Anybody else have problem with SVT

[rdmc]

This was a new one for me, due to a lesion that messes with my autonomic nervous system, I've had tachycardia and bp issues for a couple years now.

But the other day, I had the tachy hit, and hit hard, so after I'd popped a couple pills that usually work on my bp and rapid heart rate and they didn't, I called 911. I've had to call the paramedics a couple times when my BP was so high my monitor wouldn't register it, but I usually refuse a hospital visit, because once they get a reading if it's no higher than what it's been before which is in the 210/110 range, I just figure the pills will kick in eventually. But this time, they didn't ask me "if" I wanted to go, I was off to the hospital, evidently because the heart rate was so high and the bp was so weird high systolic, low diastolic. It was all a blur to me, I figured I might be having a heart attack because my chest hurt so bad.

5 hours later, I was home with an SVT diagnosis, they used a couple different meds to bring the tachy down, and told me to check with the neuro about getting off Elavil which I had been taking for the "skin burn." Sort of sad about that since it works (and I've had trouble or been allergic to several of the others), but they say it can exacerbate the tachycardia.

I'm seeing my neurologist on Tuesday, up until now, every heart test I've had was always normal, so I put in a call to the neuro, as instructed by the ER doc, to make sure he wanted me off the Elavil. I was surprised when one of the neuros at the University called back. He said they'd run me through the cardio stuff again, then I guess chalk it up to autonomic dysfunction if no new heart issues have appeared. If it turns out to be that lesion, it's amazing how much trouble that one lesion can cause. And for the record, the whole thing boggles my mind, because there just never seems to be any solutions to prevention of these symptoms, just instructions of what to do once they hit. Which if you think about it is sort of true about most of our MS symptoms.

Anybody else deal with SVT and have they linked it to autonomic dysfunction from MS?

P.S. When I was researching SVT, I read a sad article that sort of reminded me of those that are undiagnosed or in limbo land. The hardest part was "not being believed"...because they hadn't caught the rhythm on paper. Here's the link, interesting read and relevant to MS in that those in limbo often experience the same issues.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2267208/

[mjan]

Sorry you have been going through this, but it sounded so familiar to me, before my MS diagnosis. I finally got a primary MD who said her mother had the same kind of run around due to those symptoms and she referred me to a neuro who specializes in Autonomoic dysfunction. I had already had the POTS (tilt table test) and it was positive. Had tried numerous BP meds, none would keep the BP in normal range once I had these attacks.

Turns out I have Dysautonomia an Autonomic dysfunction after seeing the neuro who has the only lab in the Midwest region to test for this. I do not sweat very much at all, and instead of my BP dropping low suddenly, causing most to faint, mine goes up higher and higher till it suddenly falls back down.

So you may want to see a cardiologist and also find out if there is a neuro who specializes in autonomic disorders. Trust me this kind of doc is rare, so is this condition.

Now is this related to MS? Not sure as others have it who do not have MS, but they sure seem to interact at times.

Good luck in figuring this out. Let us know how you are doing and what they find out. You need a POTS or Tilt table test at least, IMO.

Warmly, Jan

[rdmc]

Sorry you have been going through this, but it sounded so familiar to me, before my MS diagnosis. I finally got a primary MD who said her mother had the same kind of run around due to those symptoms and she referred me to a neuro who specializes in Autonomoic dysfunction. I had already had the POTS (tilt table test) and it was positive. Had tried numerous BP meds, none would keep the BP in normal range once I had these attacks.

Turns out I have Dysautonomia an Autonomic dysfunction after seeing the neuro who has the only lab in the Midwest region to test for this. I do not sweat very much at all, and instead of my BP dropping low suddenly, causing most to faint, mine goes up higher and higher till it suddenly falls back down.

So you may want to see a cardiologist and also find out if there is a neuro who specializes in autonomic disorders. Trust me this kind of doc is rare, so is this condition.

Now is this related to MS? Not sure as others have it who do not have MS, but they sure seem to interact at times.

Good luck in figuring this out. Let us know how you are doing and what they find out. You need a POTS or Tilt table test at least, IMO.

