MikeO Posted August 19, 2021 Report Share Posted August 19, 2021 Not sure what to think. My BP dropped from 153/110 to 98/60 the 98 is getting off the garage floor and walkin into the house just to see my vitals were. Its ok some way i will work this out. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 19, 2021 Report Share Posted August 19, 2021 So sorry, @MikeO! I really know how frustrating this is, it happened to me daily for years. I wonder if your doctor would ever consider low dose Tennex ( guanfacine, not the ER version ). I too have labile BP's and this med ( ordered by my autonomic specialist ) helped me for a while, until I stabilized on IV fluids to where I no longer need it. It does not prevent the drops in BP but it brought my High BP down to where the drops were not as noticeable any more. Like instead of 153/110 to 90/60 it would be only 120/80 to 90/60. I would still get lightheaded and feel like passing out but was more able to prevent the episodes due to more warning. Since the cause of your BP drops has been determined to be of neurological onset you cannot really treat that, but he high BP CAN be treated. I started out on 1/2 of the lowest dose twice a day and that was enough to keep my BP down ( I do take other BP meds as well ). But it cannot be the ER version ( called Intuniv ) b/c that is ordered for ADD and cannot be cut in half as well as will make it difficult to get off ( you have to wean off to stop it). Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 19, 2021 Author Report Share Posted August 19, 2021 1 hour ago, Pistol said: doctor would ever consider low dose Tennex ( guanfacine, not the ER version ) I will inquire about this makes sense. I will be seeing my vascular Dr tomorrow and will be following up with the Cardiologist on Monday hopefully one of these Guys have had some experience with guanfacine Quote Link to comment Share on other sites More sharing options...
p8d Posted August 19, 2021 Report Share Posted August 19, 2021 My dysautonomia cardiologist had never prescribed guanfacine when I asked about it based on @Pistol experience. He did prescribe it and it definitely helps me but I have to take the extended release form or the fatigue is terrible. I have orthostatic hypotension, HPOTS, supine hypertension and for awhile just hypertension but that’s resolved I *think* since I stopped gabapentin and/or increased my Ig dose. Usually the cardiologist’s go for clonidine as an alpha blocker and I took that for awhile but it caused terrible rebound hypertension. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 19, 2021 Author Report Share Posted August 19, 2021 Hi @p8d guess i will just have to ask my Dr's. I know BP will come up tomorrow when i squeeze a 180/105. I am not sure if i can even take guanfacine while i am on pyridostigmine. I did read that clonidine can be unfriendly with the rebound hypertension as well as other side effects. I don't need that right now. Just not sure what to do to be honest as i have neurogenic orthostatic hypotension, supine hypertension, hypertension and (super secret POT's) if i take the wrong combo of meds. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 24, 2021 Author Report Share Posted September 24, 2021 Well happened again. I should have known something was up when my bp dropped to 99/69 on wednesday evening. This time i piled right into my tool chest in the garage. At least i did not hit my head this time. Nurses at cardio rehab are going to be all over me as i can't hide the bruising. Quote Link to comment Share on other sites More sharing options...
