kafie

So today has been a pretty bad day. The blood pooling is so bad and I've been so lightheaded and nauseous and just feeling really wonked. I attribute this to jumping out of bed this morning rather than getting up slowly. (I haven't been lightheaded first thing in the morning in so long (but it also usually takes me awhile to summon the energy to pull myself out of bed), and this morning I almost fell right over...) My standing heart rate is consistently over 120bpm, almost up to 150bpm (with at least a 30bpm increase). My resting heart rate has been around 90bpm sitting, 80-90bpm even laying down (and not always dropping as quickly). The blood pooling is especially bad, with the redness in my hands going up my arms, and the blood pooling in my feet actually being relatively visible (I don't know if it's because my feet are so dry from athlete's foot, but there's only a shade or two change from reclining to standing... unless I take a shower, the most visible color change is in my toes... and they're kinda purple). I tried to take my blood pressure a couple times and it was all over the place with systolic between 135-116 and diastolic between 95-76 (and not always rising and falling together... idek). (Lower systolic upon standing, higher diastolic... opposite for laying - I'm sure I must have messed that up somewhere) I've been drinking coconut water and pedialyte and a whole ton of water. It doesn't seem to be helping (or maybe I would have fainted by now if I hadn't). So I'm just trying to periodically elevate my arms and legs and be careful. 😰

My GP has been surprisingly open to my suggestions of medication. I've had mental illness for a long time and ended up doing my own research on medications and basically just went to him and said "I think this is what we should try", and he's always just been "okay". (This is how I ended up on pristiq, and I'm really glad I took the time to educate myself) I do feel like I've become somewhat of a troublesome patient for him though. Somewhere between being knowledgeable about medical stuff (both because I just find it fascinating and because I was working on a degree in medical coding, which got cut short by having a kid)... sometimes I feel like he must be rolling his eyes listening to me. But I can't complain too much since at least he listens and is ok with me asking for tests (I asked for an EKG and thyroid test before, which were both suggested to me because of my symptoms). But sometimes I get the impression that he's kinda tired of it. I wonder if self-advocating drives doctors nuts.

I'm waiting to see the cardiologist, so we haven't discussed medication yet, but I'm not on anything that should effect my veins (I do use nicotine which I believe is a vasoconstricter, but honestly trying to reduce my use (I have halfed my consumption in the last few months - my endocrinologist really wants me to quit)). I was thinking too that going to a medical supply shop might be the right thing to do. Thank you for that advice! 🙂

So, maybe you guys can help me out here... My doc told me to just buy the cheapest set of compression socks that I can find, and I'm a little confused here, because I'm pretty sure: A. I need at least thigh high B. I need at least 20mmgh of pressure I'm wondering a couple things though of my own curiosity... Does anyone use compression for their hands/arms? Do you need the compression on the hands to stop the blood from pooling there (the most obvious place is my hands and it really hurts at times - I do use IMAK gloves, but I'm not sure it's really enough compression), or would just the arm work (from just below the shoulder to the wrist)? Do just gloves cause a problem with the blood getting stuck around the wrist/forearm as is common with knee-high compression socks? Is a higher compression better? Does 30-40mmgh do a better job at stopping blood pooling or preventing syncope symptoms than 20-30mmgh? What's up with abdominal binders? Do these help relieve some of the digestive symptoms? If you have any suggestions for electrolyte drinks I'd love to hear it as well. My doc told me to drink juice, and I've started to do that a little (not sure how much it's helped), but I find coconut water/milk seems to help. I'm kinda interested in the tablets and packets because I could just stuff them in my car or bag and have them always with me (rather than something I have to refrigerate after opening). I've been told they're terrible, but drinking a bit of something terrible is a small price to pay for not being dizzy.