Warmly, Jan

Hey Jan,

Thanks for the reply. Yeah, I've looked into the Autonomic Docs and they're really rare. Closest center to me is in Nashville at Vanderbilt. There is a doctor or two here or there, but supposedly the Center in Vanderbilt is the real deal.

I have a lesion in my medulla, so they've always attributed my BP problems to the lesion (even though they did test me for a pheochromocytoma first because it can cause the same problems)..and mine's like yours goes up, but then the part of my brain that tells it to come back down is what's malfunctioning due to the MS. So I pop pills and it brings it back to earth.

Whether this new thing has anything to do with MS, it'll be interesting to see. Maybe this will be something that I just have and can't link it to the lesion. That would make me feel more "normal" (if that makes sense, LOL.)

[BigA]

Interesting topic. I swear my blood pressure was lower after my exacerbation than before and I don't sweat as much either - I used to sweat like James Brown, but now I sweat normally.

My GP says not to go looking for trouble, so I've not pushed it.

[cranberrysauce]

Yes, shortly after I was diagnosed with MS, I would have short spurts of a very rapid heartbeat. I was just starting back to school for a PhD so I attributed it to stress of school and having MS newly diagnosed.

Finally, one day I was working in my lab towards the end of the day. I stood up and my heart began to race. It didn't stop so I went home, I live about a mile from school. I laid down and it was still fast. Finally, after about 4 hours I went to the ER.

The nurse asked what was wrong and I told her my heart was beating VERY fast. She said "how fast?" and I replied I didn't know because I couldn't tell. I meant it was so fast I couldn't count but she began lecturing me on how to take a pulse. Finally, she took my wrist, held for about 2 seconds before she promptly got up and escorted me to a doctor.

My heart was beating 210 beats per minute! They had to use adenosine to stop it. I went to a cardiologist who officially diagnosed as PSVT. I went on atenolol about 6 months but made the decision to go off unless it became a chronic problem. So far, only a couple flutters. I've only had 2 that lasted more than a few minutes since the one that sent me to the ER.

No clue is there's a tie to MS. But, I definitely have PSVT.

[Cat Mom]

My 17 year old step son was born with severe SVT, he doesn't have MS, it was due to his heart. His heart rate would regularly go over 300 beats per minute. Adenisone was the only thing that slowed it down but there were many days that multiple hospital trips we're needed. He has since had surgery and hasn't had an attack in 5 years.

Adenosine is administered by IV but works really fast, almost immediately. Not all hospitals deal with SVT in emerg but we live approx 20 minutes from Sick Kids in Toronto. Not sure if this is an option for you due to it being caused by an MS lesion but it wouldn't hurt to ask.

Pls let us know how you're doing and what your neuro says.
Jen

[tuesdayschild]

PSVT here

Hi. It's terrifying, isn't it?

I'm diagnosed with PSVT (paroxysmal supraventricular tachycardia) and have been for many years (brain fog, can't remember exactly how many).

I take meds for it regularly and we finally have it under good control but if I change something in my routine -- like when I was exercising more or if I'm more sedentary than normal -- we lose the balance between meds and heart rate and it's back to the drawing board.

I hope you can get some resolution. The frustration of not being able to capture an event on paper is hugely frustrating, as you mentioned. I've had 24-hour Holter monitors where the whole 24 hours was normal and an hour after they take it off I have an episode. Very similar to trying to hit just the right combo of things to fit McDonald -- good analogy there.

Best of luck to you as you pursue this. Don't lose the faith. Once you've got good control, however long that takes, you begin to lose some of your fear/anxiety over it and life improves some. That's always a good!

Shelby

[Beema]

I have a question for Jan. I have much like she does and have been diagnosed with autonomic dysfunction. My bp also shoots high when standing and then drops so rapidly I faint. Do you also faint or does your bp just go high and then drop? I am told this is all secondary to my ms plus I had the rapid heartrate and was put on a betablocker so now I have bradycardia which I prefer to the tachy anyday.