cmep37 Posted September 24, 2021 Report Share Posted September 24, 2021 Ouch @MikeO - no warning at all, that has to be tough! Before I got used to having POTS I would faint a lot when my HR got too high but I did get some warning - ringing in my ears, tunnel vision - I just kept thinking if I ignored it it would go away! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 24, 2021 Report Share Posted September 24, 2021 @MikeO - sorry this happened to you again! Like @cmep37 I too used to constantly pass out and get hurt. Today I know the signs and ( thankfully it has not happened in over a year ) usually can prevent falls and injuries. I simply lie down, where ever I am, just drop to the floor. Sometimes even squatting helps. 1 hour ago, cmep37 said: I just kept thinking if I ignored it it would go away! That is exactly why I used to pass out and get hurt all of the time! I thought fighting it or ignoring it would just make it not happen. Today I am wiser, and can prevent most attacks by lying down as soon as the slightest warning sign happens. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 24, 2021 Author Report Share Posted September 24, 2021 Oh you two @Pistoland @cmep37this happens so fast i can't even react to it. This does suck @Pistoli did post that getting lightheaded i would drop to the floor and pretend i was tying my shoe in public. Thursday i was sitting on the garage floor sorting out tools stood up and stared whooshing really bad (and yes went beyond that) I did get experience the low bp convulsions, legs wobbled and went down. All i can say is i am so trying to resolve issues and so is uwm madison. A good hug will help. Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 10, 2021 Author Report Share Posted November 10, 2021 Had another event today. Should have seen it coming my bp's were all over the place at rehab. Bottom line i piled into the workbench in the basement was a violent event and ended up again on the floor. This time i was able to send off my ILR data to the team. I Hope it picked up on an a issue. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 11, 2021 Report Share Posted November 11, 2021 Sorry @MikeO about yet another episode! I hope you did not get hurt? Thankfully the ILR caught it. When I had an ILR there were many fainting and seizure episodes caught, but they never showed anything but tachycardia. Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 11, 2021 Author Report Share Posted November 11, 2021 54 minutes ago, Pistol said: Sorry @MikeO about yet another episode! I hope you did not get hurt? Thankfully the ILR caught it. When I had an ILR there were many fainting and seizure episodes caught, but they never showed anything but tachycardia. Thanks @PistolOnly spot i hit was by my upper lip. Even with dinner meds i am still tacky been hanging out at about 110 bpm. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 11, 2021 Report Share Posted November 11, 2021 7 hours ago, MikeO said: Even with dinner meds i am still tacky been hanging out at about 110 bpm. The only thing I can do when I get that unstable is to stay home, mostly in bed except for hourly strolls through the house - I call them my orthostatic rounds. When I get to where I am not sure whether I will pass out or not I just have to bite the bullet and give in - meaning I have to stay safe and avoid any potential episodes. I believe this is the second time you posted about passing out in your work area - apparently not a safe place for you to be right now? Please be careful and take a rest until your symptoms improve, I would hate to see you get hurt again. Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 11, 2021 Author Report Share Posted November 11, 2021 14 hours ago, MikeO said: When I had an ILR there were many fainting and seizure episodes caught, but they never showed anything but tachycardia. The UWM monitoring Cardiology reached out to me this morning and just like you they only saw that i went tachycardia as well. Quote Link to comment Share on other sites More sharing options...
Rexie Posted November 11, 2021 Report Share Posted November 11, 2021 I haven’t hit the floor due to low blood pressure since starting ashwagandha 4 years ago; among its many virtues is that it is an adaptogen (helping one function better at the extremes while increasing endurance). About the same time and more rigorously after autonomic testing revealed an orthostatic component to my dysfunction, I started pausing throughout the day or as part of my walking exercise, to touch my toes and hold the downward position for 20-30 seconds or more before coming very, very slowly back up. (I get better deep breaths while in the downward position, too). I do this standing near a railing out back or near furniture or a free wall inside where I can have a hand on support. Doing this exercise does give a major head rush and often greying of vision – a whoosh. It also gives me controlled training in sailing right through a big dip and out the other side in a few minutes. Helpful, for example, if you reach down to get something while at home, or, get up from an activity on the floor, or for example, while out shopping and getting something from a bottom shelve. The training keeps me on my feet, although I must pause for a moment, while giving my body and mind (yes, it is freaky and disconcerting and enraging and sad all at once) a chance to regain homeostasis. A brief pause while out in public is acceptable (lots of people seem to pause for reasons unknown) and a pause is far better than the embarrassment that stems from dramatically crashing into a display of store goods. Hope this is a little clearer than mud – it’s training in getting use to being functional while being dysfunctional. Kind of like establishing muscle memory – your body will remember it does not have to collapse during blood pressure drops even if you are not actively conscious and “present” at these times. A service dog might be useful if one thought one would never get a handle on these blood pressure crashes. My first German shepherd was highly trained and we were quite bonded. When I got Lyme disease he took to herding me to a chair or other place to sit down when I went through a phase of petit mal (absence) seizures – he’d know one was coming before they happened. Some service dogs can detect orthostatic hypotension. (My present shepherd is self-centered and uncaring, but she is sweet in her own way). Service Dog for POTS – How They Help & How To Qualify: https://usserviceanimals.org/blog/service-dog-for-pots/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 24, 2021 Author Report Share Posted November 24, 2021 Well happened again. I did upload the ILR data just after the event. I am getting concerned. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 19, 2021 Author Report Share Posted December 19, 2021 well still having issues. One more near event. All i can say is i ate an hour before got off the recliner and it felt like my heart was going to jump out of my chest was dizzy and lightheaded. I did make it to the kitchen chair and recovered. Also uploaded the ILR data again. i am starting to have no faith in this thing. Quote Link to comment Share on other sites More sharing options...