The first time I tested with a blood pressure cuff I saw an increase in my blood pressure too, but haven't seen it since. It was about +30/20. My blood pressure is usually normal, and I was under the impression that an increase in blood pressure upon standing is normal because the blood vessels are supposed to constrict to help pump blood against gravity? I haven't been able to duplicate this result though. All the other times I've tested with a blood pressure cuff there hasn't been an increase over maybe 10/5, which I think is more of a normal reading. The doc had initially told me to test when I was having an attack... it occurs to me now that maybe he didn't mean one where I collapse (cus then I can't just stand up without fainting, it usually takes me a moment and immediately standing once I regain consciousness/repeated collapses back to back seems to just intensify them and requires me to spend more time on the ground recovering from the whole ordeal). So the first time I took my heart rate and blood pressure was with me on the floor. Readings were both high though (+30bpm, +40/30mmhg). I had puked a moment before and had been on the floor for probably a minute... so my guess is that at least the heart rate was probably extremely high. Honestly, kinda afraid about it turning out to be hyperPOTS. From my reading they usually want you to discontinue medication that effects norepinephrine, and Pristiq is the only medication that has properly treated my depression (and to remission no less). I was also on Straterra which my doctor very quickly removed from my meds (which is fine, doesn't do much for my concentration anyways (I was diagnosed with ADHD as a child and hated stimulants, so it was worth a shot). I don't think it would be worth it in my life to have less pre/syncope only to have severe depression... so *shrugs*

@Pistol I will definitely follow up with the specialist and let him know what I've found. The fact that dysautonomia is generally very treatable actually makes me extremely hopeful. I've been dealing with them for so long, I realized a long time ago that it wasn't something particularly dangerous (for me anyways). If anything, I'm just distressed that it took me so long to do anything about, and more so that my GP (who has a daughter with the condition) only asked me if I experienced flushing and then passed it off as anxiety (of course, some of that may be my fault that I didn't let him know that it had been going on for so long). It took me about a week to really process it despite the fact that I had suspected it for awhile. When I told my doc that my hr was elevated when symptomatic but drops with sitting he seemed pretty sure it was probably dysautonomia and I was initially very upset and very relieved. And right now, i'm hopeful. And i'm holding on to that.

I tried to do a poor man's ttt today too and got the results I had been expecting with me last two ones. I wasn't really planning on doing it... i was just laying on the couch feeling tired and realized that my heartrate had dropped and I was feeling pretty relaxed, so I grabbed my phone and tested. Resting: 70-80bpm Stood up: Initial drop to 60bpm (not sure if that's a glitch in the pulse oximeter, or a result of me not being able to stay still), shot up to 110 and stayed there for a bit, then shot all the way up to 200, dropped down to 140, and settled back around 110, stayed there till i sat down. I'm not sure why it doesn't always show up, but there it is. Jumping up to 200bpm is kinda weird, and it's not normal for me, so i'm not sure what the heck that's about and if I was having some light tremors that screwed up the reading... but it's not the first time I've had that reading lately (it doesn't stay there though so I doubt it's anything really - though this is why I trust the blood pressure cuff more). To my understanding, an initial drop indicates vasovagal (or NMS), and at that point POTS would be ruled out... but this isn't a constant either! I'm so frustrated right now...

Also: I take pristiq for my depression. It's an NSRI, and I know that's not ideal... but SSRIs never worked for my depression (I was on desipramine for a long time for the nausea and it really helped but my GP screwed up my prescription and gave me the wrong dose (half to be exact), which didn't help (or maybe it would but the plaquenil makes me nauseous), so i stopped taking it.

I am seeing a cardiologist that specializes in POTS soon. My GP just put in the referral Monday. I wasn't able to see what my halter monitor results were, my GP said they were normal. The EKG showed an inverted T wave, but in told that's a normal variant. I have been to a gastroenterologist. That was the first specialist I'd seen. We ran a while battery of tests but all we found was the gastritis and villus atrophy. As soon as I get paid, i'm going to buy some compression stockings. I wore thigh highs while I was pregnant for the cramps and edema (and don't remember having symptoms through the 2nd and 3rd trimester, which is when i was using them - unfortunately they're too big to be effective now). I have been testing my heart rate. The poor man's ttt showed nothing abnormal, but when i'm experiencing pre-syncope symptoms my heart rate has been 30-50bpm higher than normal (consistently), which drops back to normal if I sit down. Thanks for replying. I've been so anxious about this and people in my life have been uncomfortably quiet about it. My husband's really supportive but he doesn't know what to say other than "I hope this is it so we can do something about it". This year has been really bad for the lightheadedness (but it is really hot) and I've had several bad attacks recently (looking like a complete nut laying on the floor and crawling through the house so I don't fall).

