cardiactec

mine did that when i was in the hospital recently. and again last fall in ICU. dropped down to 70 systolic lying down while sleeping and then even after they woke me up. the alarm kept going off. lol. it was kind of amusing actually. i felt fine the whole time.

I do think it's retained water weight........ .....what is concerning is when i saw my PCP a few days ago, he heard what has always been a "soft systolic" MILD murmur as a very "prominent" murmur. i also have been getting more arrhythmic since starting florinef (haven't had my K+ checked yet, doc wanted to wait three weeks in from starting florinef, so wondering if K + is messed up from florinef). i was concerned when my doc told me the murmur was ''very prominent'', but I didnt say anything at the time because i hadn't put two and two together in regard to florinef/ weight gain. the obvious concern is too much fluid retention which could, in a severe case, lead to congestive heart issues. i do not think that is where i'm at, though i am concerned that the murmur was more prominent a few days ago when it has always been "barely" heard and "very mild". mayo clinic had to have me to valsalva manuever to make out the murmur (at that point i guess they were wondering if i had MVP and whether or not i should be prophylactic before dental procedures). the doc then said she wouldnt have really been able to detect a murmur on me if she had not had me valsalva. i also see my cardio every three months and a couple months ago my cardio said he barely made out the murmur. i am taking .2 mg's florinef a day. i do feel like my appetite has picked up since starting florinef but i am still unable to eat much because though i have an appetite, i start to try to eat, and i get sick. i know for a fact that my diet has not changed over the past few weeks, so i am pretty certain the weight isn't coming from caloric intake. how am i feeling ?? eh, it fluctuates day to day, as i know you all are familiar with the same feelings. my lightheadedness and tachy are better since having started on florinef, but my GI symptoms still persist, even with the boost of increased appetite, i am still unable to eat much without getting sick. ( i put in an email in to my cardiologist to bring this to his attention. he's pretty good with replying within a day or two, so i guess i will see what he says.....

WHOAAA! So usually I weigh around 120, at 5'8'. it is a struggle for me to keep up on my weight because of my gastroparesis issues that i have been having, that have been a lot worse lately. i am going in for surgery in two weeks for them to fix the neurstimulator inside my abdomen that isnt working to try and help with my gastro symptoms (nausea and vomiting mostly). i started taking florinef about three weeks ago because my BP has been in the toilet. I went to the doctor's three days ago and my weight is up to 132!!!!!!!!!!!! I didnt believe it because the most i have ever weighed was 126 and that was during a good stretch with my gastroparesis. last weight, about a month ago before starting florinef was 122, now i'm 132, that is 10 pound weight gain in a month! my question is, does florinef make you put on fluid weight? what are your experiences with florinef? i have taken this med before, long time ago but i do not remember gaining weight on it ... ... i'm pretty psyched cuz i have been wanting to get up to about 135-140 with my height of 5'8', i think that weight is appropriate. i have always felt way too thin and people of course make comments like crazy on my size, which drives me nuts! just not sure if this is "healthy" for florinef, if the weight gain is actually FROM florinef, for my weight to be increasing due to fluid retention ?? i have not been eating much either, just what i normally take in, mostly instant carnation cuz my tum has problems with solids, though i still am able to take in some solids. i have no changed my diet at all though, eating bare minimum actually due to tummy distress/waiting for 2ns surgery for enterra therapy correction. what are your thoughts?

hey melissa, thanks so much for sharing that info with me. i appreciate it. god know i'd give ritalin a shot if i didnt think it would cause severe tachy issues on top of my already ready severe high heart rates. as for SSRI's, i have tried a couple low dose SSRI's and they caused GI issues along with some other bizarre side effects...... my cardiologist has called in florinef, so i guess i'm going to try that again, for like the fourth time. lol.

unfortunately the majority of the time, i have had to choose between a career or social life. i dont have the energy for both.

Hi, I have to have another GI surgery in a few weeks and I dont do well with pain meds that are morphine derivatives - specifically anything under the names vicodin, oxycodone, percocet, hydrocodone, codeine, dilaudid, etc. does anyone know of any narcotic pain meds that are not part of the vicodin/codone/codeine meds/derivatives ? I need something for the pain that this surgery causes, but i cannot take any of the above mentioned and unfortunately just regular pain meds like aleve or tylenol doesnt/didn't help.

never heard of licorice either. will give it a shot. thanks for the advice! i dont think i'd do well with cymbalta or any SSRI, SSNI as the majority of them have major GI side effects and my tum can't take any more nausea/vomiting.

has anyone heard about ritalin being used for hypotension? probably wouldnt be good though in pots patients as i think one of the side effects is pounding heart! lol, got that covered already!

hi, i haven't tried effexor. i am curious if it might have too many GI side effects for me to handle. with my gi issues, gastroparesis, a lot of the SSRI's have major GI side effects such as nausea and loss of appetite.... mestinon, i am pretty sure i tried awhile back and like the above mentioned, i think it caused a lot of GI disturbance. thanks for the suggestions though. any other thoughts, keep them flowing!

