1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

blood pressure readings

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by sleepy237, Oct 1, 2010.

  1. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    12
    Hell
    So either I have OI or NMH who knows they wont test give me tilt over here ....they tell me that my dysautomomia/cfs/fibro is all caused by ptsd anyway i found out my bp drops froma healthy 120/75 to 60/40 on standing up. Is this a normal reading for cfs and apart from support stockings water and salt is there anything else i can use to improve it because they said that as its normal at rest medication wouldnt be a possibility. I HATE THIS DISEASE AND WHAT IT DOES TO US. there doesnt seem to be one symptom that i havent had apart from a high temperature God bless us all!!
  2. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    Cort had Dr Rowe's webinaire posted - you can view it here

    http://www.youtube.com/watch?v=5iF30TVLaRE

    The written material is here

    http://www.youtube.com/watch?v=5iF30TVLaRE

    As is written there - diet is very important - it is hard figuring out the delayed food or other chemical hypersensitivities

    I also find a vasoconstrictor drug, (as Dr. Rowe mentions) to help me. I take it first thing in the morning and if i go back to bed for an hour or so and sit upright, I have a better time with the rest of the day

    I havent had a tilt table test - I had the "poor mans test" which was sufficient to diagnose that I have problems with dysautonomia

    There is a thread on dysautonomia here

    http://www.forums.aboutmecfs.org/showthread.php?4147-Dysautonomia
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,455
    Likes:
    5,222
    Albuquerque
    Hi Sleepy,

    Your BP reading isn't so unusual for ME/CFSers--but of course it is very abnormal. I got really abnormal readings on my tilt test and the longer they kept me standing the weirder they became with the diastolic rising and the systolic going down. I think these days I drop about 30 points systolic on standing for 5 minutes.

    OI is kind of my barometer for how I am doing--bad day=lots of OI. Good day, not such bad OI.

    I do use some great Italian cotton support knee socks from BrightLifeDirect.com. They are the house brand--Allegro and are called Samba. I found I needed to order one size larger than their size charts. They help enormously. I like them better than support stockings--more comfortable. Also use an abdominal binder on bad days.

    What has helped my most is any vasoconstrictor as GlenP mentioned. I have tried a number of drugs, and as for drugs, the ones that increased norepinephrine worked really well. Caffeine also helps me but not everyone. I am not taking the drugs anymore but day to day rely on the compression socks and caffeine.

    And, forgot to mention, hydration. In really bad times a couple of bags of IV saline works wonders. Or, if you can't get that, a whole liter of Pedialite (in the States--it is an electrolite drink for kids with dehydration) is a decent substitute.

    Sushi
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    327
    Southern USA
    Dysautonomia or OI, POTS etc do not always happen with CFS. They happen from illness, stress, car accidents and many reasons. I have POTS but my bp doesn't go down very far, mine goes up, it varies. I have been diagnosed with POTS. It is being treated by a integrative doctor with supplements.

    I hope you can find a good doctor to help you with medicine and supplements. If the bp goes way down, salt helps a lot of people. I drink at least 2 liters of water daily. It is very important for blood volume.

    Keep your calves strong to pump the blood up. I do a few calf raises. I also keep my core strong. Strong muscles help. You do not have to work out, just do a few careful exercises. I do mine when my hubby is home in case I feel bad.

    Keeping your head up while sleeping just a bit is good also. When you wake up, move around and sit up. Wait a little bit. DRINK water.... Then get up.

See more popular forum discussions.

Share This Page