altitude?: When I was diagnosed, a good... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,356 members10,544 posts

altitude?

GinaD profile image
12 Replies

When I was diagnosed, a good 20 + years ago, I was told that altitude was going to be an issue for my hiking. I told the hematologist that as a West Virginian, my highest hikes were only at 4800 feet. He responded that given my home is at only 250 feet that I should " work up" to that elevation by hiking at lower, but gradually increasing, heights. Which I did and had no problem with 5000+ feet hikes.

Then Covid came and my hiking adventures had been severely limited for the past 3 years. But I still walk between 5 and 7 miles a day in my neighborhood. I completely forgot that diagnosing doc's warning about APS and elevation. I was so glad when case numbers dropped and I can finally get back to hiking my favorite trails. Last month I was finally back in beautiful Holly River Park on a strenuous hike at @1500 feet when I suddenly felt " woozy." Not dizzy, not weak but woozy. A hiking friend told me I was pale as a ghost. I rested, and continued with no more issues, though I paused to rest intermittently. I attributed my wooziness to the difficulty of the hike. My Apple watch detected no A fib. Wooziness lasted less than 20 minutes or so.

The next week I was a passenger IN A CAR when that wooziness returned. Wooziness only lasted less than 10 minutes. My driver and I agreed to modify our hiking goal from the 7 mile hike down to a couple of 1milers, through which I felt fine.

The only common denominator was height. Thats when I remembered that long forgotten warning from my diagnosing physician. I am currently wearing a heart monitor and I will consult with a cardiologist tomorrow. Anybody else have heard or experienced issues with mild to moderate activity at higher-than-usual elevation?

Written by
GinaD profile image
GinaD
To view profiles and participate in discussions please or .
12 Replies
lupus-support1 profile image
lupus-support1Administrator

I think you are right to see a cardiologist and anyone else!

Good luck and be well!

Ros

TouchofFrost profile image
TouchofFrost

I just moved from Colorado Springs CO 6000ft , back to the UK - sea level and the difference I feel is tremendous. No headaches, no sluggish feeling, and no brain fog. That's just my experience, but I was told Altitude affects the body in many ways especially those with APS.🤷‍♀️

Bloodredroses profile image
Bloodredroses in reply to TouchofFrost

so interesting thank you .AOS is so weird , 1 degree colder unless full in heating , my skin hurts .feel sick . Wake up spinning . I am on blood thinners , that makes cold more y readable doesn’t it ? G P s even specialists , cannot answer these questions . We have to work it out ourselves . Lot of good feedback on H Unblocked like this thread on APS .Excellent feedback , learned so much on altitude ,sugar absorption . Contributed on cold temperature affect .

CassiePDX profile image
CassiePDX

Nice to see a fellow hiker here! I live in Portland, OR, which is at sea level, and spend lots of time in the Cascade Mountains hiking and backpacking. I never received a warning like the one you did and often hike at altitude, without issue. I just hiked up to 7,000 feet, climbing 3,300 feet on my hike over the weekend. I am not sure that what you’re experiencing is related to APS, but I do think it’s smart to see a specialist. I am 45 and was diagnosed with APS one year ago after having a PE and am on warfarin, to give you some background. I hope you get some answers and would be curious to know what you learn - and if I should be avoiding altitude too. I hope not! During my short time with this condition, I’ve found that I am often the one educating my hematologist and pharmacists who manage me, since we APS patients are few and far between.

Bloodredroses profile image
Bloodredroses in reply to CassiePDX

YES YES I was shocked after and upto now it’s so rare . 5 years .my G P S do not pretend to know . I believe I developed it after 6 months of very strong anti viral treatment for Hep C . A trade off . Although before that was always allergic to cold . Lived in tropics for years ( with air conditioning ) but they was before Hep C treatment . Now can’t stand extreme heat .70 is old . 😪

dogtail profile image
dogtail

70 year old hiker from Ohio. Diagnosed 5 years ago and on Warfarin. I do remember while hiking the three sisters peaks ( pre- diagnosis) near Canmore , Canada at 9,633 and like you -did not feel dizzy - but woozy. Rest of the group went on and I proceeded to hike down to the car and felt better once I got down. Happened In the car on the way up to Pikes Peak once several years ago. Not sure if APS or just high altitude, My doctor has advised checking my INR periodically if vacationing in high altitude. Happy Hiking!

GinaD profile image
GinaD

I saw my local cardiologist yesterday. Heart beat is fine. He pointed out that since I flew to and from destination within the past month and experienced no symptoms with cabin pressure is at approximately that of 8000 feet, my symptoms at 4500 fert were probably not related to altitude. He says we may never know, but wonders if it was inner ear issues. Yep. We may never know.

MaryF profile image
MaryFAdministrator

Thank goodness you remembered the past advice, I hope your appointment with the cardiologist goes well. MaryF

Bloodredroses profile image
Bloodredroses

you don’t say what meds you are on ? If meaning APS it is ‘Sticky blood syndrome’ so blood is thicker is it not ? Less oxygen circulation ? I thought it was the blood thinners made me but breathless if walking uphill . (Not very fit ) but not akways . More energy on RIVROX than without so . Woozy should be diagnosed . Some fitness extremists do get a reminder from time to time also . By body then mountain rescue. I see on TV .

GinaD profile image
GinaD in reply to Bloodredroses

I am on warfarin as I have been for 20 years. I have a stress echo scheduled for mid January -we'll see if that trst yields some clues.

Bloodredroses profile image
Bloodredroses in reply to GinaD

I’m not a medical scientist , but it seems commonsense , blood thinners reduce oxygen in blood ? As thinner. So going uphill less available oxygen . I assumed that’s why I get out of puff sometimes . (Doesn’t happen going downhill)

GinaD profile image
GinaD

The doctor who diagnosed me and gave advice regarding aktitude has retired.No other hematologist or cardiologist .i have seen since thinks there is any connection between APS and wooziness. A mystery.

You may also like...

Warfarin and Altitude

Does anyone know if it's safe to walk at altitude while being on Warfarin? I am hoping to do the...

High altitude and APS

the high altitude and its affect on my blood. I'm already a little nervous about altitude sickness,

Newly diagnosed with APS

is my first post on HealthUnlocked. I was finally diagnosed with APS today which is a relief after...

Another breathing/sleeping question

would be a very good story. Of course, when I woke up, I only remembered bits and pieces and a...

Just diagnosed with APS

lucky that they didnt affect me much, other than some minor issues with my vision and headaches....