cardiactec

Hi Angela (lol, with us having the same names, I feel like i'm talking to myself!) How long have you been on the midodrine and at what dose? have you ever tried beta blockers or do they make you feel worse? I know with a lot of POTS patients, betas tend to make them feel worse...... how high is your tachy? i would think that the bike test (it must be a stress test but they are having you do it with a sit down bike cuz of your tachy/symptoms??) you would probably have the same reaction that you did to the pulmonary test....what are they looking for specifically with the bike test?

Hi there, So sorry for the recent frustrations and how poorly you have been feeling.... I'm not sure why the doc said that your lightheadedness with the pulmonary function test was normal but that your pulse was not -- it is normal for HR to increase with the testing you were having.... I had a pulmonary function test and had the same response as you ....my pulse went crazy and wouldnt come down..........It is a normal response with even normal people, after pulmonary testing (all the hard breathing they have you do, blowing in the tubes, etc) causes the HR to increase. By breathing deeper, longer breathes, you increase the amount of blood to the lungs and in turn increase the amount of blood to the heart -- which makes the heart start working harder (beating faster). the work load of the heart increases when blood supply increases....OR decreases........ When someone with pots already has a high resting HR or exaggerated sympathetic tone, things like deep, hard breathing or other mechanisms as such exasperate the problem, and it is going to peek your rates even more and make you feel worse..... I hope you start feeling better soon.... -Angela.

Hi Tammy, I understand your frustrations....I was at church this morning and feeling pretty miserable with my tachy and nausea. It was hard to focus on the sermon when feeling so poorly.....I guess the only thing I can say is try and hold fast to your faith, when POTS symptoms are ever changing from one minute to the next, there is One who remains constant and is an ever present help in time of need. As for the "hyperpigmentation", that pretty much means there are areas of your skin that are darker than other places -- can look patchy. generally, i believe with addisons disease or adrenal issues, areas of most pronounced hyperpigmentation are the elbows, around the eyes, around the knees, and lips. adrenal disorders can wreak havoc on electrolytes -- specifically potassium and sodium.....did they check your electrolytes while in the ED? Are you able to take or are you taking a beta blocker? the one thing that has helped me is beta blocker, though i still have many break through events of tachycardia, even on very high doses of beta..... take care and hang in there....

What is a "Big O" ? LOL!!!!!!!!!!!!! OKAY, SORRY, I'm regrouping now from elementary school days, I JUST HAD TO HAVE SOME FUN WITH THE "BIG O" comment!!! :P :lol:

I know you dont necessarily have to have MVP in order to feel this, but I know there is some correlation specifically to people with MVP that jump back and forth between fatigue in general and then also a "wired" feeling ...... ....I have been noticing lately while at work, I am able to run around like a fool (four hour shifts), feel tons of energy and then the second I get in my jeep to drive home, i CRRRRRAAAAAASSSSSSH hard. sometimes I just feel flat out fatigued and no energy at all...........but it drives me crazy to feel like someone is feeding me caffeine pills like crazy and then crashing so hard afterwards.......... it is interesting to me that I am able to feel any energy at all lately considering I havent been able to eat much with my gastroparesis/nausea problems, but I guess i'll take it!! it's also interesting that i'm not in a coma tose state with all the beta i'm on as well!!! must have some MAJOR catecholamines running around in the bloodstream! anyone else feel wired then extremely tired afterwards, like someone pulled the plug on you??

You're not alone with what you feel - or DONT feel I should say! I dont feel hungry either, but try to force myself to eat because of weight loss. I know I have to eat to survive, so I constantly have to remind myself to try and eat, even when I dont even feel hungry or am nauseous.....

I tried domperidone for my gastroparesis, it didnt help my symptoms at all... hope you find some relief with it... cardiactec.

