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Went down again


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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.

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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). 

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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 

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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. 

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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.

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  • 1 month later...

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.

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@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. 

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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. 

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  • 1 month later...

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. 

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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. 

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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.

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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. 

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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. 

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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/

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