cardiactec

Hi, My doc started me on a med they use for MS patients -- mainly for my gastroparesis. I have tried EVERYTHING for my terrible nausea and problems eating -- everything -- pro-motility meds, SSRI's, you name it, I've tried it. So in a last dig attempt to spare me for gastric surgery (GI pacer) my neuro wanted me to try baclofen -- I have been on it for a week and a half and I have seen some pretty good results in being able to eat more, not being to nauseous.........ALTHOUGH, taking this med at first has come with some pretty horrific side effects (major dizziness, light-headed/ cloudy feeling) but about 5 days into taking this med, it is now slowly subsiding... this med has helped me the most, so far, with my terrible stomach problems -- I'm not even sure how it's helped though, because the med helps to relax skeletal muscle rigidity in MS patients -- and if I remember correctly from my anatomy and physiology class days, the GI tract is lined mainly with smooth muscle -- two different type of muscle we're dealing with here (and maybe doctorguest or someone who is knowledgeable in this could chime in if i'm wrong) .....I guess I dont really care though what the mechanism of action behind the drug is, because it seems to be working! -cardiactec.

I failed to sweat over my right leg and left arm -- so they called it "nonspecific" for small fiber neuropathy. gotta LOVE the "nonspecific" findings!! I think the sweat test ITSELF is a "nonspecific" type testing and is more conclusive when used with more substantially based, more reliable tests. I was told my dr.low that they check for autonomic neuropathy with several tests together, and not simply based off of JUST the sweat test -- because it tends to be more inconclusive and "nonspecific".

I dont know -- I was told it helps with nerve transmission -- to better the neuronal pathways, especially in people with syncopal events -- somehow its supposed to inhibit the response of nerves that lead to and from the brain (afferent and efferent nerve pathways) that can cause smooth/skeletal muscle to vasodilate which in turn can lead to syncope and/or the sensation that you're going to pass out. overall, and to put it simply, they say that it is supposed to help nerve conduction. not sure if that is completely true or not or what research/testing has been initiated to prove this. not even sure if this info is accurate, but just what i have been told.

Thanks Rachel! I'll let you know what happens!

Just got the monitor put on today -- it is a loop event -- so you hit the button when you have an event and it records 45 seconds before you actually hit the button and 15 seconds AFTER you hit it.....the nurse said that I could keep it for a full month if by two weeks I havent had an "event"....I really want to catch this thing to look at what the rhythm is myself ! lol. when the nurse grabbed a baseline today, she came back in the room after like 20 minutes of being gone and said "well, we got a baseline, your heart rate is 130, you must not want to be here or something" ...lol, if ONLY that were the case, how THAT MUCH easier life would be!! lol. I brielfy just told her i have pots and that is actually a good hr for me! lol.

so I wonder what the point is to catch it if I'm already doing the things (treatments) that they'd utilize to inhibit the rhythm (beta blocker)? just for mere documentation (dont get me wrong, I DEFINITELY, want to catch whatever it is)? I have been telling the docs for years that I suspect something other than pots going on, because i present differently, i think, than general pots patients - so for this, if they WERE to catch a true SVT or heaven forbid (which i doubt it is) v-tach, than i'd want them to do an EP study..........I wonder if they would even bother to do one if they found a true SVT since i have underlying pots? flop, why did they pursue an EP study with you after they diagnosed your atrial tach via monitor if they werent going to ablate/target the ectopic site causing the rhythm disturbance? jeninohio, how come they didnt do an EP study on you after they confirmed you had another rhythm occuring other than sinus tachy, because you were/are symptomatic with it, right? is it just personal preference that you choose not to have an EP study?

well that is why i am wondering if i should go off the high dose of beta i'm currently on -- so it cant be "masked" or covered up as much....maybe this is something i should ask my cardio? you and flop said that once you went on beta for the svt and/or POTS, that the true SVT went away .....well i am on 80 mg's of beta, and though they are happening infrequently, i am still getting runs of something while i'm on the beta.....?

