Anyone With The Fast Heart Rate And Low B/p When Standing

[mae]

HELLO,

Just curious about treatment with this combination of problems, I go to the doctor Friday and just getting some ideas ahead of time.

Thanks ahead of time

Mae

[Katja]

Hi,

My bp doesn't drop right away, usually, but it often drops very low after I stand for about 5-10 minutes. I take Midodrine and Florinef, and along with compression hose, salt, and fluids, they seem to help a lot. My doctor was initially planning to give me a beta blocker, as well, but when I showed him my record of orthostatic vitals, he said it was out of the question. Though my heart rate gets quite high, it barely compensates for the bp drops, as it is - it's a compensatory mechanism, in my case, and lowering it would likely cause more problems than it would solve.

[Rachel]

Midodrine, salt, fluids, Gatorade, and compression hose help me with this. Florinef and beta blockers are also an option for some.

Rachel

[Guest brianala]

I was on a beta blocker but I could not tolerate it - it made me waaay too sleepy (I'm sleepy enough as it is!)

Now I'm just on Midodrine 3x a day, and I have been told to drink 100 oz of water a day, and double my salt intake. I've read about compression hose from this board but I haven't been able to find any that fit yet so I haven't tried that.

[Heiferly]

Midodrine 10 mg every 6 hours (4x daily, yes I take it even when I'm in bed at night, contrary to the manufacturer warnings--I do not get supine hypertension from it)

Fludrocortisone 0.1 mg every 12 hours

Salt 3500-5000 mg/day

Water/Powerade Zero 96-128 oz/day

I tried a beta blocker but could not tolerate it. I take many other medications, but those are the things targeted to my BP/HR. My blood pressure has stabilized quite a bit but my heart rate still increases >30bpm upon standing and frequently goes >120bpm, so I wouldn't say I have great control. My frequency of syncope has gone down, but I still do faint.

[Lgamez3]

I hear so many are on midodrine (?). What is this med for? My Cardio Dx'd me with POTS during a TTT and I am trying my 3rd BB now. When I stand, my heart races but my blood pressure is typically low all the time and does not rise while standing, it actually drops.

I wish I could find a med that would decrease the symptoms and allow me to stand longer so that I could go back to work! I am going nuts. The smallest tasks have me laying down gasping for air.

[potsgirl]

Midodrine sounds like it would be a good drug for you to try. It helps keep your BP from falling too much when you stand, and should also help with your elevated pulse. Another drug frequently diagnosed for this problem is Florinef, which also helps you hold on to fluids/salt. If you're like me, when I stand up my blood pressure drops about 30 points (down to around 70/55), and my pulse goes from 60 to around 115-140. Unfortunately, I couldn't tolerate either of these drugs at a higher level to help me, but they may work for you! Ask your doctor about them, and good luck!

Cheers,

Jana

[Guest tearose]

I cannot tolerate any meds!!!

I do in fact have this fast hr with lowering bp over time. So, I must do all behavior/non-invasive methods to live fully.

I stay hydrated, use electroytes, use a lot of compression,(hose and torso garment), a seat cane when necessary and I sit or cross my legs too!

[mae]

Thank you all. And potsgirl what do you do since you can't do meds? I worry some what because of the extreme med sensitivity I have

Mae

[tinkerbella]

It's a constant challenge allergic to almost everything newest thing to try to blunt the heart rate is 800 mg ibuprofen 3 times a day, mestinon 60 60 30 mg,

clonidine 1/2 tab am pm. once a week hydration at hospital for day, Gatorade by gallons, electrolytes Popsicles, sea salt water and soup/ broth/v8.

I'm fighting off having an ablation and pacing.

I'll still haven't given in to the porta cath yet. I think I'll ask for 2 days of hydration next. That's the most helpful.

Good Luck!

[potsgirl]

Hi Mae~

It's one of the most frustrating aspects of having this disease - knowing that I can't tolerate Midodrine (anything over 2.5 mg makes me very sick, and 2.5 mg does nothing for my symptoms), or Florinef. Florinef gives me nasty migraines, and Midodrine makes me feel fluish and headachy. I tried the Midodrine for 3 1/2 weeks at 5 mg, really tried to give it a chance, but no go. I eat a lot of salt - my doc recommends 5-6 GRAMS a day - drink a lot of water, try compression hose (which don't do a whole lot, either), and elevate the head of my bed 4 inches. It's all I can do...at least I love pretzels and salt. Info flash: Rold Gold pretzels, for those who can eat them, have 20% of your salt in just one 17-pretzel serving, and they're low fat. Love 'em.

Hope this helps. Feel free to PM me if you'd like.

Cheers,

jana