voxel

So IV fluids are primarily for increasing BP and blood volume?

I'd be curious what IV fluids does when my BP is high? I find drinking water/salt/electrolytes immediately drop my BP when it is extremely high. Last time in ER,  I rejected an IV because my BP and HR and sodium were high. Bad decision?

On 10/19/2018 at 4:47 AM, bombsh3ll said:

I do take in far more salt & fluids (in the form of electrolyte mix drinks & just a little salt added to food as I don't really like the taste of salt) than the average person (approx 6 litres/10g per day). I wouldn't say it helps me with lightheadedness/presyncope although how much worse I'd be without I don't know. I don't produce any renin or aldosterone though, these are the hormones which help your body hold onto salt or fluids, so my situation may not be typical. 

How come you were salt & fluid loading previously if you've only just developed orthostatic intolerance now and not before? There may be a clue there. Perhaps all the salt & fluids were actually treating an issue you didn't know you had, and it has simply become apparent in their absence - in which case reintroducing them with an eye on your BP may help.

B x

The cardiologist who diagnostic me mentioned ingesting high salt. I tried add salt to every meal but found it too much so I ended merely eating high salt foods like chips, soups, pickles occasionally.

On 10/19/2018 at 7:10 AM, Pistol said:

@voxel - are you taking a new med? I have developed acute hypotension from new meds like BB or calcium channel blockers before and needed to decrease the dosage until my BP started to become high again and then increase again. We are extremely sensitive to meds, so that could be possible. -- Yes - I salt-load along with fluids and it helps for me somewhat but when I get hypo-or hprtensive I get IV fluids and that fixes it. 

No new meds. I've been prescribed an alpha/beta blocker and anti-anxiety pill but don't plan to take any of those until a major flare-up day.

In general, I might be a little dehydrated these days.  I thought I was getting enough fluids but I did have a morning where I woke up with 168/85 BP after eating salty foods late at night and not drinking enough water. I worry too much water will flush out the sodium so I only drink with food or after exercise or when my mouth feels thirsty.

I don't understand my body in general. I have a salty taste on my tongue and sometimes it's because I need salt and sometimes it's because I need water. I guess salt loading is all about ingest salt and water together, right?

I had this happen to me about 6 weeks ago but it was due to some reaction to a new med. My Fitbit detected the 160bpm spikes for a few minutes but I didn't really believe it when I first saw the spikes except I felt tired for hours after waking up and often I was sweating from the neck and face when I awoke.

Do people here use salt loading (excess salt in diet + fluids) to deal with syncope/dizziness/fainting?

This week a new issue has emerged for me... when I stand up from lying down I sometimes almost pass out (syncope). I have never experienced this before. Lately my normal day-to-day BP is has low-ish which I considered a great sign that I'm healthier and I seem to have more energy throughout the day too but this issue is disturbing.

I stopped salt loading a few weeks back because my BP would rise to an uncomfortable level if I ate too much salt and not enough fluids (I never know the proper balance). I do not restrict salt from my diet though.

My legs started aching about 6 weeks ago just before my POTS-like symptoms appeared. It feels like my veins are hurting and yes they also ache after working out (i.e cycling). Both standing and lying down.

The pains temporarily disappeared for a week but flared up this past week... I've been measuring my BP lately and it's been low (95-104 on average) when the pain appears so I feel my sodium is low and thus my blood volume is probably low too. Eating salty things (or just salt) and drinking water seems to help a little.

EDIT: Also I'm having a CVI test this Tuesday to examine any vein issues in the legs. 

39 minutes ago, Pistol said:

I had all the mentioned tests done to rule out pheo. Even if they are normal - if your doc suspects hyperadrenergic based on YOUR SYMPTOMS then he might order a blood test for catecholamines. I had that done after the pheo work-up was negative and my catecholamines were elevated, confirming hyperadrenergic POTS ( based on both labs AND symptoms, as well as TTT). If all your tests come back normal you may be a lucky one and not have dysautonomia! - To be sure - and if you question your tests - you should ask for referral to a major autonomic dysfunction center. Once they receive your test results they will be able to tell if they feel you have dysautonomia or not. 