As already stated, this is a HUGE risk take...... I have seen TOO MANY TIMES working in the hospital setting patients that have almost died or HAVE DIED from lengthy IV port a cath, PICC, and central line use. It isnt worth it in my book no matter how sick you are with your pots. Unless it is life or death situation, I would do everything possible to avoid long term usage of IV line. It is not very safe and i'm sure if someone pulled some statistical data on long term IV use and sepsis, the results would be overwhelming frightening. hope you can find some alternative treatments that better your symptoms... cardiactec.

both you two describe ME to a T. I cannot even tell when I'm in a sinus tachy at 190 from the POTS, I NEVER KNOW and I always think it's the weirdest thing because you'd think with you heart racing so fast, YOU'D FEEL IT .....however, I DO FEEL this other thing that is occuring, whether it happens sitting, standing, lying down -- it happens in all positions and it's very abrupt onset and offest -- I know beyond a shadow of a doubt it is not from a sino-atrial origin because of how it feels -- quick onset and offset, VERY abrupt... my cardiologist is having me get an event monitor put on this friday, for two weeks. I hope during this two week time period that i'll be able to catch whatever this rhythm is -- i'm suspecting a non-sustained multifocal atrial tachy or intermittent rapid a-fib because the rhythm, when it does happen, usually 7 or 8 beat "Runs", feels quite irregular and fast.....dont know though until morphologically it can be evaluated on a strip........ keep your fingers crossed that I can catch this thing! it's ANNOYING me!

Jeninohio, how do they or you differentiate your symptoms from your true SVT and POTS (the sinus tach)? Is it clear to you which (the sinus tachy or the runs of SVT) causes you to be symptomatic more? one over the other? So I am guessing they caught both sinus tachy from the pots AND these runs of some form of atrial tachy with you? It would be interesting to see if your problem is more cardiac related or autonomic since you have BOTH pots and true SVT. they are both definitely highly connected to each other, as cardiac system is innervated by the autonomic nervous system - but i'm curious just how much is causing one or the other to occur.... tammy, have you ever been on an event monitor for 3-4 weeks or does this sensation you are getting happen more infrequently so that they probably would have a hard time catching it in a 3-4 week time?

It is very safe. safer than general anesthesia. I have had it, it basically blocks your ability to remember any of the procedure and puts you in SLEEPY LAND! I'm sure you'll do okay with it.

OH YES --- ANOTHER AWESOME Part of an article I put in to my report explains a scenerio given in order for a physician to understand what an individual with pots experiences on a daily basis -- I thought this was pretty cool to add into my report, as it gives food for thought, it really paints a very precise and CONCISE picture for those who DONT know what it's like to TRY and AT LEAST understand PHYSICALLY what it would BE LIKE to have to deal with POTS on a daily basis. VERY GOOD SCENERIO given. the site is: Experiment for Doctors, Christopher Calder -- http://home.att.net/~potsweb/mindexperiment.html

Hi there, Good luck with your paper. I wrote a paper for one of my cardiovascular technology courses about POTS. I think the most informative of all for my classmates to see and for the professor also was to see the primary diagnostic test results of tilt in a group of people with suspected pots. I got some wonderful info on this, taking about 35 patients, revealing responses to hear up tilt -- this was research testing that was performed on the pedi population though (patient 18 and under) so it excludes the adult patients who struggle with pots. It is still very good info and pulls numbers for both supine and upright tilt BP and HR within first ten minutes and then also responses of these 35 patients to isoproterenol injection. VERY cool to see the actual numbers in these patients from supine to stand, and also symptom correlation, and last but certainly NOT least, the therapy for each individual patient based on their responses to tilt with BP and HR. It is put in categorical approach, not in graphs with dots and lines that could never be interpreted or understood by the average joe shmoe, so it's reader friendly. On top of adding THAT info into MY research report on POTS, I also included my very own tilt table test report -- which was also in a categorical form, outlining my HR and BP responses to every one minute of being both supine and then upright. I think it wasnt until my classmates and professor saw THIS info, the actual numbers and symptom correlation that they realized just how devastating and challenging it can be to live with this condition -- as every time you are in upright position (which constitutes the majority of a NORMAL day for the "NORMAL" individual) you are symptomatic and you can very tachycardic and/or hypotensive. For some reason, I think it is hard for people, even in the med field, to try and JUST understand symptoms, but it is not until they see the VISIBLE pathophysiologic reflections/responses that are PRODUCING or leading to such symptoms (blood pooling - ie: the muddled purple appearance to the lower legs, tachycardic numbers while upright, potential hypotensive numbers while upright, etc) that they really see the significance and severity of such a condition.......another good site is Julian Stewart site, demonstrating with the picture of the woman whose leg circumference changes dramatically from blood pooling in upright position -- along with that, the intense dark muddled purple appearance to her lower extremetities. I'd definitely include THAT in your report as well. The site for that is: http://www.nymc.edu/fhp/centers/syncope/POTS.htm as for the site that gives 35 patients responses to head upright tilt, I'm not sure if you can still get it online "for free". I found this, which is the abstract to the article but I was unable to locate the full article without having to subscribe or pay for it. I was able to get the full article two years ago online without subscription or purchasing. The article is called "The Postural Orthostatic Tachycardia Syndrome: A Potentially Treatable Cause of Chronic Fatigue, Exercise Intolerance, and Cognitive Impairment in Adolescents ---> http://www.blackwell-synergy.com/doi/abs/1....2000.tb06760.x

