cathielu Posted October 26, 2009 Report Share Posted October 26, 2009 My orthostatic hypotension was so severe that I was partially or fully bedridden for many years. I found during my recovery process of propping up my bed that continual improvement came when I propped up enough for my resting heart rate to remain at 84-90 bpm, 24 hours a day. Within two weeks I was able to sit up long enough to use a toilet, and within four more weeks, I could sit up all day. Our vital signs should always be kept within healthy limits, including a resting heart rate between 60 and 100 beats per minute and systolic blood pressure at least 90 mm Hg. I was able to prop up my bed and my chair two inches more every four days. Eventually I was able to start walking, then eventually standing still for longer periods of time. Now I am back in college. I am very grateful for my recovery.Love,Catherine Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 26, 2009 Report Share Posted October 26, 2009 Woo Hoo, Catherine!!!! Very good news, indeed- seems to be our theme today. Great way to start the week here on the forum!What year of college are you in? Are you living away from home? Do you have to take any meds now? Do you feel any limitations? For example, if you "overdo" do you pay the price with symptoms? Forgive me questions- just curious! Your rehab sounds very sensible & I'm glad it worked for you. Thanks for sharing.Stay well-Julie Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 26, 2009 Author Report Share Posted October 26, 2009 Hello. I don't take any medicines. I have to make sure that I stand up two hours a day to keep my blood vessels strong. I am a senior. I will graduate in May. :^) I don't have any restrictions because of circulation anymore. I still have some back problems and gluten intolerance though. But I am very grateful for my improvement. I live in my parents' house while I am in college. I don't have any more suffering after being up like before. Yay! Love,Catherine Quote Link to comment Share on other sites More sharing options...
sarahmarie43 Posted October 26, 2009 Report Share Posted October 26, 2009 That's wonderful news!!! Quote Link to comment Share on other sites More sharing options...
erik Posted October 26, 2009 Report Share Posted October 26, 2009 That is great! Very good to hear of success and recovery. It does happen for a decent number of folks and it is very helpful to know about the things you have done to help yourself. Congrats and keep it up.It sounds like you're referring to the "sleeping with head slightly elevated" trick? And extending it to most hours of the day. I have also found this to alleviate some things personally in the past. I mysteriously insisted on doing it even before I knew POTS existed, just cause it felt better overall!Do you know what may have brought on your O.H.? Was it a sudden thing from an infection or just a mysterious condition? Did any docs happen to give speculation about an underlying cause? Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 27, 2009 Author Report Share Posted October 27, 2009 Thank you. Yes, I propped up my bed higher and higher with bricks and cinder blocks.My orthostatic hypotension started after I was in bed for several months with anemia, stomach pain, and a back injury.Love,Catherine Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 27, 2009 Author Report Share Posted October 27, 2009 I suffered severely, and was not understood or helped by my doctors. After 12 years of disability, I almost died during two tilt table tests. I don't agree with the way doctors and nurses treat people with orthostatic hypotension. Nobody ever explained a realistic way to recover. I lost hope for my recovery after suffering severely in two tilt table tests. It took another five years before I tried to battle back again. This time I succeeded. I am grateful for getting my life back. My back problems are bad though. But hopefully they'll get better too, with my physical therapy. Thank you everyone for your support. Love,Catherine Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 27, 2009 Report Share Posted October 27, 2009 AWESOME! I am so excited for you! I think that I will try this as well! Thanks for sharing! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 27, 2009 Report Share Posted October 27, 2009 Thank you for sharing your positive story! Congrats! You went on a retreat or something a while ago right? How did that go? I find your story so interesting! So, main thing you found that helped was to tilt the head of your bed or your chair at increasing increments every four days? Did you spend all of your time in the two environments? Were you on any meds? Do you require any meds or lifestyle changes currently for O.H.? (Do you wear stockings?)Congrats again! Hope everything goes great at college for ya! Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 27, 2009 Author Report Share Posted October 27, 2009 Hello! The medicines to raise blood pressure only worked for a short time, so they weren't reliable. I wore firm support hose up to the waist 24 hours a day during my recovery phase (except when exercising or bathing), until I was eventually able to stand up for two hours a day. Then I was able to sleep with my bed horizontal again, and not wear support hose. I have kept up with two hours a day of standing. Love,Catherine Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 27, 2009 Author Report Share Posted October 27, 2009 Yes, I did go on a mission to share the gospel of Christ. My back problems and gluten intolerance caused me to come back early from the Missionary Training Center in Provo, Utah. But I learned a lot and met many loving people there. It was wonderful. I have been sharing the gospel with friends since then. Quote Link to comment Share on other sites More sharing options...
