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!!
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
blood pressure readings
- Thread starter sleepy237
- Start date
glenp
"and this too shall pass"
- Messages
- 776
- Location
- 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
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
Sushi
Moderation Resource Albuquerque
- Messages
- 19,946
- Location
- 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
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
Sallysblooms
P.O.T.S. now SO MUCH BETTER!
- Messages
- 1,768
- Location
- 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.
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.