Just wondering, I know I have spoken with some of you (flop, jacquie, etc) who not only have POTS but HAVE HAD or currently DO HAVE diagnosed TRUE SVT -- Can those of you who have had or currently DO HAVE a TRUE type of SVT (NOT sinus tachycardia) that has been definitively diagnosed tell me a couple things: 1. How'd they diagnose it (holter, event, EP study, loop, etc) and how long did it take them TO capture it? 2. What were your symptoms? 3. What have they done (ablation, meds,etc) to eliminate the SVT. 4. WHAT TYPE of SVT did/or do you have (atrial tachy, mutifocal atrial tachy, atrial flutter, atrial fib, SA nodal reentry, AVNRT,etc) Look forward to hearing from you true SVTers. cardiactec.

So.....I started taking a med called baclofen to see if it helps my stomach problems out any......Over the past two years, VERY intermittently, I have felt what seems like flutter sensation in my neck for a good two minutes straight or so....Lately, it seems that they have been more frequent. I dont know if it is coincidence that being put on different meds (ie: florinef, now this med) is just increasing my suceptability to whatever this rhythm disturbance is or what......but last night, after brushing my teeth, I started to feel woozy, so strapped my BP cuff on while standing and it read 86/50 BP and HR 178. I put my hand over my chest to feel if it was really going that fast and it definitely was -- but it felt regular to me. I went a laid down and it immediately felt like my HR plummeted out in my chest and was beating very forcefully and slow. I put my finger on my radial to check my pulse and left it there for four minutes. during those four minutes I felt a very slow but regular pulse and then abruptly go into this 6 or 7 beat fast irregular rhythm........it then would go down to this slow regular rhythm. it did this back and forth for four minutes and then it ended..........I wished to God I had been on a monitor at that point because I KNOW this is some messed up rhythm. I called the neuro and told him all about it - he said it didnt sound autonomic related at all, but sounded more like a cardiac problem and to call my cardio. I have done so, just wondering what the cardio will say...... I ALMOST got up to drive myself to the ER at midnight last night to see if this could be caught on a monitor, but as murphys law is, when I was about to get up to go, it stopped. EEERRRRRGGGG. I just dont want to go through the hassle of putting on an event monitor and then them not being able to catch anything! It'll frustrate me even more! -cardiactec.

Nina, I will be praying for both you and your stepfather. Take care and please keep us updated on how both you and your stepfather are doing...... -Angela.

What dose are you on and what types of betas have you tried?

Did you just start this med? I'd give it some time, even though you're having a rough time at the moment, if you have just start on the med, it might just take some time to adjust.....I'm surprised you are having a hard time sleeping on a beta, they make me want to sleep all day! Wish I could do without them some days just cuz they make me so tired, but I can afford to be off beta, since my rates are about 200 OFF them.... What dose are you on? Have you tried this or other betas in the past? if so, for how long and did you have the same response? Take care Tammy and hang in there. cardiactec.

