cardiactec

I never had any palps - mostly nausea was my worst complaint - hence the reason for all the GI tests/brain and cervical MRIs. I also had some SOB - hence the reason for all the pulmonary tests...........my vitals were always normal sitting, so nobody ever suspected POTS. it wasnt until a doc one day, "just to rule it out" were his exact words, had me stand up and take vitals and his chin dropped and he asked me if i felt my heart racing - I didnt, only thing i felt was that darn nausea and SOB that nobody could explain, even after extensive testing - then he told me my HR went from 90 sitting to 198 standing - ........i think that explained the SOB?? LOL. ....that started the cardiac work up, first with ECG -- a very bizarre P wave morphology on ECG, which then led to the echo's and cardiac cath (they were checking intracardiac pressures because my P waves were like mountains peaks on ECG, which was making them think right heart pressures were up = and when echo looked fine, they were thinking primary pulmonary HTN, so they did the cath to rule that out........ ....phew, finally after all the invasive tests, they got to the tilt and concluded POTS, then after all the invasive GI testing and after the diagnosis of auto dys, they suspected my nausea could be due to gastroparesis (since gastroparesis is linked to auto dys problems) and did the GES on me........... been a long road, but i'm glad they've figured some of this out! think i'll write a book! haha!

I was just talking to my parents tonight, thinking of ALL the tests that I went through before being properly diagnosed with POTS, Gastroparesis, and Ehler Danlos..................check THIS out -- all before the age of 21!! ---> scary!!... Pulmonary perfusion scans Pulmonary function tests Pulmonary/Chest CT scans Upper endoscopy X2 Barium swallow x2 Sigmoidoscopy Colonoscopy Laparoscopy (found endometriosis but were trying to find the root cause of my nausea - it wasnt from endometriosis either!) Cervical MRI Brain MRI Lumbar MRI Bone scan Transesophageal Echo Transthoracic Echo Right Heart Cardiac Catheterization Stress test/Stress echo Multiple ECG's Multiple chest x-rays Crazy amounts of blood work/labs Holter monitor Nuclear Hida Scan Peripheral Vascular Ultrasound Abdominal Ultrasound Pelvic Ultrasound ENT testing and FINALLY, DRUM ROLL, for more conclusive answers --- the tilt table test and gastric emptying study. I'm probably forgetting a few tests before finding more clear cut answers to some of my symptoms.........unbelievable......just wondering, how were YOU put through the ringer before being properly diagnosed with autonomic dysfunction?? what tests did YOU have to endure before being properly diagnosed?

Thanks for your replies....I have actually seen a dermatologist, but unfortunately it was when i was not having any flare-ups. the only time i have been seen during flare-ups is in the ED and they always say contact dermatitis. I never actually have seen a dermatologist with the specific question of mastocytosis or to have them check for it, because i always just thought it was some stupid skin reaction and nothing related to my pots and gastroparesis.......i am now reading otherwise in regard to this as my PCP has pointed out that systemic masto can be linked to dysmotility, hypotention, tachycardia, and syncope - along with other bizarre symptoms that can never be pieced together.......... my PCP that i saw yesterday took one look at the rash and immediately thought of mastocytosis......I am skipping the dermatology appointment, considering I have been to one for EDS skin biopsy testing and he referred me back to the hospital facility for such testing -- i never actually saw a dermo for mastocytosis because i never even knew of such a thing til now, and always thought these skin rashes werent anything related to all this other stuff -- so the few times I HAVE seen the dermatologist, it was never for these rashes - just for acne/EDS evaluation,etc ..........so now, my PCP says he is going to call the hospital and have me scheduled for skin biopsy for both EDS confirmation and also to be checked for mastocytosis.... i am also currently scheduled to see a GI surgeon for gastric pacing -- keep dropping weight and am nauseous still. BUT, my PCP says it is a good idea to try and find out the cause of the gastroparesis before proceeding with gastric pacing because HE SAYS gastric pacing tends to work better on people with "nerve" problems to the stomach (neuropathies and such) and if my gastroparesis is related to mastocytosis or smooth muscle/collagenous problems (EDS) than the pacer is less effective in such scenerios. .....this is why i have been trying to get to the bottom of the precise etiology of all this - because essentially, the best treatment cannot be recommended or established until we know what we're dealing with. last thing i want to do is get a GI pacer and not have it work because of the potential that the dysmotility isnt being caused from nerve impulse problems (neuropathy), but instead from mastocytosis or smooth muscle disorder (or collegen disorder - EDS)..................we already know i have EDS III, so...........my dysmotility could be from that essentially, so a GI pacer appointment probably isnt the way to go anyway, even IF i DO have masto.........but then again, need to find a better way to control the terrrible symptoms of gastroparesis.....and running out of options for that.... Thanks for all your replies. I appreciate it. cardiactec.