Can catecholamines levels be elevated without that day being an episode/flare-up? Did you only have elevated catecholamines and not elevated levels of the other hormones?

I heard of tests where they trigger the symptoms then draw blood to test for the excess of hormones. Did I not catch the hormones on a proper day?

I had an episode that Tuesday morning and had my blood drawn that afternoon but the 24hr urine sample was from two days earlier and my second 24 hr urine sample that matched the Tuesday episode didn't seem to get tested. I did not have blood tests for the above hormones for some reason - I thought both urine and blood were tested, but no.

I suspect I will redo my catecholamines test because the first did not get processed (lab report says - please redo) but if the other hormone tests are normal that would signify catecholamines should be normal too, right? The chemicals are inter-related?

If I don't have dysautonomia... what the heck do I have?

On 10/4/2018 at 5:10 PM, RecipeForDisaster said:

Ugh, thanks, he wasn't too helpful! I wonder if that's true, I sort of doubt it. I know I don't have pheo, I was tested for it years ago when I had unexplained hyPERtension and now I can't keep my BP up at all. 

So my tests results came back... it seems my Metanephrine, Normetanephrine, Vanillylmandelic Acid, and HIAA are all normal but Catecholamines test needs to be redone. Not sure if I should bother repeating Catecholamines as the other tests are normal.  Can you have pheochromocytoma with normal results for the first four?

I thought my doctor also ordered a blood test for Catecholamines but he did not? Or the lab was confused by the handwritten request. I have no idea what they did with the second 24 hr urine sample. I think the request completely confused the lab.

My renin levels were normal this time around.

I still have HR/BP symptoms but in shorter spurts than weeks prior (I recover in hours versus almost a full day). If I go with a dysautonomia diagnosis... what type of autonomic testing should I ask for? Thinking Mayo Clinic in Jacksonville, FL could do this? I don't have consistent POTS so the TTT would not be helpful. I think I can trigger my symptoms.

5 hours ago, Pistol said:

@voxel - do you think ALL of your symptoms were caused by gluten intolerance? That would be wonderful news! - I know that POTS causes GI distress but what if GI distress causes POTS? And if you get better after changing your diet? --- I myself am not gluten intolerant ( tested and confirmed ) but it may help some other dysautonomia patients. 

No. The first two weeks where I first began experiencing sinus tachycardia were caused by gluten interolance...  Any blood pressure or HR spike now is caused by dysautonomia or pheochromocytoma (still waiting for the results) and far less frequent. I used to have HR spikes 3-4 times/day when eating gluten and now they are every two or three days without gluten.

My POTS-like symptoms (standing up -> HR spikes) have lessened since my leg vein pain has toned down in intensity.  I can tolerate a BP 136/89 without sinus tachycardia... unfortunately there have been days where my BP spirals up to 156/98 or higher.

1 hour ago, peachychou123 said:

I've been taking some supplements. I don't have a BP cuff because measuring or thinking about my blood pressure or HR often makes me feel more anxious tbh. I only do it if I'm really symptomatic, otherwise it just distresses me. I have noticed that on the times the Dr took it and it was high, I actually felt more dizzy sometimes than when it's lower. My Dr said high BP doesn't make you dizzy but I know a lot of people who get dizziness with high BP.

I'm not sure if the diarrhea is viral or just because I'm so anxious and my esophagus and upper stomach feel irritated. I'm trying to keep my salts/electrolytes + fluids up. But even getting to the local shop to buy some pedialyte is a struggle atm. 

Yeah dizziness/syncope happens when you have low BP - at least for me. I absolutely need to know my BP... it's the first sign of future tachycardia for me. I was obsessive measuring my glucose for a few weeks and found that exercise pointless. There was no correlation between my glucose and HR spikes. And I'm not diabetic as suspected by doctors.

