cardiactec

Hi there. What an aweful time with the whole pelvic floor reconstruction!!! Unbelievable! I am glad that they got most of it resolved for you however I wonder if your (sounds like lower GI) issues are from all the troubles you went through from repair of the pelivc floor. (??). The doctors don't want to keep my device off. Mayo just requested that it be shut off for my week there (they wanted results that weren't skewed by having my device on so they could see what my stomach and gut essentially could do on it's own without any help of the stimulator. Keep me posted on everything. I will be around here more often as I'm now out on disability. Angela.

hey tearose, so sorry to hear you're having troubles again..... why did you have to have total pelvic reconstruction ? (sorry, i have been out of the loop for so long, i can't remember everyone's stories! i can barely remember my own! ha!) .... i have been going through quite the ordeal. had to go out on disability because of urinary incontinence, couldn't stand longer than 10 minutes without symptoms of dizziness, shakiness, and heart rates between 170-200 (sinus tach)......my cardio thought i was in autonomic failure as i was diagnosed in maine two years ago with gastroparesis, then started in with urinary stuff 7 months ago, and then the increasing POTS symptoms and arrhythmia's left and right, question of vascular EDS also...... i had the enterra stimulator placed two years ago for the nausea, vomiting, feeling full quickly and it has been a life saver ....went from 110 pounds at 5'8' to 140..... so mayo wanted me to have the enterra stimulator shut off before i went out there because they wanted to do their OWN GI testing, along with a repeat of ALL the autonomic testing I had the LAST time i was out there.....they also had me check in with cardiology, urology, rheumatology, and geneticist. ........phew.....so they did the nuclear gastric emptying along with the small and large intestine transit follow through (never had the motility test done on the intestine, just stomach) ..........they said my gastric emptying was normal and that my small intestine motility was abnormal .....the GI said that gastric emptying can vary and also testing variables from one facility to another can occur.....even so i asked him aside from the gastric emptying, if i did not have gastroparesis, why back home on two different endoscopies was there still food in my stomach after a 12 hour fast? he didn't have any answers for me, only that sometimes gastroparesis can be intermittent but usually it is only seen with diabetic etiology......the GI then said they saw small bowel dysmotility and that the symptoms of small bowel dysmotiltiy can be the same as gastroparesis, so he said it can be difficult sometimes to sort of between the two.....he said i could have both, or just one or the other ......they wanted to do a gastroduodenal motility endoscopy, which had been schedule before i had the nuclear study, but after the results of the nuclear study, they said there was no need to do the endoscopy ...... as for all other testing, neuro came back normal except for, of course, the exaggerated heart rate response on tilt at 180 BPM. cardio just showed the same and MVP on echo. rheumo and geneticist confirmed EDS III and they are testing me for mitochondrial disease and EDS IV (the results of these won't be in until next week). I met with Dr.Low at the end of all the tests.....he couldnt offer any new treatment regimen from the last time i was out there.......he said the motility issues of the small bowel had nothing to do with an autonomic issue and that it was probably "functional" and nothing to worry about (whatever THAT means).....he said the uro testing didn't show neurogenic bladder, so i just supposedly have an "overactive" bladder ? he said overall, i just have an extrordinarily fast heart rate when i am standing...............sigh ...........no answers, no new treatments ....it was a horrible week out there and i'll never do it again ....... funny, the only one at mayo who seemed helpful regarding the GI stuff was the rheumatologist! LOL -- and he pretty much recommended what you did -- miralax. I do have some issues with constipation and i was saying to julie that the GI guys wanted to do some manometry thing on me to look for pelvic floor dysfunction but from the sounds of the test and the "biofeedback" treatment, i wasnt interested .... i agree, too much testing = a lot more confusion! especially when dysautonomia can change symptoms drastically (and physiologically) from one day to the next. where is your dysmotility in your GI tract? have you had the nuclear emptying study with small bowel/colon follow through? talk soon, angela.

morgan -- good point -- ie: gastric emptying like a holter. .......it is a long story why my enterra device isn't back on yet (as i've been home from mayo now for a week! grrrr to the GI office) but i have good and bad days with gastroparesis. i have had three gastric emptying's ......two were abnormal and one (the latest one) was normal .......today i am so nauseous it's not even funny, yesterday wasn't too bad......i'm sure if they had done an gastric emptying yesterday it would have been normal ....today ?? forget about it! at any rate, i can't wait until this device is back on!