friday7 Posted October 28, 2009 Report Share Posted October 28, 2009 My orthostatic hypotension was so severe that I was partially or fully bedridden for many years. I found during my recovery process of propping up my bed that continual improvement came when I propped up enough for my resting heart rate to remain at 84-90 bpm, 24 hours a day. Within two weeks I was able to sit up long enough to use a toilet, and within four more weeks, I could sit up all day. Our vital signs should always be kept within healthy limits, including a resting heart rate between 60 and 100 beats per minute and systolic blood pressure at least 90 mm Hg. I was able to prop up my bed and my chair two inches more every four days. Eventually I was able to start walking, then eventually standing still for longer periods of time. Now I am back in college. I am very grateful for my recovery.Love,Catherine I'm so happy to hear of your good fortune! It should help others to here about it. I have improved since first being diagnosed. I'm still having problems but your story gives me hope.Enjoy your life and school:)Babu Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 28, 2009 Report Share Posted October 28, 2009 How wonderful. I am so happy for you. God is good! So nice of you to share your story because many people will recover. All of us should have some hope. Best wishes for your future and the wonderful things ahead of you in life. - kari Quote Link to comment Share on other sites More sharing options...
cathielu Posted October 28, 2009 Author Report Share Posted October 28, 2009 Thank you. When I was propping up my bed, I pushed the foot of the bed against the wall, and put pillows on the wall under my feet. I am so very happy that I got better! I am enjoying school very much. I am learning a lot of interesting things. Time goes by really fast. Love,Catherine Quote Link to comment Share on other sites More sharing options...
Brye Posted October 29, 2009 Report Share Posted October 29, 2009 Thanks for taking the time to share!! I love success stories and hearing what worked!! Gives hope for sure!!Brye Quote Link to comment Share on other sites More sharing options...
cathielu Posted November 1, 2009 Author Report Share Posted November 1, 2009 I could have been healed almost two decade earlier if I had been given a program to strengthen my blood vessels.I am glad for my new life. I am planning to go on for a marriage, becoming a scripture teacher, and earning a doctorate in physical therapy. Love,Catherine Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted November 1, 2009 Report Share Posted November 1, 2009 Wow. I am so greateful for you and your success. It is an awful illness and so misunderstood. It gives us all such great hope and inpiration to hear success stories. Can I ask if you fainted repeatedly or just got so "ill" like me. I never really faint but I feel just horrid after any activity or standidng....chest pain...I am very grateful I don't faint...but I "have to" sit...my body just makes it known!!Erika Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted November 1, 2009 Report Share Posted November 1, 2009 Catherine how were you dx'ed? In your post you say you had to very bad TTT, why two? What were the results of the first? Then the second? Quote Link to comment Share on other sites More sharing options...
eva.gonzalez Posted November 3, 2009 Report Share Posted November 3, 2009 Congratulations Catherine! I'm so glad to hear that you are well, I am a newbie to this forum and I'm so glad to meet people like myself, and this definitely gives me hope that maybesomeday i too will be able to be rid of this horrible disease-eva Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 12, 2009 Author Report Share Posted December 12, 2009 I had very bad chest pain and fatigue when standing or sitting. I had to be lying down for many years. I had two very bad tilt table tests. The second one was a pacemaker test. It was a terrible mistake, because my problem was my blood vessels, not my heart. I almost died during that test. My suffering was so severe that I lost hope and did not try to fight the illness again for five more years. I was very sad.I am so grateful for my recovery. I have been healed from orthostatic hypotension for 2.5 years now. : )I am taking finals this week at college. Three down, one to go! I am also starting a job as an online math tutor next week.Love,Catherine Quote Link to comment Share on other sites More sharing options...
