CLL Support Association
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Now: Super Cool Planes - Was: What about CLL and High Blood Pressure?

Now: Super Cool Planes  - Was: What about CLL and High Blood Pressure?

OK most of my life, at least since 18 I had an FAA medical every 6 months. My blood pressure even then was always sort of on the high side maybe 130/90 and even a couple times I was told to sit in a dark room for 5 minutes cause it was 140/95 ish...not what you want on an FAA medical.

Anyway I take my blood pressure couple times a week and is is usually borderline high...but not like super high.

This all seemed to change last month. At a doctor appointment last month is was like 150/100. At the nerdologist last wednessday it was screeeeeming high, like 165/110 or something nuts. Today at the doctors it was lower, about 150/100 but still scary high.

My doctor was givinf me Ritalin but I stopped taking it last month...(I didn't like how it makes me feel) and went back to 5 hour energy and caffeine....

I am pretty sure a lot of this is the 5 hour energy and caffeine...but I am stuck...I have terrible fatigue...I don't like the Ritalin....but on the Ritalin my blood pressure was like almost normal most times....

Anyway, I am at a loss...is CLL causing high blood pressure? Caffeine? The fatigue is my main concern...I could care less about CLL...but I would like some sort of decent living conditions something to combat the fatigue that does not make me feel like crap or raise my blood pressure to the point of having a stroke, heart attack and brain anurism all at the same time.

It is like I only have crappy choices in front of me

Scott USA/Maine

Worried about stoking out before CLL gets me

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FAA exams are for pilots, right? Since your b/p was 130/90 at age 18, I do not think it is the CLL. In general, I do not think CLL ever raises B/P. The stress of seeing a doc (and I do love the nerdologist!) can cause it to go up. No one has placed you on b/p meds? Can you fly, if you are on b/p meds? Yes, Ritalin really is best for the ADD brain. I have tried it but didn’t like it either. The caffeine may not be helping things but you do need some quality of life. So, I am thinking the b/p meds. I have tachycardia (fast heart beat) and I taken a heart med for 30 years. It has helped me a lot.

Spacee (Linda)

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Yes, FAA exam is for pilots....I got a commercial ticket when I was 18 but never did it for work....I don't think the FAA likes Leukemia people in the pilot's seat...I didn't actually check but I am pretty sure CLL means no medical OK...tell them you get headaches and that's it.

mine has always been on the high side of normal...but last month way way above high. Sort of scared me some...I am used to 140/90 but 160/110???? Nuts.

My doctor wants me on BP meds...I asked him to give me until Feb 11th so I can give up all the caffeine and walk some more....I don't like drugs in general....don't get me wrong I WISH I had a drug of choice...but my only drug of choice is my wife...the rest....dunno...they don't work for me.

Scott

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I'd bet on the 5 hour energy drink as the culprit.

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Me too...but I mean crazy high last Wed. And yes, I had one before the nerdologist...

Scott

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I'd be heading to your cardiologist...

Coffee and Arteries..

health.harvard.edu/heart-he...

~chris

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Hi Chris: I hope I'm not reading something correctly, but when I went to the link you provided (coffee and arteries) I can only read the article in its entirety if I pay $4.99 per month?

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Hey Scott,

I have been battling this my whole life just as you have. Here's my advice, if you drink alcohol, quit, if you smoke, quit, that five hour energy has to go. I drink one cup of coffee at 6:00 am and have one diet coke at 4:00 pm. I drink water all day probably about 24oz. in total.The Venetoclax nurse wants me to drink 64 oz. daily, but that ain't happening. I am past TLS so I am more able to focus. My BP at my doctor visits,which are numerous, average 120/75 sometimes a little up and sometimes a little down. I do take 20 mg Lisinopril once daily.

Nick

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Vivki,

I did all those things...quit smoking 5+ years ago, gave up all caffeine for 20 years..just went back because of the fatigue but normally I have one cup of regular coffee in AM and one half-caf in the PM.

I am going to work on getting more exercise....it is winter here in Maine...going out doors is an effort at times. I am not terribly overweight, maybe 10 pounds these days...I wanted to drop 10-15 pounds but then started thinking I might need them later so sort of stopped trying to lose weight.

Scott

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Dude,

I've been told for a few years my blood pressure was on the high side, and I never really paid much attention nor understood what the numbers meant, let alone did anything about it.

I've been taking Ibrutinib for 20 months, and I think that's caused my blood pressure to rise significantly. A week ago, my blood pressure was taken: 170/108. I was given some Captopril pills and purchased a home blood pressure machine.

A few days later, I switched to taking one Nifedipine pill every morning (along with the rest of my pills). Although it's only been a few days, my blood pressure is in the 130-140/70-80 range, and I hope it will get even better. I feel like the pills may give me a little fatigue, but it's too early to tell, being that it is a new pill for my system. And, actually, I feel great.

