cardiactec

I am going in next week (tuesday) for endoscopic botox injections to try and help alleviate my nausea/problems with eating/weight loss from my gastroparesis...........the doc said that they generally have pretty good results from it, at least for 6-8 months.........he said patients are less symptomatic and are able to eat better....... ....he said if this doesnt work, he wants to try the gastric pacer........i was told down in boston by a GI doc that gastric pacing is not a good recommendation for pots patients though, and that in the majority of cases gastric paci, it had a low success rate...i have heard majority of patients that DO benefit from the gastric pacer are patients with gastroparesis secondary to diabetes (which i dont have).... anyway, hopefully we dont have to get to that point in discussing gastric pacing and that the botox injections work.... wish me luck......and send me your prayers.. cardiactec.

I know some of you were/are recently questioning the difference between 2 hour and 4 hour gastric emptying study for gastroparesis diagnoses..............I found this info online. hopefully it helps some of you.... --------------------> "The diagnosis of gastroparesis is confirmed through one or more of the following tests. Some centers still use a barium beefsteak meal to look for problems of stomach emptying. Yet, this test is not at all reliable for detecting delayed gastric emptying. The barium contrast material is a liquid and is much heavier than normal food. Therefore, gravity allows the separation and movement of barium out of the stomach and does not give meaningful information regarding the stomach's emptying power. A GET, or gastric emptying test, is commonly used to diagnose gastroparesis. Using a method called scintigraphy a gamma emitting radioisotope is integrated into a selected food item, often scrambled eggs. Multi-centre clinical trials have established international standards for this test. The meal is eaten and images, utilizing a gamma camera, are taken of the stomach over a period of up to 4 hours. While the American Motility Society is working to standardize the GET tests, presently the duration at which Gastric Emptying Studies are carried out, as well as the test meals used, can vary significantly from institution to institution. Research has shown that the diagnosis of Gastroparesis can be missed in some individuals if the GET is carried out for only two hours - and some centers still use a two-hour study. A multi-center study has established normal ranges for gastric emptying in healthy subjects at time intervals of 60, 120, and 240 minutes after completion of a consistent radio-tagged low-fat meal. Average gastric retention in healthy subjects; at 1 hour, 2 hours, and 4 hours was 90%, 60% and 10% respectively. These values are for adults only. Standards have not been established for children. The 4-hour Gastric Emptying Time is now becoming the standard test, using a low-fat egg substitute meal to minimize the effect of fat on gastric emptying."

radha, did you ever try the sotalol? (i remember our convo a few months back and wondered how you were doing with it).......

Thanks Nina for the websites... I, too, was quite confused in regard to botox, gastroparesis, it seeming to be counterintuitive....but hey, if there is proof in some that it helps, I'll do it! No pro-motility meds have helped me out any......unfortunately..... .....I am surprised i have dropped so much weight because I have been eating the same amount of food as usual, though have a difficult time with it as i'm nauseated most of the time.........

hi, i saw my doc today about persistent nausea and loss of appetite as it pertains to my gastroparesis...........i have dropped out 10 pounds in the past couple weeks and cannot afford to lose any more weight (i'm 5'8' and weigh 116)..................my doc is recommending botox injections in the stomach to help alleviate nausea, help with dysmotility,etc....... have any of you had this treatment? did it work/help? how long does the botox treatment alleviate symptoms? i heard every 6 months you have to get this procedure done for it to continually help with symptoms...........

hi all, thanks for your care, concern, and personal stories regarding ablations........ i saw my cardiologist today and he still confirms this as pots and said that i am the worst case he has seen. i asked him how so, and he said "just your vital signs alone are remarkable, most of the pots patients i see have rates in the 130's and yours are in the 200's"........i asked him their level of function and he said "minimal". ............so then i told him that my level of functioning isnt "minimal", probably in between min and max and he said that just number wise i am the worst and that i have other "hints" and "clues/signs" of other autonomic problems (talking about my gastroparesis and some other things).... maybe it is pots...........i just dont want to admit to that because i want this to be a quick fix condition, and we all know POTS is not! i will learn to accept this somehow......... by the way, i see blair grubb in december - i have heard wonderful things about him and if there is anyone who can give me some info/insight into my case/my concerns with ablation/EP study, i know HE can..... thanks again to you all for responding to this poll.... -cardiactec.

