Alma Posted November 9, 2015 Report Share Posted November 9, 2015 (edited) I did several poor man's tilts for the doctors when I was hospitalized last month, and they all showed tachycardia on standing. Supine HR would be around 65, and standing would go up to 130 right away, then up to 140-160 before I would fall over (but with enough control to fall towards the bed).Now that I am at home, I have been largely at rest, and have not pushed myself to the point of passing out. Until Friday, when my husband bought me a blood pressure monitor and I did my own poor man's tilt test:Baseline (after 10 minutes supine): BP 96/65 HR 72 Subjective: Feeling fine2 minutes standing: BP 91/75 HR 93 Subj: Starting to feel like I wanted to sit down, lightheaded, weak5 minutes standing: BP 88/74 HR 110 Subj: Feeling really bad, horrible headache, had to lean against the wall8 minutes standing: 111/93 HR 39 Subj: Ready to pass out, so couldn't wait for the 10 minute markIt was the heart rate that scared me. I've never seen it like that before, and didn't even know it was possible. Does anyone have any idea what that was about?*edited for typing error Edited November 9, 2015 by Alma Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 9, 2015 Report Share Posted November 9, 2015 Alma so sorry you are feeling so poorly I can certainly sympathize...I have trouble with a wide range of heart rates (230s - 30s) it seems the more my hr fluctuates so does my blood pressure. I had one cardiologist tell me that a heart rate in the 30s was fine because triathletes get them and they are extremely fit... unfortunately don't think he was very knowledgeable on dysautonomia. My new cardiologist, who has actually treated POTS before, told me recently that as bp drops the natural response is for the hr to increase as compensation. I do on occasion have heart rates in the 30s but not to concerned at this time as they are infrequent. I do pass out 10+ times a day and when i am wearing my heart monitor thats usually when i catch my hr in the 30s. (BP is also around 50s/30s when we can get a reading) Typically I pass out for a longer period of time if my heart rate doesn't spike right away. Just wanted you to know you're not alone in this.Recently started a new medication to help lower/regulate hr and am seeing some major improvments as things seem to be leveling out more. Hoping this is the new trend for me.Hope you can figure something out soon! God bless. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2015 Report Share Posted November 9, 2015 I sometimes experience bradycardia after several minutes of standing. I know it seems counter to POTS but my specialist told me this is seen in POTS patients. So what you are experiencing may be consistent with POTS. Definitely something to explore with a specialist though. Quote Link to comment Share on other sites More sharing options...
Alma Posted November 9, 2015 Author Report Share Posted November 9, 2015 Thanks so much for your kind replies! I am glad to know I am not alone in this, because it really scared me to see such a low HR. Ancy, you pass out several times per day? Is that because you need to try to do things standing up for too long (washing dishes, etc) or is that because you don't have enough time to even go to the washroom or walk to another room without passing out?I have 5 minutes or so before I pass out, so I have been staying pretty seated so that I don't pass out, and that has worked fine for now. But my dad and my husband are doing all the work around the house, so all I have to do is walk from room to room, and go to the washroom. I am worried about what will happen when my dad goes home, and I will be home with 5 kids to feed and care for every day until my husband comes home from work. I am not used to this illness yet, and I really don't know what to expect. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2015 Report Share Posted November 9, 2015 This condition is hard to predict although most people do get better over time. You may need support for awhile. If you are fainting that is not a safe situation to be in by yourself and in addition with young children in your care obviously. Hopefully you have a specialist who is helping to find medical treatment that will address your symptoms. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 9, 2015 Report Share Posted November 9, 2015 I agree that safety is important, especially with your children. Do you have anybody else local that could step in when needed? Could you maybe use a wheelchair or an office chair to get around your house during the bad times?My mom who has fibro cooks sitting in a office chair and does pretty well with it. We have learned that many obstacles can be overcome, just have to find a different way of doing things.Unfortunately the only time I never pass out is supine. As of right now 1hour of sitting in my tilted wheelchair I'll pass out 2 or 3 times, walking with help about 20 steps and then I'm out. This a great improvment from where I was last year, if I was sitting I spent most of the time unconscious. This condition has been very life altering for me but I am grateful to God first for carrying me through the last 4 years and for all the help my family and church have been through all of it. My twin sister is my main caregiver this year I was able to get on long term care and now she is paid by the state to care for me 5 hours a day.Hope you can find a way to adapt and overcome. God bless. Quote Link to comment Share on other sites More sharing options...
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