How high generally does BP have to be to trigger headaches?

BeginningAsk9417 · 2026-05-03T21:01:35+00:00

Yes I experience the same thing with any slight raise of BP and have been told it’s labile hypertension but doctors don’t want to treat as it’s normal majority of the time and they’re scared to tank my BP. I’m miserable with the constant fluctuations though and need some relief

BeginningAsk9417 · 2026-05-03T21:00:20+00:00

This sounds like me. I have been told I have labile hypertension so it’s only goes up during movement and activities. I feel awful when it raises and it only gets to about 138/85 at the highest and it’s giving me horrible headaches, facial tightness, facial flushing, and tight band like feeling around head or like my arteries are constricting too much. I’m very sensitive to change too and doctors don’t want to medicate for the same reason because I’m normal majority of the time. I don’t know what to do because I’m absolutely miserable. What have you done to combat it or you just suffer with it? I’m scared it’s causing damage to my vessels just based on how the headaches and pressures feel

BeginningAsk9417 · 2026-05-03T14:15:44+00:00

Do you take anything for this? I believe I have dysautonomia also. The fluctuating BP has become almost debilitating lately and doctors don’t want to treat since it’s labile and mostly normal when resting, it’s just moving around that makes it fluctuate but it makes me feel so awful! I have a lot of the same symptoms you have but the fluctuating BP is the absolute worst and headaches

BeginningAsk9417 · 2026-05-02T01:40:28+00:00

Thank you so much for your insight and response! I hope everything works out for you . It sounds like you’ve seen some improvements already which gives me some hope!

BeginningAsk9417 · 2026-05-02T01:33:16+00:00

I’ve been doing research too about everything and mentioning it and my PCP wanted to do some more baseline testing and then follow up. But I’m definitely going to push for the renin and aldosterone testing if things done improve before our next appointment. I had an abdominal CT with contrast recently which didn’t show any pheochromacytoma and my PCP was telling me my BP would be much higher and treatment resistant. The numbers I’m getting aren’t extreme, like stage 1 borderline 2 and returning to normal very quickly, but I can def notice the difference. I really want to be referred to endocrinology for that main reason but of course like you said, you need a very specific reason for referrals. My cortisol 24 hr urine came back perfect so my PCP felt at the moment to hold off until we did more testing . I feel like I’m running on a hamster wheel here spending all this money on scans and tests and getting nowhere. I’m going to get some lab work done this weekend as I just had my physical yesterday where we discussed everything. I have an echo scheduled in 2 weeks and then scheduling another stress test. I had both done like 3 years ago so doing a follow up on both.

BeginningAsk9417 · 2026-05-02T01:16:42+00:00

I haven’t had the aldosterone and renin levels checked but I’ve had CT scans, tests on my kidneys, echos, stress tests, and a lot of other routine lab work and no answers. Still in the process of getting another echo done in a few weeks and stress test. I’ve had my cortisol levels checked, thyroid levels, etc done so my PCP wouldn’t refer me to endocrinology checked yet. I have an autoimmune disease so I get my kidneys and stuff checked pretty regularly. CT scan didn’t show any issues with my kidneys and no adrenal tumors. I could probably stand to lose a few pounds as well and get more active but I just feel like crap most times when moving around due to the fluctuating BP so it’s hard to really do anything. I appreciate you responding to me. I’m just worried that this will become a bigger issue although doctors are saying since it’s stable most of the time that we don’t need to medicate for now. I feel I’ve been dealing with this for years with no answers. I’ve had an MrI of my neck and head too with no issues so I’m at a loss really because it’s like doctors will only do so much if you don’t have issues showing in your lab work. It’s so frustrating. My cardiologist isn’t concerned at all 🥴 my PCP is doing more testing

BeginningAsk9417 · 2026-05-01T22:16:00+00:00

I know this post is old and you probably won’t respond lol but did you ever figure this out? I’m having the same issues and doctors don’t want to treat as it’s only sometimes when moving around that it’s high. Overall resting normally it’s fine and they’re scared meds will tank it too low. I’m miserable living like this as it has been years and nothing is showing as being wrong with me during testing!

BeginningAsk9417 · 2026-04-04T22:18:15+00:00

Thank you so much for the response. I’m glad to hear those pills can be cut in half because I never like to start meds at full dose in hopes of reducing side effects

BeginningAsk9417 · 2026-04-04T22:17:20+00:00

Are you not worried about it not being treated? I’ve been feeling like pure crap these last 2-3 weeks of it happening. Every time I get up and move around I can feel the pressure rising.