erik Posted December 12, 2009 Report Share Posted December 12, 2009 So glad your recovery is going strong. I feel sorry for your "lost years". I wish that had not happened. Fortunately a brighter new life can eclipse that.I was just researching some O.H. details today! My body has gotten better lately and it is corresponding with a longer delay in my OH (and my pulse increase is usually the slow-increase type now, rather than "instantaneous"). There are times when I have immediate OH... and then more resilient times when it is delayed significantly. When it is quick, even moving around doesn't stop the problem. When it is delayed, my "muscle pump" (from moving around, walking, etc.) is enough to stave off most trouble.When things are better, I can exercise and snowball the process (in a positive way), though if I overdo it (or dehydrate) I end up with the quick-OH again. I think your slow steady "vascular rehab" is really smart. You're gonna be a stellar PT expert! Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted December 12, 2009 Report Share Posted December 12, 2009 Erik - do you have OI or POTS? or both? Exercise seems to help for sure...but not overnite and I always get maliase from any activity.Yesterday was a great day for me as I did NOTHING.....had a stomach ache so I sat on the couch all day. Felt better than usual with POTS stuff. But I know that is not the cure ...it is like cheating on your diet...the instantanious reward..i.e. sitting doing nothing is doing nothing for me even if I feel better in the short run. Erika Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 13, 2009 Author Report Share Posted December 13, 2009 I am not going to be able to be a physical therapist because of my back problems. They are required to lift patients, and I can't do that. I might do some teaching or personal training. I am still going to prepare to teach the scriptures, and I would like to tutor in math and science.Love,Catherine Quote Link to comment Share on other sites More sharing options...
erik Posted December 13, 2009 Report Share Posted December 13, 2009 I see. Well, definitely teach people about the vascular rehabilitation!I'm still sorting out my situation! I've been called "dehydrated" and questioned about anxiety & depression , then "just O.H.", then more O.I. as the larger "symptom cluster" was acknowledged... and now a tentative POTS since pulse goes double or more upon standing (and doc is going a little "off label" in that genera to help me). Don't know what a full on autonomic evaluation will eventually bring! I'll eventually faint too, if I stand still too long!I know what you mean, Erika. Giving the body a decent bit of time in a relaxed supine state both helps it recover a bit better and also drags things down a bit. It's like there isn't an easy balance but somehow you have to dig out of the quicksand. Sitting still, one keeps sinking, but fighting too hard to climb out backfires too.When in my "bogged mode", I still push myself through it but I get punished like you describe. It feels like both sleep and the "post exertion phase" are just totally broken. I guess that's common with POTS/OI/CFS etc.But when I'm "magically" not bogged and I do everything consistently (hydration + all the tricks), things get very functional and I don't get punished even for pushing hard. My "condition" is still there, but symptoms subside tremendously. If I slip up, I can bring back the OH in an instant though, especially when pushing the exercise... but the steady "Cathielu Vascular Rehab Protocol" sort of thing builds up a safety margin against those setbacks for me. So far, heat-intolerance/weather & diet induced "metabolic feel" are my key indicators of whether I'll go into a my "bog" or if I can be active and think better. I slog through it either way, 'cause extended rest puts me in a deeper hole. A couple day's rest can be good though.I like your analogy about cheating the diet. In that case, a very controlled splurge can be ok (and gently rev the metabolism) but its a fine line and too much backfires easily! Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 21, 2009 Author Report Share Posted December 21, 2009 Thank you. : ) If even one person gets better with my regimen, I will be happy.Love,Catherine Quote Link to comment Share on other sites More sharing options...
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