sick_of_being_sick

Hi Everyone, I've had POTS for over a year now, and I'm constantly getting better. The doctor thinks its partly because I am now anemic and partly due to a viral infection I had 2 winters ago. I have noticed that when I drink Brita-filtered water, my stomach starts bothering me and some of my other POTS symptoms (headache, dizziness, muscle tension) start flaring up. I'm not say that there is a correlation, but I read on the internet that activated charcoal decreases iron absorption. So if this is the case, and if some of you have POTS due to anemia, I was wondering what type of water you are drinking and if you have noticed a pattern like this. When I drink water at work, I don't experience this (I believe it is filtered also). Is all filtered or bottled water filtered with activated charcoal? Could there be another component of the filter that may interfere with iron absorption? I just wanted to know everyone's thoughts on this. Ericka

Hi Felicity, I was just diagnosed by my internist with POTS about a month ago (after over a year of searching for answers) and I must say that my symptoms seem to get worse depending on that "time of the month". A few years ago, before I started getting sick, whenever I would play sports, I would almost pass out and my heart felt like it was going to beat through my chest. The funny thing was, out of the 3 times it happened, that same day or the next day, I would start my period. So there might be a link to hormones and POTS. Now, during my cycle, there are about 2 weeks where I'm able to eat, breath deeply, and go the bathroom normally (won't share the details :-)). This is followed by two weeks of not being able to function at all. My prolactin levels were (and still are) always elevated (never been pregnant), but my endocrinologist can't figure it out. My internist said that POTS can have an affect on your endocrine and hormonal levels. I also have problems when I wake up. I feel like my insides are tensing and I can feel my heartrate rising. When I finally get out of bed, my heart rate rises to about 130-140 bpm. And my body is SUPER sensitive when I get upset. I also have problems sleeping (I feel like I am only half-asleep throughout the night unless I take muscle relaxers like Ativan as needed. . .maybe you can ask your doctor if they may work for you. . .I absolutely love them!) My friends always say that I need to relax, but I try to tell them that I am relaxed when I get these symptoms. I am on Effexor, which seems to be working pretty well. The best thing that works for me is trying deep breathing. Sometimes its frustrating because I can't breathe deep enough (like something is stuck in my lungs), but after doing it for a while, I start to feel better and my heart rate drops. I am going to my internist in a couple of weeks for a follow-up and to discuss more symptoms (especially the hormone thing), and if I hear any new news, I will definitely let you know. Hang in there! Ericka

I can say that ever since I've been sick (since last year), I have noticed that I cannot drink any diet sodas or put equal in anything I consume. My stomach goes completely out of whack and sometimes I get headaches! It took me a while to put two and two together, since I used to use equal all of the time (never ever had problems). Splenda is ok. . .but sometimes I will use just plain sugar (which I'm not a big fan of since you have to put so much of it in your beverage to actually taste it!). I'm so glad I read your post. . .its good to know that I'm not the only one who can't tolerate it.

