Why I asked about holter results

[Merrill]

Third try was NOT the charm; I lost that one too. Seem to have no problem posting for others... But I'll try again now. I'll keep this short.

I had a (somewhat miserable) appt w/new cardiologist last week. Could I be exaggerating when I say he didn't ask a single question? Before he came into the examination room, I'd been interviewed by my Favorite guy--a cardiology fellow who helped lead me to a rather quick (comparatively) diagnosis a year ago. He's great ... And perhaps he'd already filled in the cardiologist by the time he'd walked in the door.

Anyway, he walks in and says, "I don't think you have POTS; I think you have IST (inappropriate sinus tachycardia, for all you newcomers)." I said "what about positive TTT result, w/HR rising 40 beats in first minute?" He said IST people can test that way too. I said "what about my HR going down during my sleep?" He said "It didn't go down all that much, and your average for the 24 hours was still over 100."

I asked what it was for other people, and he said between 60 and 70. I wasn't thinking clearly enuf at that moment--I should have asked what it was for POTS people! Sigh.

From the articles (URLs repeated below) I've read, IST is another form of dysautonomia anyway...

He mentioned ablation and I shook my head and said no way; not having that (THANKS, YOU GUYS!!!) He said it wasn't first line of defense anyway--Beta blockers are. I asked about florinef or midodrine along with it; he said no.

So here I am, nearing the end of one week on 50 mg of Toprol XL and he wants me to go up to 100 mg starting in two days for a month and then call.

I've emailed the cardiology fellow--I think 100 mg so soon is way too much ... I am EXHAUSTED on 50 ... or maybe it's the physical therapy? Am I doing too much all at once? Not much I can do about that ...

What bugged me is that he didn't ask me about how I felt--he didn't ask a single question about what other symptoms I'd been experiencing (and I came prepared with my completed Vanderbilt survey and everything) .

So now you see why I asked what your holter results showed. Mine, by the way, showed high of 167 at 11:30 at night--I remember that I was laughing really hard at that moment, reading my husband my "diary" of the day--I'd fallen asleep at my desk twice!--and 67 was the low at 6 in themorning or so. Average 101.

I gotta run; my ride is here and I don't want to lose all this! Questions? Comments? Thanks in advance,

Merrill

http://heartdisease.about.com/cs/arrhythmias/a/IST.htm

http://heartdisease.about.com/cs/womensiss...ysautonomia.htm

[MightyMouse]

Merrill, wow... I guess my first thought is that a doctor who takes an interest in you might be the first order of business. The IST v. POTS issue... well... I've not got much to add on that one; I think you know the distinctions better than I do.

Nina

[DancingLight]

merrill,

this is gonna be brief...sorry...but i wanted to respond at least a little...

if i understand correctly, you are not in immediate danger in terms of starting meds, etc...and are able to function pretty well without them.

that being said...DON'T RUSH ANYTHING! if you don't feel comfortable starting the higher dose of bb yet, don't! there's no reason that i can see that you need to hurry it up, you know? it always takes me a very, very long time to increase a med. and maybe 50 mg is enough anyway for you. if you are having that much side effects on 50 mg (and yes, bbs can really cause fatigue)...then i wouldn't up it more yet...i would wait it out longer to see if you start to feel better, then reevaluate.

also, probably not your imagination that the dr. didn't ask you how you were! i've had that happen a lot! maybe you don't even want to see him again and want to use this time to find someone else? i know, easier said than done, but he doesn't sound like a keeper...

i don't know about ist vs. pots...sorry on that one.

yes, pt could make you tired also...you may have to back off a little there and try to sort out the variables as to which is which...in terms of pt or bbs. you know?

i am sorry if i sound bossy tonight. i was bossing my mom around tonight and i started laughing so hard b/c i am so keyed up i did it and didn't mean to at all!

i just wanted to let you know...it's okay to take the med thing at your own pace and to follow your gut. also there are so many bbs out there it is also possible toprol isn't the fit for you.

trust yourself! you have a lot of wisdom...and i could hear you doubting yourself. i just wanted to let you know not to doubt yourself, k?

emily

[calypso]

Merrill,

Sounds like your cardiologist is treating you the same way mine treats me in the sense that if the beta blocker lowers your heart rate, it doesn't matter how you feel. He basically told me even though I was dead tired to just deal with it, because it's better than having an arrythmia or a heart attack or whatever. I take 50 mg Toprol XL too, and I am very tired on that dose. But it does get better over time ... like months. I went down to 25 mg for a while and did really well, until I started having these weird episodes of tachycardia with flushing and my throat closing up (I'm guessing these are just really bad panic attacks, but I don't feel particularly panicked during them, so who knows).

