JenniferInOhio

Trying to figure out what happened today. I was sitting with my daughters helping them with schoolwork (we homeschool) and I had this floaty feeling in my head almost like a boat on the waves. I thought I was imaging it and then I had another big "wave." I knew something was not right at all. Then I felt warm? and a little tingly in my chest/upper body - like I might go down. Something was definitely happening. I moved quickly to the couch to lay down and put my feet up. I felt better almost immediately and took my bp - 90/54. Nothing unusual for me.

I've never fainted so I don't know how it feels right before. Does that sound like a sudden drop in bp? I was sitting most of the morning with a few breaks to get up and do laundry and fix lunch. I had only drank one glass of water in the morning and had a bowl of cereal. There was nothing good for lunch so I didn't have anything until around 2:00 (oatmeal and milk) and it happened about 15 min later.

After my episode, I had a salty snack and a couples glasses of water. I felt ok the resf of the day - maybe a little shaky - from nerves possibly.

Anyway, it seems weird that it happened while sitting. Is that strange?

I have irregular beats all the time. Missed beats (pvc's) and SVT and non-sustained v tach.

I just wanted to say that you have an AMAZING attitude! Your story is so heartbreaking. I hope this forum can help you in some way.

I'm 39 and I've had pots for 20 years. I'm functional, and I thank the Lord above. I'm able to do pretty much anything except for a lot of physical exercise like hiking, running, anything in the heat. I'm on a low dose beta blocker as I have svt and non-sustained v tach.

I wouldn't say I have burning "pain," but I do occasionally have patches of skin that have a burning feeling.

I'm on a beta blocker and have severe allergies (and an epi-pen). You're right that they're not an ideal combination, but I need the epi for anaphylaxis and I've tried everything under the sun for my heart and beta blockers are the only thing that keep me functional. The tradeoff is that when I do have an allergic reaction (or an asthma exacerbation), they are more serious and more difficult to treat.

You might want to talk to your doc about prescribing a glucagon emergency kit. They are designed for diabetics to raise blood glucose when they can't take sugar orally, but it is also the drug of choice for beta blocker overdoses...which is basically what is happening when you are in anaphylaxis and the beta blocker is blocking the epinephrine.

a couple of caveats and things you should know:

- glucagon is really expensive (but no more so than epi-pens)

- it comes in a kit with a vial and a needle...you need to draw it up yourself and give yourself the injection (intramuscular)

- every ambulance in the US should carry at least 2mg (2 kits)

- every paramedic and doctor should know this, but their pharmacology classes may have been a really long time ago, so don't be afraid to remind them...nicely. see the excerpt below.

From uptodate.com (one of the most used professional medical references):

Glucagon for patients taking beta-blockers — Patients receiving beta-blockers may be resistant to treatment with epinephrine and can develop refractory hypotension and bradycardia. In this situation, glucagon should be administered because it has inotropic and chronotropic effects that are not mediated through beta-receptors. A dose of 1 to 5 mg in adults (in children, 20 to 30 micrograms per kilogram to a maximum of 1 mg) administered intravenously over 5 minutes is recommended. This dose may be repeated or followed by an infusion of 5 to 15 micrograms per minute. Rapid administration of glucagon can induce vomiting; therefore, protection of the airway, for example, by placement in the lateral recumbent position, is important in drowsy or obtunded patients.

Thanks so much! My Dr. mentioned glucagon - but I assumed it would be administered in the hospital. I'll ask him what he thinks about a glucagon kit. By the time you call the paramedics and actually get to a hospital, it would probably be 30 minutes or more before you received the meds.

I'm on a beta block and also have an epipen but its for shelfish and iodine allergies, i've fortunately never had to have used it. Personally i'm more affraide of what the adrenaline from my epi would ever do to me if i had to use it, but i have a couple of them so i guess if the first one did not work i could always used the second, but that might be alot of adrenaline. What is your epi for?

Epi is for tree nuts, peanuts and shellfish.

Just wondering if there were any other people out there who HAVE to be on a beta blocker, and HAVE to carry an Epipen for anaphylaxis? Have you ever had to give yourself the Epipen and did it work ok with your beta blockers?

Everything I read about beta blockers and epipens is not good...that if you need an epipen, you should not take bb's. I have SVT and non-sustained ventricular tachycardia in addition to POTS, so I've got to have that BB. I have allergies to tree nuts, peanuts, and shellfish.

I have sustained v-tach off of medication and nonsustained v-tach on meds. I'm on verapamil, a calcium-channel blocker, not a beta blocker.

It can't hurt to have another echo or even a cardiac MRI to ensure your heart is structurally sound. (All my cardiac workups have come back normal, and multiple cardiologists/EPs have assured me that the v-tach is NOT a concern because my heart is physically OK. My exact dx is idiopathic monomorphic v-tach.)

Honestly, just by the beats, I can't always tell the difference between SVT, PVCs with sinus tach, and the v-tach -- especially when it's nonsustained. (Sometimes I get episodes where all three are involved, I think.) For me, the biggest tell that it's straight v-tach is a change in my vision; I usually lose it during sustained episodes, and it grays out a bit, sometimes even just for a second, during nonsustained runs.

