Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Sign in to follow this  
Weary

Huge bp fluctuation

Recommended Posts

So today at rheum office, bp was 175/106. Wasnt surprised since am in attack mode. Its been higher. I brought my own bp machine with me and got 175/105. That was at 10:30 am. Am lying down now and its 3:45 pm. This is usually the tine of my lowest bp daily (bucking the usual circadian trend) just took bp and its 113/75 Headache! Often get that when my bp falls. Sure seems like screwey autonomic stuff  

Highlight of my visit today: doctor said he thinks i may well actualky be a zebra. No kidding

Lowlight of day: came home to find my other rheum who oromised me a hard won sub q IG is trying to dump ne as a patient.  

 

 

 

 

luwlight 

Share this post


Link to post
Share on other sites

Yikes, that’s technically hypertensive crisis territory.  Mine has been higher too but it’s still scary and I feel dreadful during it.  Do you have hyper pots?  I do and take clonidine before anything “stressful”.  For BP like that I pop my dose and half an hour later it goes down.  I do have to increase fluids though because it can fall too far.  I usually am toast for that day.

 I am so sorry about the rheumy who was working on SCIG is dumping you.  How terrible.  Have you actually started it yet?  Will the zebra one order it?  We are zebras so at least hey’s acknowledging that you are rare and special (arenywe all?).

Share this post


Link to post
Share on other sites

The zebra one doesnt like ordering anything hes not had  experience with  He tbought was worth trying (his son takes it for primary immunodeficiency) but thats when he thought other doc had ordered it. Havent started yet. When i inquired to fibd out if insurance approved it yet is when he is dumping me 

tell me more about the clonidine- especialky the rebound part. So my concern is when it wears off, my bp will skyrocjet to unchartered territory. 

I know i get to hypertebsive crisis periodicalky  my highest gas been 220/110 

Yes feel awful  revved up  hard to talk and breath at same time  dizzy  

Have been in ER during one but was useless i wanted to be admitted but they refused  but yeah the docs and nurses freak out when they see values like that  doc tiday was concerned one of tbese spikes will give me a stroke  

dont k ow if have hyperwndrenergic pots since have not had the formal testing  somet things fit, some dont 

Have you had blood metenephrines checked and if yes what were results? 

Yes for sone reason this rheum today took it all seriously  he is asmart guy but coukd not think of a single thing i had not tbought of  he tried so hard   The nurse intereupted and asked him when hed be going to the patient waiting next door...

 

i have also list massive weight since last visit  13 lbs less than last visit may 2017 which is very big for ne since i do t weigh much  many foods trigger attacks

 

 

tes

 

Share this post


Link to post
Share on other sites

My hubby recently had an attack with high BP. He was 190/116 with chest pains. If his aspirin hadn't brought it down before I could get him away from work he would have been at the ER. PLEASE!!! Be careful with such high BP. 180/120 is potential stroke zone. I hope your symptoms calm down soon. It is scary when those numbers get up there. Good luck!!

Share this post


Link to post
Share on other sites

My BP goes to 170/120, 180/130 without meds. That is standing. But 116/76 when sitting. It just zaps up and back down like a car accelerating lol. Now with meds it is pretty evened out until the end of the day when it will spike to 130/98 when standing. Crazy how this all works. This is what was happening to me for years and to the point where I could not even stand in line to renew my drivers license. I finally had an ER doc witness what happened and he was tripped out. I had a BP of 170/120 standing and then 116/76 while laying in the hospital bed for 3 hours. Then when I stood back up, BP went back high. He didn't know what to do with me. He said to get a job where I do not stand up lol.

Share this post


Link to post
Share on other sites

I also get times when my BP goes sky high even with all of my meds. I always know because I get chest pain radiating up mu neck. Eventually the high BP causes seizures and if it drops I keep passing out. If I can't get it down with rest then off to hospital for fluids it is. They immediately bring the BP down, the CP is gone and I am able to walk without passing out or the BP spiking again. Last time the high BP came back after 2 days and they had to increase my calcium channel blocker. Have been super since then ( and hope it lasts until I get my house clean! ). @Weary - these BP's need to be controlled with proper meds and since you have them documented any one that does not suggest meds to lower them is neglectful. 

Share this post


Link to post
Share on other sites
16 hours ago, Weary said:

The zebra one doesnt like ordering anything hes not had  experience with  He tbought was worth trying (his son takes it for primary immunodeficiency) but thats when he thought other doc had ordered it. Havent started yet. When i inquired to fibd out if insurance approved it yet is when he is dumping me 

tell me more about the clonidine- especialky the rebound part. So my concern is when it wears off, my bp will skyrocjet to unchartered territory. 

I know i get to hypertebsive crisis periodicalky  my highest gas been 220/110 

Yes feel awful  revved up  hard to talk and breath at same time  dizzy  

Have been in ER during one but was useless i wanted to be admitted but they refused  but yeah the docs and nurses freak out when they see values like that  doc tiday was concerned one of tbese spikes will give me a stroke  

dont k ow if have hyperwndrenergic pots since have not had the formal testing  somet things fit, some dont 

Have you had blood metenephrines checked and if yes what were results? 

Yes for sone reason this rheum today took it all seriously  he is asmart guy but coukd not think of a single thing i had not tbought of  he tried so hard   The nurse intereupted and asked him when hed be going to the patient waiting next door...

