Sotalol?/what Are Your Rates?

[cardiactec]

hi there, i'm new to the site....

just wondering if any of you are on sotalol. it's a pretty potent beta blocker....but it seems to be helping a lot for me.

also, just curious as to what all of your heart rates were/are while upright (before going on meds).......my rates were crazy, and i think the highest that i saw posted somewhere on this site was like 180.....and i wasnt sure if that was sinus tachy or a true conduction problem in the heart (like PSVT, or PAT).....

[labas_2u@shaw.ca]

Hi Cardiactec and welcome!

The highest I ever hit was 240 (supraventricular tachycardia) and had to cardioverted twice in a row as it just would not come down

My resting heartrate can run at 120 without a beta blocker.

By the same token, I can run 52 bpm..... go figure!

Maggs

[BEE]

My highest was 170's and since having my ablation it has only hit 140's. It was SVT..AVNRT. I just have sinus tach now all the time and run about 100 but like others at times I am in low 60's usually at night. This all with no beta-blocker.

[cardiactec]

wow, bee and maggs, so you both were the diagnosed with conduction property abnormalities and then later (after ablation/cardioversion) were also diagnosed with POTS?

i have rates at 200 but it is all sinus in origin, no PSVT or reentry like you guys.....the true definition of SVT is a heart rate over 150, basically coming from above the ventricles (hence the supra), so were you true SVT, meaning you had a wacky part of your heart other than the sinus node firing off a million shots a sec? or was it sinus tachy at 240? most people think that if it it over 150 than it is SVT, which in fact it is, but an SVT can be sinus, atrial tach, atrial flutter/fib, etc............so i was just curious as to whether or not your SVT was sinus or another focal point in the heart firing like crazy. i assume since they cardioverted you that it wasnt sinus tach........unless you had docs that couldnt read ekg! )

[cardiactec]

yeah i was just basically curious as to who in this forum has rates as high as 200 (being sinus in origin) for POTS heart rates while standing cuz i went to beth israel research in boston and the neuro there was FLOORED that my rates while upright were 200 and that overall, i didnt have a problem with standing still for 13 minutes other than feeling a little sweaty and SOB. he said that all the pots patients he has seen have never had sinus tach at 200 and he was floored that i did so well with being upright with rates that high because he has patients come in with rates of 120 that only can stand for 5 minutes because they are so symptomatic......

[cmtaylor5]

I have recorded episodes of sinus tachycardia with an event monitor in the high 190's. Around 210 was the highest with a pulse monitor. I have never had any episodes of SVT. All of my strips show sinus tachy. Before I was treated, most of the time, my sinus tach ran between 165 and 185.

Carolyn

[cardiactec]

hey carolyn,

does your toprol help with the rates? how much do you take daily?

[cmtaylor5]

Yes, my Toprol controls my rates entirely with the exception of extreme exertion. I take 25 mg per day and live a normal life with a few minor limitations.

Carolyn

[BEE]

I definitely had true SVT shown on EKG's at one point a cardiologist tried diagnosing me with something called Long-Ganong-Levine Syndrome..something weird shows on EKG. But later was told I had Av node reentry tach. It only was SVT when it was around 170's and I felt like passing out just laying down.

That is very odd that you don't feel a bit weak or presyncopal with aheartrate in 200's. Maybe you have strong blood vessels??? I owuld be happy that you aren't syncopal.

I was on Toprol XL for 6 yrs. after being on almost 200mg. a day my cardiologist said lets stop it it wasn't working and my bp's were way too low.

Back when I had ablation or before I was on Amiodarone. Mind oy I am only 28 and I have also had a cardiac cath.

Bee

[cardiactec]

hey bee, yeah i think it is odd that i dont really feel like passing out with rates that high....but hey i'm not complaining....sometimes i wish they would do an EP study on me just to look at the conduction pathways....some days i really feel like i just have inappropriate sinus tachy and not POTS because i'm not dizzy and presyncopal like the rest of the gang with pots (at least i hear the clinical features for pots are mainly dizziness and pre-syncopal episodes).....i do get symptomatic sometimes......but just the other day (and this is on beta) i was just sitting outside in the heat and even sitting my rates were 150 and i had no clue. i thought my rates were normal cuz i couldnt feel anything.......some days though i get very nauseous but very rarely do i experience pre-syncopal feelings and i have never passed out.....i dont know, some day i think they are right with the diagnosis of POTS and other days i just think it's inappropriate sinus tach.....the tilt test definitely showed a postural contribution though to the heart rate and that's why they all jumped on the banwagon of POTS ......rates lying down to standing go from like 70 to 200 in like 15 seconds and usually i dont feel a thing....

bee, i too have had a cath.....had it when i was 19.......along with a TEE, regular transthoracic echo's, tilt, the whole cardiac workup aside from an EP study (minus the tilt test).....

how come they cathed you? or were you just referring to the EP cath you had?

they thought you had long QT syndrome? did they rule that out with the EP study? how come you now have tachy (even if it is just sinus) and do the docs relate that to a sudden onset of POTS or from playing around in your conduction pathways during your EP study? how long after your EP study/ablation did you start up with the sinus tach?

sorry so many questions!! )

[AJVDK]

Welcome to the forum. I am glad you are here!

