Home Orthostatic/bp Routine?

[Becia]

Does anyone have a home orthostatic/bp taking routine that helps them kinda keep an eye on what their body is trying to do? I know we have symptoms and such, but if you're on Midodrine as needed, how do you determine you may need a dose, or maybe you need some extra salt? Is there a "sweet spot" you aim for with your BP?

I ask, because while at Cleveland, they suggested I talk to my Cardio about possibly reducing my Midodrine, because my BP is so so high now, that seems to come with it's own set of problems, headaches being a primary deal. When I was diagnosed with POTS, my bp was 60/40, but now it seems it's commonly 150/108 and higher, especially with pain (while in hospital last time, it was 192/160 with a HR near 200 in a standing position). All I can think is yeah, low is worse than high for us, but TOO high comes with problems too, and I can't imagine that they want it to stay 150 and higher/100 and higher. Those are numbers that call for lowering bp meds, not raising in the normal world (and I know I'm not normal, but still, lol).

I mentioned maybe cutting Midodrine down a smidge to my cardio yesterday, and you might as well asked if the Pope was a Methodist, because she completely LOST it on me. Kept going on about why would I do something like that, because you pass out, you have POTS, you have this issue, etc... and I'm like "DUH! I know I am, I know I do, but hear me out." She refused to even listen to what I had discussed with Cleveland, kept reminding me that i have all these issues, and going on about how they have done all they can do for me at this office, I'm just gonna have to go elsewhere for more help. All I'm asking is y'all work with me, and listen to some theories, and see if we can get this functional better for me, while I'm on so many wait lists for more "specialized help." She wasn't even willing to do that, as she then promptly told me "We only have a short amount of time to see each other in a visit, so you need to get to the point of why you're here." At this point, I was ready to run over her ugly high heels with my wheelchair, I was SO mad. Pretty sure my BP was high too, my symptoms got really strong.

By the end of the visit, she said she was against lowering the Midodrine, but if I decided to try it anyways, to inform them so they can make a note on their records. Since I have another TTT coming up, in case Cleveland wanted me off my meds for the test, I asked if there was a procedure or routine for decreasing things (she yelled at me for quitting Paxil cold turkey, even through I had to constantly explain to her and refer her back to my records, the week I stopped taking it wasn't because I wanted to, its because my body was saying no to EVERYTHING, but that wasn't good enough) in case they wanted a TTT with no meds, because they are refusing to accept my previous TTT. Once again, cardio chick blew a small fuse, kept telling me they wouldn't ask her opinion on how to do this, CC does things their own way, and I need to contact them. I said I did, and they keep referring back to you.

I've spent the past month doing nothing but research and getting empowered, and trying to take control of my POTS while I'm having to wait on doctors and specialists. Trying to figure out things that make me feel better. Things that make me better equipped to handle my triggers, the world around me, to manage my symptoms. So after some discussion here at the house, we have decided to lower my Midodrine to see the effects, if it makes my headaches and symptoms better or worse. So I'm trying to come up with a routine of taking my BP... so, ideas?

This AM I did laying, sitting 3 minutes, and standing for 1 (all I could tolerate, and that was pushing it, normally I get 30 or so seconds in). Do you test before all meds? Once, twice a day?

Sorry this has been such a rambling post... it's been a crazy couple months, and I'm really tired, lol. About to go to yoga class for the first time in years, here's hoping it works with me.

[looneymom]

Hi Becia,

When are you going to Cleveland and will you be there for seveal days of testing in a row? When my son went to MAYO, they also did another ttt and told us when to take him off all his meds. My son was there for 5 days and I think we had to take him off all meds 48 hours before ttt. After the testing, he started back on his normal dosage of meds. I would call Cleveland and tell them your problem. Tell them your cardioloist is refusing to cooperate. Hopefully, they will understand the situation and be able to give you some advice. BTW, I would ask if they could refere you to a new cardiologist that understands POTS. It sounds like you may need a new one.