Uber/DoorDash/Instacart have been amazing for me. I have not driven for 7 weeks... a friend jokes I have PTSD from driving.  The times I have attempted in the last 3 weeks I had tachycardia. It's mostly Uber and friends picking me up.

Pedialyte is okay but sugary and missing out on calcium, magnesium, folate, B12. I find raw spinach, kale, carrots, celery, and broccoli sooth my high BP better than electrolytes. Of course I still drink electrolyte mixes all day

Do you have a way to measure your BP at home? On good days my BP is normal and regulated. On bad days my BP just rises randomly (could be after waking, could be after sitting, etc) and drinking water/electrolytes and resting will drop it back to normal. Also being stressed will raise BP unfortunately. For me it was a vicious cycle... high BP, tachycardia, lower BP via fluids, anxiety, even higher BP, more tachycardia.

The diarhea is odd though. Diarrhea alone can flush out all nutrients and cause serious issues like dehydration and electrolyte imbalances that trigger sinus tachychardia.  Food sensitivity can cause serious diarrhea.

10 hours ago, StayAtHomeMom said:

Did you actually have an elevated SED to check for inflammation? Or just best guess?

My ANA and SED were normal (tested after diagnosed with dysautonomia to confirm no other issues) a few weeks after stopping eating gluten. I did not have those tests while suffering. 

Along with the rest HR drop, I noticed my HR while sitting/standing was constant 108 for a full week but dropped to 88 within 24 hours after stopping eating gluten.

23 minutes ago, Pistol said:

@jklass44 - yes, I am similar to you. I start with just feeling "off", then progress to sleeping difficulties, irritability, palpitations .. then diarrhea and heartburn, nausea … then I wake up in the mornings with chest pain radiating up my left neck and - without fail - when I check my BP is always above 140/90 with those symptoms. If I try to treat it with bed rest I end up not being able to get out of bed without passing out. If I ignore it or exercise I end up having seizures from high BP. There are no meds that help once I get this bad - the only treatment is 16 - 24 hours of IV fluids at 125 ml/hr. This rate seems to re-establish a normal pressure in the circulatory system that stops the faulty ANS signals that either dilate or constrict my blood vessels. This has been proven in my medical record - they gave me IV boluses one after the other in the ER and there was no effect. As soon as they started to run the IV at 125 or even 150 ml/hr my symptoms subsided, BP normalized ( from 150/100 to 100/60 ), palpitations disappeared and I am able to ambulate without any orthostatic symptoms. Even nausea, diarrhea and constant urination go away. I literally go from being a very ill person to someone very well. I always say that I "go into the hospital crawling and come out skipping". The people that witness this change are always amazed b/c I look extremely ill when I get that bad but turn into the best version of myself after the fluids. 

Wow... so your BP rises and nothing you can do immediately to lower it? Do meds temporarily lower your BP but then it rises again? Thankfully for me drinking a ton of water and triggering my kidneys to activate (and urinating) drops my BP within a few minutes.

8 minutes ago, peachychou123 said:

I'm sure you know this but it sounds like your blood was pooling a lot, especially if elevating your legs helped with the pain and then the tachy. Like most pots people my blood pools in my legs a lot and my feet go purple, if it's really hot my HR goes up more, and sometimes my calves ache, but a few hours laying down usually seems to resolve it. So I'm surprised my body is acting like I've been standing too long when actually I've been laying down for 8 hours. It's...strange. And the fact it's happening first thing after waking does *kinda* sound like an adrenaline thing. I don't know what to think right now.

My legs/feet didn't go purple... they were cold and sweaty. And my calves ached. I now know cold feet is a sign of low salt for me. I'm sure everybody is different. Also when I have low salt my BP drops below 100/65 (and will fall lower if I am dehydrated) so I know I should have something salty like a pickle or chips.

