mancmm19

I was drinking a bunch of decaf tea to help with the fluid intake instead of straight water. My doctor told me that caffeine is one of the worst things for POTS and decaf still have caffeine...just not as much. He told me the only way to drink tea would be for the box to specifically read "caffeine free." I have stayed away from all other teas for fear of getting worse...but you would think that the caffeine would help with some energy!

Hi All, Besides our POTS episodes, in general, does anyone ever feel "normal?" I get sick most days when I stand up, ya know, the usual heart pounding seeing spots, about to pass out thing...and then there are the days where I have my episodes for whatever reason and feel like I am on the verge of dying. However, even on my "good" days, I never seem to feel normal. I remember who I used to be 3 years ago, and I haven't felt that way since I got sick. I was finally diagnosed with POTS a few months ago and can definitely tell when the symptoms are in play, but why do I constantly feel not like myself? I have this malaise 24/7 all day, everyday and it has not let up ONCE since this all began in October of 06. Can anyone else relate to this indescribable feeling of misery all the time or do you just get symptoms upon standing?

Hi Kimi, I am SO sorry that you feel this way...you sound like me yesterday evening. I hadn't been feeling well all day so I just layed in bed, but it got worse and worse. I felt like I was just going to die. It felt as if my body was shutting down. I knew I needed some fluids and salty foods but I was so nauseas that I was scared to put anything in me otherwise I'd throw up. I went downstairs to sit at the dinner table with my family because I was too scared to be upstairs alone. I actually got up from the table and put my shoes on and put my pocketbook by the door just in case I decided to go to the ER. Every time I get sick it is just as scary as the first time, and I always feel like if I go to the ER at least I will be there if something happens. Trut his, after over 20 ER visits, they don't make me feel any better and I end up sitting there for hours and hours. So I decided to keep myself calm, took a Xanex, and I signed onto the Dinet forum to keep my mind off of it. Surely enough, it passed I didn't feel great last night and don't feel well today either...but am proud that I didn't secum to calling 911 like I normally do. HANG IN THERE. I am online if you want to IM me...hotpynkmmm. Michele

Hi All, It is Friday, my favorite day of the week because I get to lay in bed the whole weekend! I hope you are all doing well. I have a quick question...I was diagnosed with POTS after a positive tilt table test a little over 2 months ago. My doctor seems top believe that exercise is the cure as the meds will not work for me, my BP is too low. I need to find a doctor who knows more about this and am thinking of traveling into NYC. However, I hear a bunch of people posting about "types" of POTS. Hypoadrenic(bad spelling) I think was one that someone mentioned. What are the different forms of POTS and what tests can determine what type you have? I am eager to get as many answers as possible and begin getting better...too many years have been wasted feeling like death and worrying everyday that I'm on the verge of dying! Please post back if you have any comments...I need a more specific diagnosis!! Have a good weekend

Does anyone ever feel like they are going crazy? I used to get"panic attacks" when in high school, which we now believe were realy POTS attacks. I was feeling better in college but a stint of drinking sprung the illness back upon me. I have been sick ever since. I obviously had anxiety not knowing what was wrong with me for over 2 years, but even now that I have a diagnosis, I sometimes feel like I am about to lose it. Sometimes I get swings of anxiety and feel so tensed that I could punch through a brick wall or just explode, and other times, my body feels completely calm but I get these strange thoughts. Sometimes I feel like something bad is about to happen any moment, other times I just feel very out of it and in my own little world, and then there are times that I feel like I am simply going to just lose my mind. This whole thing has drastically interfered with my life as I'm sure it has for many of us...but what is relation between the psychological issues and POTS?

Is that POts patients or otherwise? Dysautonomia just means there is something wrong with your autonomic nervous system. THis isnt necessarily true of all POTS patients - some appear to have a deficit in nitric oxide which may be readily treatable. How do I find out what kind of POTS/Dysautonomia I have...are there genetic or blood tests? Also, I noticed your symptoms say visual snow and I have been having TERRIBLE visual snow for the past 3 days now (I always have it but this is causing me to even have trouble driving). Do you notice anything that makes it worse/better?

Hi Valliali, I am not glad to hear that you feel how I do but am glad that I am not alone or crazy!! I do not faint either...have felt like I was pushing the verge on several occasions but never downright passed out. I was diagnosed with POTS, how do I get a more accurate diagnosis or find out about CFS? People keep telling me that POTS is a general diagnosis and there are different kinds...I do not know how to go about finding out more information needless to say finding a doctor who actually knows enough to test me!

Gary, you can IM me on AIM at HotPynkMMM. I will be glad to discuss the POTS/Lyme issue with you.

