Chronic Vasovagal or Dysautonomia

[kafie]

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)

[Pistol]

Hello Kafie - welcome to the forum!!! -- I am so sorry that you have been going through all of these things for so long! It sounds like you have been quite ill! --- First of all: let your doc do a poor man's tilt in his office, maybe even on a few different days. But eventually I would get a TTT done. --- Have you tried compression stockings yet? They help a lot with pooling and pre-syncope.  Also - have you asked about a beta blocker for your tachycardia? What did your holter show? And you mention depression and anxiety - do you take anything for that? If your symptoms are dysautonomia then a SSRI or SNRI might be helpful, it helps a lot of POTS patients with similar symptoms and could also help for your depression.  - I am not sure if your doc is a PCP or cardiologist but if you have not seen a cardio it sounds reasonable to ask for a referral to one. ---  Have you seen a GI specialist for your GI issues? --- Please keep us posted how you are doing. I truly wish you some answers along with solutions!!!

[yogini]

I would start measuring your HR and BP at home.  That might be helpful especially if you dont have access to a TTT.  You can do a poor man's tilt at home too.

[kafie]

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).

[kafie]

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.

[kafie]

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...

[Pistol]

@kafie - I have hyperadrenergic POTS ( BP going up when standing ) and NCS ( BP dropping when standing ). So - I have sometimes a drop or an increase or a drop followed by an increase or an increase followed by a drop. That is why I recommend doing a poor man's tilt several different times. If you have a way to record your readings that is great. If you do not have your PCP's nurse do it a few different days. --- What you are describing does sound like an abnormal autonomic reaction so I would definitely follow up with that POTS specialist. But please know - it is OK to have dysautonomia, it is not a life sentence in most cases and if you get the right treatment you can be a lot better. --- Be well,  be positive and be pro-active!!!! 

[kafie]

@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.

[kafie]

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]

@kafie - regarding the meds: I have hyperPOTS and take Lexapro. It really helped the POTS. My sister has hyperPOTS too and she does extremely well with Wellbutrin, an SNRI. Personally - I did not tolerate SNRI at all. --- My autonomic specialist put me on Ritalin and guanfacine for my problems with concentration, fatigue and brain fog. They both have been a life saver because they truly have improved these symptoms. The guanfacine also helps for my high BP. --- The thing with meds is that everyone responds to a different combo , so you and your doctor have to just experiment. In my case most of my symptoms are caused by vasoconstriction so I respond better to something that dilates. Other people suffer from vasodilation and need other meds. It sounds like you might benefit from a beta blocker rather a calcium channel blocker? Check with your doc.  Unfortunately treating dysautonomia is frustrating and exhausting, I believe that's why so many docs ignore it or dismiss it. If you don't respond to meds the way you "are supposed to" then it must be your own fault. But it sounds like your doc is trying and is open to suggestions which is a very good thing. Many of us have to do what you are doing - research and find options and be our own advocate. You are doing great with that and compliment your doc when he listens to you!

[kafie]

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.

[StayAtHomeMom]

19 hours ago, kafie said:

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...

I would stick with the BP cuff to get your reading. BP numbers are important to go with you HR numbers. Your HR can compensate for low blood pressure which would make your diagnosis/treatment different. 

I did a poor man's TTT every day for a month so I could show my second opinion cardiologist. My first cardiologist said I didn't have any kind of autonomic dysfunction and refused to put me on a tilt table. 2nd said that my data was not normal, put me on a TTT and diagnosed me with POTS a day or two later. 

With my data it did not always jump the minimum 30bpm but it did jump at least 20bpm consistently. The TTT showed I stayed at the 130s for the full 45 minutes. I was exhausted but I had one answer. 

Good luck and I hope you get some answers soon. 

[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.

😰

[kafie]

Honestly, at this point... I think I'm going to drive myself nuts constantly testing... so I'm going to give it a rest. It's been maddening diagnostics and I don't have the energy for this.

I have a neurologist appointment tomorrow. We'll see how that goes.

Wish me luck! The neurologist doesn't think it's my nerves that's causing the pain or tingling/numbness (and at this point, I'm pretty sure it's the blood pooling, or connected to thus). I am however curious to see if the results are going to be abnormal again...

On the bright side, my symptoms have improved in the last couple of hours (maybe the pedialyte did help, or maybe it's just that it's not as hot). The blood pooling is still really intense though.