[rdmc]

Hi Cranberry and Cat Mom,

Well, I was a little fuzzy in the ER, but first they tried a treatment where they told me I was going to feel really weird with the drug they administered, and then they were going to move my arm quickly up and down...supposedly to send some drug straight to my heart. Like I said I was fuzzy, but my husband said that worked quickly but for all of about a minute or two, then it shot back up. I think that was Aldenosine because I remember them telling me it had a short half life, and when I got home and looked it up, that's what it said about Aldenosine.

So then they hooked me up to a drip of Diltiazam (there were only a couple drugs listed on the papers they sent home with me, and this and Aldenosine, were the only bp meds, other than the drip of ativan they gave me at the end because my muscles were so tight....I also remember him saying they were putting me on a calcium channel blocker drip)....anyhoo that did it's job, but it wasn't immediate. Took a couple hours and once it got down to the 120's they walked me a lap around the ER and it didn't spike, so they let me go home. I'm hoping it was a medication induced thing, not a MS thing, because the ER doc, my GP, and my neuro all three said get off the Elavil (which I did, of course.) Time will tell.

Here's the funny part, when I started getting my whits about me and feeling more normal so I could carry on a conversation, the nurse asked about the weird feeling from the original drug and I told her it didn't feel weird at all to me, LOL, that's how I usually feel with my MS. Just shows to go you, that in our "normal" state, we probably feel weirder than we think we do

What I want some advice from the doc on would be how long to let that go on before I go to the ER. I'm used to giving my BP awhile to come down, but the chest pressure, and shakiness that went along with this made it impossible to do anything but lie on the bed. I felt really lightneaded.

[rdmc]

Hi. It's terrifying, isn't it?

I'm diagnosed with PSVT (paroxysmal supraventricular tachycardia) and have been for many years (brain fog, can't remember exactly how many).

I take meds for it regularly and we finally have it under good control but if I change something in my routine -- like when I was exercising more or if I'm more sedentary than normal -- we lose the balance between meds and heart rate and it's back to the drawing board.

I hope you can get some resolution. The frustration of not being able to capture an event on paper is hugely frustrating, as you mentioned. I've had 24-hour Holter monitors where the whole 24 hours was normal and an hour after they take it off I have an episode. Very similar to trying to hit just the right combo of things to fit McDonald -- good analogy there.

Best of luck to you as you pursue this. Don't lose the faith. Once you've got good control, however long that takes, you begin to lose some of your fear/anxiety over it and life improves some. That's always a good!

Shelby

Hey Shelby,

Well, I went through the same anxiety when my BP started going berserk. After lots of tests all the docs could do was hand me a bottle of pills and say when it starts going high, take these, wait, if it doesn't bring it down, take another, and then head to the ER to have it monitored if it stays high.

Finally gotten sort of used to dealing with it, and always carry my BP pills with me, but this was scarier than the BP thing because the BP thing gives me a massive headache and blurred vision, but I can still walk around. In the shape I was with the SVT, I don't think I could have walked anywhere.

Don't know if it's MS related, but it goes back to that "acceptance" place that we're supposed to get to. Well just about the time you reach acceptance on one level, something else crops up.

I'm going to talk to the doc on Tuesday about something to deal with the emotional havoc these types of things play on your mind. Must be some med to help. Wish there was some symptom normal I could get to...but just hasn't been my case this last year or so. I will say to those reading this...my MS was very stable for very many years, so this is just the result of long term disease, IMO.

I'm pretty much home bound anyway, so it's not like it's going to limit my life anymore than it's already limited. I just remember what Richard Cohen says, "Progressive diseases progress" (even though I have no clue if this is MS related or not)...and try to take it in stride (but my "in stride" coping mechanisms are pretty much exhausted, LOL.)

Isn't that article good...I think I'll post it on the limboland forum because as you said, McDonald can play the same games with someone's head.

Thanks for the encouragement.

[mjan]

I have a question for Jan. I have much like she does and have been diagnosed with autonomic dysfunction. My bp also shoots high when standing and then drops so rapidly I faint. Do you also faint or does your bp just go high and then drop? I am told this is all secondary to my ms plus I had the rapid heartrate and was put on a betablocker so now I have bradycardia which I prefer to the tachy anyday.

