Might go to Dr. Klimas' office

[maddietod]

Well, I've discovered one thing wrong with me. Dr. Rey asked me to take my blood pressure 3x a day until our phone consult in 6 weeks. My readings are so all over the place that I emailed her that I'm on my 3rd meter and am giving up on them.

She just called and said the meter is fine............ it's me. All I'm to worry about ATM is keeping systolic above 100.

If anybody has experience with this, I would love to hear your stories.

 

[Sallysblooms]

When my Dysautonomia/POTS started three years ago, my BP went and stayed high, especially when standing, (or trying to stand.) I had to take Benicar for bp and that barely got it low enough.

Now after getting so much better, my bp is normal and sometimes low. I take either none of the bp med. or 1/2 a pill. My bp sometimes goes low, but it is up and down. The autonomic nervous system, Symp. and parasympathetic nervous system do not always work correctly and it can go up and down.

 

[SOC]

Well, I've discovered one thing wrong with me. Dr. Rey asked me to take my blood pressure 3x a day until our phone consult in 6 weeks. My readings are so all over the place that I emailed her that I'm on my 3rd meter and am giving up on them.

She just called and said the meter is fine............ it's me. All I'm to worry about ATM is keeping systolic above 100.

If anybody has experience with this, I would love to hear your stories.

Mine looks all over the place, but some if it is related to how long I've been sitting before I take my BP. If I've been standing or walking in the previous 5-10 mins, my BP and HR will be high, but if I've been sitting for 10 mins or more, my BP is okay (125/85).

The longer I stand, the higher everything gets. Over 30 mins, my SYS increases by 33, my DIA by 17 (not bad) and my HR by 30 BPM. This is while I'm on a calcium channel blocker, btw.

Do other people's BP and HR keep climbing with continued standing? I haven't tested mine past 30 mins because I feel awful enough after 30 mins -- sweating, shaking, painfully tight leg muscles that I can't relax. I don't have sudden increases, though, so a 5 or 10 min test wouldn't show any problems. I had a TTT 4-5 years ago that came back normal, but I don't think the test lasted very long.

 

[maddietod]

Because I thought the meter was crazy, I was taking 3 readings immediately one after the other. Right before emailing Dr. Rey, I took 3 after I'd been sitting on the couch for a half hour.....I had the meter right there. My systolic readings were 177, 148, and 104. All in a minute or so.

I think the high readings were because I'm now terrified of the meter, but still..........I didn't know this was possible.

SOC, I don't particularly have issues from being up and about.

 

[Sushi]

Because I thought the meter was crazy, I was taking 3 readings immediately one after the other. Right before emailing Dr. Rey, I took 3 after I'd been sitting on the couch for a half hour.....I had the meter right there. My systolic readings were 177, 148, and 104. All in a minute or so.

I think the high readings were because I'm now terrified of the meter, but still..........I didn't know this was possible.

SOC, I don't particularly have issues from being up and about.

Madie,

Is your meter one of those that blow up the cuff automatically? Or one that you pump up manually?

My doc advised me to get one that I pump up manually but has a digital read. The ones that do the automatic pump up can up the "scare factor" as it is like having a python with its own agenda, wrapped around your arm! And, if you tend to have low blood pressure, their automatic "sqeeze" level tends to be too high--I hate them!

Sounds like you might have the "white coat syndrome" morphed into the "bloody little BP machine" syndrome.

Also, are you keeping the arm that you are testing at heart level? this can make a difference in readings. You don't want to hold it at that level with your own muscles, but to prop it at that level.

Sushi

 

[maddietod]

Madie,

Is your meter one of those that blow up the cuff automatically? Or one that you pump up manually?

My doc advised me to get one that I pump up manually but has a digital read. The ones that do the automatic pump up can up the "scare factor" as it is like having a python with its own agenda, wrapped around your arm! And, if you tend to have low blood pressure, their automatic "sqeeze" level tends to be too high--I hate them!

Sounds like you might have the "white coat syndrome" morphed into the "bloody little BP machine" syndrome.

Also, are you keeping the arm that you are testing at heart level? this can make a difference in readings. You don't want to hold it at that level with your own muscles, but to prop it at that level.

Sushi

Good call - the crazy-high readings were probably because I had my arm hanging down while on the couch - all my other ones had been taken sitting at a desk (arm resting properly). [Although at the doctor's office, they always test it with my arm down - and sometimes they use my right arm.] The variation was still terrifying for somebody who expected a 10% variation, max, but it wasn't in "shouldn't I be at the hospital?" levels.