Hi all, I have tried florinef, clonidine, and midodrine in the past, in all different combo's and none of them helped with my light-headedness issues. I saw my PCP yesterday and my BP in his office was 76/40 and I felt so light-headed and dizzy it wasnt even funny. I am on a lot of beta's which may be contributing to the low BP, but the doc's dont really want to pull me from my BB's because of my crazy HR (even on beta, my rates can still get up to 180's). Any thoughts of other meds, specifically any NEW meds, that would help kick up my pressure? I have been salt loading and increasing my water as much as possible, though it is difficult because of my gastroparesis/nausea/vomiting issues. Thanks for any suggestions!

Angela, you poor girl, I am praying for you hun! I hope they figure out what is going on and that someone starts to truly INTERVENE on your behalf and not put you and your very OBVIOUS medical needs on the back burner! so sorry you are going through this. Please keep us informed and let us know how you are once you are out of the hospital. ***HUG*** -Angela (cardiactec)

generally people with POTS only have sinus tachycardia (which wouldnt be or shouldnt be classified as "atrial runs" ie: PSVT). "atrial runs" = paroxysmal supraventricular tachycardia (PSVT) which is not POTS. Paroxysmal means "sudden" onset, which means your rate doesnt slowly increase and decrease as with POTS and a sinus node originating tachycardia. Sinus tachy is a "normal variant" meaning a rhythm that is fast but is coming from the normal electrical pathway in the heart, the sinus node. PSVT is a rhythm that is coming from somewhere (above the ventricles) outside of the normal electrical pathways in the heart, an "irritable" foci (area) within the heart. a 7 beat run is very very short in duration, but if you had bits and spurts, especially 40 runs in 24 hours, it may be something to investigate with your EP - maybe to either bump you up on your cardiac meds/ BB's/antiarrhythmics or if very bothersome, look into an EP study/ablation. are you on cardiac meds right now? did they note how fact the atrial run was? generally the faster the rate, the more symptomatic you are/can be. I noticed that you wrote 139 max for your rate and was wondering if that was your sinus tach (POTSY) rate or if that also was your atrial rate during your atrial run/PSVT. ? generally with PSVT, the rates are a lot higher than 139, more like 160 +, but i have seen "slower" atrial tachs. Your rates, aside from the above mention, look pretty normal.

hey girly, sorry you're going through all this. i have an ultrasound today to check my ovaries. i had a laparoscopy in may for endometriosis. i had an endometrioma the size of a plum that they had to remove. during my laparoscopy a month ago for my device insert (enterra therapy for my gastroparesis) the surgeon found a "cyst" on one of my ovaries and told me it was a common thing in many women. i followed up with my GYN about it, they did a CT and saw that i had a few cysts on both ovaries. today i have to go in for an ultrasound to determine if they have resolved (as my GYN said they are common in women, but if they do not resolve on their own, they need surgical attention). i have a lot of problems with narcotics. someone posted somthing about only being able to take phentanyl. this is the only pain med i can take but only comes in IV form or patch, and generally they dont prescribe it in patch unless you are terminally ill. (there are a lot of people who get easily addicted to this type of pain med, so rarely is it prescribed). yeah, vicodin i used to be able to tolerate, but not i cannot - makes my nausea 10 times worse. i have been really nauseous the past several weeks, but thought the majority of it was from my gastroparesis, but like you, my GYn feels that a lot of the nausea is also due to pain and the large ovarian cysts. i hope you get some answers today about what is going on and hope you have an ok time with taking the pain meds. keep us posted. -angela.

Hi all, Well, the GI surgeon has to go back in to fix the enterra therapy neurostimulator for my gastroparesis ... ...the new surgery date is november 10th. The surgeon said that he has to replace the leads and also put more "padding" or "insulation" in between my stomach and where he sutures in the stimulator leads. he said that this should fix the problem, but worst case scenerio, he'd have to go in for a third surgery and move the whole stimulator over to the left side of my abdomen and "re-wire"......i am hoping and praying that a third surgery is NOT needed and that there is success with the second surgery. I really am believing that once they get the kinks out, this device is going to help my gastroparesis symptoms out. thank you, specifically mack's mom, for your posts and your lengthy encouraging and concerned email that you sent a couple months ago that i still have yet to respond to! i also thank the rest of your for your support and care. you all are wonderful. will keep you posted. -cardiactec.

sorry john ,meant to post the breathing issue and beta blocker concern on this post, not the psychiatry/lexapro post.