did they follow your ECG with cardiac enzymes (blood work?) - generally, they utilize both to confirm the diagnoses of a heart attack....generally, especially in the case of diagnosing a heart attack, they run a set of cardiac enzymes along WITH an ecg......ecg alone can sometimes be misleading -- especially in the case of "old MI" ....sometimes distinguishing between "old MI" and "normal septal depolarization" on ecg can be tricky......for old heart attacks the ecg shows Q waves on ecg in two or more leads facing the same anatomic position of the heart, but q waves can also be seen representing NORMAL septal depolarization....it all depends on the duration and depth of that q wave to distinguish between the two and sometimes that is difficult....sometimes the cardiologists i work with dictate our ECG's saying "Q waves noted, possibly old MI" because sometimes it is hard to differentiate PATHOLOGIC q waves from NORMAL septal depolarization q waves.....when it is black and white they dictate "OLD MI" but sometimes it's just not that easy.....cardiac enzymes and/or cardiac catheterization is generally also utilized to confirm or refute such a diagnoses.... i am surprised, if they thought you had a heart attack, that they decreased your beta?? usually they put patients ON beta to help the heart out because an MI causes stress on the heart and bets helps to reduce the workload of the heart (and in the case of a heart attack, the workload of the heart is increased to make up for damaged/dead cardiac muscle.... also, how is your BP? is it high or low?? i have had SOME training in post MI recovery patients and one thing specifically i remember being told is that post MI patients should have a LOW SALT diet because salt loading can lead to hypertension and cause increase work load of the heart.... obviously i dont know your situation that well and am just telling you, in general, what i know to be true for POST heart attack patients...........your situation may be different and i certainly dont want you to go against a cardiologists orders for you............... take care, cardiactec.

thanks susan for your care and concern. i see my cardiologist tomorrow for my 6 month follow up - so i will mention it to him tomorrow.

do any of you have problems with acne or other skin blemishes?? i have tried EVERY product to help with skin breakouts and none have helped clear my skin. ...i am 25 and have problems with acne/skin blemishes since about 14 years old.........i thought i'd grow out of it by now, that it was an "adolescent" puberty type thing, but still having breakouts.......i tend to have problems with my chin, forehead, and my upper back/shoulders....... if any of you have suffered with complexion problems, do you have any suggestions for treatments? i have heard so much about proactiv but have never actually tried it......i am wondering if it actually works the way they say it does.....?? p.s. by the way, the only thing that has somewhat helped was birth control............but, after being on birth control for years, i felt it was time to go off of it as i dont like some of the risks associated with being on birth control - plus it's expensive and my insurance doesnt pay the full cost for it!

hello, i'm not a worry wort by any stretch of the imagination.... this is more of a desperate want to sum all this stuff up as something someone can FIX so i can live like a normal 25 year old. that is awesome that your father in law does so much stuff, even with all his health problems. i certainly dont stop myself from much just because of my health struggles - BUT that being said, i DO KNOW where i struggle physically, and because i know my limitations (not my worries), i want to try and target those limitations with a way to remedy what it is that is limiting me - for example, i want so very much to work in a sub-specialized part of cardiology but i cant - not because i'm worried that my heart will explode or go into a strange rhythm, but because physically i am unable to carry out job tasks in the specialized part of cardiology BECAUSE of whatever this is that is going on - tachy, pauses, etc.........it hinders my ability to physically function because it makes me nauseous, fatigued not because i'm worried that if i just "do it", that something bad will happen with my heart. not a matter of worry at all, more a matter of just wanting to truly pinpoint this problem so the problem can be addressed and taken care of .....actually, to be honest, i have already forgotten about the events of the nurse hearing the pause - i didnt and never have felt anything in particular in my chest when things occur anyway, and was actually surprised that the nurse heard what he referred to as a "long pause" in the first place cuz i never felt anything. actually, i was found to, at the beginning all of this at just a routine docs appt to have a heart rate of 200 when didnt even go to see the doc in the first place for any sensations of my heart beating fast or anything like that - i actually was just being seen for nausea -- SO I THOUGHT!.........and now all this.....i know a lot of people, they may feel the slightest thing that their heart does and are held in fear because of it, but this isnt me at all cuz i am not even aware that my heart is beating at 200 or pausing or whatever everyone says it is doing! the only thing, just recently, that i have been aware of is when i have passed out, with my HR plummeting in my chest - which was definitely freaky -- but once again, still didnt let it get to me cuz i went to work, for a 12 hour shift the next day! lol! call me crazy! haha. thanks for sharing your story of your father in law though. sounds like a wonderful person, full of life!

