StaceyYount

Thanks you guys. I did have a laproscopy done in 1991 for cysts and I really don't feel the chronic pain is that. I do get the cyst pain as it is very Noticiable ( sorry that is not the right word but my brain fog is at a high level today.) Anyway I think I will go and make an appointment with the doc that ordered the test maybe if he looks back at my chart and sees this has been going on for awhile he will look into other avenues. Though right now i am trying to resingn myself that maybe eventually they will just say it is part of your POTS. Gotta investigate though right. Thanks for your replies it means a lot to me. I had the whole GI work up in 1997 and they found the samll bowel dysmotility of course not until I was down to 82 lbs. That has seemed a bit better I can atleast eat some now and to be honest I ma scared that this is a signal that that is going to start again. Dr.Grubb told my GP taht that could happen but thinking positive hopefully not. My Gp did orgiannly mention colitis but then he got off the track. I guess I better go see him. Arghhh! Why can't we be SIMPLE????????? Stacey :-)

Hey, 2 things-1 a question- 1 a rant -forgive the rant. Does anyone have chronic pain on their lower left side of the abdomen? I have had this for months and at first it was thought to be a bowel problem but nothing was done and then a ultra sound was ordered which found a small cyst on my ovary. I have had cysts and this is not the same pain. In fact I have had that pain down there and knew it was a cyst. Anyway the doctor said it is a small cyst and should resolve itself. It hasn't in about 6 months so why should it now. Basically I have to go home and deal with it and I am quite tired of that. I guess I still hope for a test to show-- oh you have this -it is easy to fix- just take this very gentle pill and that problem will be gone. Or something- not well wait for it to go away. I swear if I hear that one more time I may scream. Though I think I am screaming now huh ? LOL To top it off I broke another tooth today so that is 2 that I have to get fixed but that is another rant. Sorry, does anyone else get this pain. Sometimes at night it gets so bad it wakes me and I have to turn over but that seems to help. I don?t know if it is just the ovary rubbing on the intestine and that is what hurts or if it is intestine or what. But it still hurts and I think it is more than ovary. Not that I want it to be but I want it to be something they can fix. This always happens I go to them because there is something I just can?t deal with anymore and they send me home to deal with it. Arghhhhhh! Anyway any ideas or help would be appreciated. I have had the small bowel dysmotility (though that seems better) and have diarrhea/constipation and it all may be due to that but some help would be nicer. Thanks in advance for the help and letting me rant. Stacey :-)

Hey, Hope you guys don't mind but I copied and pasted some of your symptoms so I wouldn't have to type them! 1. Stacey Yount 2. 36 3. POTS 4. 29 -1997 DX'd then but had my "collapse" on Nov. 6th 1995 5. Titusville, FL 6. At my lowest point I was down to 82 lbs on TPN and was not able to eat at all. That was in 1997 but 1998 back to 114 and now well.... Dizziness, tachy(167 or higher), nausea, HEADACHES,brain fog, flu feeling, sore throats,body aches, extreme lightheadedness & pre-syncopic episodes, off-balance,FATIGUE, palpitations, shortness of breath upon standing, nausea and diarrhea/constipation,sweating at odd times ,pooling of blood, sensitivity to light and loud noise, pale, weakness/tingling in arms & legs,neck pain, bedridden except use wheelchair to go to docotor. More that I know I am forgetting. 7.Everything above except for the weight loss. Still get nausea and pain but can eat enogh now to maintain. Have added chronic cough 8.Midodrine,beta-blockers, Florinef, every anti-depressant known, many others can't list them all 9. Acupuncture helps sometimes and the herbs the chinese doctor gives me I am hoping is helping. When I get a really bad headache a injection of Demerol/Phenergan helps. Darvocet helped with the body aches but then they decided it was causing my headaches so stopped ( still ahve headaches and now more body pain) Excedrin sometimes not sure why sometimes but sometimes.

Hi Corina, Isn't the internet the greatest thing. To think you are in Holland and I am in FLorida and we can talk about this thing we have and help each other. This site has been great and supportive place for so many of us! Welcome we all will help if we can! Stacey :-)

Hi, Yeah I am talking about the foot bath. Ok here it goes. You put your feet in a dish pan of water and the ion cleanse plates are put in there as well. They are attatched to the wall so the ions get electrically charged. The water is perfectly clear when you start out. After about a minute it turns a little orange ( at least mine did). My husband who is a scientist says that that first color is probably the ion plates reacting to the ions in the water. You leave your feet in there for 30 minutes. By the time it was done my water was black, green, orange, and foamy. I am not making this up. It just kept getting grosser and grosser.Now each color means something different and where the toxins are being pulled from. Right as it was starting I felt a little tingling in my feet. She then said you might feel some tingling in your feet. Weird. Now my husband, Jim and one of his collegues who is a biochemist are trying to figure out how this works. But it does seem plausible to them. Each persons water will look different. My doc said she did it on a 8 year old girl and the water stayed mostly clear. She also said that they have pulled out worms from peoples feet. I don't know if this works but at this point I am willing to try anything. Something definatly was happening and the doc says it has helped some people. And like Jim says we thought aspirin was quacks medicine at one time. My doc resisted using this for 2 years becuase she did not understand it but she used it on herself after she got a bad dog bite that wasn't healing and she siad it helped. HMMMMMM.... Opus 88 did it help you? Did I expalin it well do you think? Like I said Jim and his collegue are looking into it so if I find out anything more I'll let you know but for now I think I will try it agian! Stacey :-)

Hi Has anyone else had an Ion clenase done. I go to a great Traditional Chinese medicine doctor and she has helped me some. She just started using this ion cleanse as a way to remove toxins from your body. She said she resisted using it becuase she does not understnd how it works but it does seem to work. Has anybody else had this done? It is a long thing to explain but I will if you guys would be interested. Stacey :-) I know some of you guys read the NDRF posts too so forgive the repeat. :-)

Hey, Mine is mukiecakes, which I guess needs expalining too. My nickname for my husband is Mukie and hisfor me is cakes and when I signed up for AIM I didn't think about that that would be my screen name! Am not on it a lot but would like to chat if you see me on there! Stacey :-)

A seperate bed for each parishioner(had to look up how to spell that!)? We would be the talk of the town. :-) Stacey :-)

Futurehope, Have you tried sitting with your feet up on the pew so that your knees are bent to your chest. You actually take up less space and it sometimes lets me sit a bit longer. I have not worked since 1995 and I too use a lap top computer which has been so great! We just got it, before I would sit in weird contortions to be able to prop me feet up and still use the computer. Though don't try the propping up of feet and knees to your chest in front of a psych doc because one asked me why I was sitting in the fetal position. Stacey :-)

Hey, Way back in 1995 befire I got diagnosed a doctor at the University of Miami gave me a tilt table test and the techs noticed my hands and feet then, also the tachycardia. That doctor left the school and I did not get diagnosed with POTS until 2 years later. Sorry little vent there but yeah my hands get the purple look too. Stacey:-)

Hey, Sitting is bad for me too though I find standing worse. It helps me if I pull me knees up close to my chest so my feet are in front of me. I don't seem to get as dizzy and tired as fast. But always when you are sitting keep your feet up. Because blood pools while your sitting as well as standing. I do have worse days where I can't sit as long and it is very frustrating especially with the wait time at some doctors offices. Stacey :-)