I have had problems since infancy with constipation. not to get too grotesque here, but my parent's had to use vaseline on me when I was still an infant and help "manually". I also ended up at the age of 5 or 6 having impacted bowel and was vomiting bile, which led me into the hospital. it's weird though because through junior high/high school those things weren't an issue anymore, neither was eating/stomach issue/nausea,etc.....then 9 months or so after graduating high school i started getting the constipation issue again.....then the stomach stuff.....ick. not fun. I would have had the test, as embarrassing as some might think it is, but I have had worse....so it really wasn't an issue of embarrassment as to why I didn't have the test, but more out of frustration of what they ended up telling me about my tum (their test was "normal" but that the small bowel was the issue). I thought I had started to piece the puzzle together as i was diagnosed with gastroparesis (moderate case) in maine and the POTS stuff, so I was hoping for ONE answer/diagnosis to all this and instead the picture became even more skewed...... sometimes I wonder the more you investigate your symptoms with tests and such (especially if their repeat tests like my gastric emptying) you become more confused about what is going on and thus, treatment options don't end up treating a specific diagnosable UNDERSTOOD problem, but the approach then becomes throw a medicine at the person now that there isn't a definitive concrete NAME for their problem and see if it "sticks". I don't care for that mentality, so it might be stubborn of me to have not gone through the manometry test, but I didn't want the picture to be skewed anymore. last thing we all need is contradictions in our medical files! I like to keep things straight and this last trip to mayo didn't solidify the straight line but instead got me feeling like I'm walking in circles again! I agree also with what you said about biofeedback ....I highly doubt that would solve the problems I have had literally since I was in diapers ....

Hi Julie, Sorry to hear you are having troubles again. Have you have the nuclear transit follow through test? funny you mention miralax. i am going to give it a try if i need it in the future. funny, none of the GI guys at mayo mentioned it but the rheumatologist at mayo went on and on about it! haha. how is your son doing? does he have GP or just the small bowel stuff?

mayo clinic wanted to do some sort of "rectal manometry" on me as i have problems with constipation and they mentioned pelvic floor dysfunction. i never had the test done though.....

Hello all!! It's been awhile since I have been on here! It's been a crazy road! I am now out on disability so I am hoping to catch up with some of you more often now. I had a question for you EDS'ers (specifically anyone who has been diagnosed with vascular form). I had a laparoscopy a month ago for endometriosis and the doctor said she saw "varicose veins" on or around my uterus. She said that is a very odd finding in someone who has never had children and then went on to question whether or not I could potentially have the vascular form of EDS. I PRAY I don't. I will find out in a few weeks as I just got back from mayo clinic and they ran all the blood work for it.....Anyone have this? been questioned of a connective tissue component because of such a finding? Hope you all are hanging in there! Angela.

Hey Julie! Good to talk to you again. It's been too long, my bad! Yes, bitter sweet with the disability. At least now I can rest this weary body and get my strength back. Slowly but surely. We ARE more than conquerors and I believe we'll overcome this someday soon. I am not taking any pro-kinetics. I tried them all before the neurostimulator and none of them helped me. I even tried the lovely endoscopic botox injections, NOT helpful. I really don't have to take anything now because the stimulator is doing such a wonderful job! Occasionally, I have some nausea issues in the middle of the night but a little zofran or tigan generally does the trick for me. I agree that small bowel dysmotility is definitely something TO worry about! the neuro at mayo is the one who said it wasn't anything to worry about. the GI guys said that it can cause, as you said, same symptoms as gastroparesis. They were thrilled to see my weight up by 30 pounds from the last time I was out there -- obviously the stimulator is working!! ;o) Now remind me, do you have both gastroparesis and small bowel dysmotility? any issue with the large bowel? so good to talk to you again Julie! catch up later! Angela.

Hey Julie and all, I haven't been on here in awhile. A LOT has gone on but specifically I went back to mayo a week ago because not only were my POTS symptoms worse, i was having bladder problems, and had been diagnosed via four hour gastric emptying study with gastroparesis (had all the classic symptoms). i had a neurostimulator implanted a year and a half ago which has dramatically helped. i was down to 110 at 5'8' and not able to eat without getting sick and now i am 140 and doing well stomach-wise but my local dr wanted me to go back to mayo thinking i was in autonomic failure.... i went back to mayo and they had me turn the neurostimulator off and did another gastric emptying on me, along with transit time of small and large bowel. they told me that my stomach emptied normal and that i didn't have gastroparesis??? i don't understand this as the gastric emptying i had back home two years ago followed same protocol and was significantly abnormal then and the neurostimulator has resolved most of my GI symptoms. they did say that they saw a small bowel dysmotility but "not to worry about it".... i was reading the thread here and am frustrated and confused at what the diagnosis is now and what had been causing all the GI problems pre neurostimulator ?? can gastroparesis be intermittent ? have any of you been told this by a GI? i was told at mayo that it is possible but usually seen more in diabetic GP patients as their blood sugar levels alter gastric emptying test results ......i have also heard that generally small bowel dysmotility usually goes along with GP ....? The GOOD news is I don't have autonomic failure. mayo is running bloodwork for mitochondrial disease and also EDS vascular form but pretty much all the testing for neuropathy and auto failure checked back ok which i'm glad about. sorry i haven't been on here in a long long time. i have been pretty sick with POTS symptoms and i'm now out on disability. hope you all are doing well. -Angela. (cardiactec)