masumeh, good point -- i thought that as well -- since i have gastroparesis and simple IST would not explain the finding of gastroparesis - gastroparesis has many different etiologies, one being a problem of autonomic innervation .......... i guess the whole reason behind me starting this post is that i dont get the dizzy, light-headed symptoms that i have been told goes with "ALL'' pots patients. i do not have this. actually my GI problems are the worst out of everything, but does that explain the tachycardia as being POTS/auto dysfunction? (if it is pots?) ....i know someone who has gastroparesis who does NOT have pots.......so i guess you cant really say that my HR is going crazy with postion change because of auto dys just because i also have other findings of auto dysfunction like gastroparesis (bcuz there are people that have pots that do not have gastroparesis as well as people with gastroparesis who do not have pots)......it would be nice to say that because i have findings of gastroparesis which is a type of GI autonomic dysregulation, that we could definitively think that my tachycardia is also from autonomic dysfunction............... ....hard to say, but i see what you're saying -- that because i have GI involvement of auto dys, that it is more a "confirmation" type deal that my tachycardia is also from autonomic dysfunction?

masumeh, it's not that i feel i need verification or need to put more faith in doctors opinion. the reason why i want my doc official stamp between IST and POTS is that if IT IS IST, than i would need a doc to add the "official stamp" in order to procede with the treatment FOR IST which is with ablation -- i cant "treat" IST by myself, so i need a doc to add the stamp to provide treatment that i myself cannot remedy or get myself (i cant do an ablation on myself to fix my problem, unlike you who can take care of your carpal tunnel without having a doc TELL you it's carpal tunnel/go on with treatment etc) .......... beta blockers are used for IST AND POTS, but are very annoying to take and actually can add more symptoms than help to take care of the primary reason/symptoms of why you first started taking beta in the fisrt place (hypotension, fatigue,etc), and also, beta's dont eliminate my tachy completely.........so this is why i seek a docs perspective, because i cannot permanently treat the problem myself, even though i am very well trained in cardiology and know my body very well, better than docs. in the end, it doesnt matter if i know my body better than docs because until a doc agree's to agree with what you think the problem is, the problem cannot be addressed in many cases -- yeah if it was poison ivy, i could probably treat it "over the counter" without seeing a doc, but in this case, it is different because the treatment for IST isnt "over the counter". this is what i found for the difference between IST and POTS: Inappropriate sinus tachycardia (IST) Also known as chronic nonparoxysmal sinus tachycardia, patients have elevated resting heart rate and/or exaggerated heart rate in response to exercise. These patients have no apparent heart disease or other causes of sinus tachycardia. IST is thought to be due to abnormal autonomic control. Postural orthostatic tachycardia syndrome (POTS) Usually in women with no heart problems, this syndrome is characterized by normal resting heart rate but exaggerated postural sinus tachycardia without orthostatic hypotension. ALSO --> "It is important to differentiate between patients with POTS and those suffering from inappropriate sinus tachycardia (IST). There are similarities between the hyperadrenergic form of POTS and IST. Clinical presentations are similar and IST appears to be more common in women. Both conditions display an exaggerated response to isoproterenol infusion and some investigators have suggested that they may represent different aspects of the same disease process. POTS patients, however, display a greater degree of postural change in heart rate and the supine (resting) heart rate rarely exceeds 100 beats/minute (as opposed to IST where the resting heart rate is often more than 100 beats/minute). In addition, IST patients tend not to display the same degree of postural change in serum norepinephrine levels as those seen in hyperadrenergic POTS patients. The differentiation between POTS and IST is important as radiofrequency catheter ablation of the sinus node can make PD POTS patients markedly worse, and rarely seems to benefit patients with hyperadrenergic POTS." rqt9191, my neuro told me that pots is defined by a 30 BPM increase in HR WITH accompanied symptoms and not based on HR increase alone. HR increase isnt a symptom. i think even blair grubb, in one of his writings says this as well -- both HR increase of 30 BPM or more from supine to stand WITH symptoms makes for a diagnoses of POTS....

worththewords, why did you have a tilt in the first place? what were your symptoms when diagnosed with IST, before ablation and post ablation?

have you been checked for pheochromocytoma? this can cause episodes of what you are describing -- high BP, sweats, high HR, surges, etc...........