Normal blood pressure from what I read online is 120/75 but check with your doctor. What does she want your pressures to be at? Tyler tries to keep his top number over 110. In the beginning, I had no ideal how much salt Tyler needed. His blood pressures would be 85/ 53, 95/ 64. So the cardiologist wanted me to monitor and figure this out. He could not tell me how much salt to give because everyone is different. So I took Tyler's blood pressure the first thing in the morning after he was up sitting in the recliner. Then after he takes his medications (midodrine and salt) after breakfast, I would take his blood pressure 2 hours later. When I first started doing this, it was a pain and it kept me setting an alarm. However, taking blood pressures every 2 hours up until bed time paid off because I learned how much salt that Tyler's body needed. So after several weeks of doing this I knew how much salt Tyler needed and the cardiologist figured out how much midodrine was needed.

I also kept a journal of the pressues and when I gave medications and salt. When my son's top blood pressure number dropped below 110, I gave my son thermotabs with water. I took his blood pressure an hour later to see if his blood pressure was up and then took it again 2 hours later to see if it was staying up. So as you can see, this kept me busy and I felt like a doctor's assistent. However, it was worth all the trouble and you may become frustrated doing this. With my son, I also rotate water and G2 throughout the day to help keep electrolytes balanced. Thermotabs help with ths also.

If you have questions, please pm. This method of madness is what helped me figure out Tyler's needs. I am still having to do this now because of a new medication that has been added.

Rachel

[Becia]

I have asked the last three doctors I've seen from this practice and never have recieved a number. These were also the people that made it hard to figure out how much fluid and sodium I needed to take in, just telling me to load up on it and don't stop. I just keep thinking it's not safe to keep it up in "stroke" level high for so long, just like keeping it too low for too long has its own set of issues.

Cleveland is not scheduled for overnight on either day. I tried calling them today, but never got ahold of anyone, but I'm not stopping until I do get ahold of someone. All I did was ask if there was a safe procedure for doing any of this for these tests, and bam!

I'm guessing I'm trying to figure out how often, when I should do this. Like, before meds, to try and do orthostatics (which is so much fun with NO meds, I have to say, lol), certain hours after eating, before bed, etc. I'm journalling everything, symptoms, etc., so I can try and sense a pattern. Now today, I know I didn't eat much because I kept getting totally sick and vomiting everything, but I managed 15 mg of Mido, but was also VERY busy with yoga class, travel, store, paperwork from the mail. I was up with feet down a lot, and didn't feel great most of the day due to being stomach ill. So today may not hav ebeen the best day to try this, but I did. My morning orthostatics did point "Potsie" as what we call it in the house, with it dropping at the one minute mark to 129/96 from the 150's, and my heart rate going from 83 to 116 (increased 33 beats).

Tomorrow I will try to do ortho's before rising, eat then medicate (eat if I can, it's been really hard), and then the 2 hour thing as much as I can. I needed some sort of lay out for this, and I swear, the best doctor who would work with this and with me, and supported me in these changes I want to do, all goodness when out the door when he passed away last month. I miss him dearly. I may have struggled to get info out of him too, but he did at least give me info and not disregard me.

Before all this went wild, my bp was routinely 125/75 or around those ranges. I just about freaked when I saw the 170 and 190 I was seeing, and my corresponding HR having the hayday too. This experience of me lowering it may not last long, but Maybe it's something I need to get used to again? I dunno. I just am tired of headaches, and if high BP can do that, we need to do something about this.

I'll PM you some more questions tomorrow Thanks Rachel

[looneymom]

Becia

You will find a pattern. It will take time. When I start doing this will Tyler, it really got me into a routine of giving meds consistently at a certain time of day. For example meds after breakfast at 8:30 am, after lunch 1:00pm and 7:00 pm last dosage of midodrine. If we were off by 30 minutes, Tyler was still ok but an hour or more caused problems with blood pressures.

If Tyler ever goes back to public school, they will have to make this medical schedule work or Tyler will be in trouble. However, public school is not an option at this time. Feel free to pm any time and remember Rome was not rebuilt in one day. It will take some time to figure this out because of so many variables in your life style.

Rachel

[Becia]

Trying to find a pattern... In the AM, I try to do a full set of orthostatics with laying, sitting with feet on floor for 2 minutes, and then normally as long as I can stand. the past two days I've managed about a minute to 2 minutes before I'm way too symptomatic to continue (usually stand one minute, start machine and keep standing until its done which is roughly another minute). The past two days I've forgotten to try and get bps through the day, but did get them at night, where I just did a sitting feet down BP, and then had a friend help me stand for another rough attempt at standing (I get so much worse as the day goes, and I've currently got this bug of sorts thats really taking my energy and symptoms to town). Last night my machine kept erroring during the standing part, so we don't know if it was just going too low, or the cuff was malfunctioning, or what, but I did pass out. She hit the start button when I did after she got me laying down safely, and we ended up with 166/85 with a HR of 61 (which is the lowest I've seen it in MONTHS, I've been running 80's and up.)

