Nin Posted December 21, 2021 Report Share Posted December 21, 2021 13 hours ago, MikeO said: I know the episodes are linked to a drop in blood pressure and eating can do that to me (had an episode eating lunch yesterday) This morning my bp was low again (87/69) went to blow my nose in the bathroom and had an event it did feel like my heart was going to explode it was beating so hard and my legs started to give out. I did get off my feet right away (glad the toilet seat was down) and avoided the episode getting out of hand. Yeah I'm wondering the same thing for me if its a drop a blood pressure is causing my worst events. I wish I could catch it at the time these things happen. Do you get really bad dizziness most days? It pretty much stands at around 106/61 most days don't know if that's normal or not, don't know whether to even mention it to the doctor. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 21, 2021 Author Report Share Posted December 21, 2021 59 minutes ago, Nin said: Yeah I'm wondering the same thing for me if its a drop a blood pressure is causing my worst events. I wish I could catch it at the time these things happen. Do you get really bad dizziness most days? It pretty much stands at around 106/61 most days don't know if that's normal or not, don't know whether to even mention it to the doctor. Yes most days i do end up with a bad go with dizziness. 103/61 i have had issues start i am sure this bp was lower as i had climb the stairs to record the reading. I have been getting better at knowing when i go low so i have been able to catch the lower numbers (93/58 when i started having issues even sitting) your 106 is not the worst reading but i do know when my diastolic gets in the 60's i do get symptoms. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 26, 2021 Author Report Share Posted December 26, 2021 well since the 18th had a few more episodes so last wednesday sparked a number of MyChart messages between the (faint and fall clinic and cardiology). The faint clinic was pushing to get a med reduction but seeing that my regular cardiologist is out for the holidays we ended up compromising. So the change is to take my Cardevelol at 8:00 am and then at 8:00 pm and the Amlodipine 1/2 tab at 8:00 pm and full tab at 8:00 am and see what we get. so far the changes have helped the waking blood pressures but the pm bp's are still low. I also feel different during the day so i hope that goes away soon. @PistolI did discuss with Tania my concerns over constantly uploading the ILR data but she still wants me to do it even though cardiology is not overly concerned with sinus tachycardia under 160 bpm. She also wants me to record my blood pressures after each event. I did bring up that i get a bit perplexed when i check my vitals after a (pots like episode) just for the fact that my blood pressure goes sky high i was able to provide a bp prior to one episode which was really low. As the the episodes when i faint or go down and do not have a tachycardia event (no change in hr and vasoconstriction) i am able to show consistent low bp's so she wants a ILR upload for these as well. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 26, 2021 Report Share Posted December 26, 2021 @MikeO - yes, my specialist always encouraged me to push the alert button and download the data with every episode. You never know what it might show, plus the fact that you experience tachycardia with every even is telling in itself - part of dysautonomia! The fact that AFTER a faint your BP is sky high is also telling. The same thing happened to me after each recorded episode. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 27, 2021 Author Report Share Posted December 27, 2021 16 hours ago, Pistol said: You never know what it might show This is the same thing my Dr said. Sure you don't know her? Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 28, 2021 Author Report Share Posted December 28, 2021 Well my regular Cardiology reached out today to get a update. I do like these folks. I did send in the latest vitals. I am a bit concerned that the last ILR report was not released. Normally who is ever manning the store will post the report in a couple of day's. I am sure there is more to the story coming. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 30, 2021 Author Report Share Posted December 30, 2021 Well sharing more of my journey. My Cardiologist responded back and does not want to make any BP changes. He is good with the waking pressures and i have to agree with that as they have come down to a normal range since the med changes (except for the low readings). I know that my Dr at the faint and fall clinic is not going to be happy about that as she knows that when i dip low i get into trouble but she is out till next week so this will have to wait. This last week or so i have not had any episodes but i have had to really work at this. I do have rules that i have to follow. The most effective is to keep moving (i can't wear compression stockings) so sit for a bit, stand up for a bit, stay in an upright position, move about for a bit etc... 30-60 second rule before moving when getting out of bed, off the recliner or couch. I almost always have issues with low blood pressures when i get off my feet so this rule has saved me many times. Listening to what my body is telling (that's hard for me) but i have been getting better at it. big thing is i am able to tell when my bp's are dropping so i can sit or lay down before any bad happens. I do have more rules to follow but they don't seem to as effective as the above three. I also keep extensive records of my vitals (it is really worth the effort) as we have been able to see the effects of changes to my care. Example is there is big change in bp's from september when we made med changes to what they are now in december. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 31, 2021 Report Share Posted December 31, 2021 17 hours ago, MikeO said: 30-60 second rule before moving when getting out of bed, off the recliner or couch. I almost always have issues with low blood pressures when i get off my feet so this rule has saved me many times. @MikeO - some members on this forum have reported that it helps them to drink a large glass of water right before getting out of bed in the morning, That has eliminated the lightheadedness and drop in BP. 17 hours ago, MikeO said: big thing is i am able to tell when my bp's are dropping so i can sit or lay down before any bad happens. That right there is the greatest prevention of falls you can have. When I sense my BP being too low or too high ( I mind high more than low, since it causes seizures in me ) I stay in bed and do a liter on fluids infusion. Then I am good to go! I am impressed how far you have come in listening to the early warning signs and in preventing faints! Often our awareness can be more effective than medications! Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 31, 2021 Author Report Share Posted December 31, 2021 9 hours ago, Pistol said: some members on this forum have reported that it helps them to drink a large glass of water right before getting out of bed in the morning, That has eliminated the lightheadedness and drop in BP. I have tried water before getting out of bed but had no or little no results. When i get out of bed right after waking up i do run into issues and have been able to track that on my vitals spreadsheet. What i did change up recently and seems to have had made a difference in my blood pressures is after waking i will lay in bed for 30 mins or so before i get up. I may roll around a bit, turn the tv on, read email on my phone, have an extra dream, butt cheek squeeze just to get my vascular resistance up. I am sure time will tell if this works or is just a fluke. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 4, 2022 Author Report Share Posted January 4, 2022 went down again and as usual i did get hurt. Knew it was going to happen again. This one is going to bleed out for a bit. caught the side of my head and the back. worst thing is i had no warning that i can recall. Just woke up on the floor. I did upload the ILR data once i came to. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 4, 2022 Author Report Share Posted January 4, 2022 Looked at the aftermath not pretty. This time i do not know how long i was down for. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 4, 2022 Report Share Posted January 4, 2022 Oh @MikeO - you were in the shop again, weren't you? Considering that you hit your head I would go get checked, just to make sure you dont have a concussion and maybe need stitches. That is a considerable amount of blood you lost, so dont just let it go. I am serious when i suggest this - have you considered wearing a helmet when you are in your shop? Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 4, 2022 Author Report Share Posted January 4, 2022 6 hours ago, Pistol said: I would go get checked, just to make sure you dont have a concussion and maybe need stitches. I did go to the ER and needed stitches or should i say they used staples. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 4, 2022 Author Report Share Posted January 4, 2022 Well all the tests showed up on MyChart. They looked good except the ECG. I hope the technician was off on the leads a bit. Diagnosis Normal sinus rhythm Septal infarct , age undetermined Abnormal ECG Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 15, 2022 Author Report Share Posted January 15, 2022 Well UW is being tight lipped as to what they think is going on. More test's are on the way. Quote Link to comment Share on other sites More sharing options...
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