I just think that people with IST are less symptomatic than those that have POTS -- and i have been telling my doc this for years, that i think this is more IST than POTS..........he said that because position is the main trigger for the tachycardia that it is POTS, but i dont get many of the symptoms pots patients have that are so life altering (and dont want them either!!). i am just saying that, because i am somewhat limited, especially at work with that i want to do -- work in EP lab) and i feel this is more IST than POTS, i want an ablation to get rid of this so i can have a MORE productive life...........if docs are making comments like "wow, you look great" and "this isnt typical of pots patients at all" than perhaps it isnt pots and is IST! i'd rather have neither, but if had to deal with one over the other, i'd want IST because they can ablate and address the problem..... now, more than ever though, i think the docs still go with the whole POTS diagnoses more than anything else, even though i am no where near as symptomatic as some pots patients, because i have definite gastroparesis ( signs of GI autonomic dysfunction) and also a lot of pooling in the legs when upright.....and potentially esophageal dysmotility on top of that.......i guess if it were strictly IST, i wouldnt have these other problems -- signs of GI auto dys and isigns of pooling in the legs..............?? i'm glad i am only minimally symptomatic, but a big part of me wishes this were just IST because there are things i cannot do function wise because of this..........to say it's IST would be like saying "we can fix this next monday at 2pm and by tuesday morning you NOW you can do ALL things you wanted to but couldnt before us fixing this" ............. i guess you could have gastroparesis alone with no other autonomic issues, right? and as for the pooling, i dont think the docs have quite figured THAT ONE out either, as to whether or not it is directly linked to auto dys/pots............when i asked the research doc about the connection between EDS and POTS, he laughed and said "i doubt there is any connection, i actually had a control in the pots research who has EDS and she didnt have pots"..................but on the flip, i asked phillip low about it and he said that even though he doesnt have data to prove the connection, he wouldnt be surprised at a direct link ....so......speculation, speculation... sorry, i know i probably sometimes play "detective" too much with all this, but its only because there are things that i cannot do right now, that i want to do, but cannot. i know i should be more grateful that i can do much more than the average posty person, it's just still tough because i still have some limitations and would like to just think that this could all easily be remedied next week with with an ablation................... p.s. there are patients that have come in for diagnostic tilt and have met criteria for having pots but believe they dont truly have pots because they can function alright.........the research assistant in boston told me this and said was part of their problem "recruiting patients" for research, because a lot of them felt they didnt even have pots but the research assistant said they clearly met the criteria.........i asked my neuro about this, asked them if you could have a resting rate of 80 supine and a rate of 160 standing, not be symptomatic, and still be classified as having pots and he said "no" because part of the "syndrome" includes having symptoms...........so then i asked him what they would classify these people as having, if it would be IST and he said "no".....so i asked him what it would be then and he said "normal" ...............???

Anyone ever feel that they DONT have pots?? ...minus the past two weeks of having syncopal spells which i feel is due to florinef, I really feel like i'm in a league of my own............my doctors even say so as it pertains to my super HR's. my HR's are super high and though they are instigated by position change, i dont feel necessarily, in general, symptomatic with standing?? i mean, sometimes i do, but it is not like what many of you describe -- like for example, the post i just put up about "how often" your symptomatic - many of you put "every day non-stop". that is NOT me. i asked my neuro if you could have POTS just based from the clinical criteria of 30 point or more increase from sit to stand, and he said no because pots is also defined by symptoms. i AM SOMEWHAT symptomatic, but not with dizziness and the general pots symptoms that most pots patients have. mostly, it's GI stuff that bothers me........ ......i asked the doc about the possibility of this just being inappropriate sinus tachy and he said "no" because the HR is super high with position change, so its postural in nature. as i have said before, and thought before, i think it's more a primary sinus node abnormality in my case because i dont get the whole dizzy effect when upright....which tells me i am perfusing quite well. and then of course this past visit with the research doc and him being flabergasted (sp?) at the fact that i was able to drive?? i have never had problems with driving and/or sitting, and i guess he says "all pots patients do".... so all of this makes me question the diagnoses of POTS and makes me think this is more an intrinsic sinus node/conduction abnormality.... anyone question the diagnoses of POTS??

