Unable To Detect Pulse At Times- Anyone Else?

[MissPatient20]

Hey everyone,

I've not been doing well lately.

When I'm feeling truly awful (many times a day), I grab my wrist and try to feel for my pulse, almost just to make sure that my heart is still beating.

What freaks me out is that when I'm REALLY bad, like today, I can't feel it no matter how hard or long I try. My pulse must just be that weak or indetectable.

I get so scared...

Anyone else?

Thanks everyone.

[erik]

Yikes. I've shown up to doctor visits and had the nurse struggle to find my vitals, double check her machines & setup... etc! It's not typical for me but in the worst times it can happen. I joked that "maybe I'm dead and don't know it". This was before I knew POTS even existed... much less that I had it (or something incredibly similar Some people have these signs pop up even before or while becoming sick (like cold/flu)... which is partly what was going on for me that time.

Its usually (maybe always?) a sign of super low blood pressure. One of the old school tricks to estimating BP (when lacking equipment) is to note the spots on the body where you can find a pulse. Each area will fade out to be undetectable around a certain range of BP. So for example, if you can't find it on the wrist but you can on the carotid then you estimate the BP to be XXX.

I've only experienced it while sitting/laying a few times (though countless times trying to stand too long) and that is very scary to have the vitals drop out so badly. Do all you can for hydration, of course! Lay-down with feet up should usually help. If you aren't working with a doc already on this, definitely keep them informed and see what they think and can do... and get a BP meter if you don't already have one, so you can document/confirm that it is super low BP going on!

[lissy]

I can never check pulse on my wrist its very weak I always check on my neck.

Lissy

[firewatcher]

Tee hee hee! I freak my doctors out with this one! I had a neurologist keep groping at my wrist and he finally turned red and said: "I can't find your pulse." He gave up and used a stethascope. It isn't always a sign of LOW blood pressure, it can be a sign of vaso-constriction. I can have high BP and ice cold feet and hands and no peripheral pulse.

[gomindy21]

I have that quite often. I use to have a very strong pulse until the last couple of months when my POTs progressed.

[erik]

Good point on the vasoconstriction. That would make the pulse hide nicely.

Here's the "old school" trick to "field measurement"... ignore all the folks that assume "that's impossible"... scroll down to the Army medic answer. He knows more than the obvious! (Maybe vote up his answer while you're there if you're an "answers" person

http://answers.yahoo.com/question/index?qi...17084757AA5NWox

[JeffKohrman]

I've had times where the nurses couldn't even hear my pulse. Weak heart some days, ripping out of my chest the next. Good times, eh?

[MissPatient20]

Thank you for your responses everyone! This does make me feel better, because I just got home from a doctor's appointment that ended up really freaking me out. I told my doctor (who is not dysautonomia literate...she doesn't know what it is...don't have insurance to cover one who does) about this issue, and she was quite alarmed and said that I need to call 911 when this happens because it could mean that my veins are collapsing or I'm going into cardiac shock or something of the sort! I left the clinic feeling far worse than I did when I arrived. I thought, if this doctor is right, then I'm about to keel over..and I'm going to have to call 911 4 times a week!

So thank you for sharing your experiences because it makes me feel less like I'm about to die. Vasoconstriction makes a lot of sense to me! I can barely feel my pulse today (and am having periods where I can't feel it at all), but my blood pressure was okay for me (100/64...it's usually 85/65-95/650) when they checked it.

Can that cause your pulse in your neck to be hard to detect as well? I'm having an issue with that too!

It's very odd..I can NEVER feel my pulse on my left side...but I can usually (when im not like this) feel it on the right. What gives?

Thanks for sharing your wisdom you guys. I'm new at this. It's scary!

[firewatcher]

Think about it logically for a moment: if your diastolic and systolic pressures are close, it would be hard to feel a pulse. The pressures are too narrow. Vasoconstriction is the body's response to lack of blood volume and upright posture.

The neck thing would bother me, if you have a blocked artery there is a problem. But, if the artery is just deep or in a slightly different place, it would be hard to feel. Educate your doctor about dysautonomia, print out the summary articles and give them to your doc. IF the doc can hear the whoosh through the artery with a stethascope, it is probably just deep, but get it checked out the next time you go.