Saw my PCP today for gastroparesis follow up and showed him the rash (of what was still there, since this started a couple days ago)..................he questioned mastocytosis?? anyone have this?

Hi all, I have never put too much thought into skin reactions as being part of anything to do with my pots, but a couple days ago, accounting for the 10-15th time in a total of two years and occuring more frequently lately, i am getting these crazy red, raised, bumps (a rash) all over my arms, torso, and back. i have not changed any detergents, used any different hair/cosmetic products/soaps/etc.......I am only really allergic to morphine as far as i know......this doesnt look like hives either. ....in two years, i have ended up in the ER twice because of how severe the itching was. both times they told me "contact dermatitis" and prescribed a steroid cream........the cream helps some, but i wonder, can someone get contact dermatitis THIS much?? -cardiactec.

They found "acute" colitis with me. basically said it wasnt a big deal, just an acute thing, and nothing that would continue on or become a chronic problem. havent had any problems with it since and that was 4 years ago. you mentioned heavy periods. my aunt has had heavy periods for years - at first it wasnt ever a problem for her, but later on in her life, she started getting anemic and actually passed out on numerous occasions from losing so much blood from heavy periods.......so this could be a potential reason as to why you are having problems with anemia. it was the case for my aunt anyway. hope you find some answers. cardiactec.

yep, I made my bed last night (not that this is even "true" exercise) and felt a little short winded and shaky after, I took my pulse - 150 and that's on a hefty dose of beta.... .....I ride my bike flat surfaced to get some exercise and both during and after I feel very stimulated and my heart goes nuts, along with feeling nauseous and shaky. not fun. feels like you're still exercising even hours after you have stopped.... take care. hope you get some answers/help. cardiactec.

Dawn. ick. so sorry. It wasnt a pleasant experience for me -- I'm not going to sugar coat it. it WAS doable, just not one of the more pleasurable experiences of life! What I did was CHILL IT (it is easier to drink when cold cold cold), actually put ice cubes in it, I also had a cup of water next to the cup of colite (or whatever the prep is that they are giving you to drink. I held my nose and literally guzzled. after each glass, I would chug down the glass of water and then repeat the process after waiting 10 minutes...........I sat there, doing this process for about two hours. You can do it. hopefully these little suggestions help you out. (by the way, it doesnt matter the "flavor" they give you. IT ALL TASTES THE SAME! ) you'll be okay dawn. wish and pray the best for you. the prep is definitely the hardest part. BTW, I will be praying/thinking for your brother. I am so happy that he has a donor and pray the surgery goes well for him. cardiactec.

I have had a colonoscopy and sigmoidoscopy. the sigmoidoscopy was BY FAR worse than the colonoscopy. the colonoscopy was a walk in the park for me -- because they sedated me so much that i dont remember a thing. i actually had an endoscopy AND colonoscopy AT THE SAME TIME. the effects of sedation afterwards was a little rough (made me nauseated) but other than that it wasnt bas. i had the colonoscopy when they were still handing out BY THE GALLON (not even joking) prep jugs of colite. i had to drink THE WHOLE GALLON. NO JOKE. it was horrible. i think now the prep only involves this little dinky bottle of something, like 8-10 ounces....... hope your colonoscopy goes well. the prep is tough, but hey, if you arent stuck with drinking a gallon of essentially laxative, i'd say you're in ok shape. wishing you the best. cardiactec.

well i went in to the hospital today ORIGINALLY to WORK and ended up in the ER as the patient..........so sick and weak from my stomach problems....................it is amazing though how helpful a few rounds of IV zofran can be!! MUCH BETTER than zofran pills..... hanna, yep, i think you're right that normal time for 1/2 the food to empty out of the stomach is 90 minutes (hour and a half) ....my T 1/2 time on GES was 200 minutes, so a little over three hours.............dont know why my neuro says that THAT isnt gastroparesis. doesnt matter anyway because now THREE DIFFERENT GI docs have confirmed that I DO have it.............so dont know what the neuro is talking about....................what was your T 1/2 time hanna??