I started on ortho evra the patch about three weeks ago, mostly for my endometriosis and for acne issues. about a week into starting it, i have had severe tremor, shortness of breath, and feel my heart pounding - not racing, just pounding. I thought that a lot of docs prescribe POTS/OI patient's birth control as many pots flare ups are worse around monthly cycle. ..... ??? I feel like this med has made my pots worse! Any thoughts? Experiences?

I believe we have discussed this topic in the past -- anyone have cellulite?? i have it pretty bad on my thighs and wondering what the best treatment out there is for it? I got a bike trainer for christmas and have been using that about 10 mins, 4 times a week ....two months into this routine and i'm not seeing any benefit .....anyone heard of the verseo massage roller?? I have heard that is the best thing out there right now for cellulite treatment at about 60$ ......

I dont think he is willingly admitting this to his patients. I ended up telling him that I saw his profile online and that specifically the "erotica" thing hurt me considering the sensitive subject matter of personal experiences of mine and issues with trust. I was pretty impressed actually, thinking that at most he would/might remove the erotica part of the profile but instead he removed his entire profile.....made me feel like he respected my thought and feelings regarding the matter. I do understand that what people do in their personal lives is their business, but I think it should be kept just that - personal, private..... I guess the one thing that didnt make sense to me is, why put that info out there on a dating site anyway -- whether shrink or doctor or garbage man? I mean, it's not like you're NOT going to peak the interest of a potential girlfriend/boyfriend if you don't have "erotica" or something similar posted to your personal profile. ?? right? I mean, it's not pertinent information that someone needs to know about you, someone who is wanting to get to know a person - at least not INITIALLY. I can see the sexual component coming in to play later on in the game, but when first getting to know someone? I don't know. Me, personally, I don't get it. Maybe it's not so weird for others in how they view this, but it is to me just from my life experiences, beliefs, etc.....

hey poohbear - yep, would love to help out in any way.

Hi, I just wanted to give an update to everyone re: my gastroparesis and how far I've come since getting the enterra therapy neurostimulator implant in september. It was rough at first, had a couple complications which required me to go back in for a second surgery in october. Since october, I have been able to eat non stop with minimal nausea intermittently. I have gained 12 pounds since the implant and feel a great deal better. Just wanted to let you all know this because for some reason, some doctors poo poo this device. I know my boston neuro told me not to get it because it was "hocus pocus". I am so glad I decided to get it. I feel so much better and because my stomach issues have been well controlled, a lot of my pots stuff has resolved! If anyone here has gastroparesis and you have tried all non invasive approaches for treatment, I would highly recommend the enterra therapy device. i know everyone is different and responds differently, so i would only be able to pray that anyone considering this device would have the same results as me. I believe it is worth a shot as I went into this procedure knowing that it was a 50 50 shot at helping me feel better (that was what the doc told me, 50/50). Anyway, just wanted to give some positive news and try to uplift you all!

I guess I see it a little different. His specialty is in trauma - that includes emotional, mental, physical, AND SEXUAL. I think it could be somewhat devastating to his clients who have trauma in their past to stumble across information like that. trust after trauma is tough and that info attached to his name could be detrimental to the emotional wellbeing of his clients. On the flip, I have developed feelings for this psychologist, but it literally it started 3 mins into meeting him, so I can't really believe that those feelings are from transference. I told him a couple months ago about it and he tried to pathologize it, which made me mad.....He is 10 years older than me, not that much older - maybe a bad pick from the start because his age is so close to mine. Also I tried to prove to him (even though i couldnt explain my feelings for him that occurred within 3 mins of meeting him cuz i dont really know him) that if it was a transference thing (considering my issues with trust), after I found the erotica thing, one would think my feelings would have changed for him. it was a little odd to find that info about him online considering some of the issues I have been seeing him for and the similarity subject matter. my feelings have not changed for him at all, even after finding that info, which to me, is a big deal. I mentioned all this to my PCP without giving away the psychologists name and the PCP said in response "that is very weird"... I think i probably need to stop seeing this psychologist, for many reasons. still it's rough, very conflicting....