Hi Beema. I do not faint when it drops, but sure feel like it. I have to lay down for sure.

Actually my episodes are often connected with my kidney dysfunction and I end up unable to respond often, and paralyze for hours..but.. I can hear! Go figure. It has been under control now with meds or it is milder and infrequent. I am on a sm dose of beta blocker and carry an extra pill when I feel it coming on.

Good luck, hope you remain stable~

Jan

[Beema]

Thanks Jan. I have hypertension normally and was on 3 bp meds. Then in 2007 I started fainting after I stood for a few minutes and they found my bp was taking a nosedive. They have me on a calcium channel blocker for the bp and tachycardia which I had for years along with 2 other bp meds. They added a betablocker in 2009 after a bad fainting episode. It has helped somewhat but I still can't stand for more than 3-7 minutes and now my heartrate runs in the 40-50 bpm area. The electrophysiologist wants it to stay under 70 for some reason.
I am glad you don't faint but I think the presyncope is almost worse feeling. My drs say I am a medical mystery. I have ms, autonomic dysfunction, RA, osteoporosis, fibromyalgia, svt, osteoarthritis and now they think maybe lupus. it just seems like it never ends doesn't it?

[mjan]

Thanks Jan. I have hypertension normally and was on 3 bp meds. Then in 2007 I started fainting after I stood for a few minutes and they found my bp was taking a nosedive. They have me on a calcium channel blocker for the bp and tachycardia which I had for years along with 2 other bp meds. They added a betablocker in 2009 after a bad fainting episode. It has helped somewhat but I still can't stand for more than 3-7 minutes and now my heartrate runs in the 40-50 bpm area. The electrophysiologist wants it to stay under 70 for some reason.
I am glad you don't faint but I think the presyncope is almost worse feeling. My drs say I am a medical mystery. I have ms, autonomic dysfunction, RA, osteoporosis, fibromyalgia, svt, osteoarthritis and now they think maybe lupus. it just seems like it never ends doesn't it?

WOW that is way too much ..sorry. I wonder if you could find a neuro who specializes in Dysautonomia? They have ways to tweek this stuff. And I would recommend finding a Dysautonomia forum. There you will learn from others who have it, how to live with it, treatments that they are on etc.

Good luck..geez.. ENOUGH!!

Warmly, Jan

[Cat Mom]

What I want some advice from the doc on would be how long to let that go on before I go to the ER. I'm used to giving my BP awhile to come down, but the chest pressure, and shakiness that went along with this made it impossible to do anything but lie on the bed. I felt really lightneaded.

rdmc, I would go as soon as you feel like you need to. For my step son, we were told to go ASAP but he would be ok for 2 - 3 hours if necessary. Obviously, it does cause wear and tear on the heart so the sooner the better.

This is going to sound nuts but 2 tricks that we were taught to slow it down were 1. To put his thumb in his mouth like he was going to suck it, but blow really hard like his thumb was a whistle and 2. A super quick drink of ice cold water. I don't know if these things only work for children but sometimes either 1 would do the trick.

Please let us know how you make out at the doc, I hope you get some answers that ease your mind.
Jen

[rdmc]

rdmc, I would go as soon as you feel like you need to. For my step son, we were told to go ASAP but he would be ok for 2 - 3 hours if necessary. Obviously, it does cause wear and tear on the heart so the sooner the better.

This is going to sound nuts but 2 tricks that we were taught to slow it down were 1. To put his thumb in his mouth like he was going to suck it, but blow really hard like his thumb was a whistle and 2. A super quick drink of ice cold water. I don't know if these things only work for children but sometimes either 1 would do the trick.

Please let us know how you make out at the doc, I hope you get some answers that ease your mind.
Jen

Thanks Cat Mom,

I've read that putting your face in ice water can help. But since I know I was in no shape to get out of bed, much less get the sink filled with ice water, I have been carrying a glass of icewater around with me. Figure if it happens again, I'll try the icewater on face trick. Thanks for the others tips, they sound along the same thinking.