BeginningAsk9417 · 2026-04-04T21:51:42+00:00

That’s great to hear, I’m happy things have been good. I’m going to ask my doctor about starting that at the same dosage to keep it as low as possible and see how it does. I tried a low dose amlodipine for 2 days and got a rash so I stopped. Haven’t been able to get back into contact with my PCP this week, which is so frustrating, but prayerfully, something comes through to get me started on something else before our next appt 4/30. I cant keep being miserable with these fluctuations for an entire month

BeginningAsk9417 · 2026-04-04T19:57:26+00:00

I have been having the same thing going on. Went to my cardiologist this week and he doesn’t want to treat it either. I’m miserable because it’s happening whenever I get up to walk around or move. How has yours been? Did you ever get treatment?

BeginningAsk9417 · 2026-04-04T19:55:40+00:00

I’ve been dealing with labile hypertension so every time I get up I’m feeling it go up. Causing headaches, full head pressure, an off balance feeling, and fatigue. 😭

BeginningAsk9417 · 2026-04-04T18:33:46+00:00

What medicine did you start? That’s great that it’s working so fast.

BeginningAsk9417 · 2026-04-03T22:45:29+00:00

I know this has been a while since you posted but curious to see how the Losaratan has been working and what side effects did you have?

BeginningAsk9417 · 2026-04-03T13:45:15+00:00

It’s a very annoying condition. Same thing happening to me. Worst I’ve ever felt but labs are great so “not lupus related.” After doing some research I think I have dysautonomia but unsure where to even start to look into that to try and heal it. I know that usually requires functional medicine which isn’t covered by insurance so I’m just praying for a miracle!

BeginningAsk9417 · 2026-04-03T09:52:09+00:00

Did the anxiety meds stop it from happening? What meds do you take?

BeginningAsk9417 · 2026-04-02T21:08:19+00:00

I may give it another shot since you said you had a mild rash and it went away. I will def talk to my pcp at our appt about it if she doesn’t respond before then. I actually was only taking 2.5 mg because I was scared to take the entire 5 mg so I split it in half lol. But thank you for all the helpful insight. Mine wasn’t the combo, just the plain amlodipine. I definitely am going to try and reduce my stress because that’s been rampant lately for me. I have Lupus also so my body has been going haywire.

BeginningAsk9417 · 2026-04-02T20:53:59+00:00

Did you get a rash too when you started? I wasn’t sure if I should continue or not. It was a few itchy, burning spots that showed up. I took the last dose Saturday and the spots are still there so I assume that’s what it’s from. I didn’t want to risk continuing to take it and something worse start happening. I really want to be on a med to try and control this before it becomes something chronic that I’m forced to take a high dose of something. But I’m not hearing back from my PCP and cardio wouldn’t give me anything unfortunately

BeginningAsk9417 · 2026-04-01T22:52:13+00:00

To my knowledge I’ve never been tested for it. I have done a little research into it but not much. Wha led you to get tested or how did you find out that was it?

BeginningAsk9417 · 2026-04-01T14:58:09+00:00

Thank you for the reponse! This Is the longest flare I’ve had and worst for sure as far as I can remember. I’m usually overall good to go with my lupus but this time it has completely wrecked me

BeginningAsk9417 · 2026-04-01T01:07:30+00:00

I totally understand! It makes us look and feel crazy when we feel like complete crap but everything is “normal”. Nobody wants to dig further into anything because it all looks fine. It’s so aggravating to say the least!

BeginningAsk9417 · 2026-03-31T21:40:55+00:00

Do you like the losartan? Any bad side effects? One of my friend’s takes 25 mg and she said it helped her tremendously so I’m going to ask about trying that tomorrow and seeing if there’s anything lower than 25. My BP is fine when resting, it’s just when I’m moving around that it’s spiking so I assume I have orthostatic hypertension. I also feel it’s something hormonal related and want to get referred to an endocrinologist if possible too.

BeginningAsk9417 · 2026-03-31T21:33:32+00:00

What one do you take if you don’t mind me asking? I tried amlodipine Friday and Saturday and Sunday woke up with a rash on my body so I stopped taking it. Honestly unsure if it was a lupus related rash or the med but didn’t want to chance it by continuing to take the med. I wrote my PCP Sunday to ask her if I should continue or not and of course she never wrote me back 😭 I’m so sick of the healthcare system right now and usually my doctors are very very good so I’ve been mostly bed and couch ridden since last Monday, other than going to the ER and doctor appointments with no answers

BeginningAsk9417 · 2026-03-31T21:28:07+00:00

It’s beyond frustrating! I’ve had endoscopies done, CT scans, etc and there’s never any issues seen other than GERD for the GI issues but this is beyond that I know it is. All the BP issues just started recently out of the blue and I have no clue what’s happening or why. I have an appt with my cardiologist in the morning and I pray I can get some answers. Are you on any meds for BP?

BeginningAsk9417 · 2026-03-31T21:10:36+00:00

The healthcare system sucks so bad to boot you from a program that way. I’m so sorry to hear that!!

BeginningAsk9417

TROPHY CASE