I would have to side with flop on this one in regard to cardiac pacing and not a feeding tube...... if you are having swallowing syncope, it's not any mechanical or physical problem OF swallowing that is the primary problem, but more secondary -- so it sounds. the primary problem sounds more cardiac innervation signals to the heart getting messed up and thus, perhaps causing a rhythm disturbance..........well, maybe not rhythm disturbance, but a RATE disturbance (very slow heart rate)...........not sure, would have to capture it when it occurs.......... ......anyway, what i'm getting at is if your heart is responding inappropriately to swallowing, than it would seem logical to address/treat the inappropriate response of the heart TO swallowing and not look into ways to prevent the act of swallowing so that you dont pass out. ....because essentially, feeding tube or not, you will still ultimately swallow (saliva), and your heart/innervation of the heart will still be the culprit to syncopal events................... perhaps there is more to the picture, but from what you have described, i think the info flop provided seems like a very wise approach to investigate instead of the feeding tube approach.... good luck. cardiactec.

hey there, sorry that you are going through all of this..... I guess the first thing that popped into mind, after you mentioning fevers and infection and such is have they checked you for endocarditis? did they ever get to the root cause of what was/is causing the infection/fevers? endocarditis can cause not only inflammation/infection of the heart itself but can also trigger tachyarrhythmia's, generally certain SVT's... you mention pain as well, which is also can be consistent with some inflammatory process of the heart..............pericarditis is another possibility, which is less serious than endocarditis. generally pericarditis can be hard to diagnose, but if you are as symptomatic as you describe, i would think such pathology would show up on ECG. also, when they caught your HR at 224 the last time, were you experiencing similar symptoms as you experienced this time? a HR of 224 isnt especially consistent with a sinus mechanism, I suppose it is possible but generally a sinus originating tachycardia doenst exceed 200 -- but there are always exceptions to the rule - i have been in sinus originating tachycardia at 210 BPM, so anything is possible. I would start with having an echo to make sure the source of infection isnt coming from your heart. once that is eliminated as potential cause, i would suggest wearing a holter monitor or event monitor to try and capture this....... also, ANY infection (not just cardiac), if significant enough, can cause tachyarrhythmia's to occur. take care and good luck.

I have been having some side effects from the SSRI, feeling like my head is in the clouds and also some dry mouth, but I think it's getting better........ I still have my opinions about SSRI's, -- :lol: :P but at this point, if I can avoid GI pacer surgery, I am willing to try just about anything, including SSRI, to get my nausea under control....... ...having tried just about every med known to man BUT SSRI, I figured since the medical field is mainly one big game of process of elimination, we can either now eliminate SSRI as being helpful or it not........my doc said if THIS doesnt help, he'll take me off of it and try some form of med they give to stroke patients????? starts with a B??? cant remember the name....and if THAT doesnt work, then he'd be in favor -- and so would I -- for trying the GI pacer......

hey flop, yes, he was defining postural hypotension to me when i asked him specifically about tilt induced hypotensive response.. ...was this article or is this post questioning hypotension alone without regard to orthostatic effect?? I thought the question was of POTS (positional) hypotension that was being questioned and not hypotension alone? My doc told me that hypotension alone isnt diagnosed directly off of systolic number, but off of correlating symptoms of a "lower than normal" systolic number .......someone can have a normal baseline BP of 90/60 and not be symptomatic. my teacher's bp runs around 80 systolic and she does not have positive orthostatics (her BP doesnt drop out further with standing), and she feels fine.

I just thought I'd share in my joy of these WONDERFUL comments that my students wrote in their course evaluation regarding me as a teacher and the course itself. I am certainly humbled and happy that they enjoyed the class and that for my first time teaching, I got such wonderful remarks! --> COMMENTS: * Angela did a very nice job for her first time teaching. * This was probably the best prepared course instruction of all my classes. This instructor put her heart and soul into teaching this course, and for her first time I give her kudoos! * What a great teacher and class... The subject being dry, was made into something I could actually enjoy learning. Best overall teacher I've had in a long time. * I was very impressed with Angela's teaching methods in this class. She is a natural teacher, was very well organized, always prepares, created a very effective learning environment and clearly has extensive knowledge of the subject she teaches. This was by far the hardest class but definitely the one i learned the most in this semester. It was the most structured and organized and Angela should talk to our other teachers and share w/them her teaching strategies. * excellent teacher, the best this semester, learned the most in this class and worked the hardest. Angle should feel very proud and i would rec. her teaching more classes in the future.