Even if it is IST, treatment is usually the same. Just make sure you get your BP checked at the doctor's office so you know if the beta blocker is dropping it too low. My BP is slightly higher than normal, so it doesn't affect me adversely, but 100 mg in someone with a normal BP could really make you feel worse.

Also, remember that it's YOUR decision to take/not take the meds. You can take less or none.

Good luck,

Amy

[yogini]

Hey Merrill,

Sorry for your lousy doc experience. (Someone yesterday was right that we hear about at least one of these per day!)

I agree with what the others have posted. Your instincts on the ablation seem right and it's really up to you if and when you want to increase your meds. I just wanted to add that like Amy my fatigue from increasing the BB and taking more of it in the am (I used to take it at night) was horrible at first, but has gotten a LOT better over time. I used to live in constant fear and discomfort from high avg HR and random tachy attacks. Both are a bit more manageable now, so the side extra effects were totally worth it to me.

By the way, do you have low BP? If the doc doesn't want to give you florinef or midodrine, that's really frustrating...aargh!

-Rita

[Merrill]

Thanks--I actually have quite a bit to learn! I thought beta blockers were supposed to regulate heart rate and rhythm and keep the affects of adrenaline on HR in check ... I didn't realize they also lowered blood pressure. Errrr... Amy, my BP seems to always test out in the normal range, but definitely on the low side of normal as opposed to the high side. Is this why I'm feeling more pooped on 50 mg? Although you say you're pooped on 50 too, so I don't know! Maybe your pooped has something to do with running after a toddler and changing poopy diapers!? I don't know how you do it, girl...

(To be honest, on 25 mg, I didn't feel anything different ... but maybe it was because it had only been 2 days and my body didn't know something new was happening?) Maybe 100, though, would be a big mistake!!!

I know a lot of people on the forum take beta blockers ... is anyone taking 100 mg? (if the fact that it's extended release is important, lemme know) I'm 5'7 and 145 at the moment ... but now that I'm back in yoga and have my new tanita fat/weight scale, I should be 135 in minutes! I reveal this oh-so-personal info just in case it could be relevant...

Last night was not good ... I ran up some steps (first time I exerted myself since starting the meds) and could NOT catch my breath. My heart was beating hard and fast, but not as fast as without the toprol... but the chest pain and heaviness and windedness that lasted for a LONG time was quite new. It wasn't THAT many steps! Cheez! Walking two blocks in cold snowy windy conditions later made things 3 times worse, and triggered asthma and more pain. OY.

I wanted to thank those who shared their holter experiences on that other thread--and I'll respond more personally later.

Thanks,

m

[MomtoGiuliana]

Merrill

I take 5 mg/day of pindolol. This is a betablocker that contains a beta agonist--it is different from some of the other beta blockers used by POTS patients. (The reason my doc initially put me on this was b/c I was breastfeeding and it is considered a bit safer for the baby. I stopped b/feeding upon the pediatrician's advice/concern about the SSRI and this med, but continued with pindolol anyway, rather than switch to another, b/c it seems to help.)

I think the dosage varies with the type of betablocker taken.

My bp was on the higher end of normal following pregnancy and for a long time afterwards, but is now inching down to lower side of normal. I think some days the beta blocker does make me more tired.

The windedness that you describe--I believe that could be a side-effect of the beta-blocker. It should subside as your body adjusts.

Katherine

[Guest tearose]

hi Merrill,

Ditto on all the good ideas above.

I am not sure why people take BB's if it doesn't help them feel better? If you have to wait two weeks to feel only mildly better could it also mean your body is trying to compensate for this new chemical and it would really do better without it? Forgive my ignorance here, I haven't taken them so I don't have depth of knowledge or experience of others.

Just be real slow and cautious M, I don't want any more funky things happening to you!

take care, tearose

[MomtoGiuliana]

Tearose/Merrill

I take the betablocker still b/c it does reduce my heart rate, and makes me feel more comfortable for that reason. Also, I seem to have a bit of a higher exercise tolerance with the low dose beta blocker. When my bp was higher end of normal, it knocked it down to a good range, which I think was healthier for me. I have over time cut down my dosage from 10 mg to 5 mg. The 5 mg is usually just enough to take the "edge" off the tachycardia. I also notice fewers ectopic heartbeats.