Nin Posted December 19, 2021 Report Share Posted December 19, 2021 48 minutes ago, MikeO said: well still having issues. One more near event. All i can say is i ate an hour before got off the recliner and it felt like my heart was going to jump out of my chest was dizzy and lightheaded. I did make it to the kitchen chair and recovered. Also uploaded the ILR data again. i am starting to have no faith in this thing. Do you think it may be to do with what you're eating? When this happens do you get really hot?? Just wondering as some things I eat i react to can range from 10-60 mins after. Usually my heart starts thumping 1st, I just feel really weird like I'm going to faint and then I start getting hot. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 19, 2021 Author Report Share Posted December 19, 2021 Hey @NinI doubt it is what i am eating. Yes i do get really hot before an episode. Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 19, 2021 Report Share Posted December 19, 2021 7 hours ago, MikeO said: Also uploaded the ILR data again. i am starting to have no faith in this thing. Mike - its not the ILR's fault. Even if you hit the button after you come to from an episode - it records the 5 minutes prior to you marking the event. Mine also was set for a very high and very low HR, and events only ever showed tachycardia. But that is OK - symptomatic sinustachycardia upon being upright is the hallmark sign of POTS, so it will strengthen the diagnosis. I know, you are probably hoping for some abnormal rhythm that can be fixed, like with a pacemaker. But unfortunately that is not the case in dysautonomia. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 19, 2021 Author Report Share Posted December 19, 2021 4 hours ago, Pistol said: I know, you are probably hoping for some abnormal rhythm that can be fixed, like with a pacemaker. Pistol you are right i am still holding on to a glimmer of hope that there is a smoking gun that will make all of this go away. Instead i should be embracing the pitfalls of dysautonomia and learn to master it like you have. Quote Link to comment Share on other sites More sharing options...
Nin Posted December 19, 2021 Report Share Posted December 19, 2021 17 hours ago, MikeO said: Hey @NinI doubt it is what i am eating. Yes i do get really hot before an episode. Yeah with me lots of other things cause these episodes its just food was just another trigger for me as well Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 19, 2021 Report Share Posted December 19, 2021 10 hours ago, MikeO said: Pistol you are right i am still holding on to a glimmer of hope that there is a smoking gun that will make all of this go away. Instead i should be embracing the pitfalls of dysautonomia and learn to master it like you have. Oh Mike - dont think that there is no hope just because of dysautonomia! You CAN live with it - it will just have to be a different life than the one you got used to! I used to be so depressed and confused and - yes, hopeless. But that all changed when I eventually found acceptance of my limitations and the changes I had to make. But that does not happen overnight. All will be OK, I promise! Just be patient with yourself and kind to your body. And enjoy the little successes in life! Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 20, 2021 Author Report Share Posted December 20, 2021 14 hours ago, Nin said: Yeah with me lots of other things cause these episodes its just food was just another trigger for me as well 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. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 20, 2021 Author Report Share Posted December 20, 2021 12 hours ago, Pistol said: Oh Mike - dont think that there is no hope just because of dysautonomia! You CAN live with it - it will just have to be a different life than the one you got used to! I used to be so depressed and confused and - yes, hopeless. But that all changed when I eventually found acceptance of my limitations and the changes I had to make. But that does not happen overnight. All will be OK, I promise! Just be patient with yourself and kind to your body. And enjoy the little successes in life! Thank you! so much for the reassurance Pistol it helps more than you can imagine. Quote Link to comment Share on other sites More sharing options...
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