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BTW, I ALMOST got a chance to go up in a USAF F-16 in Japan two months ago. I realize now, however, that I would have never passed the advance physical with my blood pressure issue. (I work as a TV News Cameraman.) Meanwhile, my TV correspondent, with his ridiculously healthy pulse of 42, went up in the F-16 and had a grand old time. (If you're interested, I can send a link to the TV story on CBS.)

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To fly in an F-16 Fighter Jet (as pilot or passenger in the 2-seater model) you must wear a G-Force suit which inflates air around your legs immediately when the G-Force hits a certain level, thereby restricting blood flow to your legs. Otherwise, all your blow moves down and away from your brain and you will pass out as you hit 4 or 5 G's. At least that's my understanding. Air Force physicians would be unlikely to approve someone with CLL once they see a CBC or perhaps the BP. Here's a TV story I shot and edited a couple of months ago:

vimeo.com/245760889

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Great video! Showed it to my husband who is nuts for planes. He loved it, said you must have been really bummed not to be able to do it! He tried to be an Air Force pilot, but Tourett’s made that impossible. I presume there was a go-pro or something similar used?

BeckyL USA

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Yes, two GoPros in the cockpit. I wanted to have three, but the Air Force needed serial numbers a month in advance (and I needed to purchase a third), so ultimately I was only allowed to have two.

And although I wasn’t able to fly in the F-16, I was at least able to sit in the cockpit for a photo op!

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I always told my brother Military were pussies....we frequently pulled 5+ G's in aerobatics without a G suit. It is the negative G's that will cause damage the blood all gets shoved in your head....you can feel your eyes bulge...about 2 negative is all I ever did.

Scott

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Respect!

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I was catapulted off an aircraft carrier once, with the seats reversed around, and also felt like my eyes are going to pop out of my head for the first few seconds!

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Wow! Think I'd rather watch the video than go up in the plane, though.

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It was certainly less stressful for me to shoot the jet from the ground (and with unmanned GoPros)!

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Oh I totally want to see it....I used to compete in Aerobatic competitions in a Pitts Special....I was young young then...before the Extra series took over. I actually was flying formation with a Siai Marchetti when a news 'copter came by and took a picture....I got a copy in the mail a few weeks later :))) I didn't even know...that was really nice of them. I can send it to you if you want...I scanned it just last week.

I never got near flying a super cool Military Jet but my brother was a Commander in the Navy and got me into an F18 (?? F16?? I don't recall) simulator and I got to sit in a cockpit of one....but had to keep my hands on my head so I couldn't touch anything.

Scott

Thinking about the good old days.

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I put the video link in a comment above. But here it is again:

vimeo.com/245760889

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Sorry about the blood pressure issue. Have the opposite problem, so can’t help you much. Hope you can get it sorted out and go on living your life!

BeckyL USA

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Becky,

Ha my wife has the exact same problem as you...very low pressure...I been suspecting she is unloading some on to me :)))

Scott

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Yep, I am doing the same for my hubs. His is starting to go up....hmm..,wonder what that says about us as wives?

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Wives are the best invention ever :)))

Scott

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I have had high blood pressure at times both before and after being diagnosed with CLL On a medical 5 years ago it was something absurd like 180/90? and on retesting it was was still a bit high at 153/80. I don't think it has anything to do with the CLL. You must have had a commercial pilots licence to need an FAA medical every 6 months

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Yes, Commercial - Single, Multi, Land, Single Sea, Instrument, Glider, Ground and Flight instructor. I love flying...had those ratings before 19. Never did it for work though.

Dunno about the blood pressure...I guess I will take the pills my doctors wants me too...I would rather die of loookemia sometime in the who knows when instead of a stroke next week :)

Scott

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I must admit that I have never been put on blood pressure medication, nor have I required treatment for the CLL even though I have had it for almost 10 years. My WBC and Lymphocytes are still in the 30s (UK measurement) and I'm asymptomatic. My brother and nephew are the ones obsessed with flying. He has instrument rating and his own plane but only flies privately My nephew got his PPL at 18. I've picked up a lot about flying from them but have never wanted to get a licence myself

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You know I think the flying part is easy. The hard job is the guys in Air Traffic Control I was friends with a controller and he brought me up to the tower for a shift (I think he was trying to recruit me) and after spending one night watching this guy work I am pretty sure my blood pressure was a billion over a million. I simply could not conceive how he was doing that job. I was working on my Commercial ticket at the time...and ever since that day I never once felt controllers were anything but dedicated, extremely skilled people who made my job a whole lot easier....and never once after got upset if my route was changed or I had to hold or something. To this day my hat is off to all the Air Traffic Controllers who make pilot's life so much easier.

Scott USA/Maine

Thank you to all the ATC people everywhere

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