I actually have been to see dr. julian stewart, one of the guys who was part of that publication. he is very very smart and very compassionate to the pots patient. doctorguest, last i spoke with dr.stewart, he defined "hypotension", to me anyway (not sure what is written in his paper), as a 20 point drop in systolic number that stays consistent (a 20 point drop or continued dropping) throughout a standing tilt. stewart by the way, works primarily with the pedi population, so therefore, his analysis or data of hypotension in pots patients might be more heavily weighted towards utlizing a larger pedi group in his studies than adult group.......but i dont know who and how he picks his subjects for study so i dont know about this...

Hi all, thanks for all your comments/suggestions..... first off, doctorguest, why would that be, to have a moderate amount of stool in your rectum, and not be able to sense a need to defecate until two days following that x-ray? you would think with that much pressure right in the rectum, that there would be some receptor activity occuring? when I was 6 and had to go into the ER because i was vomiting bile, so sick from not being able to go to the bathroom, that is precisely where a large amount of stool was sitting - in the descending colon and the rectal vault........no "true" obstruction was found, just nothing was moving.........also doctorguest, if you could answer a question, can SSRI also cause hypomotility/constipation problems? my neuro is currently trying me on SSRI as a last dig attempt before going to surgery, to help with my GP (yes, i gave in to my hesitation with the stigma SSRI's can/seem to have in order to see if this will bring relief - so far, 6 days into it, it hasnt done a thing to help my tummy)......ah yes, good suggestion regarding zofran - forgot that a side effect of that was constipation - that could definitely be enhancing the troubles i have been having with the constipation, but i was having problems with constipation before starting to take zofran -- interestingly enough, the constipation has been much worse lately -- perhaps due to the large amounts of zofran i am taking to try and combat the nausea..... sunfish, i have never had any small bowel follow through testing, no manometry tests - the only GI tests i have had include colonoscopy, sigmoidoscopy, upper GI barium, endoscopy, and the gastric emptying study.........everything but the GES was done 3 or 4 years ago when they were trying to get to the root cause of my nausea..... elle, good luck with your procedure, i hope it goes smoothly and that they find some answers as to what is going on......my doc told me that neuropathy of the GI tract could only be diagnosed through surgical procedure????? not sure what he meant by that, he said something about a biopsy........i thought it could be diagnosed through manometry?? rachel, thanks for the suggestion of the tea. i will definitely look into it. OLL, interesting about the HR coinciding with stool/constipation in the colon.....I'll have to look into that....any websites/links you can give me that talk about this? momtoguiliana, thank you for your sympathy..............i know that fiber is generally a recommended treatment for constipation, but as sunfish stated, and as i have unfortunately found out over the past couple years, anything high fiber makes my nausea 10X worse....

Interesting enough, when I was about 6 years old, I was rushed in to the ER because I was vomiting up bile due to the fact that I was severely constipated, couldnt go to the bathroom at all.........my parents tell me that when i was an infant, they used to have to do various thing to help me go to the bathroom as well............off and on throughout adolescent years, i had some bathroom problems, but not as severe as when i was younger..............and now lately, i have been having these problems again, along with the stomach trouble, and swallowing trouble........ i have mentioned several times to the GI doc about the swallowing problems............he told the GI surgeon about this and when I met with the surgeon, he brought it up, and at that point, i thought he would start discussing his hesitation for pacing me due to the fact that if there are other GI areas involved displaying possible dysmotility, so that the pacer would be less effective to truly "treat" the overall underlying problem..............he never said anything about it..............and proceeded to discuss GI pacing........... as for the constipation, i have only mentioned that to my PCP.......he thinks it's linked to the dysmotility of my stomach......... ...I told my GI doc that i didnt want to have an esophageal manometry for the swallowing trouble because essentially there is no treatment for that anyway, so i didnt want to go through the torture of such an unpleasant test if they couldnt treat the problem..................as for the lower manometry testing, nobody has recommended that to me.......... as for the diet that helps with constipation, it tends to aggravate my gastroparesis......