dont get me wrong that i am certainly happy for what i am able to do/function. it is not that i WANT to be sick, but because i am, it's nice to have someone recognize WHERE you struggle, not necessarily how functional you are..... .... we all want to be heard, and when speaking of such critical matters like passing out (and also because this is new for me, this isnt something that i have gone through a gazillion times ) - i expect that not to be disregarded and felt that it was, in all its seriousness (at least from my standpoint, it feels serious), with comments about "looking good" and "doing so well" being made directly after i had just voiced my concerns over syncope -- it was like he wasnt listening to me, or diregarded the events, when i had JUST stated that i WASNT DOING SO WELL, and was having problems with passing out......... i'm glad i look good, no one wants to look ill, but i want to be taken seriously when it is time to be taken seriously. and the time to be taken seriously is most certainly when discussing things like syncopal events! perhaps because he is just a research doc and doesnt necessarily carry out any true medical relavance in regards to follow up appointments/treatments,etc with me, i shouldnt put any stalk in what he says. now if all this happened with either my cardio or neuro, i would not be impressed at all. -cardiactec.

oh yeah, then interestingly enough, he ends the convo by asking me to come back to be part of more of his POTS research testing. i felt like saying "well maybe i shouldnt be in pots research, since i am so "well appearing", or maybe i should be part of the control group instead of being the patient since you say i dont look sick"!! ...just funny he says all this but in the same breath says that he's never seen a subject so "remarkable" as me with HR's in the 200's when upright. but i guess a resting HR of 200 when standing means you're healthy.

whether or not he meant it as a compliment, it was still disheartening to me, after telling him about the last two weeks and problems with passing out , that he had no comment about it and seemingly disregarded what i had just said about it and how scary it was, by him saying "well you just look so good". it felt like he was trying to play reverse psychology or something. i do think i function better than most, but i still have limitations and still struggle with this. i do not think it is appropriate or fair to me to discount my struggles/passing out events/etc by not commenting on it and instead, responding by repeatedly saying that i look good... funny, i have seen plenty of people literally on their death bed and some actually DO look pretty good. does this mean they arent really dying? certainly not. APPEARANCE truely is nothing, and i'm not talking about the sprite commercial! lol.

doctorguest, that is what i was thinking too - just a sinus arrhythima or something. not sure though... i'm not too concerned about it but am, more or less, concerned with the brady. at the time the nurse listened to my heart, he said it was going pretty fast and then just "stopped", completely, for a few seconds and then picked back up at a tachy rate....he then had my lie down and the rate he said dropped to normal but didnt hear any pauses, was just regular..... ..i dont generally listen to hearts with stethescope as it is not part of my job, but i would think a sinus arrhythmia wouldnt result in the complete cessation of all heart beats/heart sound, but more or less hearing the heart beat/rate both slow and increase with respiratory variation....he said this was a complete pause, not a slowing. who knows...

Hey Julie, I have never had an event monitor on before actually. Just a 24 hour holter about 5 years ago.....so, it probably is a good idea to get one put on.....

