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    • #14674
      Brittany Foster
      Keymaster

      My body has always been sensitive to changes in blood pressure. When I was a teenager I was diagnosed with orthostatic hypotension and my blood pressure would drop significantly when changing position from laying to sitting or sitting to standing. I would get very dizzy easily and even feel as if I was about to pass out.

      One of the symptoms I still manage every day is changes in blood pressure. I have a cuff at home and monitor myself through the day, especially on days where I am feeling more light headed than usual. I notice that in the morning my blood pressure is very low, then it will get to 130/80 within an hour. After taking a beta blocker for my heart, it drops it to 110/60 and sometimes a little lower. I can sense when my pressures are fluctuating and sometimes will feel throbbing in my head when it gets too high or develop a migraine from the highs and lows.

      Do you experience these fluctuations? What symptoms do you have from blood pressure changes? How do you manage this?

    • #14693
      Connie
      Participant

      Daily issues with orthostatic. Barely able to get from chair to bathroom!.

      • #14697
        Brittany Foster
        Keymaster

        Hi Connie,
        I have days when I am still like that. I have to make sure to go slowly when changing positions or I will actually fall or lose my balance. Do you have any modifications that work when you are changing position or things that help you with this? It can be dangerous to lose our balance, especially if it has ever resulted in injuries !

    • #14737
      Jimi Mcintosh
      Participant

      High or low blood pressure is a silent
      Disease, until you suffer with it. I had a Cardiologist day tha I should not be able to feel the fluctuations. It is a real thing, like getting used to new glasses. Get up slowly, avoid sudden changes, even to crossing your legs. Adcirca frequently changed my blood pressure and caused fainting like spells. Be extremely careful
      With “nitro” pills they intensify the changes in pressure

      • #14739
        Brittany Foster
        Keymaster

        You’re right Jimi,
        Any medication that has an effect on the blood vessels, especially dilation of ghe vessels can cause the blood pressure to become low and even lower than what we may be use to. Doing things like making sure we aren’t crossing our legs, even doing some exercise to help with over all circulation might be good. Squeezing of the muscles in the legs and doing some leg exercises that focus on strengthening and tightening can also prevent blood pooling or at least help with it!

    • #14744
      Jen Cueva
      Keymaster

      Great topic !
      I’ve always ran low as far as my blood pressure. Now,with all of my diuretics and PH meds , mine typical runs 90/60 , which is my norm. Often, I do feel extremely light headed and dizzy , I am extremely cautious changing positions as I often have to hang my legs over the bed first, dangle my feet a little as I get up slowly. Now, it seems, it’s just a part of my life. Some days aren’t as bad as others .

      I know several times in the hospital, they would not give me my pain meds and/ or anxiety meds as they thought my BP was already too low and those meds often lower the BP as well. They have also came in as I was sleeping waking me up as my BP dropped extremely low and had me wake up and move around some to get it up some. It’s natural that our BP lowers at rest , so I always reminding them I was fine, just sleeping.

      I haven’t really had issues with it running high .

      • #14755
        Brittany Foster
        Keymaster

        Hi Jen,
        I have always had low blood pressure too. Actually, right before diagnosis I was experiencing high blood pressure for the first time in my life. I can say from my own experience that based off symptoms, the low blood pressure dizziness was easier for me to deal with than the high blood pressure whole body pulsing, and migraine inducing symptoms. It was terrible. If our baseline BP is lower we definitely have to monitor how we feel when we are given medications like lasix or heart meds that can lower it even more.

    • #14761
      Jen Cueva
      Keymaster

      Ohh Brittany, I’m sure the symptoms are worse as the blood pressure rises as far as the pulsing and horrible headaches. My hubby is on the higher side , and I have to watch his diet and meds to help him.

      Definitely have to watch so many meds when our baseline start slow, or even for those with high baseline BP…

    • #14764
      Brittany Foster
      Keymaster

      For sure ! It just makes it complicated when the meds we take to “help” can add to other conditions we have or symptoms we have because of those conditions. It’s always a game of outweighing the consequence lol!

    • #14767
      Jen Cueva
      Keymaster

      Most definitely…
      The fluid game is definitely a balancing act…even after all these years…

      • #14769
        Brittany Foster
        Keymaster

        I can so relate to that! My doctors have even once suggested raising my sodium intake to helo stabilize my blood pressure. I’m like “dude, I eat half a pickle and my fingers look like sausages” hahahaha

    • #14771
      Jen Cueva
      Keymaster

      Lol that’s crazy as some days I’m like that , but I actually have low sodium ( not the usual for us ) , but only have had it or known for the last 3 years or so. That’s a whole different post, lol 😂

      It’s insane the complications one thing can cause and start a domino effect…before you know it …

      • #14773
        Brittany Foster
        Keymaster

        I totally relate to everything you’re saying !!! It’s like “okay body, enough is enough. I don’t need any more crap!”

    • #14774
      Jen Cueva
      Keymaster

      Exactly, you get it!
      I know ….🤗

    • #14777
      VK
      Participant

      I notice that in the morning my blood pressure is very low, then it will get to 130/80 within an hour.

      I think PHers tend to have unstable blood pressure, not sure. Mine is 110/70 (or lower) during absolute silent rest. Then even if I talk for a few minutes it goes to 140/90 or even higher. Someone once told me it’s my body getting desperate to oxygenate the brain.

