Blood pressure spikes: Is this "Normal"?

Posted by Capitalasper @capitalasper, Jun 5, 2022

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 Support Group.

@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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@capitalasper

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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Most Hospitals and physicians will not prescribe a pet/ct because of the cost and your insurance not paying for the procedure. There is also a strict fasting preparation,proper tracer and high end Imaging needed.

I had a large "golf ball size tumor " on my left lung that was not seen with a conventional Xray ,
CT with contrast or MRI contrast.

The CT scan with contrast displayed a 3mm x 6mm small lesion. Because of my Sarcoidosis history , the pulmonary physician prescribed a pet/ct scan at a nearby imaging center that just installed the newest and best CT scanner in the area.
I had to wait 2 weeks for an appointment. The diagnosis was a large orange image tumor on my left upper lobe. The radiologists told me I had a 95% chance of lung cancer and needed an immediate biopsy . They could not perform a biopsy for 4 weeks.

Worrying that I had lung cancer I called the Moffitt Cancer Center in Tampa Fl. I had a major lung wedge resection operation in one week. In the recovery room the Pulmonary Surgeon told me I had sarcoidosis not cancer on my right lung and a large fungal ball on the left side that he carefully removed.
The fungus was Aspergillus and anti fungal therapy was the first treatment needed. Pfizer Pharmaceutical at Moffitt Cancer Center provided at no cost Vfend their name brand anti fungal tablets.

Next step was to find a Sarcoidosis Center of Excellence and I chose Mayo Clinic Jacksonville. I currently have a team of Sarcoidosis specialist. They performed a full body pet/ct scan finding Cardiac Sarcoidosis ,Pulmonary Sarcoid , upper GI stomach Sarcoid . They also diagnosed a Right Bundle Branch Block and irregular heart beat. Installed a loop recorder. Main sympton is still syncopy. My Treatment is ongoing at Mayo. We have made the long ride 4 times this year.

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@capitalasper, I see that you've received some helpful posts from fellow members. I also noticed that medical issues can be additionally challenging with autism and the effort of masking. It's so exhausting. I wanted to let you know about a group here on Mayo Clinic Connect with members who understand about masking, like @auntieoakley @mamacita and @gingerw to name a few.

See here:
- Autism (ASD) https://connect.mayoclinic.org/group/autism/

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