Katherine

[yogini]

I agree with Katherine. Although there are side effects, I feel a lot better due to the BB. I'm not sure I could work or take care of myself without it.

[ginger]

Hi Merrill and all

What a crazy time for you Merrill! I don't think I'd be seeing that cardio again. (I know, easy for me to say ) I absolutely refuse anymore to put up with that kind of treatment from a doc or medical facility. I check my watch and get my full time and all of my questions answered... usually try to say something off the wall to grab their attention and get them to listen. Fortunately, I've got my specialist list down to a group I can work well with.

Other than that, I'd suggest be careful with those meds. I can't offer much help on difference between POTS and IST. Can you call and ask someone at Mayo or Vanderbilt? Just a thought. Maybe they could help.

I'm doing metoprolol (Lopressor brand name) beta blocker. I started 25mg and had to immediately cut in half and take 12.5mg in the am and 12.5mg in the pm. And also had to start Florinef the next day... my blood pressure was low and dropping on standing sometimes anyway and then the beta blocker really messed with that (110s/70s to 70s/50s in about a minute from sit to stand). BB does help keep my HR down, but I still feel icky most of the time, not much different than before.

A friend of mine just got diagnosed with tachycardia (but not POTS) and a local GP doc tried to start her right off with 50mg of a BB (not sure which one) and she ended up in ER. ER docs and later a new cardiologist said she basically was overdrugged. Now she takes same exact dose I do (it's not the same one, but don't remember name).

Best wishes for your new meds, research, etc! I'm sending patience your way.

Ginger

[Merrill]

Ginger, we're on the same drug ... Lopressor and Toprol XL are both Metaprolol, although Lopressor is not extended release, while Toprol is. (I just called the pharmacy to see what was what ... and what the lowest dose is--25 mg. )

Were you monitoring your own bp at home when you started on this beta blocker? Or did you just know your bp was low because you felt so wiped out? (I don't have any kind of monitor...) I'm sorry to hear you still feel icky--whether you take the meds or not. That's so frustrating ...

I had one pill left of my 50s last night--so I just took 1/2. Today I still feel tired, but much less so than yesterday on 50. Can you imagine that I'm supposed to start taking 100 mg tomorrow!? Uh, I don't think so! It might lower my heart rate to "normal," but I doubt I'll be able to get out of bed!

(PS I just read on a drug site that one of the side effects, in addition to fatigue, is shortness of breath and asthma ... and to "be careful on stairs." That kind of made me laugh--I'd love to see a direction somewhere "OK to be reckless on stairs"--but it added confirmation that my reaction to running a few steps the other night was not a fluke, but expected ...)

Take care,

m

[Merrill]

A footnote: I just called the new doctor's office to say I wouldn't be doubling my dose of Toprol and that I wanted to cut it in half instead. I talked to the nurse--described my side effects etc. She called the doc and then called me back to say OK. So there's something! Thanks to all who empowered me from the sidelines,

m

[ginger]

Well, how about that... the doctor's office agreed with you!?

Yes, I've had a bp monitor for awhile. Have one at work and one at home. So, I did "official" readings. I check every now and then and when I feel bad. You can get a plain model from pretty reasonable. I've even made my family test it, too. Interesting was my mom's bp dropped and hr went up from sit to stand... she had major heart attack at 48 and I know she has sleep apnea. So maybe there's a bit of genetics at play?

I can't even imagine 100mg... I'd have no bp left, I think.

It'll be interesting to see what Mayo does with me and my drugs in a couple weeks. I'll let you know.

Hope cutting back does the trick for you! It sure is a frustrating process to balance the drugs and side effects.

Ginger

[Guest Mary from OH]

Merrill-

WOW!!!! For once, I feel like I can actually HELP someone!! It's funny, I can't explain it, I kind of feel like I have "super powers" ( hear cool music)

OK. When I was dx a couple of months ago, one of the things my cardio was ruling out was IST (also something with ventricular tachy too). I had to go through a specialized test called an E/P study. Electrophysiolgy study. They take a catheter and put it up your groin (just like a heart cath) and use little pace makers to "pace" your heart. They try to put your heart into it's "inappropriate" rhythm. By finding the areas in your heart that cause the rhythm (or not), they can discover info. For example, in my case, no specific area caused an increase. In other words, I didn't have IST, simply POTS. I also didn't have the VT, because stimulation of that area didn't cause problems either.