 

i have also list massive weight since last visit  13 lbs less than last visit may 2017 which is very big for ne since i do t weigh much  many foods trigger attacks

 

 

tes

 

My experience with high blood pressure is I had two mini strokes because of it! Please take it seriously, go to the er to get help. Mini tropes are nothing to play around with. The drs there put me on lisinipril, amopoline, and Clonidine 0.1 mg. I stayed on acebutolol2 x’s a day the

Share this post


Link to post
Share on other sites

Hi Weary, how rude of that nurse to say that! You know I had 2mini strokes because of blood pressure. That was no fun. Clonidine did work for me in that it does bring blood pressure down fast and calms you down. Why don’t you try it? Your pressure is dangerously high! 

Share this post


Link to post
Share on other sites

Weary, I was tested for pheo which I think metenephrines test for?  I don’t have a pheo.  I have high norepinephrine based on blood test.  I was tested for every possible cause when I was diagnosed 3 years ago.  Have you seen an autonomic specialist?  I was put on clonidine at the time I was diagnosed.   I haven’t experienced much of the rebound hypertension from it but I typically manage that with extra beta blockers and limiting fluid intake.  I found the first info referenced here https://www.healthrising.org/blog/2018/07/27/dysautonomia-international-conference-pt-iv-the-autoimmunity-revolution-in-pots/ about autoimmune cause (I have the first antibody mentioned along with MCTD) and baroreflex sensitivity very helpful for my case.  My BP jumps 30-50 after drinking 16oz water in about 15 minutes hence the info on baroreflex sensitivity is helpful.  I found that when I take clonidine three times a day I need to compensate for the orthostatic drops in causes me by drinking more water which resulted in low sodium.  I am home bound so I can mostly manage stress.  Taking it three times a day wasn’t necessary for days I am not doing anything which the vast majority of time.  I can’t do more than 1 Dr or PT visit a week.  Clonidine works better when I take it as needed for any stressful events, even talking on the phone.  My BP has been better taking it as needed and being very careful with fluids. I avoid ERs but that’s me.  I did get into the cardiologist in a couple days after it started going crazy high.

my  neuro autonomic Dr has convinced my rheumatologist that SCIG is worth trying.  The neuro is now working on insurance approval.  

Share this post


Link to post
Share on other sites

@blizzard

sOmething  similar seems to be happening to me. I tested mine standing today

about noon , standing,  143/92 with heart rate 93. 

5 minutes later i lied down, waited 3 minutes and:

approx 12:07 pm. 131/86. Heartrate 74

waited about 18 minutes (should have done it sooner )

Anout 12:25 pm. 129/79 and heart rate 72pm

 so e of it nay be from de reased activity, but still- i cant do anything or it goes up   Guess thats not too bog a drop but i bet if i keep lying down it will go down further  

i think my sitting is in between and closer to standing. but will test  

when docs offices test sitting and standing they do it too fast  less than one minute delay 

a downer i guess- i really hadnt realized that my low readinga were not time of day or even general relaxing but are i tbinkspecifically lying down  rats  

Im not really sure now how to treat a high blood pressure that is so radically different standing and supine. How do u treat yours? If it brings ot down while standing, does yours then get too low when sitting?  

 I had a similar experience to you in the ER except with heart rate rather than blood pressure this was back when I was very anemic for unrelated reasons so my blood pressure seemed  to be fine. But what would happen is my heart would stabilize when I was lying down. It would go down to 100 or sometimes in the 90s then the moment I got up to use the bathroom for example my heart rate soar to 146. they quickly made me go back  to bed. they ran for the portable EKG machine and hook me up to it again. At this point of course I was lying back down. By the time they got the EKG machine about two or three minutes had already passed. They kept telling me to lie still. I kept telling them that if I lievery still my heart rate got to go back down to normal again. I at least tried to get them to do it while sitting up but they refused   well they got on the EKG was maybe a slight tachycardia but pretty much normal. It was pretty frustrating and they just eventually gave up trying  

It is hard being a zebra in an er full of horses.  

 

 

 

 

 

Share this post


Link to post
Share on other sites

I use clonidine. I have adjusted to 1. mg a day now and then 10 mgs of Lisinopril and that evens my BP out. The only reason why my GP caught my high BP was because one or two times they had taken my BP right away after I had just walked into the exam room and my body did not have a chance to adjust itself back down yet. That is when I started investigating all of this stuff. It really worries me, because when I was a kid they caught my BP really high, but then when they checked it a few more times it was normal. I think they caught it back then before it had a chance to normalize after sitting down too fast. Doc commented that kids do not have high BP because we have clear arteries. Maybe I had this stuff going on for years. Crazy. 

Share this post


Link to post
Share on other sites

You need to ask your doc about trying Clonidine if he feels that would help you. I am not a doctor and cannot recommend one treatment over another, it's just something you might want to look into. Be careful though if you start using it, because if you take too much, your BP can drop too low. Clonidine is not a drug to play around with. It is a very small low mg pill, but it is very, very powerful. 

Share this post


Link to post
Share on other sites
On 8/27/2018 at 3:50 PM, Weary said:

So today at rheum office, bp was 175/106. Wasnt surprised since am in attack mode. Its been higher. I brought my own bp machine with me and got 175/105. That was at 10:30 am. Am lying down now and its 3:45 pm. This is usually the tine of my lowest bp daily (bucking the usual circadian trend) just took bp and its 113/75 Headache! Often get that when my bp falls. Sure seems like screwey autonomic stuff  

Highlight of my visit today: doctor said he thinks i may well actualky be a zebra. No kidding

Lowlight of day: came home to find my other rheum who oromised me a hard won sub q IG is trying to dump ne as a patient.  

 

 

 

 

luwlight 

Weary, I am so sorry about the email you received from me that was not meant for you. I sent this to my son David last week. How it ended up going to you, I can’t figure out. Still trying to find out. I am sorry. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...