Hi all, I have been severely constipated for that last couple months........as some of you have read, I am currently on track for surgical procedure for GI pacer (stomach). I am questioning whether or not I should get this pacer, for various reasons as posted earlier, but also because I wonder if there is more than just HYPOmotility of the stomach........I have had a hard time swallowing the past couple months, and now, severely constipated as well....... ....Interestingly enough, a couple weeks ago when i was in the ER for the nausea, they did an abdominal x-ray on me and saw what the radiologist dictated as "a moderate amount of stool in the descending colon and rectal vault".....i was shocked by that considering I didnt even "feel" like i had to go to the bathroom until two days after that x-ray was taken -- and if there was THAT much stool sitting RIGHT there (sorry, i know this is gross) to be eliminated, I wonder why the sensation to go to the bathroom wasnt there until two days later??? Do any of you have problems with constipation?? is there is test to show/prove neuropathy or hypomotility of the small and/or large intestine and not just with the stomach?

Susan, that would be GREAT if you could have her email me, or I can email her.... my email address is cardiac_tec@hotmail.com ....thanks so much..

sunfish and flop, you two are so funny! lol! thanks for a good laugh! well, to answer the redundency (lol!!) of BOTH your questions, I havent kept a journal/log of caloric intake.....for what reason, probably more or less because I work 20 hours a week and after that, I feel pretty pooped. Just dont have the energy and mental capacity to actually log out everything I eat and calories. I know that sounds a bit lazy, but I'm pretty drained lately...........it's a good idea and I have thought about doing it, but just havent felt up to being able to do it on top of trying to work the part time hours.........I DO KNOW that i probably have dropped off SOME amounts of foods that I generally was eating .....I know that the TYPES of foods I generally eat have not changed, but I have been having a hard time with finishing a meal - so I have ended up leaving stuff on my plate from lunch and dinner (breakfast i usually can finish - generally consists of a bowl of cerael).......... I tried domperidone in november or so?? and tried it for about three weeks, i was at a pretty hefty dose - they brought me up above "standard dosing". i cant remember the actually ''mg'' dosage. yup, tried erythro and mestinon. neither helped unfortunately. I actually have tried to "add in" some calories with milkshakes and instant carnation, this being to try and replace calories that i am probably losing from not being able to finish meals (lunch and dinner) but actually, the instant carnations make me feel more nauseated.....high fat i presume? i am using 2% milk, so maybe i could trying 1% or fat-free, but then i lose out on calories...... poohbear, thanks for the suggesion on UNJURY. I will check it out. As for anti-nausea meds, I have tried many - i think all - phenergan, compazine, scopolamine, tigan..........i am not taking zofran, IV wise it helps DRAMATICALLY -- the pill form (The dissolvable tabs) help a little, just enough to take the edge off, but doesnt completely cut it. I wish they could hook me up to IV zofran and then i'd be all set!! seriously! I was in the ED a couple weeks ago with the nausea cuz it was so bad and the IV zofran worked wonders for my nausea........ thanks for all your replies/suggestions. I'm sure I'll figure out what to do about the pacer as the weeks pass. my doc is trying a med on me right now, one i have yet to try, so we'll see if that helps....