Hey. I've had syncope for probably 15 years now. Onset was in my teens probably (I had some faints before that but they were far and few between), I'm 30 now. Some background on me... I have confirmed PCOS, gastritis, villus atrophy (no idea why, celiac's biopsy was negative), depression, and anxiety. Based on x-rays and family history, I have also been diagnosed with Seronegative Rheumatoid Arthritis. I also have had anemia and abnormal liver tests off and on for the last 8 or so years. I take Pristiq, Plaquenil, and currently on a prednisone taper (which is helping my joint pain IMMENSELY). My doctor and I have just started to seriously look into POTS as a cause of my symptoms. I have reoccurring, chronic nausea (worse in the morning and relieved somewhat by laying down), intermittent lower GI complaints. I get presyncope symptoms almost daily but only a full faint a couple times a year. I'm pretty much tired all the time and tasks like sweeping and changing the sheets on the bed make me sweat like a pig and feel like I'm going to die (palitations, racing heart, breathless). My internal thermostat is chronically stuck on "ARG IT'S SO HOT", and I do not deal with heat well. I drink plenty of water as i'm pretty much always thirsty (and occasionally suffer from dry mouth). Over the last couple of months I've started also to get what I suspect is nerve pain (zappy, prickly) in my hands and feet (along with tingles and a little bit of numbness that goes up my legs and into my belly, especially with standing up). My doctor finally took my suggestion that maybe it's POTS/dysautonomia/orthostatic intolerance (cus god knows everything else has been inconclusive) because we just realized that blood pools in my hands and feet... painfully so. We have done an endoscopy, barium swallow, x-rays, tons of blood work (including a full thyroid panel), nerve conduction study (which we are doing again next week), EKG and halter monitor. We don't have a tilt table in town and this is the one test we haven't done that we should (but if I can get referred i'm planning on driving a couple cities over to have one done), so I've been checking things (to the best of my ability). I am seeing a specialist in the next couple of weeks though. Thus far, the results have been all over the place. The tachycardia is certainly worse when the blood pooling is worse, but with my phone and a blood pressure cuff, my attempts at a poor man's ttt have been pretty negative (only a 20bpm increase upon standing - to be fair, I sway pretty badly and also have pretty bad pain in me feet when I stand for too long (enough that 10 minutes is pretty much my breaking point). When I'm symptomatic my heart rate has easily been 130-140bpm while standing (5 minutes was all I could handle) and drops down to 70-90bpm as soon as I sit or lay down. We think it might be a gradual climb in my HR, but i'm not sure. I know sometimes when I test upon standing it shoots right up (and stays up), occasionally it doesn't. (I have also once seen an initial drop then steep climb (90bpm down to 50bpm, then up into 140bpm+). I do feel crummy most of the time, and standing makes me often a little lightheaded, nauseous, and tired (ala feeling like i'm suddenly 10xs more effected by gravity). I've had the whole range of symptoms with the attacks (loss of vision/static, nausea/vomitting, ringing in the ears, flushing/pallor, sweating, tingling/numbness, headache, confusion, tremors... pretty much name it and I've had it with one or another) and they ALWAYS come on with posture change, and very rarely with anxiety symptoms (other than the I NEED TO SIT DOWN NOW OR I'M GOING TO COLLAPSE). I also have a lot of joint hypermobility and the stretchy skin... so... Thoughts? (No, I'm not expecting you to diagnose me, that's what the doctor is for)