I'll take a look at the manual pump ones. I like the simplicity of the automatic cuff, but you're right, there is that startle when it starts up.

Actually, no I never test with my arm at heart level. That's very high......again, doctors never hold my arm up.

 

[richvank]

Hi, Madie.

Another issue with the automatic blood pressure devices is that the device inside the cuff that is monitoring the flow in the artery is not always oriented right over the artery, and that can change the readings. I usually end up with lower readings when a nurse or doctor uses a stethoscope to monitor the blood flow and reads the pressure gauge to get the pressures.

Best regards,

Rich

 

[maddietod]

Thanks, Rich. I'll be careful about the placement of that bump inside the cuff.

 

[SOC]

Thanks, folks. The variation in my BP, other than the increase with standing, is probably due largely to the inaccuracies in my automatic BP machine and my use of it. I'm going to try even harder to reduce some of those errors and see what I get.

 

[Valentijn]

Also, a scooter requires me to sit very straight upright or even leaning forward to steer with a handlebar. I find I have a lot more time out and about (because of lower energy expenditure) with a power chair than a scooter.

It depends on the scooter. Mine has good arm-rests, and the steering column is adjustable, so it can basically be sitting in my lap when needed. But it can't go in smaller shops.

I think scooters typically go quite a bit faster, especially the ones that can't be broken down and folded away for transport. My transportable scooter can go 8km/h (5mph), whereas a mobility chair will be slower. Some scooters go up to 20km/h (12.4mph).

Slow scooters, even if they can be broken down for transport, are generally quite a bit cheaper than either fast scooters or power chairs.

 

[November Girl]

SOC

OK, you've got me thinking now! The power chair I just looked at does look comfortable. It would be much better for prolonged use, and when I'm feeling pretty weak to begin with. The only drawback I see is transporting it, either in the car or on an airplane. One of the best features of the Luggie scooter is that it folds up quite easily for transport.

@ Valentijn

Would you mind telling me what kind of scooter you have?

 

[SOC]

SOC

OK, you've got me thinking now! The power chair I just looked at does look comfortable. It would be much better for prolonged use, and when I'm feeling pretty weak to begin with. The only drawback I see is transporting it, either in the car or on an airplane. One of the best features of the Luggie scooter is that it folds up quite easily for transport.

@ Valentijn

Would you mind telling me what kind of scooter you have?

FWIW, there are chairs that dismantle easily into small parts for putting in the trunk of a car. I don't know how they go by air, though. I've rented chairs on location when I travel, but I haven't purchased one for myself since I don't need it indoors and lifting any scooter/chair, even in small parts, into my van is too much work.

Valentijn makes some good points about speed and price. It's definitely worth trying both out to see which you like better. Renting for a week might be the best way to get a sense of which would work better for you.

 

[Valentijn]

SOC

OK, you've got me thinking now! The power chair I just looked at does look comfortable. It would be much better for prolonged use, and when I'm feeling pretty weak to begin with. The only drawback I see is transporting it, either in the car or on an airplane. One of the best features of the Luggie scooter is that it folds up quite easily for transport.

@ Valentijn

Would you mind telling me what kind of scooter you have?

I have a Shoprider GK10 - there's a video of the same model at

. It's a bit bigger and heavier than some of the other ones that break down, but, well, so am I I wouldn't be able to get it into the car myself without inducing PEM - it is fairly heavy, and there are lighter ones available. I don't know if any of the power chairs break down for transport? It'll fit into the back of our little hatchback, if we put the back seats down. We had to rent a station wagon for a European road trip with my parents, to fit all four of us, the scooter, and backpacks (suitcases wouldn't fit).

Another advantage to a scooter is that it can handle more rugged terrain. Gravel, dirt, grass, small-to-medium curbs, etc, are no problem, and I even took it up a straw-covered path through fairly steep sand dunes. The impression I get from power chairs is that they need proper ramps, so it would be good to make sure that the area where you'd be using it is really accessible. Things like cobble stones, which aren't much fun even with decent tires, might be a nightmare if the power chair has a set of tiny uninflatable wheels.

Also consider the indoor/outdoor implications - dirty wheels rolling over who-knows-what. My scooter happily stays in the shed when not used Though I do take it inside hotel rooms and such to park it.

But power chairs are probably easier to get into elevators. I haven't found one my scooter won't fit into (at hotels, Ikea, etc), but sometimes it's a tight fit and I'm hogging the whole lift with my scooter. And maneuvering into and out of lifts can be a pain ... they'll have a good sized elevator with a wide hallway in front of it, and some moron has to put a huge piece of furniture right across from the elevator to fill up the empty space!