I am writing this because I don't know who else to turn to, and I figure I should share my pain/story with people who may be able to relate or have any advice. In February 2004, I went to the doctor to get a cholesterol check (it runs high in my family, so I get it checked every year). She ran a complete CBC test as well and when the results came back, she said my cholesterol was ok, bu I had remnants of a virus and asked me if I had been sick recently. I told her 3 weeks prior, but I felt fine. I had a friend who visited me and I believed I just caught a cold from him (his doc said he had some cocksackie virus). In March 2004, I noticed that my digestive system wasn't functioning properly (it was very slow). I have always been active and been able to put away lots of food (my favorite thing to do in life is eat! ), but work had kept me away from the gym. One night, I went out with some friends who told me that I needed to "destress" from work, especially since I had had some issues with a co-worker who was really upsetting me. On our way out, I noticed that I felt really full and nauseous. I was only out for an hour when I came down with a serious bout of diarrhea and vomiting. But I didn't "feel" sick. . .normally when I get symptoms like this, I feel weak or worn out all over. Needless to say, the next day I was fine. But on returning to work that next week, I noticed that everytime I ate, I would feel nauseous after about 5 hours (and after the nausea subsided, I would get these cold spells). I went back to the doctors and they tested me for gallstones, hiatal hernia, and did extensive bloodwork. The results came back negative, with the exception that my bloodwork still showed a virus and elevated amylase and lipase levels. So they told me it was viral pancreatitis. I couldn't eat anything. . .I had to go on a liquid diet for about a week, and eventually, I couldn't tolerate that either. I was always dizzy when I stood up, my heart would pound whenever I did the slightest thing, and I was overall very weak. I ended up at the ER because I was dehydrated. They did bloodwork and said that I didn't have viral pancreatitis. I looked at the paperwork and the WBC, lymph, amylase and lipase levels were about the same as before. I was confused. Anyway, the problem didn't resolve itself, I lost 25 pounds in 2 months, the virus stayed in my system until June 2004, and I think the doctors were sick of seeing me, so they told me to go to a GI doc. By then I was having severe constipation (could not go for 2 weeks although I was on metamucil, reglan, and a stool softener), pain on my lower left side, chest pains, trouble sleeping (nausea would wake me up), numbness in my arms upon waking, and what felt like heartburn. They did an endoscopy (to test for ulcers, food allergies, etc), colonoscopy, and gastric emptying scan. Everything came back normal with exception of the scan . . .I digested a little slower than normal, but the doctor said it should resolve itself and to take Zelnorm (I think he said that just so I would leave him alone). Nothing helped. There were times I would get in the shower and have to run out to lay down because I thought I was going to passout. My heart would beat really really fast and I would get a headache and ringing ears. This used to happen to me every once in a while when I would play sports, like run from one base to another, or play volleyball, or go to the bathroom in the middle of the night. I got a second opinion and they told me it was anxiety after I told them my symptoms seemed to get really bad after the slightest bit of stress or anger. I really felt that there was more to it than that, so I went to my gynocologist to see if it was hormone related. By this time, I noticed that my symptoms would get so bad about 1-2 weeks prior to my period and I was lactating (first time it happened, I was in the middle of using the restroom and I broke out in a cold sweat and thought I was going to pass out on the toilet. Next thing I know, my shirt was wet). He did some bloodwork and an MRI on my pituitary gland and all my tests/hormone levels were fine, except for the prolactin levels. He put me on these pills, which made me feel extremely sick, but eventually, the levels went down. After that episode, on came the stomach issues (actually, they never really went away) and low blood pressure upon standing. I tried to keep myself hydrated by drinking at least 8 glasses of water or juice, but noticed that no matter how much I drank, I could barely go to the bathroom. I went to ANOTHER doctor who was sort of helpful, and he tested me for lyme disease, parasites, and an abdominal aneurysm (he felt around my stomach and he said I had a strong pulse in my abdomen, which I can actually feel right after I eat now). All came back normal. Oh and I am so far not diabetic according to several doctors since my hemoglobin A1C has come back normal 3 times (side note: my mother is diabetic and they refuse to do a glucose tolerance test on me because they clain the hemoglobin A1C test is an excellent indicator of my glucose levels over a certain time). Although I have been able to eat a little more now, but after I eat, my heart beats fast, and then once my stomach is empty, it beats really REALLY slow. At some point, I started to believe the doctors about the anxiety, but have been on every pill (lexapro, zoloft, sarafem, muscle relaxers, ambien) and nothing seems to work. I went to a cardiologist (did an ECG, echocardiogram, and event monitor. . .all were normal), an endocrinologist (blood and 24-h urine sample to test my cortisol/andrenaline levels. . .all were normal), and a neurologist (he just looked at me like I was crazy). I started doing yoga (makes me absolutely exhausted), and getting massages (makes my arms go numb and give me chest pains mostly on my left side by my collarbone) to try to handle stress (since it is so hard for me to cope with it now for some reason). My friends at work tease me because there will be times when I get up too fast I lose my balance and almost fall over, or I get really dizzy after a meal. They also joke around because I always have my little space heater on, even when the building is warm to them. My parents think its all in my head. My doctors have run out of options, and my boyfriend tells me that everything will be ok. I am not getting any help or support and really need someone's advice. My biggest concern now is the fact that my heartrate is so high and I can't eat properly. The only digestive aid that works for me is lying on my back. For some reason, my food digests normally when I do that. I really really really just want my life back. I want to be able to play sports and go out with friends without feeling ill. If anyone has experience some or all of these symptoms, please write me back!!!!!!