      • #14781
        Brittany Foster
        Keymaster

        VK,
        That makes sense that more PHers would have this as a symptom. Are body can become strained even doing the simplest of tasks ! People’s blood pressures generally are supposed to increase with exercise. Lots of daily activity for us would be equivalent to other’s exercise!

    • #14784
      Vanessa Vaile
      Participant

      Glad to see this thread since I’d been worrying/wondering about the fluctuation. I started out on PH meds (1/2 dose of Adcirca and Latairis, plus 2 different diuretics) October 30th. Part of my new routine is taking and making note of morning BP and weight, and checking in with PH team as part of monitoring from a distance. Until now my only BP readings have been when someone else takes them — doctor’s appointment,even eye exam or dental work.

      My readings have been all over the map, mostly running high but coming down somewhat on retake. I’m somewhat relieved to learn this comes with the PH territory.

      I suspect morning oxygen levels may be a giveaway — when low than normal my BP will be higher and vice versa. I haven’t been taking them before BP but will start. I also think I should take BP another time or so during the day to establish baseline (or normal for me range).

      • #14797
        Brittany Foster
        Keymaster

        Hi Vanessa,
        I know that many of the PH medications may lower your blood pressure. Maybe ask your doctor when they would want you to monitor it. Might be a good idea to even do a “before medication” blood pressure along with documenting how you’re feeling and maybe a few hours after taking your medications to get a reading when the meds have kicked in as well as a brief description on how you’re feeling so you can see differences (hopefully for the better!) .

    • #14798
      Jen Cueva
      Keymaster

      Vanessa, Brittany had a Great suggestion! I ageee , definitely try and check your BP and symptoms at different times and document. I hope that with the meds you get some improvements.

      When I first got sick, I had 2 journals I kept for daily symptoms as they were testing and trying to find the issues. I also was able to turn that in with the disability paperwork and my case manager said that was a huge part of my approval.

      I documented my BP and heart rate as how even daily care affected . I know even still, just showering and getting dressed raises my heart rate up quite a bit, as I’m sure it does for most of us. Back then, I could barely get from my couch to my bathroom, a few steps away without feeling faint and extremely short of breath. I think keeping some type of daily log at first as well as if and when there is something you feel different so your ductirs can read it as you will most often forget most of the things when you are actually at an appointment.

      • #14799
        Brittany Foster
        Keymaster

        Great points Jen!
        I’m glad that they even looked at your journals for your disability evaluation. Also, it definitely helps to have things written out to look back on and even to bring with you during appointments. I know that when I’m in the appointment I act all cool and collected but on the inside I’m so awkward that I’d forget my own name hahahaha!!!

    • #14805
      Vanessa Vaile
      Participant

      It’s not a matter of “asking” when to take BP– I was instructed to record (near waking) morning BP and weight. When it seems significantly higher than I would Before this I’d been tracking oxi % and bpm fluctuations on my own to get a better sense and quantitative measure of the effects of exertion. I also correlated numbers with how I felt (call it meatball biofeedback training)

      SOP in livestock management to measure anything 3x a day at the same time of the day to determine baseline and daily fluctuation. I’d say that would apply to bipedal mammals.

      Oxygen people called this evening — setting me up tomorrow. No information about what kind of set up or equipment. I’ll see what comes and take it from there. Expect more questions.

      • #14806
        Vanessa Vaile
        Participant

        *When it seems significantly higher than I would…expect, I take it again and record both

      • #14817
        Brittany Foster
        Keymaster

        Hi Vanessa,
        I see what you mean now. It is best to do what works for YOU. Everyone is different and recording your measurements is a good idea for sure. I’m glad you are so on top of your health. That’s such an important way to take some control back ! I know what it was like to get the oxygen for the first time. Let me know if you ever need to chat. If you can, I would ask for a charging unit at home so that you can charge the oxygen tanks on your own especially if you are mobile and wanting to get out of the house.

    • #14825
      Vanessa Vaile
      Participant

      Thanks, Brittany, let me take some getting used time and I’ll take you up on the chat. I was wondering about the charging units. The order would have come from my primary, who might have to be convinced. I’m sure my PH doc would favor anything contributing to an increased activity level.

      I’m not mobile in the sense of wheels at my disposal but have hopes of getting my walking distances back up to useful. The town is small, the terrain flat, walkable for many errands.

      • #14828
        Brittany Foster
        Keymaster

        Vanessa,
        That’s good that your small town seems pretty handicap friendly especially with the flat roads! Maybe using a larger tank and pulling it (the oxygen company will usually provide you will something to pull the larger tanks in) might be best for you because you won’t have to worry about it running out too quickly! Always here when you’re ready to talk or need to vent to someone.

    • #14830
      Jen Cueva
      Keymaster

      Vanessa,
      Sorry we read your previous post incorrect. It sounds like you are doing good at paying attention to your “ new normal “.

      As far as the oxygen,Brittany made a great suggestion to see if they will let you use the home fill system. If you get stronger and walk about in your small town ( I think that would be awesome ) , maybe they can get you a conserving device and a backpack to carry the bottles, it would depend on the flow rate as far as how long it would last. I do think a few larger tanks to tug around my be a good idea as well. Hope the oxygen will help your breathing .

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