When I started bumping up my salt... the calve pain lessened. In fact when my calves ache now it is a sign of electrolyte imbalance. Cramping - low potassium. Veins feel tight... low salt (low blood volume).

Officially I don't have POTS according to my cardiologist because my HR spikes upon standing ONLY when I have a high BP. And I have HR spikes when sitting or laying down, but infrequently (i.e once every 4 weeks).

I'm having a vein ultrasound in a week or so... CVI I think it is called. The leg pain happened after one day of overexercising my legs . At the time I was eating VERY LITTLE salt(I could feel the veins in my leg constrict)... I went on a veggie diet and no processed foods so my salt intake was minimal.

My gluten intolerance arrived at the same time as my dysautonomia symptoms.

According to my gastro and cardiologist... the small intestine - where celiac's and gluten intolerance occurs - sends electrical signals to other parts of the body and when irritated can cause other issues.

When I stopped eating gluten I experienced far fewer HR issues. My rest HR (from FitBit) went from 79 to 70 within a day. My body was definitely suffering from inflammation.

4 hours ago, Pippie said:

What foods have electrolytes? You mean like bananas? I’ve been literally drinking electrolyte ( like pedialyte) 

Electrolytes means sodium(salt), potassium (bananas, spinach, kale, etc), chloride, calcium (almonds, milk, etc), magnesium (nuts), B12, zinc, etc.

Pedialyte has the core electrolytes and lots of sugar. I developed some random insulin resistance so I can't drink it anymore (I used to swear by it) so I've been using these instead 

nuunlife

ultimareplenisher

drpricesvitamins

9 minutes ago, peachychou123 said:

Wow, that does sound incredibly similar to what I'm going through right now. Were you going through any kind of flare-up or stress at the time aside from the vein pains? 

I'm hoping this is just a pots flare-up. I'm going to stop eating anything salty after noon and anything in general after 7pm and see if that makes a difference. The night before I'd been eating  Chinese food with a friend so tons of salt and MSG 😕

And I'll be drinking more water (although I drink a lot already). My first instinct was also dehydration, but I just remembered on the morning I called the ambulance, the tachy resolved without drinking anything, because I was too scared/unsteady to manage to get myself water. I just sat up and tried to breathe deeply/bear down a little bit. So it's bugging me. I don't have a monitor so I'm not sure what's going on during sleep (and am a little scared to know frankly) but I noticed the morning after I got the saline drip at the ER, I didn't wake up with the tachycardia. And maybe just my general anxiety levels at the moment. I'm always worried it's something more, but I'm trying to stay positive. 

Well the past 8 weeks have been the first time I've experienced consistent sinus tachycardia (and dysautonomia like symptoms) before that I had these HR spikes once every 6-8 months which only started two years ago. I was stress out about not knowing why I was experiencing tachycardia and I went to ER four times in three weeks. The worst HR spikes happened when I started experiencing leg vein pain.... before that all the tachycardia events were once, twice, three (max) a day. With leg vein pain I could experience tachycardia every time I stood up with an elevated BP... basically like 10-12 times a day.

My FitBit caught the tachycardia events when I slept. I'd wake up feeling gross and slightly sweaty and wondered why. Thankfully I have no experienced any such events in the last 3 weeks as I control my blood pressure and electrolytes carefully (I make sure I keep my salt, potassium, calcium, magnesium balance).

Also drinking water is NOT always good. You will urinate out potassium and other electrolytes.

Yeah I'm not convinced salt loading works for everybody. It's what my cardiologist recommended upon telling me I had dysautonomia (in the process of a second opinion) but the high salt elevates (can't always drink enough water to balance electrolytes perfectly) my blood pressure to hypertension levels which then eventually triggers sinus tachycardia for me.

I do try to have more salt than normal as low salt levels I can feel in my leg veins these days.