So i drove down to boston yesterday (a two hour drive for me) to meet with one of the research docs i have been involved in for that past year........the first thing he says is "wow, you drove down here by yourself and it's a two hour drive??" -- he looked all surprised and i just told him "yeah"....he then said "you werent symptomatic?" ...i said i was fine and wondered why so many pots patients had problems with driving -- cuz when i'm sitting, i'm fine.............he continued on with going over some research data with me and then at the end, once again, questioned my ability to drive for two hours with not being symtomatic and then said "you just look so good, you dont look sick at all, it's amazing".............. ya know, i'm glad i dont LOOK sick and i hate how docs just lump all "POTS patients" in together and think that all of them should be on the same level of functioning and present the same with symptoms, but WE DONT! i have NO PROBLEMS when i am sitting, none whatsoever, and for some reason he was very surprised that i was able to make a two hour drive by myself and sit there and talk to him for an hour with no problems ..........especially when he says "you are one of the more impressive subjects i've seen in research in that not one other patient has come near to your 201 HR while standing, but yet you seem to do better than all of them" .............. it was almost like he was questioning my illness?? i'm glad i dont look ill but on the same token, people dont take you seriously either when you look well -- especially when they make comments like "you look so good, you dont even look sick" over and over again. i wanted to say 'I HEARD YOU THE FIRST TIME' and then wanted to continue to tell him to walk with me throughout my day and THEN make his comments or observations -- because i cannot do many many things because of POTS, mainly working in an EP lab which is what i want so much to do! i also have little energy after working 24 hours a weeks for social time because by the time i'm done with work, i'm drained completely! why does it feel sometimes that you have to PROVE your illness???? i hate when docs make these comments. it's like they are discrediting the reality of your illness and what challeneges you face -- all because i can sit in a car for two- four hours??? once again, everyone is DIFFERENT in how they respond in symptoms/functioning with POTS. thankfully i can drive, sit for hours on end and not have a problem. and this is all after i tell him about how i passed out two weeks ago and almost again on monday!

hmmmm....so this morning, one of the nurses wanted me to do an ekg on him cuz he'd been having chest pain. the ecg was normal. after i was done doing an ekg on him, i asked him to listen to my heart cuz i had been feeling woozy, moreso than usual, this morning and was questioning whether or not i'd go through another "event" that i've been dealing with for the past couple weeks now.... ...he was listening to my heart, while i was standing, and then just gave me this "look"...........he then said "did you just valsalva or something? i just said i did but hadnt really valsalvad and asked him why. he said he heard my heart literally pause for a couple seconds....ironically at that time i started to feel kind of ill, not necessarily feeling my HR drop out like when i passed out, but just a flush over my face and light-headed - the general thing i sense when it's not a "true" pass out..............this is a ER nurse who has been in the field for a good 20 years, so i know he's not just ''hearing things''.... NOW i question if they should put me on an event of some sort....i didnt feel the pause, didnt feel anything in my chest whatsoever, and generally never do, even when my rates are at 180's....the only thing i have really ever felt has been just recently, with my HR drop out, when i passed out once and then the second time when i almost passed out again........ strange.... -cardiactec.

Maxine, I wish my neuro and cardio would connect and talk, but they dont.........they used to, at first, then i went to mayo clinic and mayo just said "severe POTS" and basically gave neither my cardio nor neuro anything to work with that they hadnt already tried.............so i think, to a point, both have dropped the ball with communicating with each other about any other potential treatments. this is why i didnt want to go to mayo -- because once mayo closes the door, everyone follows their lead.........my cardio expects mayo to handle this, and my neuro expects him and only him to handle this, my PCP is kind to listen to it all, but doesnt ever talk to my cardio or neuro, and mayo NEVER is in correspondance with ANY of my docs...............phew..........terrible........makes me tired to even read what i just wrote! and frustrated............... doctorguest, i have already tried mestinon and midodrine. neither helped and one of the two (cant remember which) actually made me feel worse............................they have me on a pretty hefty dose of beta blocker, and i have been taking such a high dosage for about 4 years now. i NEVER EVER had a problem with hypotension/syncope while JUST taking high dose beta (with nothing along with it to bump up the pressure)...it was only until about 3 or so months ago that i started having a lot of pre-syncopal events, and now, recently syncope.............so i dont think the beta is the problem in causing the hypotension/syncope, cuz i have been on extremely high doses for 4 years now without any other med to keep the pressure up (til recently taking florinef) and never had a problem with hypotension,syncope......... thanks though for your suggestions......... this too, hopefully, shall pass. cardiactec.

hey there, my BP was low -- around 86/60 and i was symptomatic, along with a HR of 200. they put me on florinef to raise the BP....i didnt originally have high BP, and actually still dont, even with high doses of florinef....