Blood pressure spikes: Is this "Normal"?

Posted by Capitalasper @capitalasper, Jun 5 3:18pm

I do not currently have any heart associated diagnosis. I suspect I have Lyme as nothing else is really explaining all of my symptoms, but also, undiagnosed.

My BP is usually 90/70 and under, but occasionally will get up to 120/90, I've never seen it go over that but I only just got the BP cuff. I recently got a smart watch because I felt like I have palpitations. When I listen with a stethoscope it sounds fine if not a bit inconsistent rhythm wise but I suspect it's the normal inconsistencies (it goes up when swallowing and breathing in)

My watch shows frequent spiking from 60-150 throughout the day, and sometimes the stress function will beep and tell me to relax even though everything else seems fine measurement wise, but often when it does that I find myself feeling very cruddy very soon, and usually wind up laying down or falling sleep on the floor (that's just sorta where I sit every day, so it's not weird that I'm down there)
It will often dip below 50bpm when I'm still awake, and usually that's when I feel crappiest OR getting ready for bed. I can understand it when I'm in bed or asleep but not when I'm still awake and doing things.

When I stand, it ALWAYS jumps up by 50bpm, I usually go from my resting 60-78 to 125-140, and I get extremely lightheaded when that occurs. Often I stay up and try to ride it out but I usually wind up losing my vision and sense of hearing. On the worst occasions I can think of I had to drop to bed for a good few minutes while everything came back, but usually all I have to do is hang my head upside down for a few secs and it comes back way quicker.

When I shower, my feet turn purple and if I bring them up to shoulder height I can physically watch as the blood drains from it and it returns to normal color. And generally when that happens I find myself realizing I felt cruddy and didn't even notice until it was drained back in and I felt better.

What is mildly concerning me at the moment is that starting a few days ago, I had a consistent pain in the left side of my chest, which lasted for two days and didn't seem affected by food considering I woke up with it. Since that day my watch has been showing absolutely absurd fluctuations that, as far as I'm aware, are out of character for myself, and I have not been feeling good at all. No appetite whatsoever and just feeling really tired and easily anxious.

Last night was extremely rough for absolutely no reason, I have chronic sinus inflammation and yesterday it just would not budge no matter how much (horrible) nose spray I used, I literally cannot tell at all if I was just getting myself worked up over that or what but my heart was freakin going at it all night. It just felt like absolute crap, queasy, palpitations, anxiety, cold as all hell, and a weird doom feeling. BUT those are literally all symptoms of a panic attack, and also all of my readings were borderline spotless. Like that was actually the first time I got a reading of 120/90, and hr wise, I don't really feel like 148 isn't really that concerning?

I'm not exactly a healthy individual but I struggle substantially to get a diagnosis to explain why so many organ systems are affected, and thats why I suspect Lyme (that and a bullseye rash a year before symptom onset)
I have SMAS and no thyroid, and have been in Ketosis since November because fruit and carbs obliterate my stomach and make me wish I was never born.
But I mask so incredibly well when I feel horrible/pain that most doctors seem to struggle to believe when I say my symptoms are as bad as they are, I think they believe I'm exaggerating, but I'm just autistic and I mask everything, especially when I'm in a situation where I'm being directly observed. Like I said, I usually even walk off almost blacking out just to avoid drawing any attention to myself, I absolutely loath the idea that somebody might ask me if I need help, I want to be 1000% independent. To heck, I had a cyst extraction two weeks ago that was nearly golf ball sized and blatantly refused any pain medication, I'm so sick of being accused of only going to the doctor for drugs it actually ruined my day that they even offered them.

But because of all this I have an extreme aversion to doing to doctors anymore because of how much I've been dismissed and told I'm just lying or want attention in the past few years. So as one can imagine, I'd really rather have some evidence that what I'm experiencing isn't just weird hormone stuff I can ignore/will be dismissed for anyway before wasting money I really don't have a lot of.

So based on all that… Is this worth going to an urgent care over? I don't have a cardiologist or a GP that thinks I need one.

Interested in more discussions like this? Go to the Heart Rhythm Conditions group.