What you described is what I experienced 4+ weeks ago. I'd eat something salty at night, be ever slightly dehydrated, I'd wake up with some random HR spike (maybe even sweating) with an elevated blood pressure above 140/90 (I'm usually 108/73 or so) and then when I would stand my HR would race to 150-170bpm. If I drank 1-2 full glasses of water I could lower my BP to 125/85 and my HR down to 110 or lower. I'd measure my BP/HR before and 10mins after drinking water.

This was also when I had leg vein pain and I had to sleep with elevated feet...  When that sort of half-healed itself (I no longer have to sleep with feet up) my HR didn't race overnight. I also stopped eating anything too salty before going to bed.

My GI issues were because of an inflammed gallbladder that was removed (no gallstones, etc.). Because of the non-stop bile acid from the liver I was suffering from nutrient malabsorption and diarrhea issues that would cause crazy electrolyte balances and heart palpitations and weird cramps. Most of the latter were fixed with Welchol (Cholestyramine did not agree with my system) and any HR issues I have are due to dysautonomia (I can sort of predict when they occur now).

Definitely find out why you have GI issues... maybe food sensitivity? 

On 9/21/2018 at 6:36 AM, RecipeForDisaster said:

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

So the nephrologist says the high renin is meaningless without high aldosterone (on the upper end but not crazy). He doesn't need to see me again (kidney unlikely to cause my symptons) and say I should continue with the pheochromocytoma tests and go back to my endocrinologist with the future test results. He doesn't think the cardiologist should be handling pheo... which I sort of agree but the cardio was the first doc to mention it and order tests. Other docs just want to blame anxiety!!! (lol)

I hoping to get my pheo tests results back in a week. I'm not sure if the blood or urine test will capture it because I have not had a full "bad" day for 1.5 weeks now and only took the blood + urine test on an extremely bad morning where my BP went from 108/72 to 140/90 (caught by a nurse). My BP/HR spikes happen every other day and only persist for shorter periods (then my BP is back to normal) rather than before lasting 20-hours or longer. I may ask for another test and wait until I have a full bad day again (where I am bed-ridden).

@KiminOrlando @RecipeForDisaster

An update:

I saw an endocrinologist anyhow because they had an immediate opening but the doctor was so inexperienced or didn't care - she ignored my symptoms (polyuria, blood pressure changes, electrolyte issues, renin high, etc) and only focused on my insulin resistance issue. Hopefully yours will be more experienced and not brush off symptoms.

I'm still seeing an nephrologist this upcoming week for the high renin. There's something amiss with my body because when I'm dehydrated (my blood is thick and doesn't flow well for glucose tests) I still urinate a ton. Or is that normal? It's also odd because my diet is high salt (I eat salty foods but I don't ADD table salt) and renin is produced when sodium is low which I doubt happens to me.

Then I saw another more experienced cardiologist for a second opinion (first diagnosed me with dysautonomia - and said not POTS) who suspects I have pheochromocytoma from my symptoms which started two years ago but only regularly flared up in the last 8 weeks. He doesn't think it's dysautonomia because he says I should be experiencing blood pressure drops rather than blood pressure rises intermittently. I'm not entirely sure that is true... but it is true that my blood pressure and HR only rise. I don't experience low BP or low HR ever. 

So over the next two weeks I'm collecting 24 hr urine samples and getting blood tests on "bad" days when I experience these BP and HR spikes These bad days are less frequent but I believe I can trigger it by overexerting myself by exercising then waiting 10-15 mins for a sudden BP spike to say 156/98 from 108/73

This forum has been great info. I feel I can eliminate POTS because I don't exhibit the symptoms consistently and a TTT would be pointless, but dysautonomia or pheochromocytoma are still possibilities.

For those who tried working while suffering from Dysautonomia. How did intermittent FMLA work out for you? Was it worth trying to work off and on while suffering from symptoms?

Anybody go on long-term disability for a while to recoup from the symptoms?