If the v-tach is mostly new for you, they could give you another stress test or do an EP study to see whether they can induce it. If they can, they might be able to do an ablation. They haven't been able to induce mine, so that's not an option for me yet.

Have they put you on a monthlong event monitor? That seems like a logical next step to see how often this is happening and to try to determine what part of your heart it's coming from. That kind of information could also help them decide whether you're a candidate for an ablation.

Thank you for the advice. I'll ask my doctor for another stress test - I just had one a couple of months ago. I'm also going to suggest a longer holter monitor. I only had a 48 hour holter done (since I don't have a home phone line) and it caught the one instance of NSVT. I had a stress echo last year.

I haven't been here in a really long time as I've been doing great with POTS:) !!!

I also deal with SVT, PACs and PVCs a lot of the time. Most of the time, they are just annoying and I don't think much of them. Recently, I've been having little episodes where I feel a little faint (not a typical Pots symptom for me). My EP Dr. put me on a holter monitor and a 3 beat run of nonsustained ventricular tachycardia showed up. I did not report any symptoms during the nonsustained vtach so I didn't even notice it. He also said that 3 years ago, my holter monitor showed a nonsustained vtach run.

He is concerned; therefore, I am concerned. He asked me if anyone suddenly died while young in my family. Of course, this really scared me. I've had stress tests, and echos over the years and dr. has assured me that my heart is structurally fine.

Does anyone else here have nonsustained vtach? How would you describe the feeling? Now, everytime I have a palpitation, I wonder if it is my good 'ole standbys of svt, pac, or pvc or the scary vtach..!!!

I just had a quick succession of 3 little beats (didn't seem to feel these fast beats as I was searching for pulse) and then a big thump. Is that vtach?

Also, my dr. put me on the beta blocker nadolol. Will that help with vtach?

Thanks so much for any input!

I am very pale and I see A LOT of veins particularly on my chest and legs. They seem so big and blue against my white skin.

Is anyone else veiny like this??

I can't and wont do squats. My trainer learned quickly that it was a bad idea to even let me try them because of what it did to my bp and hr.

Nina

How high did your heart rate go? I've been doing them and get up to 150ish. Did your bp drop or elevate?

After 3 years of being scared to do any exercising for fear of having a heart attack or POTS crash, I have finally started going to the gym. I am working with a trainer who is having me lift weights and I walk on the treadmill. I wear my heart monitor and we keep a close eye on it, not letting me get over 160. I feel good and so far I haven't had any negative Potsy reactions.

Just a little positive post for you all.

I feel best with 10 hours of sleep.

Hi Ernie - thanks for sharing your story. 15 months of no syncope- that is GREAT!

My birthday was Sunday too - hope you had a great day!

Hi Richard,

I wouldn't worry about a pacemaker just yet. I think there are a few on the board here that have a pacemaker, but most don't. I would definitely see an EP - it sounds like this doctor wasn't very well versed in POTS.

Meg - I don't think it has to do with POTS - I think it is pretty common among the female population.

Yes, I had about ~25 UTI's within a period of 2-3 years before doctors found out what was going on with me. Mine was caused by sex. Not every time, but every other time or so I had sex with my hubby, I would come down with a UTI.

They put me on Macrobid - I had to take before or right after sex. Fun.

TMI...bacteria was getting trapped behind a semi-broken hymen. Anyway, they found the cause when I was 6 months pregnant with my first child. They wanted to do surgery...but said I could also wait and see if the baby ripped the rest of the hymen away. The baby cured me

I only get occassional UTI's if I don't pee after sex.

More than you wanted to know, right?

Hi,

I had 2 TTT. The first, I passed - it lasted only 20 minutes.

The second, I did not show signs of POTS until about 30 minutes into the test. At that point, my heart rate started going higher and my blood pressure dropped too. High enough for a definite POTS diagnosis and also orthostatic hypotension. Maybe you needed to be tested a bit longer.

I did not have meds. No way they were injecting that stuff into me

Thanks Morgan.

As my hubby says, I'm a medical marvel. There's always some weird thing going on with me that doesn't make sense

okay, pinkish/purplish, no moons, my toes, especially my big toes are usually just purple. I have raynaud's though, so they do the triple color thing at times. Is that what you are looking for? morgan

Oh, who knows? Yes, I know it's not normal to have white nails with no moons and before I think I have some sort of disease, I wondered if it was POTS related.

On another note, does anyone know what cause bright red fingers and knuckles? Looks like a sunburn almost. My hands are always ice cold so you would think they would be pale or blueish, but they are bright red.

were you trying to ask more specifically about one or the other (nails vs. nailbeds)??

Nailbeds I guess. Mine are white with no moons. Pink band across some of the tips.

Normal or not so normal? As far as color...

I sleep 10 hours per night.

Hey - thanks Melissa. I asked my hubby what they were a week or two ago and he said they were like a colonoscopy bag?? He was way off wasn't he?