kinda feeling like… 99% certain it’s some form of dysautonomia (POTS/Orthostatic Intolerance). I wonder how much of my pain is amplified by the blood pooling. I wonder how many of my symptoms would go down if we just did something about this.
I have been having pre-syncope symptoms almost everyday for the last couple of months (to be fair, it’s hot), and two actual syncope attacks in the last week.

I’m constantly taking care of various children and I’m worried about these attacks and their safety. I try to be careful (drink lots of water, spend most of my time laying on the floor with them), but my fear at this point is that I’ll have one while picking one of them up.

Tell me if I’m crazy… but this is a problem.

Attached files

[zaghost]

I see my doctor again Monday. I’m going to ask him some extensive questions about compression gear. With the most obvious pooling in my hands, and full length compression gloves either being ungodly expensive and my growing fondness for my gloves with grips (they make driving so much easier)… if just using sleeves is well enough or if I need the compression over my hands as well.

He had told me to buy the cheapest set of compression socks, but to my understanding… you need at least 20-30mmhg. I wore compression stockings like that through my pregnancy and I’m totally ok with running around with that sort of compression on my body throughout the day (I kinda find compression soothing).

I’m feeling pretty positive right now. I’m hoping that all my perseverance is going to finally pay off. 15 years of this, maybe I can live a relatively normal life???

I don’t know if I’m just screaming into the void at this point. I don’t know what to expect of people. My husband is as grateful as I am that we almost certainly, finally have a name to this thing.

I had suspected it for a long time but everytime I had full faint, people just assumed I needed to drink more water or eat something (I’m not saying there’s not value in that, I’m just saying that I have the symptoms regardless). People freak out and don’t really listen to me when I try to tell them that I LITERALLY just need them to leave me alone and let me lay on the floor for a couple minutes. They try to usher me up to sitting to give me water or to standing to get me to a couch (and guess how that goes). For a long time, I literally thought it was that. I just passed it off like the doctors did. I had myself fully convinced it was anxiety till I realized that I was having the attacks without anxiety. In fact, I kept feeling like something was fueling my panic attacks!
I was almost entirely housebound for 3 years fearing that I’d have a panic attack in public and it’d build and I’d either burst into tears or pass out.

I’m just floored and I kinda feel robbed… because if a doctor had just taken the time at any number of visits (I have asked almost every single one of my doctors about this problem at some point or another) to ask me questions or do a quick test to see if the redness in my hands was blood pooling and not overwhelming inflammation (no one ever tried raising them up to see if it goes away, and I was nearly convinced it was a trick of the light and my husband thought it was a sunburn!)… we literally could have already done something and I could have enjoyed my 20s without scaring the hell out of a whole bunch of people a whole bunch of times. (To be fair, I do understand that it’s notoriously difficult to diagnose)

[zaghost]

So, my doctor is going to send me to the local POTS specialist.
I’ve been trying to test myself because we don’t have a tilt table in town (my doc said we should check the physical rehab places… i’m sure the specialist would know).

I have so many questions despite having educated myself.

My heartrate has been high (upwards of 140bpm) everytime I’ve tested it when I’ve been having pre/syncope symptoms but I haven’t had any luck with the poor man’s tilt table test. There is a sustained increase of at least 20bpm, but that’s normal. It appears to still be climbing, but with the blood pooling, 10 minutes on my feet trying to not move is plenty painful in its own right. I keep trying to do that test and just keep getting nauseous and can’t sit still – so i’m pretty sure that is screwing it up. (To be fair, I haven’t had a full faint or weakness with them, though I’ve had plenty of those lately when I haven’t had a blood pressure cuff strapped to my arm)

I’m taking my symptomatic heart rate with my phone, to be fair (and occasionally it won’t read because i’m shakey). But resting it’s been on par with my blood pressure cuff.
There is an initial blood pressure increase upon standing, which is totally normal to my knowledge.
And I have tested my heart rate several times with my phone with various posture changes and commonly see a 20bpm increase with going from laying to sitting, and then 30bpm (staying up in the 130-140bpm) when moving to standing from sitting. (Edit: tested with the blood pressure cuff during a spell and still in the 130s-140s and not dropping – I don’t know if that’s definitive but yeah)

My husband and I theorize that it might be the type of POTS that climbs slowly off the 20bpm increase… if persistent, capping around the 140bpm mark that makes my doctors ask me “do you feel ok?”. That continuous posture changes are the cause rather than a single posture change (I don’t have this problem first thing in the morning, though I often feel of balance ans more clumsy, but my husband has GERD and our bed has an incline).

My basal heart rate is in the 60s, resting anywhere from 75-120ish (as tested at the doc office), but usually around 75-95ish. Clearly when I’m having a bad attack it takes the heart rate a little while to go down since we’ve tested with me in the floor and had a 110 reading… and my guess is that it was so high that it was taking awhile to come down rather than plummeting almost instantly (to be fair, I did stand up, collapse after a couple steps, stand up and walk about 10 feet, collapse, pull myself into a chair into a sitting position, still felt dizzy, laid down on the floor, and then puked in the trash can)… so that was a lot of me being stubborn and refusing to accept my body screaming at me to LAY DOWN. Because people think it’s weird… and I don’t want any awkwardness (to be fair, I put that on myself).

I’ve identified some joint hypermobility, and I’m pretty certain that points in the direction of POTS. (Every finger on both my hands, possibly my thumb and the last joint in the fingers, my hips, and both pinky toes (which are probably the most pronounced and kinda creepy)).

The attempts at signaling the ANS to be a jerk so I can get the readings is irritating. I’ve read that this test is pretty much as accurate but the numbers just aren’t high enough for me to be certain. I hate that sometimes I get the reading and sometimes I don’t. I was pretty certain that this is supposed to be constant… but if it’s that simple to test, I don’t see why my doc didn’t just test me sitting and then test me standing in the office.

Ok… so… working backwards is working out much better.

Symptomatic stats: 117/88 141bpm (and going no lower than 129bpm so long as I was standing).
Laid down, 128/74 90bpm. I had gone from sitting to standing, took my readings for about 5 minutes, drank some water and laid down and retested.

Has anyone else had to get their numbers this way and not having luck on working it forward?

Since the blood pooling is really bad today and I’m having symptoms, I might try the ttt again tonight ans see if I can get the numbers. Idk

Attached files

[Dr. Diana]

Hi Zaghost, If you find yourself still struggling and would like a team to dig into your case to figure out the underlying problems and how to best treat it, please reach out to us at http://www.POTSCare.com It’s what we do and we’re good at it! xxoo

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