10 hours ago, RecipeForDisaster said:

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

The endocrinologist I was supposed to visit - said because of my renin levels (2x over max) I should see a nephrologist instead so I found one that would examine me on Oct 4th.

Will update this thread after I do. Renin explains why my blood pressure would yo-yo up and down on bad days. After all regular tests passed, I had to force my primary doc to get tests for renin, aldosterone, cortisol - because I knew something was amiss with these hormones in me.

12 hours ago, Pistol said:

Hi @voxel - I am not sure what he means by "dysautonomia - not just POTS". POTS IS a dysautonomia! It sounds to me that he just does not want to get into it (typical!!!!). Yes - to determine which type of dysautonomia you have you should have a TTT. If you HR AND BP are elevated you should be evaluated for pheo ( blood tests and 24 hour urine sample ) Often a autonomic specialist will check your norepinephrine levels. These are the usual tests that autonomic specialists order to make a diagnosis. In the way of medications - that completely depends on your symptoms and the type of dysautonomia you have. For NCS and POTS they often use BB for the tachycardia, but not exclusively. There is midodrine, SSRI, calcium channel blockers … many options. Once you have a PROPER diagnosis ( good choice to get a second opinion! ) the physician should determine what is best for you. --- The surgery and bed rest could absolutely be the cause of your symptoms, dysautonomia is commonly a result of surgery. Slow reconditioning is the best treatment for that: try to extend the periods of being upright slowly every day. If you currently can be upright for 3 minutes before the symptoms start the get up 3 minutes several times a day and then increase the time you are up every time, even if it is just 15 seconds more. Also - sometimes try to sit down rather than lying down. You body needs to learn to adjust to standing up again and that needs to be done slowly but consistently. Also - drink plenty of fluids and see if compression stockings help, they will prevent the tachycardia and help you be upright longer. You can buy them online or from a medical supply store. You need to find your correct size though by measuring your calf and thigh. Check with a medical supply store, they can measure you. --- I hope all will be well and keep us posted on your progress!!!! Best wishes!

Interesting. So if my HR and BP rise I could possibly have Pheochromocytoma? Thanks for info.

90% of my "dysautonomia issues" are POTS-related where I wake up at night with an elevated BP (i.e 135/85) and when I stand up my HR goes bananas (up to 140). Why my BP rises I don't know because on good days the rise is minimal or non-existent. So I will have 3 good days with no issues and 3 bad ones for no apparent reason... the cardio says this is normal and said to return back to work. I said no way.

On bad days, my BP rise constantly (i.e I can be sitting or laying down or napping and my BP will rise to 135+/90 from 108/65). This causes me to wake up every 2 hours at night and during the day I need to constantly drink water or do something to get the BP lowered or the HR will go bananas. Is this common in dysautonomia? I worry there's some other endocrin issue. All blood tests have shown normal ranges except for Renin which is elevated and why I will see an endocrinologist soon

Hi all,

My cardiologist (an electrophysiologist) said I have Dysautonomia... not just POTS. He did not perform any tests for Dysautonomia but I had an ultrasound to check the heart physically and a 7-day heart event monitor to check for arrhythmias (none).

I am getting a second opinion to be 100% sure. Do I ask for a tilt table test? What else? My HR will shoot up to 130 (from 80s lying down) upon standing when my blood pressure is above approximately 130/80 and this HR will persistent for minutes (I never stand up long enough to check if longer than 10 minutes and always lie back down).

If I am below 130/80 my HR will only rise a little and not be an issue. I've had HR spikes during driving and standing around... so I sort of understand the dysautonomia diagnosis.

I wonder if my POTS is due to some leg vein issues that developed after I had gallbladder surgery where I was in bed for extended periods of time (maybe 4 weeks total - had pre AND post surgery diarrhea).

Also.. are beta-blockers the first choice in medication for POTS? Just trying to arm myself with information.