TypewriterGirl

I have an Omron BP cuff that monitors my blood pressure and pulse, and for some reason when I have a high heart rate the highest reading I can get is 149. I know when I have a fast heart rate, and I'll get an error everytime I check it standing. Does anyone else have this issue, or have another monitor that they recommend?

I live in San Diego and still have issues, although I can't imagine living in extreme climates like some of you. Summers and winters are really hard on me, but my body also probably doesn't know any better.

I've been on 1/2 of a Florinef for a week and a half. Yesterday I had horrible muscle spasms in my legs and arms and took a potassium pill both yesterday and today. I wasn't feeling well and having some palpitations and my blood pressure was 147/88 (normally around 105/75). Is this normal, and could the potassium cause the high blood pressure? If it's not one thing it's another - sheesh.

No, it's not the potassium- it's the florinef. Have you been getting good relief from it (the florinef)? If so, I'd go down to 1/4 tablet rather than stopping all together. Florinef is known to raise BP. I had the same situation. It gave me good relief UNTIL my BP got too high.

Our docs have given us permission to go up and down on dosage as needed. It's really smart to periodically check your BP as it can inexplicably (silently) shoot up with the florinef. BTW, florinef can drain your body of potassium. It's good to replace it sometimes. At a low dose like you are taking, it's usually not necessary. Is your potassium a prescription? Be sure to carefully monitor that as a low/high can affect HR, etc.

Let us know how you do.

Julie

I do have a Potassium prescription from when I was diagnosed with Meniere's (incorrectly), but just took OTC Potassium supplements. My BP was up in the 120's yesterday and 130's this morning, but when I started feeling bad I checked and it was 147/88. That's a new one for me. Thanks for the advice!

Hi Sara,

I'm so sorry you're having a rough time. Sometimes antidepressants are very helpful in getting through tough times. Stress and not eating will exacerbate your symptoms. I know many people who have been on antidepressants and gone off when things are less stressful. Best of luck to you,

I've been on 1/2 of a Florinef for a week and a half. Yesterday I had horrible muscle spasms in my legs and arms and took a potassium pill both yesterday and today. I wasn't feeling well and having some palpitations and my blood pressure was 147/88 (normally around 105/75). Is this normal, and could the potassium cause the high blood pressure? If it's not one thing it's another - sheesh.

I didn't want to hijack the poll for people who work, but I've missed so much work and when I'm not missing work I'm almost non-functional or need to go home halfway through the day. Have any of you been able to work from home? I'm scared that I'm missing so much work, especially because my company has gone through many lay-offs this year. I'm able to do everything from home except attend meetings (when I'm feeling ok), just don't know the best way to ask for help.

I was diagnosed with Menniere's because of the issues with my ears (mostly left). Suffice to say after trying prescription diuretics that put me on the floor they ruled out treatment. I think the issues are with my Pots and not Menniere's, and have never been able to help it. When I fly I wear earplugs for about an hour before getting on the plain so that the pressure stays the same throughout the flight and that helps some. I hate flying for many reasons, but the ear pain is the worst.

I'd certainly give florinef a try...work your way up to a therapeutic dose. Lots of extra salt & water with it. Check potassium to make sure it doesn't get too low- eat bananas, potatoes, or OJ.

My son (17 y/o) is enchanted with typewriters. His favorite is an E-Bay find: a 1914 Royal that he's got to working condiiton.

Feel better-

Julie

Is there a good way to check potassium without doing bloodwork? And do french fries count as potatoes?

I've been crawling around the house, so a bit better than earlier. And that's an amazing eBay find - I collect typewriters and I'm an editor/writer, so I thought the name was pretty fitting. Thanks for the advice! So nice to have a group of people who understand why your body is out of whack.

Hi Julie,

The stuff I've got is Fludrocortisone oral suspension, 100mg in 5ml.

I've been drinking extra water today but I have absolutely no appetite and am struggling to eat anything. Perhaps I should try taking a salt pill or two to see if they help perk me up? I've no idea what my blood pressure is and don't own a cuff or anything to test it with - should I get one? what do other people do to check theirs?

Thanks again for all your help!

T xx

I bought my blood pressure cuff from Amazon - it's an Omron (my doctor recommended it) and I think it was only $35, which is great compared to the $85 at the drug store. AND I didn't have to move off of my couch to get it. I think I'm going to bedazzle it too. Anyway it's been very accurate and helpful in seeing what's wrong at any point in the day.

It was 92/80 which is pretty low for me and I've been having stomach issues. My cardiologist called me back a bit ago and told me to take Florinef, which hopefully is helping to keep the gallon of water I drank back in. I have Pots syndrome but have been to urgent care three times in the past month for IV fluids, so was hoping to skip going there since I think they're going to name a wing after me pretty soon. Thank you for your suggestions - I may need to stock up on licorice and see how that works too. Ugh, so frustrating.

I just started beta blockers yesterday (acebutolol) and my BP is pretty low. I feel horrible and too sick to eat. Trying to drink as much fluid as possible and keep legs elevated. Any help would be appreciated.

I have joint pain in all the same places. I used to play sports competitively so thought it was attributed to that, but my doctor just noticed it the other day. Worst in my hips, knees and shoulders, and all of my joints pop out of place. Good for party tricks, bad for everything else. Do you take anything for your joint pain?

I do, but I've missed an embarrassing amount of work. I work online so I'm sometimes able to work from home, though if I feel bad enough to work from home I'm probably not getting much done.

Going off of Gabapentin was a really awful experience for me, even when I weaned off of it. I remember being a Disneyland and having bad brain zaps and feeling horrible. Have you tried going off of it before? It might be at least part of the issue.

Hi everyone,

I was recently diagnosed with POTS and prescribed Acebutolol and Florinef. I was reading that the beta blocker can have adverse reactions when taken with ibuprofen, which I take pretty normally for joint pain. Has anyone else heard this, or do you have any alternatives that have worked? I took the beta blocker this morning, but am kind of scared to take the Florinef after hearing people's reactions to it...

Thanks for any advice!