I also find it very comfortable. Well-padded seat (which makes it heavy), arm rests, and everything is adjustable. Most of all, it lets me get out and "walk" around the neighborhood. I'm still grinning like an idiot every time I go out, and I do it about once a week now. I thought I'd get over that side-effect by now, but I'm starting to think it's permanent :-D

 

[Sallysblooms]

I have a Pride Traveler GoGo Elite. I only need it for large stores now. It is really nice, very comfy. Very fast, I just love it. It is fun to ride on. This one is very easy to get in all of the small isles in a store since it has three wheels. Elevators are easy also.

 

[Marg]

Because I thought the meter was crazy, I was taking 3 readings immediately one after the other. Right before emailing Dr. Rey, I took 3 after I'd been sitting on the couch for a half hour.....I had the meter right there. My systolic readings were 177, 148, and 104. All in a minute or so.

I think the high readings were because I'm now terrified of the meter, but still..........I didn't know this was possible.

SOC, I don't particularly have issues from being up and about.

 

[Marg]

I am always high in any doctor's office. Dr. Klimas declared white coat. My bp log before going is always very good. It has been very good but I have not been in a doctor's office except to get a B injection. I can feel it when it is high, feel hyper and nervous. Dr. K has suggested Buteyko breathing. I have tried a lot of breathing this, is a little different. Breath slowly in and long out then hold for 5 seconds for a while try to do 10 in time and some go as high as 40. You hold it until you feel a slight air hunger then breath again. I am up to 7 secomds no. I tried w 10 but it was uncomfortable. it is jsut when you begin to feel like you need a breath. There are some videos on You Tube. I also got a book and CD on Amazon. It gets rid of carbon dioxide. It also made me aware of mouth breathing when dong something a little strenous.

 

[Marg]

Madie,

Is your meter one of those that blow up the cuff automatically? Or one that you pump up manually?

My doc advised me to get one that I pump up manually but has a digital read. The ones that do the automatic pump up can up the "scare factor" as it is like having a python with its own agenda, wrapped around your arm! And, if you tend to have low blood pressure, their automatic "sqeeze" level tends to be too high--I hate them!

Sounds like you might have the "white coat syndrome" morphed into the "bloody little BP machine" syndrome.

Also, are you keeping the arm that you are testing at heart level? this can make a difference in readings. You don't want to hold it at that level with your own muscles, but to prop it at that level.

Sushi

I think that is what happend to me. Once I had a high reading I was always afraid of getting it again and I wanted to RUN away.

 

[Marg]

There are some many things going wrong in cfs/me and also each patient has different things going wrong. We have to slowly treat each abnormality the best we can, some treatments wont show any obvious effects until other dysfunctions are treated. some treatments we can tolerate until something else is sorted. It is a jigsaw puzzle and u have to put the right pieces in at the right time i think.

One example i had was that i tried valcyte and kept getting incredibly worse and had to stop. I tried it a few times with no success. At the time i had ongoing sinus problems and i was also trying to sort out my adrenals by juggling different hormone(pregnenolone/dhea) which took me time to get it right. Eventually after being on antibiotics for awhile(ended up being 6 months) my sinuses started to improve. Adrenals, i ended up just sticking with a low dose of dhea capsulse(did try creams but too strong) and slowly increased it to 25mg a day, testing showed it was in the mid range at this dosage. I dont know if it was coincidence or not but i think not, but once these were sorted i tried valcyte again and this time had no issues with it and i started to improve. So i got lucky and put the right pieces of the jigsaw puzzle in at the right time. I still have a couple pieces missing but slowly getting there.

cheers!!!

Heaps,
The book I have about Butekyo " Close your Mouth" also states that it will stop asthma, hayfever and nasal congestion permanently. It is free give it a try, 20 minutes 4 times a day but I do 2 20 minutes. I just cannot do 20 times so far anyway get too bored. I have not lost myself in it yet. A CFS doc once told me the ones that find breathing hard are the ones that need it the most. He had me hooked up to a machine while I did his brand of breathing. He called it auto regulation. It was in a class and I did not do well, he said my chemistry was like the 4th of July. Some of them lowered their heart rate and bp the first time. I have tried Cheney's and Weis, this one is different and seems easier so far. We will see!

 

[Marg]

Im on the NK cell diet and dint even know it,lol

Me too!

 

[SOC]

Im on the NK cell diet and dint even know it,lol

Me, too. Maybe that's why my NK cell number and function were normal.