I also have SVT I just take metoporol 25 mg 3 times a day. It works well for me most of the time. I also had 2 abltions and a pacer. I now only get up to 150-170 now so I don't get that high anymore!

[Jacquie802]

Hi,

I go to Beth Israel Deaconess Medical Center and Boston Medical Center. Who is the doctor you see at BIDMC???? I have SVT/PSVT/Sinus Node Re-entry Tachycardia....I had 3 EP Study's and 2 Ablations. I still get the SVT once in a great while, not nearly as often as I did before. I take Metoprol for the SVT now, before it was Toprol, but the Toprol and Midodrine did not do good paired together.

jacquie

[cardiactec]

thanks AJDVK for the welcome!

wow, there seem to be a lot of you that have conduction abnormalities and not just autonomic dysregulation....how interesting.......so you had true SVT (not sinus in origin?) ....did you develop your syncope and POTS before or after your ablation?? geez. a pacer??? how old are you??

i think it is so funny, (i do it myself), when you say i now "only" get up to 150-170. we become so used to the high rates that 150-170 BPM becomes like a norm for us when the average person who sees that just about collapses to the floor because they know that this is a very high heart rate.......

i just cant get over the conduction abnormalities that you guys have. wow. and how you later developed POTS or auto dysreg? were you diagnosed with pots before or after ablation? wow....

i have seen roy freeman and christopher gibbons at beth israel. i just went down for their research investigation into pots and saw istvan bonyhay (GREAT doc) and he was the one that just about jumped out of my skin when he saw my rates at 200 (in sinus mechanism!) while upright. he said he'd never seen rates so high in pots (being sinus).........and my legs also turned purple towards the end of the tilt but interestingly enough, i wasnt that symptomatic (thank god!). the day i left, which was the following day, i was pretty nauseous and ill feeling....

have you participated in their study at beth israel?

[Ernie]

My highest in a doctor's office was 250 bpm and the lowest was 40 bpm. Of course both times I fainted.

[cardiactec]

oh my gosh ernie! 250!!! were you standing up? does you BP plummit? how often does your rate spike like that? is it sinus tach? how long has it been going on?

[cmtaylor5]

Sorry,

Forgot to add that I never get dizzy or presyncopal either. I was a runner, and I would run for 50 minutes 6 days a week with a heart rate that was always over 185. My blood pressure, which is normally low, doesn't really plummet, either. During "adrenaline surges" I just get an extremely narrow pulse pressure or an extremely widened one.

I was misdiagnosed with IST before my dx with POTS. I was put on a calcium channel blocker because I'm an asthmatic and was really ill from it. Be careful of an IST dx. Sounds like you're very informed, but I was on my way to an ablation (even though my resting heart rate was 55). Everything turned around for me once I had the POTS dx.

I also would get heart rates of over 160 sitting in the sun. I also thought it was normal. After years of this, when my POTS symptoms got worse, with heart pounding (even with a normal heart rate) and episodes of resting tachycardia, I started to become extremely fatigued.

Carolyn

[cardiactec]

hey carolyn,

it is so good to hear that you have a similar type situation as me. i often have thought that the diagnosis of pots for me was wrong because everyone it seemed that i would talk to would tell me that they are always dizzy or always feel like passing out. i, VERY rarely feel dizzy. every so often i do, but it doesnt plague me on a daily basis, not even weekly, and sometimes i am fine throughout an entire month with no dizzy spells.

i work at a hospital as an echo tec. i am trying to get into the EP lab to work as an EP specialist, but i tried several times just going into the cath lab with the lead they have to wear (yesterday was interesting) and i had a hard time with it. it was surprising to me, because like you, i can be fairly active and bike 5 miles and though feel pretty drained cuz my rates can STILL hit 170 even on beta (and this is flat surface biking, not mountain biking with steep terrain), i dont feel like passing out ..........but for some reason, standing in that cath lab yesterday with 10 pounds of lead on, i started to get light-headed and had to step out of the room.....hopefully i can adjust because my passion for electrophysiology is out of this world. i love it.

so did they think you had IST because you werent symptomatic with dizziness and pre-syncopal spells?

yeah my BP during the tilt at beth israel two months ago was 92/60. the pre-tilt it sat around 107/84. the doc said he could literally watch my BP fighting to maintain a normal state. the only thing i really felt was sweaty and a little SOB with my legs which felt like they were 10times too big.....interesting you mention surges of adrenaline, i can feel that sometimes when i stand up. it feels like every vessel is expanding in my body....wierd...

can you feel your heart racing when you are sitting in the sun and your rates are 160? i think it is so wierd that i cant feel my heart racing.....only when it is over 190 can i start to feel it a little. the docs think it's because i have had this for awhile, maybe since a little kid, and i have just adjusted/compensated.......

like you also, my resting, lying down, and most of the time sitting heart rates (unless i am in the heat) is around 80 ....normal.

fatigue has probably been the biggest symptom i have. along with strange SOB feelings, like my diaphragm wont let me breathe correctly? it is wierd.