Your BPs are typical for low blood volume, it is called narrow pulse pressure (the numbers are close together.)

[juliegee]

Me too on this one. You are definitely not alone, I think this is typical in dysautonomia. Many times (when symptoms are bad) the nurse can't get a BP on me at all. They try and try and then finally just write down something kind of "normalish" in resignation. I've told myself to ask the doctor to check my BP the next time this happens. It'd be interesting to see his take on that- no BP. When I'm hospitalized, the automatic BP alarms continually go off- what a way to wake up

I also can't get a reading on a pulse/ox meter that clips onto your finger. Mine sometimes registers no HR or oxygenation. It really scares the nurses. They often ask me how I'm feeling???? Okey-dokey We usually chalk that peculiarity down to Reynaud's.

Don't worry too much about this. How awful that your doctor scared you instead of reassuring you!

Julie

[erik]

I guess I'd be on the lookout for other signs of localized vasoconstriction... doesn't it tend to make things go numb, or painful, sometimes change colors, maybe flushing, etc. Or if it's the supply to the head that drops out on would expect to faint.

Might be worth pressing as best you can with whatever docs you've got for some extended cardiac monitoring like a Holter. When screening for possibilities beyond "just POTS" it shouldn't matter as much if they're a POTS expert... looking for "differential diagnoses" like arrhythmia and such. Seems with a non-POTS expert you could get slotted as IST... but as POTS experts say, that is a challenging distinction.

And the doc has a point about "shock". From a quick read on the subject, it seems that either generalized or localized "hypoperfusion" (lack of blood supply to critical organs) can induce shock. Ideally, one should "end up" at POTS after excluding whatever else one can... even though it is most likely all that is involved, considering & screening other key things is worth pressing for as best you can. I wish the doc had given more options than "call 911"... like a Cardiologist referral or something. Dang.

[AndreaC]

This happens to me all the time. The nurses usually give up on taking it and have either the doctor or another nurse try and find it, or write down the previous number. The nurses at the hospital don't like me either, I am always making their machines go off. I didn't know why this was happening untill I got my dx a few months ago.

[lmt033167]

I have NCS and OI, along with heart problems.

I have freaked out my fair share of drs, but it's most fun to freak out my oldest children LOL [23 & 24]

my best line to dr's is - don't you have to have a heart to feel a pulse? lol some laugh some just glare at me...

[MissPatient20]

Thanks again for responding everyone.

Between what my doctor said and what I've read online, I'm still a little freaked out. It does help to know that I'm not alone in this whole "I have no pulse" thing. It's so good to hear that others have experienced this and that you're ALIVE!

It happens around the same time every day now and lasts for about 3 hours.

I'm wondering, for those of you who experience this, how disabled/debilitated are you? I'm mostly bedridden now and 100% housebound. I haven't been able to leave the house (aside from being loaded up to go to the doctor, which is quite an ordeal) in 6 months.

Thanks again for your input everyone.

[AndreaC]

I have OI and NCS also. I am pretty much bedridden also. I can only get out of the house with the help of a wheelchair and I only get out to go to the doctors. I have been this way for about three months now. I have been getting progressively worse for the last six months.I get very tachy when this happens and very dizzy. It has gotten a little better, but it used to happen a couple of times a day. When it happens I get something to drink and elevate my feet above my heart. It is worse on days that I don't get enough salt and fluids.

[potsgirl]

I was diagnosed with POTS/OI and also have heart issues, (also have chronic low BP) and I can get out about 3-4 days a week for a couple of hours each time, if I'm not in a particularly bad spell. I walk for about half an hour if I can, then stop at TJ's or Fry's (both grocery stores) to pick up a few items or run another small errand. Stores are difficult for me because of all of the sensations, the noise, lights, too many people. I get out to a movie maybe once a month, eat out for lunch about the same. I get up about 6-6:30, take a nap after lunch, then am back in bed around 6, reading. I just hope that I can continue being at least this active! Do have a wheelchair for 'mall shopping' if needed.

Try your best to keep moving, even if it's just around the house, if it's safe.

Cheers,

Jana