I would ask for a cardiac pet/ct procedure with the proper tracer as soon as possible.

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@rj4group

I would ask for a cardiac pet/ct procedure with the proper tracer as soon as possible.

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Thank you for that, I've not been told a proper procedure to even look for. I will see if they feel it is necessary.

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Hello @capitalasper and welcome to Mayo Clinic Connect. Often times, when we have a suspicion about our health it is our intuition guiding us. If you feel in your gut that this is worth exploring, that is all the validation you need to help eliminate some stress and know one way or the other.

I see that @rj4group has joined you to share what they feel may be a good starting point.

Do you feel like you will explore this further?

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Sorry for what you are going through and understand your feelings about doctors' appointments.

Were you treated for Lyme after the bullseye rash? If so with what and for how long?

Have you looked into POTS? https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

Those nasal sprays can speed up your heart and even cause palpitations. Ditto decongestants. Try to use nasal steroids like Flonase instead.

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@rj4group

I would ask for a cardiac pet/ct procedure with the proper tracer as soon as possible.

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Agree with rj4group

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@windyshores

Sorry for what you are going through and understand your feelings about doctors' appointments.

Were you treated for Lyme after the bullseye rash? If so with what and for how long?

Have you looked into POTS? https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

Those nasal sprays can speed up your heart and even cause palpitations. Ditto decongestants. Try to use nasal steroids like Flonase instead.

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I was never treated, have attempted multiple times to wean off the afrin with failure, attempting again right now because I hate being dependent on it, unfortunately flonase and even prescription steroidal sprays dont help me at all, I'll be trying cromolyn next since its almost certainly a mast cell issue.
I asked the urgent care about POTS but they weren't sure and didnt persue it.

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@rj4group

I would ask for a cardiac pet/ct procedure with the proper tracer as soon as possible.

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I went today, but they said this procedure didnt make any sense to run based on my symptoms so they did not do so. They ran an EKG and ultrasound, which were both normal. They had no explanation for the spikes and told me it was likely nutritional. I've been after GIs for 3 years to help me with that and have gotten nothing, so that's not really much help to me :/
My takeaway from this is that these readings are indeed normal and of no concern. I cannot imagine they would've let me leave with no follow up or referrals otherwise. They gave me the holter monitor but if it's just the same as everything i showed them and it wasnt concerning then, I'm not really sure what it will achieve?

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Well you had Lyme disease and it was not treated so it may be chronic. It can still be treated. Try going to Lymenet.org to the seeking doctor site. You need a functional medicine doctor or another kind of "Lyme literate doctor." You can certainly have POTS and dysautonomia from Lyme.

You can't tell much about your heart until you get off the Afrin. I have arrhythmias on Afrin. Maybe there is a bridge nasal spray you can use while you get off? Does an ENT have suggestions?

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@windyshores

Well you had Lyme disease and it was not treated so it may be chronic. It can still be treated. Try going to Lymenet.org to the seeking doctor site. You need a functional medicine doctor or another kind of "Lyme literate doctor." You can certainly have POTS and dysautonomia from Lyme.

You can't tell much about your heart until you get off the Afrin. I have arrhythmias on Afrin. Maybe there is a bridge nasal spray you can use while you get off? Does an ENT have suggestions?

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Already used that route but sadly there are no LLD in my area who take insurance, most require at least 800 out of pocket per appointment and I literally do not have that whatsoever. Infectious disease actually denied a referral given by my GP for the western ot "not being positive" as only one band showed up, however that test was administered 2 years after the rash. Trying to explain this did not get me anywhere.

Currently I am waiting for some cromolyn in the mail to see if I can make some headway with the nose spray battle, I currently have a bottle of semi diluted phenylephrine and will slowly begin to dilute the Afrin bottle as well, as the afrin has completely stopped working and I had to move onto the phenylephrine anyway. my hope is that by slowly diluting the afrin while using in conjunction with an already diluted version of phenylephrine that I plan to continue to dilute by one drop of saline a day, while introducing the cromolyn (which has a tendency to take a while to begin taking affect) I can actually do so successfully this time. It's only the deviated nostril that's hopelessly dependent, the other one can take significantly less of the meds with a pretty decent effect. Already noticing I'm having to take it a bit more frequently but that's a sign that it's working (at least it was the sign the last few times I got halfway through)
I think it's just going to take a very long time and I think I'm going to have some relapses during inflammation flare ups but hopefully the cromolyn will remove that complication from this scenario.