This mornings readings before meds were 131/93 HR 82 laying down, 147/106 HR 83 sitting feet on ground, and standing 2 minutes 138/122 HR 109. Just really seems everywhere. I also just took it laying in bed propped up at 145/102 HR 79.

Just confused if I should be sitting, laying, attempting to stand, propping feet up, feet on ground, standing on my head, or balancing on one foot for this stuff. I asked my cardiologists, but none of them seem to have their ducks in a row, and no one gives me any inkling to other therapies or meds to help me get back going. I can understand they feel they've reached the end of their "expertise", but knowing I'm having enough nausea and vomiting that staying hydrated is a problem, and that's the first thing they preach to me about, just let me do some IV fluids, let my cells absorb some nutrients and fluids in a different way other than completely blasting my GI system with salt and fluids I cannot handle this way. And I understand being on the "high" side is a good thing for us, but there comes a point where you have effects from it being too high. Gotta find that sweet spot, and I can't even get a number from these people.

This is just gonna be loads of fun. I also found out today that i have to stop all my medications for my Cleveland Clinic testing coming up next month. I'm gonna have a great time with this, lol, but it will be very interesting to see what happens.

[looneymom]

Becia

It's going to be ok! I take all of Tyler's blood pressures when he is sitting down because he cannot stand up. So you migh just start by getting blood pressures when you are sitting in a reciner. Tyler is in a reclining position. Our cardiologist knows this is how I take his blood pressures. Don't put yourself in danger by standing up. I would concentrate on finding that sweet spot when sitting down. When you get more stable on your feet, then you can work on that part.

How many days in advance do you have to be off your medications? When Tyler was off his meds, I alternated water and gatorade throughout the day and he ate salty snacks. He could not have his salt tablets either and he still showed positive on ttt. You will get through this and the testing will be worth every minute of all your misery.

[Becia]

Two days prior to testing, I stop meds. I'm worried because I don't travel well, I have to stop meds and fluids as well so many hours prior to test, which are my travel house, so this should be a load of fun.

It's been a long few days, my brain is tired, my body is tired.

[Lethargic Smiles]

Maybe someone will chime in on an app they find helpful -- but I know they make apps to track your blood pressure and symptoms.

I need to do 24 hour urine collections to figure how I am doing with sodium. It's hard to figure out on your own and each specialist seems to throw out different numbers! I thought I was getting plenty of sodium, but turns out I wasn't getting near enough and I was washing out what I did have with water. I never would have figured it out without a 24 hour urine collection.

[looneymom]

It's easy to wash everything out of the body with too much fluids. Trying to balance electrolytes is a trick in itself. Tyler has been taking Taurine and some of the research I'm reading says that it will help balance the electrolytes. I started Tyler on this supplement for other reasons than this but may Tyler is getting a 2 for 1 benefit from this supplement. He did not have to take any salt tablets at all this morning. His blood pressure this morning was 120/75.

[Becia]

Yeah, the salt/electrolyte/fluid balance is such a sensitive one, that I've always thought I was washing away more than getting in. Thats why I loved the IVS i was on in the hospital... they ran them really slow, and it felt like my body was able to absorb more of the electrolytes from it (they gave me Lactated Ringers instead of plain saline). I felt a remarkable difference just from that, hence why I'm beginning the process for a port for home therapy. I felt way more vitalized with that assistance, that way I could focus my body on eating rather than drinking.

My bps this morning weren't too bad, but my HR was pretty potsy. went from 70's to 112 with standing up, which is never a fun jump. BP still pretty high (150's/100's) throughout the day on 15mg a day of Midodrine, and I'm still suffering the headaches, having a lot of swelling in ankles and such if legs are down too long (been laid up in bed for most of everything though, aside from throwing dinner into the crock pot yesterday, and watching an hour of TV with friends), and just general blah.

Hoping my doctor has some more info for me next week... ive got one day of testing in Cleveland, and then meeting with my GP to talk about my port and follow up.