I started seeing a psychologist two years ago, off and on, mostly for some of the depression that comes with my multiple of illnesses. Things are better with much of the medical stuff, but I have been seeing him for more personal reasons. I recently was on a dating site and found the psychologist on the site with his own personal profile. I read it just out of curiosity and was kind of taken back/bothered when I read what he wrote about "turn ons" - he wrote that he found "erotica" to be a turn on. It kind of hurt to see this and I thought it was a bit inappropriate and lack of better judgement on his part to post something like that out for the public to view when he is in the position he is in as psychologist. What do you all think about this? I have mentioned it to some of my friends, most think it's weird, some don't. Any thoughts?

hey there, thanks for checking in. been busy, but doing alright all in all. the neurostimulator second surgery went well but unfortunately the device is still partly malfunctioning - BUT it still has been able to have some therapeutic properties even with the intermittent malfunction. i am able to eat better and i have gained about 11 pounds!! psyched. my pots is better, i'm believing from a combo of the stomach being helped and from a less stressful job (sitting not running around like i was before) and also some exercising. still am having some troubles with arrhythmias (not pots), mostly ventricular tachy, but the docs are trying to control it with meds... hope you all are hanging in there......sorry for not being around for awhile. a lot going on, outside of the medical stuff.......

flop is right, generally low voltage, especially in the frontal leads, most always in from lead placement error. global low voltage (low voltage throughout the entire ecg) is generally indicative of a couple things - could mean someone is severely obese so the electrical signals basically just have more adipose tissue to channel through, thus creating low voltage. pericardial and/or pleural effusion (fluid around the lungs or heart) can cause low voltage. did they do a chest x-ray on you? have you had ecgs in the past demonstrating this? flop is right, it is probably nothing to be concerned with, but still goo to follow with a cardiologist. good luck, hope you are feeling better.

how much dilt are you on?

definitely is scary. i stopped monitoring mine as my resting HR's were wacky wacky wacky, around 150-170's sitting and 180's + standing.

your ablation for AVNRT would not cause a worsening of POTS. AVNRT is a type of arrhythmia outside of the normal electrical pathways in the heart. sinus tachy that occurs with POTS IS part of the normal electrical pathway and as long as the doc did not damage the sinus node (the normal part of the electrical pathways) while ablating the AVNRT, the ablation should have no effect on you today and where you are at symptomatically. your heart rate increase sounds typical of POTS. as macks mom said, i would try a new med regimen. the diltiazem might be aggravating your symptoms. good luck to you.

as nina said, ablations are contraindicated in the pots patient. however, if you had AVNRT and was symptomatic with this particular rhythm, than ablation for this and not sinus tach due to pots would not cause the symptoms that you have today. from the sounds of it and what your BP AND HR did with this tilt, granted you were on meds, it doesn't sound like pots. with pots you generally do not see BP drop, actually my neuro in boston told me with pots, usually BP is normal and actually sometimes high in the pots patient. there are people here with low BP issues but from what i have gathered from docs and my own research, hypotension generally is not seen with POTS. you also do not see HR drop with pots, and you mentioned your HR was 35 with your tilt. i would think your symptoms were due to your already diagnosed NCS issues rather than POTS, as your vitals don't indicate a typical POTS patient presentation. ie: heart rate increase to over 30 BPM with upright tilt with little or no change in BP. when you had your first tilt table, do you know if you had BOTH sinus tach with upright position AND your AVNRT or was it just AVNRT? or just sinus tach? with heart rates high enough, especially with AVNRT (rates can get pretty high), this can cause syncopal episodes....so i'm wondering if this is what happened with your first tilt, rather than sinus tachycardia due to pots....?? hence the reason they probably took you in for EP study/ablation. usually docs would not put a patient through an EP study after a tilt test if they didn't see a reason to do it -- a reason WOULD NOT be from sinus tach/POTS but WOULD BE good reason for AVNRT.

do any of you have brownish rings around your eyes? i have had this for YEARS and not sure what is causing the hyperpigmentation issue. i know adrenal issues like addison's can cause this, but i have been tested for it a few times and adrenal glands are fine. i look like a sleep deprived drug addict when i dont have make up on. anybody know of a product that might help with this?

they started me on that dosage cuz my BP in my docs office a few weeks ago was 76/50 and i had been very pre syncopal as well.

this is what my doctor wrote to me : ''It's potentially from the florinef, it's great news and it's safe. The florinef works by helping you retain a normal amount of fluid instead of urinating fluid out. Many patients that get benefit will notice some wt. gain. I would embrace the improvements. When your stomach gets better we may try weaning the florinef again. ''