I cant take ''time off'' from docs appts even though i'm tired of all this...... i am losing crazy weight amounts and am getting very sick because of it. the BOSTON GI doc i saw a few months ago was notified of all this (what's going on with me), has copies of all my GI tests, and told ALL the docs (yep, the neuro in boston) today THAT I DO have gastroparesis and that we need to proceed with getting it under control because it is obviously getting worse........ i have an appt scheduled with a GI surgeon. at this point, i know it's an extreme measure, but my symptoms and weight loss are pretty extreme, so it's not time to sit on this or take time off from appts................. thanks for your concerns/comments. glad you guys are here to listen - and care. cardiactec.

I am having major problems with my stomach from WHAT I THOUGHT was due to gastroparesis that was diagnosed with nuclear gastric emptying study. I had endoscopic botox injections last week to try and combat nausea and such. So far this has not been successful at helping my nausea and helping me gain weight. I called my neuro today and told him all about the latest and greatest and asked him what he thought of gastric pacing for this because the GI doc in maine that I see is now referring me to a gastric surgeon with gastric pacing in mind. The neuro in boston that I see, that I spoke with today started telling me that he doesnt even think I have gastroparesis and even if I did is "it clearly very mild" (I gave him the nuclear imaging reports). I was told by my docs in maine (PCP, CARDIO, GI) that this was a moderate case of gastroparesis and is causing my weight loss, nausea,etc. the neuro said basically that I needed to be assessed down in boston because they were all wrong in maine and that I would be making a huge mistake by having gastric pacing.... I told him I could not afford to lose any more weight, that i was feeling very weak, fatigued, nauseous, and that it needed to end. he said if it were severe gastroparesis, to the point that i was unable to eat and vomiting all the time, that he could see me TRULY having gastroparesis, but because i'm not vomiting and can eat, that I dont have it -- EVEN THOUGH the gastric emptying test says otherwise and all my docs up here say otherwise also. he left the convo at me needing to talk to a GI doc I saw several months ago in the boston area who WAS NOT HELPFUL in the least bit and told me of therapeutic options that I had already exhausted that HAD NOT HELPED. he said that I shouldnt be going through him because he is a neuro and has nothing to do with GI stuff, heh, but on the same token, he is willing to READ supposedly ACCURATELY a GI test (GES?) ?? I told him I called him/referred to him because my GI doc has told me that my GP is from neurological involvement -- so I wanted his feedback...........well...I GUESS I GOT IT! I am so sick and tired of playing middle man with all these docs. I TOLD THE NEURO to call the GI doc and talk to him since he is my doc and is part of my care! he said I need to make the calls. NICE. -cardiactec.

stress testing can wipe out someone WITHOUT autonomic dysfunction or, who is otherwise, completely healthy. We tend to push the patient, literally, to the max during stress testing in order to get the best diagnostic data we can....we do this by trying to have the patient go as long as they can, every three minutes, with the treadmill picking up both with incline and in speed. we try and reach a target heart rate specific to the person's age in order for the test to be considered diagnostic. If you find you are fatigued and wiped out normally or when you are too active, than I would suggest you avoid trying to work after having your stress test and instead, go home and take it easy. I know with my own experience, after my own stress test, I was very wiped out and just vegged out the rest of the day. Good luck. -Cardiactec.

just wanted to post this. --> http://www.cnn.com/2007/HEALTH/conditions/...reut/index.html

I know exactly what you're going through.....hopefully it passes.....if you feel this is a progression of your gastroparesis, i'd check in with your doc... take care and i hope you feel better soon.... p.s. have you tried the anti-nausea med zofran? it's been one of few that helps me....

hey jacquie, yep, i have trouble swallowing - both solids and liquids, mostly solids though.....it is very uncomfortable....not sure what could be causing it..........my doc thinks mine is probably from dysmotility problems in the esophagus and wants to do an esophageal manometry test on me to see if this is what is going on.... you could have esophageal dysmotility..........or, like you said, allergies could be a factor. hope this passes for you...

lol, susan, thanks for your message. i'll try the peanut butter! ) these "bones" definitely need some meat! wow, i cant believe the respiratory therapist you work with has BOTH a gastric and cardiac pacer! poor girl! BIONIC WOMAN?? i bet she has a good wit about her though? i think you kinda have to, to a point (especially with TWO pacers!), in order to move beyond your situation. laughter/humor definitely IS the best medicine - though sometimes, you need to be taken seriously, and NEED to be serious also. but definitely, laughter helps get through a lot of this.....and tears! a good dose of both works well for me! ) does the woman you work with, is her gastroparesis idiopathic or are they relating it to her pots? i know with some of my docs, some think my gastroparesis is related to my POTS/ehler danlos while others dont think any of it is related..... ..i'd LOVE to chat with your friend regarding gastric pacing (just in case it comes down to this...), if she is willing to chat, you can give her my email address -- cardiac_tec@hotmail.com thanks for your care and concern! -cardiactec.