hey melissa, you said, "am i remembering that there's a reason you can't try domperidone/ motilium?? and/or have you tried an ENTIRELY liquid diet? and what happens if you "eat through" the nausea?" I actually wasnt supposed to try domperidone because i was on sotalol (they are contraindicated to take together) BUT i did end up trying it anyway after the docs agreed they thought it to be okay. it didnt help any unfortunately.... I havent just tried a liquid diet and was thinking of doing this before doing the surgery.........I hate the thought to have to be on a liquid diet the rest of my life, doesnt sound like much fun, but i am currently still eating solids (and yes, keeping them down) but with MUCH nausea....interesting you ask if i just "eat through the nausea" - generally, i dont get nauseous until about 2-3 hours AFTER i eat and it persists for a fews hours after that point.........generally night time is the worst for me, the nausea wakes me from a dead sleep...........i am thinking that this is because the foods that i eat from breakfast, lunch, and dinner are all piling up on top of each other (to some extent, not ALL of it of course or else i'd OBVIOUSLY be vomiting) ....... ..........i can still eat solids and keep them down, but it is hard because of the nausea that follows a couple hours later.. - i think i have such a phobia about vomiting, that i literally mentally refrain from allowing my body to physically vomit......... i'm not sure if i'd feel right about gastric pacing considering, from what i hear, the majority of people are vomiting, cant eat solids AT ALL, etc.........i think, perhaps, unless i were to fall into such an extreme category, i dont know if it's a smart move to proceed with the pacer........... ....nausea is nausea, but vomiting is another story altogether.....the thing i dont understand is why i am losing weight if i am not vomiting? doesnt make sense.... i wish there was an easier way to help with this, both with the nausea and with the weight loss....seems to me that a liquid diet would result in further weight loss........i dont want to do THAT...........but then again, i'm sure there are ways to really pack in calories with liquid diet and maybe it would cut the nausea......................

oh yeah, I asked the GI surgeon about transcutaenous pacing - he said this was a good idea but was not provided in maine (where i live)....he also said that it involved a number of wires down the nose..............yuck.

I'd be having the surgery in Maine. ..... .....I am actually not 100% sure i'm going to go through with the surgery though, after talking with the doc (GI surgeon). I am losing weight and am pretty nauseated the majority of the time, but from the sounds of it, the "typical" type of people this GI doc paces are people who vomit all the time and are down to 80-90pounds and are basically dying of starvation......this, to me, is pretty extreme and i dont consider myself in this category..... .....so i'm thinking maybe i should hold off and see what other ways to better my situation?? not sure what else to do though, since it seems as though i've tried everything, and though i dont vomit, the nausea i have been dealing with for 7 years now, which is getting pretty annoying at this point.....and pretty tiring...

I am so sorry to hear of all you are going through..... it is hard to know what exactly to say to someone after such loss. one of my good friends carried her twins to full term, was supposed to go in for c-section and a week before the c-section, something happened, she ended up losing one of the twins on the spot, and the other died a week later of brain death (oxygen deprived for too long)...................i had no clue what to say to her with such loss...............i guess all you really can do is simply be there for her, a shoulder to cry on, someone who she can vent to -- when she even gets to the place of knowing HOW to vent............. so sorry for all you are going through.............i can see why you would be more symptomatic with all the stuff your family has gone through and currently IS going through....... I will be prayering for you. Hang in there. cardiactec.

Does anyone know of any facilities that perform transcutaneous GI pacing to see if it helps with dysmotility problems? I am scheduled for GI pacer surgery at the end of june. the doc said he doesnt know if it'll help, as some people seem to be relieved from symptoms with the pacer and some dont -- no matter what the underlying etiology of the dysmotility...................it would make perfect sense to me, being a cardiac tech and knowing how we temporarily can transcutaneously pace our cardiac patients, to do the same with GI patients -- just to see if pacing would help GI symptoms without having to go in for permanent GI pacer implant via surgical procedure.......

Hi all, I need to gain some weight - like STAT! I have tried ensure and boost and hate the taste of both -- plus, in order to actually have those drinks put pounds to you, you need to drink a bunch a day (and THAT can get expensive). the only thing I really like are instant carnation drinks -- these can be rough on my tummy - trying to bulk up the calories in those things by adding whole milk to them is KILLING me. does anyone know of any other types of high calorie drinks that could help put weight on these bones??? thanks! cardiactec.

I am completely not aware that I am even doing it - but the last two times the nurses in my PCP's office did sets of orthostatics on me, when I was standing, they told me that they noticed that I tended to "sway".........I have never noticed that I'm doing it, they picked up on it though...