I hope I made some sense. Can you get this study done. (BTW it was painless) I was terrified beforehand, but it wasn't bad at all!!

[Ernie]

What a terrible experience you had. I don't understand why doctors just don't listen to their patients. It's as if we don't know our body. I am glad that they agreed with the lower dosage. How you doing better?

Ernie

[Merrill]

Mary, I'm diggin' that cool music!

I'm curious: did your cardiologist explain what the difference in diagnosis (POTS vs IST) would make in your treatment?

This is all confusing to me because the doctor I saw is medical director of the clinical electrophysiology dept of this hospital (a major medical university hospital) ... he didn't mention this test. I wonder if he thought my holter test was more indicative of IST than the doctor who saw me last year thought it was. (I just looked back at your other post, in which you shared your holter results ... and while our highs and lows are quite similar, your 24 hour average was much higher than mine!) Or maybe it's because the treatment is still beta blockers? Or maybe "he just didn't like me?" (that's a joke -- new book out w/similar title...)

You explained the procedure well ... and I too would be absolutely petrified. But I know you'd give me the confidence I'd need if I ever go through it!

Definitely something to think about as I continue my research on all this!

Thank you for helping me!

And Ernie, thanks for asking. I am feeling significantly better on 25 mg than on 50. I can't say if it's lowering my hr for sure, but I think that it is. Even pushing some snow from one part of the sidewalk to another today didn't send me into a tailspin. I was winded and tachy, but not wrecked ... and it wasn't scary this time. So this is all good!

Best to all--stay warm,

m

[Guest tearose]

Hi ms merrill,

Just want say I'm happy that smaller dose is still working for you. I am proud of you for calling and making that suggestion!

Ask for a partial refund from your doctor visit...

keep getting better, tearose

[avais1]

Hi Merrill,

On my 24 holter, I went 68 while asleep, to about 105 during my regular day, with spikes at random (meaning occurring sleeping or awake) of up to 178. This was at the height of my POTS diagnosis. Don't know if that helps you or not.

Also, I am one of those "weird" ones regarding Beta Blockers. Dr. Low had me try one Inderal (Propranol) 10 mg. I had the WORST reaction. I felt faint, sick to my stomache, me heart actually raced even more. I never took another one. After that, Dr. Low decided Beta Blockers were not for me. He said my body needed the higher heart rate to compensate for something else that has been damaged in the mechanism.

Also, you might want to do some more research. Recently, it was either on the JAMA or the New England Journal, or else the Lancet, I saw an article that Beta Blockers can actually CAUSE arrythmias in some people.

I am lucky in that I have a cardiologist who has the "less is more approach". I agree with that as well.

Anyway, good luck!

[Guest Mary from OH]

Merrill-

Actually, I was "kind" and didn't explain the SCARY part to you. hee hee. Maybe I should save that?? No, I know that you'll write back and ask.

The scary part (for me) was that if they got you into a rhythym that they couldn't pace you out of, they need to use the defibrilator to SHOCK you out of it !!! I was so afraid that they would have to do it for me!! My heart goes SO fast some times!! I was terrified about that!! But, they give you meds to relax you!! Still....

Fortunatley, I never had to be shocked. Thank GOD!!

I will hold your hand the entire way, I PROMISE!!!

I can't answer your question about IST and POTS now. I have an excruciating migraine and can barely form a coherent sentence. PLEASE ask me again. (even if you have to email me privately. I may forget. I apologize!!

Good luck. I think, in this case, your dr may be incorrect!! (as we all know they do not like to be WRONG!!!! It bruises their fragile little egos!!)

[steph37822]

oops

[morgan617]

Merrill, I didn't read all the posts as my sight is really failing. I had ist versus atrial tach and had ablation. It was the worst decision I ever made. I worked a 14 hour the day before and now am on disability. A normal person has less than one hour of tachycardia a day. anything over that is abnormal. my first one post ablation was 16 hours of tachy. before the ablation it was 8 hours. now a year after it's about 1-2 hours. the problem is, it's the only way my body had to compensate for the pots and they took that away from me, so now i'm just about bedridden. my bp is way too high all the time, so all i had was tachycardia to help me stay upright. now that's gone. be very very careful about ablation. morgan