Nina, so sorry you are having problems now with your weight/eating......I will let you know next week if i see any improvements from the botox.....if so, perhaps, if your situation continues to get worse, maybe you could consider botox for possible treatment.... thank you all for your posts. i am glad you all care so much for me. uplifts me as i go through this. any time any of you need me (anything, advise, etc) dont hesitate to PM me. cardiactec.

Hi all, I had my botox injections via endoscopic procedure yesterday.........I'm in a bit of discomfort today with my stomach and throat (I guess, according to the doc he found I have a "J shaped stomach", and said because of this, he had a hard time getting the distal site/sphincter to inject and this is why my throat hurts/stomach hurts.........i also had problems with vomiting after (they gave me way too much sedation, i guess, because i asked for more?? I cant remember asking for it though cuz they had already given me some prior to me asking for more, i guess??? LOL).....also had some problems with HR - my parents were in recovery with me and they said the monitor was displaying HR's everywhere.......... guess it could be from the sedation - never had a problem with HR's -- sedation/anesthesia before - not even after getting pots, so, that was new for me.... anyway, the doc said we'll know in three days if the botox was successful in helping the gastroparesis (i should start feeling less nauseous and hopefully be able to eat more/pack on some pounds)....he said if this doesnt work, they need to do gastric pacing as he is seeing way too much malnourishment/malabsorption/weight loss with me.....so I HOPE this works, dont want the pacer..... just thought i'd fill you all in. hope you all are hanging in there with your own daily physical struggles. keep hoping.

basically, in a nutshell, beta blockers help in many different ways, but mostly to slow down the heart rate. they also help with adrenaline surges. on the same token though, they can drop out your blood pressure (this generally is with higher dosaging). there are many different types of beta blockers, some work more on HR and less on causing drop out in BP. I know with me, the sotalol I take has helped with slowing my rates down to a somewhat appropriate level and has helped a little with tremor/weakness. I know with some people though, beta can CAUSE weakness, and also more dizziness/light-headedness. beta also can increase fatigue problems in people with or without pots................higher doses seem to trigger or instigate further problems with symptoms and most POTS patients are on a fairly low dose of beta and i believe, have less problems with these side effects because of the low dose. I'd give it a try and see if it helps out with your symptoms......in low doses, beta's are pretty well tolerated....

I work about 24 hours a week in a hospital setting, some days are very busy (full of adrenaline rushes and stimuli from the ER setting) and some days are quiet..........I am symptomatic either way, but moreso with my GI problems than with standing problems from POTS --> (ex. dizziness). I generally am sitting most of the day at work anyway, so even if i'm having a bad day with symptoms, it doesnt matter because I'm not symptomatic when sitting..... if i couldnt work, I'd lose my sanity, so i push myself many days, probably shouldnt and hopefully wont pay for it in the end, but as for now, i'm content to simply just be able to work - whether symptom-free or not. sorry to hear you havent been able to work for awhile. hopefully you'll be on the upswing soon.... what are the symptoms that prevent you from working? and an even better question, are there any meds/other things you can think of that would help you to be able to work -- even if just part time? also, what did you do for work before getting sick? if you were working at a job that required a lot of physical labor (construction, ex) than perhaps you could try something where you arent "up" as much, office work or something? hang in there. easier said than done, I know. -cardiactec.

sometimes the cleaning solutions they use on medical equipment is very potent .....just a very wild guess here, but maybe they had disinfected the machine/the bed you were on prior to your test, with some potent type of chemical and caused the reaction you described.... ?

Congratulations! What a blessing. Hope you're feeling better soon from the pots.

Thanks Rachel.....I'll let you know how it turns out...

I have taken this med, and i can tell you, it also helped a little with my nausea but totally wasnt worth it to me, as i too had hallucinations while on this med..........i repeatedly literally kept seeing a dead man in my room, and i couldnt tell sometimes if i was dreaming (actually asleep) or if i was awake when i saw this - that is how messed up i was on this med...... there are many other drugs out there to try to help with your nausea, though i have pretty much exhausted all pharmaceutical agents to help with MY nausea, without success............I am guessing this is the case with you....but if not, please try some other med as it is not worth dealing with these crazy symptoms you are having from clonodine - no med with worth taking if you are literally scared to take the drug because of the symptoms you are getting from it....... I would talk to your doctor about this. this is nothing to be taken lightly. also, have they figured out the cause of the nausea? for example, if it is due to gastroparesis, perhaps they can try pro-motility meds on you to help with nausea..... take care.