Hi Tammy, Sorry you're having such a hard time.... While the comments here about delayed tachycardia after activity that occurs at rest due to autonomic dysfunction could be the problem and definitely could be the case, if it seems like something "new" to you, especially if what you are feeling is a sudden fit of tachy and/or if it feels very irregular, you might want to further investigate..... irregular rhythm of what you feel as being irregular could mean many many different things : sinus arrhythmia can cause that (a variation of normal -- caused by respiratory variation -- breathing in, breathing out), an underlying normal sinus rhythm (or sinus tachy) with ectopy (single PAC's or PVC's - common in people without pathologic findings), etc......it is certainly hard to differentiate the above from possible more potential pathologic rhythms that are irregular -- such as intermittent atrial fibrillation, atrial tachycardia (a run of three or more PAC's is defined as "atrial tachy" but is more regular than irregular in nature, unless a multifocal atrial tachy (severals different areas in the atria causing a tachy)....... I guess my questions to you would be does this feel like something new, this tachy that occurs while at rest? is it abrupt feeling (the tachy?) and does the offset feel abrupt in nature or is it more a gradual slowing/gradual offset? Take care and hang in there. cardiactec.

Dawn, I understand what you mean. seriously, who WOULDNT be depressed having to deal with all this? Sorry you cant do many things you were once able to do -- I guess I should be happy that I am still able to work -- but find myself pretty depressed in not being able to do the type of work in the field of cardiology that I want to -- because of POTS.....it's tough and wears on you emotionally. depression is normal to feel when dealing with chronic illness. ...so I completely understand. I took the test and it came back saying "somewhat depressed". I agree with the test too and dont think it's a bunch of nonsense. it is rough having to deal with POTS, and definitely takes a toll, at least ON ME, emotionally. so I'm right there with you dawn.

Has anyone tried baclofen for gastroparesis? My neuro had me try lexapro for two weeks to see if there was any improvement with my symptoms (nausea mainly) and it didnt help at all, actually decreased even more what appetite I DID have before taking the med......so now he wants me to try baclofen in a last dig attempt to see if this med helps with my stomach..... anyone ever try this med? -Angela.

I havent seen him -- yet (have an appt to see him in december), but those on this site that have seen him say he is absolutely WONDERFUL. His name is Blair Grubb, he is an electrophysiologist and specializes/interests in POTS/autonomic dysfunction. He is in Ohio. Perhaps someone could give you more info on him. Good luck and sorry for all you are going through.... -Angela.

Just wondering, seems to be a lot of people on here that are very sensitive to beta blocker. beta has been the only med to help me. I am currently only taking beta blocker and do just fine with it -- no light-headedness or dizziness and it slows the tachy -- to a point -- around 110 standing from 190 standing without beta. Is anyone JUST on a beta blocker to control symptoms and is it helpful to you?

Hi Lauren, yep, you sound like me! lol. normal for a sinus tach, but obviously, as we all know, not fun at all.....250 though, even for a minute or two, is still quite high for sinus - but as i said, i suppose it can happen. nothing is truly ever black and white in medicine! like, for example, the other night (i'm a cardiac tech) we had a patient come in who was in SVT (a true SVT, not sinus tach) and I showed her ekg to the doc - the doc said that she couldnt be in SVT because true SVT occurs at 150BPM and over and this woman was only at 145 BPM. it's basically all in how the rhythm starts and ends that classifies it as a sinus tachy or a "true" SVT (coming from an ectopic site in the heart)..............so yeah, generally we say SVT is from 150+, but because this woman hadnt hit 150 or over, the doc didnt believe it was true SVT, until he saw her rhythm convert! ;o) Have you tried a low dose beta? I know for me (and i know everyone is different in how they respond to meds) but with my rates being so high, the one med that has helped the most is my beta blocker -- and that's all i take.....i'm probably not the typical pots patient though, so for you, you might need something different....just wondering if they had tried you on a beta? take care, Angela.

Hi Lauren, Welcome to the forum. Are they sure your tachycardia is sinus tachycardia? a heart rate of 250 is very much out of ''normal'' ballpark for the typical pots patient or for a sinus originating tachycardia.......I have gotten up to 210 before, but that one only on one occasion.....mostly between 180-190 if i'm not on meds......250 BPM isnt necessarily that common with sinus originating tachyarrhythmias, though i suppose it can happen. What are your rates supine? Have you tried beta blockers? With rates that high, I would think a beta blocker would be in your best interest......but you'd have to be careful in picking one, some work more on BP along with HR, and if you are hypotensive to start, you'd need a beta that acts less on dropping out the BP....or make sure you counteract the effects that beta can have with extra salt in the diet,.,,,, Take care and I hope you get some help for your symptoms.. Angela.