As for ENT, it was confusing, the first nurse who looked said there was literally no way Afrin use couldve possibly caused the nasal problems I have because they arent located in the nasal cavity, it is chronically swollen adenoids that as far as I'm aware, has no evidence of rebound effect, as well as a deviated septum. She of course still agreed that getting off afrin would be best and I absolutely agree, but this problem likely will have a surgical answer. The next doctor I saw at that practice after a prednisone regamine dismissed it completely, said they looked fine, and that i need to stop the afrin cold turkey… that's just not realistic for drug dependencies. The only thing I agreed with him on is that he didnt feel comfortable doing surgery on a deviated septum while dependent on afrin because it changes the anatomical structure of the nasal cavity, and I can absolutely see how that would cause complications that I think we would both rather avoid, I just wish he has given me the headsup to give cromolyn a try back then, I found out about it through MCAS groups, and since so many of my symptoms are alleviated by benadryl, its worth the shot to guess that they could be related, and heck, if the cromolyn works here, I can bring that up to some other docs to maybe get the oral route and see if that could possibly have anything to do with the abdominal pain I have. Just kinda butthurt that flonase and those steroid sprays did quite literally nothing for how expensive they are.

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This is an extensive journey you are on. Once you are off Afrin (and your methods are smart!) I would not be surprised if surgery is what brings your relief.

As for the Lyme, I did find one Lyme doc who took insurance. I also could not afford that care otherwise. I also found one functional doc who took insurance.

It matters which band was positive. If it was 41, that is common to many spirochetes and often found in gums. If it was, say, 23, that is Lyme specific. The CDC counts how many bands, but Lyme docs look at which ones in terms of being specific for Lyme.

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@windyshores

This is an extensive journey you are on. Once you are off Afrin (and your methods are smart!) I would not be surprised if surgery is what brings your relief.

As for the Lyme, I did find one Lyme doc who took insurance. I also could not afford that care otherwise. I also found one functional doc who took insurance.

It matters which band was positive. If it was 41, that is common to many spirochetes and often found in gums. If it was, say, 23, that is Lyme specific. The CDC counts how many bands, but Lyme docs look at which ones in terms of being specific for Lyme.

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My hope is that I can accumulate enough money for a more effective Igenex test to use a proof and also check for coinfections. If it was just a random igg band I would've happily dismissed it too, but unfortunately it was lyme specific band 39 😭
I did receive antibiotics since the bite, but it wasnt for that reason, just a normal 14 day course for UTIs I get chronically, so i think that couldve pushed them into remission to a degree but truthfully I do not think it was enough to eradicate them and at this point, I'm just going to try my luck with my rheumatologist who specializes in scleroderma, he brought up the possibility of using IV antibiotics to treat the SIBO who has laughed off 3 full courses of Xifaxan. With any luck it might kick the rest of the lyme still bugging as well.

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@capitalasper

My hope is that I can accumulate enough money for a more effective Igenex test to use a proof and also check for coinfections. If it was just a random igg band I would've happily dismissed it too, but unfortunately it was lyme specific band 39 😭
I did receive antibiotics since the bite, but it wasnt for that reason, just a normal 14 day course for UTIs I get chronically, so i think that couldve pushed them into remission to a degree but truthfully I do not think it was enough to eradicate them and at this point, I'm just going to try my luck with my rheumatologist who specializes in scleroderma, he brought up the possibility of using IV antibiotics to treat the SIBO who has laughed off 3 full courses of Xifaxan. With any luck it might kick the rest of the lyme still bugging as well.

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Quest Lyme Western Blots are pretty good. Igenex may not give a CDC positive test. The thing is, you might test positive if you take antibiotics. That happened to me. Still, with a Lyme specific band, some docs would treat, but it tends to be docs outside the mainstream insurance system! Hope you can get help!

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