[bttrflyamby1981]

I know the highest reading on paper is 134, that's at rest. What it's like when I stand up is another story?

I know when sitting on an average day it's 90 then when I stand up it's 120 and over.

Have not been dx though. My heart is heathy though so that's good.

Amber

[cmtaylor5]

Our circumstances sound very, very similar. I also get the weird breathing thing. I really hated that feeling. Also, I would rather do almost anything than stand in one place holding something heavy. I have never gotten dizzy, but I feel exhausted and eventually, very, very ill after a while. When I'm in the sun, I can often feel my heart pounding. I never associated the sensation with a racing pulse, probably because I just thought it was normal.

After my first episode of an adrenaline surge with resting sinus tachy that lasted over an hour, I became very aware of my pulse rates and found that it was racing lots of times when I didn't know it. I would usually be very fatigued and feel just really crummy. That's when I started to realize that my pulse was so fast sitting in the sun.

I believe I was misdiagnosed with IST for a couple of reasons. The first is because I don't believe my doctor knew anything about POTS. The second is because whenever I was in his office, I as nervous, and my pulse would always be in the high 90's. The third is because I never mentioned to him that I was seeing other doctors for GI issues, breathing difficulty, vision problems etc... I am not a medical person and never in a million years did I think all these things could be related. An internist was seeing me for everything and I think he just thought I was a mess. He would send me to individual specialists and I would only discuss that particular problem with them.

I'm sure that I've had POTS for over 7 years, and it's very possible that I've had it my entire life. I had no way of knowing that rolling over in bed shouldn't make your heart rate shoot up to 165. How could I know that? For me, it had always been that way as far as I could remember.

The thing to remember about POTS is that it's not a disease, it's a syndrome. I'm better, but I still hang around the forum to learn and listen to other's experiences and offer support to people who are feeling like they won't ever get better. The more time you spend on the forum, the more you'll come to realize that there have got to be many, many reasons why different people have been diagnosed. To get a POTS diagnosis, all you have to really have is an increase in heartrate of 30 bpm or over 120 upon standing. The electrophysiologist I see says a normal resting pulse excludes a dx of IST. Maybe it's all semantics, I just know that I live a good life since my POTS dx and I was exhausted and becoming progressively worse before.

Best of luck with your career aspirations. I hope you can find a way to wear that lead!

Carolyn

[Ernie]

oh my gosh ernie! 250!!! were you standing up? does you BP plummit? how often does your rate spike like that? is it sinus tach? how long has it been going on?

I was standing up and I was hooked to 2 EKG.

They think I might have SVT on top of POTS.

[mom4cem]

Sitting to standing about 120's. Then it can level off to 115. I also get episodes just sitting and it can go from 70's or 80's to 120's. These have been caught on a event loop monitor as sinus tachy. The highest I think I had was 160 and that was while sitting my rate was 120 then I got up it went to 160 then to the 130's.

My cardio has said it is sinus tachy. My b/p is usually 110/70 sometimes up to 120/80 and other times lower,,all while sitting. Standing I don't know. I have been told it drops but I've been on a beta blocker for years now.

My rates can also stay sustained for a while before going down, while still showing sinus tachy and slowly goes back.

Cardio says heart is fine, it is some type of autonomic dysregulation. I take atenelol 12.5 2x a day. My rate can go into the 60's or 70's or 80's with it. On a bad day it stays in the 90's (sitting) no rhyme or reason.

Good luck with the career!

[Jacquie802]

Hi,

I also participated in the study. Dr. Bonyhay was AWESOME, what a great man. Dr. Gibbons is my primary neuro, but I am switching to Dr. Novak at Boston Medical because he works right with my EP/Cardio. I was supposed to originally see Dr. Freeman, but it was an 8 month wait to see him!

Jacquie

[cardiactec]

HEY JACQUIE,

yes, dr.bonyhay was great!! he seemed very enthusiastic about cracking the mystery for POTS! ) did he tell you anything about what he observed or found with the research he did on you? did you have jackson as bonyhay's assistant?? he was great also. awesome guys! are you participating in the "part one" of the study? i'm not even sure when it is...havent heard anything about it.

i only saw freeman for like 2 minutes and that was the first time i ever went down to beth israel.

[Jacquie802]

Jackson's a good kid too. I also had Justin before for my first 2 tilt table tests done at BIDMC. It was weird when they did the nerve test in the leg cuz we could hear the communications between brain and nerve...it sounded like static

[cardiactec]

yes, that was weird with the nerve test. did they give you any feedback from the research study? what were your rates during the tilt. I HATED the mental stress test part! haha, oh my gosh, i stink at math! i literally had sweat beads DRIPPING off my face after that. and then later on in the study, bonyhay just said "we are going to do the mental stress test again" and just from him saying that shot my rates to like 135! and then of course with the tilt i was at 200 BPM! what were your rates on the tilt during the research study? were you really symptomatic?