Just wondering how long it took you to get it and what hoops you had to jump through during the process?

hey john, are you still on your beta blocker? i see you have one listed under your meds - metoprolol. looks like you are on a low dose, but beta's can cause breathing issues. generally though it is with a lot higher dosaging than what you are on (if you are on it). why did you go see a psychiatrist? did your doc refer you to one because of the breathing issues/chemically induced panic?

I havent heard of a new pacer. should have clarified in the above, as I assumed you also were referring to an ablation of the sinus node to rid yourself of your tachy, which would then generally include having to have a pacer - what happens or has happened in people who have gone in for sinus node modification (basically patients with inappropriate sinus tachycardia) is the sinus node becomes ablated (burned away) because docs have thought that the sinus node was the culprit of the tachycardia in pots patients/inappropriate sinus tach patients and then the heart is left with having to have a "different" source for electrical impulses of origin, enough to sustain pressure, etc (because generally the sinus node is where all electrical activity starts, and has a resting intrinsic rate of about 60-90). if the sinus node is eliminated from the equation, patient's are/can be left with rates that drop so low that it then requires a pacemaker. this is what i thought you were referring to. have you tried all meds? florinef ? midodrine? beta blockers?

I didnt have the muscle spasm, just horrible pain and literally white, all white, stool. it wasnt mucous, was all stool. not sure what your symptoms could be from. bizarre. ever have this happened before? are you/have you been on any long term antibiotic use? I also had an issue with white mucus discharge that smelled foul foul foul (sorry for such not so pleasant specifics) after taking antibiotics to try and treat acne issues - was on the antibiotics for close to 10 months and then started in with lower abdominal pain and white mucous foul smelling discharge (also felt like i had to go to the bathroom, but all that would come out would be white mucous globs) -- the doc had me go see a GI and they did a sigmoidoscopy and found that i had acute colitis from, what they believe, taking antibiotics for too long -- the "white globs" were actually dead white blood cells from the infection inside my colon, from the overuse of antibiotics killing off all the "good" bacteria. has your doc ordered a stool culture? that would probably be the next best step.

first question - are you on inderal? i was taking that and started in with white stools. it was causing liver problems so i had to stop it. same symptoms as you describe. white stools can be a sign of other things aside from meds. some of these things include gallbladder issues. i would get in to a doc stat or e.r. if severe pain and white stool persists. hope you start feeling better.

I have been taking beta blockers and some anti-arrhythmic's for about 5 years now and for some reason, the past couple months it seems that when I take them, about 30 mins later, I'm WIPED OUT for the day - fatigued like crazy. I am taking 100 mg's of toprol xl and 100 mg's of flecainide a day. I have never had an issue with horrific fatigue as I do lately with taking these meds. Anyone else have this problem? I know fatigue generally is a symptom of POTS as well, but wondering specifically if those who are ON beta's get fatigue from taking them or if you are NOT on beta's, you aren't because of the side effects.

sinus node ablation and pacer therapy is contraindicated in POTS patient population. In most studies, the majority of patients who underwent such therapy were worse off than before sinus node modification/pacer therapy. The distinguishing factor in POTS population vs. those that have other conditions truly requiring pacer therapy is that in POTS patients, the theory is that the sinus node rates (sinus tachycardia) that presents is actually a mechanism (defense mechansim by the heart) to help compensate for something else that is "broken", essentially to help maintain/sustain patient's blood pressure to various degrees so that patients do not pass out. some people still DO pass out, but overall the heart IS compensating by beating faster to maintain adequate blood flow to the brain - ie: maintaining blood pressure regulation. a good EP would know this and would not even suggest pacemaker therapy/sinus node modification in POTS patients. I dont know your story, so perhaps there are other issues you have along with POTS that requires pacemaker therapy. I know there are a couple people on this site who have had sinus node ablation and became significantly worse off having gone in for SA node ablation and in turn having to have pacer therapy. morgan, i believe is one of these people. sorry for putting you on the spot morgan - i think you should chime in on this discussion since you have first hand experience here! take care. good luck to you. cardiactec.

the person you mentioned who "reads ekgs" and mentioned what you stated as "compensatory system", the only thing i can think of that the person was talking about or trying to say would be your CONDUCTION system - meaning the way your heart works electrically, the "wiring" of your heart. he/she was probably thinking that maybe you have something more than POTS, as pots isnt an electrical problem with the heart. maybe they were thinking arrhythmia of some sort. many many many things can cause the sensation you describe, anything from autonomic dysfunction/neuropathy, to lung issues, to arrhythmias/heart issues, to anxiety. have you followed up with your doc about this? maybe a chest x-ray and/or event monitor at the time this sensation occurs would be a good idea, since you mention a sensation of your heart doing things, skips, etc. good luck, hope you feel better. cardiactec.

what were your heart rates?

hey flop, i havent heard of the med but will definitely have my cardio check it out - i obviously need something else to slow my heart down!