Hi Gary, Well your post has been something that I have been waiting for! Please click on my name, go under member posts and read my first post. I got sick 2 and a half years ago and a year into it, after 2 negative Lyme Western Blots and a negative Spinal Tap, tested positive for lyme 3 times. No doctor would take me seriously even with my Lyme test, you know how the other half of the doctors are- I month of abx and you're cured. However, my IGM was always positive showing a recent infection, although I had been sick non stop for over a year at that point. My IGENXEX test came back positive as well, although none of the test were ever overly positive, always 2 out of 3 bands or "indeterminately positive." I was put on antibiotics and found a LLMD in Mt.Kisco, NY. He believed in chronic lyme, and I wound up being on antibiotics for a year and 3 months. You name it, I've done it. I was on Amoxicillan, Zithro, Ceftin, Biaxin, Doxy, Doryx, even 26 days of IV Rocephin. This past December I finally came off of them, not because I was feeling any better but because I was developing GI bleeding. I still test positive for Lyme though! I never had any of the major Lyme symptoms like the muscle aches and joint pains until I came off of them, but they still are not that severe. I was always thought to have neurological Lyme, but never saw any improvement on the anti-biotics (I would always just get much worse after I switched to a new type after a few months. ) I was tested for Lyme last week and it STILL came back "borderline" positive! I don't know what to do, I was diagnosed with POTS 2 months ago and have had a lot of confusion since then. I know my tilt table test was abnormal, thus making POTS a definitive diagnosis, but I struggle with the Lyme still. I wonder if I ever had it, if something other infection was triggering my tests to become positive, if I had Lyme and now POTS is the outcome, or whether I still have it and need to be back on the Meds. I should probably also mention that I tested positive for Ehrlichia and Babesia 2 times. If you have ANY input, please let me know. This is the biggest mystery as far as my health goes, and I don't want to attribute everything to POTS if the Lyme is still there. I believe in long term abx if necessary, and wonder if I wasn't on them long-enough to see improvement. Some of the other patients in my LLMD's office didn't start seeing improvement for YEARS. One last thing...before the POTS diagnosis in January, I went to Columbia University in NYC for 2 days in September to go for a Lyme Evaluation Study with Dr. Brian Fallon (I'm sure you've heard of him before). Although he is only a psychiatrist, hew has done extensive research on Lyme patients. His diagnosis was that I definitely had Lyme at some point, but after a year of antibiotics at that point, he did not know if Lyme would still be causing such strong symptoms. DO you have any advice? I'm sorry to rant, but after being sick for a year with no diagnosis, Lyme was my first answer. I took out books, went to seminars, found my LLMD, went on the forums, learned everything about it and was fine with that. I battled my story with Neurologists and Infection Disease doctors at Stony Brook, North Shore LIJ hospitals, you name it, trying to fight for my diagnosis. I had such high hopes when i found my LLMD and he believed me and was willing to put me on medicine and thought that was the end of my troubles. After not seeing ANY improvement and when the abx. were not working and causing more trouble than help, I gave up. Once I learned I had POTS, I now wonder if that was it all along or if my Lyme tests were right. Lyme was the story of my life for over a year and I am just SO confused whether it is still affecting me or not. As you know, there is no definitive test for it and all of my doctors are telling me I've had sufficient treatment. In your opinion, what do you think? My family doctor told me last week that once Lyme has infiltrated the nervous system, you will never get that fuction back. I am terrified that I will feel this way forever. Should I give the abx another go or do you think the Lyme is gone and the aftermath is POTS? PLEASE contact me...I went over a year thinking Lyme was my answer only now to be left with uncertainty. Thanks, Michele

I was diagnosed with POTS because of my Tilt Table Test. I have very low BP all the time, and upon raising me up, my blood pressure dropped and my heart rate increased, and it stayed that way until they put me down. I have symptoms all the time though, I get the "I'm about to pass out heart pounds" when I stand up and some days are worse then others. But i also get sick sitting, lying down sometimes, from heat, being dehydrated, and so forth. I get sick after riding an elevator and things like that. Is that OI? I'm trying to figure out what you mean about "Orthostatic intolerance is when your body "is on the move" or at rest and your insides keep movin." Is this why I get sick after a boat or on an elevator, because it feels like I'm still moving for hours later. I guess I have Dysautonomia which causes all of my everyday symptoms, and the POTS is what causes the symptoms upon standing?

Im sorry but your doctor is full of ****... In which study is it demonstrated that any patients with POTS get better? It has been theorised that some patients become 100% better, but most just wax and wane. The autoimmune variety of POTS is more likely to go into spontaneous recovery than the other forms, but its fairly rare im afraid. If I were you Id assess whether your form of POTS fits any of the newer described forms of POTS - such as Julian Stewarts work on normal flow and low flow pots and the role of nitric oxide. Increasing and decreasing bioavailability of nitric oxide is already possible and could find theraputic application in POTS relatively soon. How do I find out what Kind of POTS I have?

Okay, so after my mother's daily nagging about exercising (who wants to exercise when they've just worked 9 hours and feel terrible?) I finally gave it a go this weekend. I walked/jogged on the treadmill for 15 minutes on Saturday (5 jogging and 10 brisk walking) which was pretty embarrassing considering I used to do 45 minutes jogging! My heart was SLAMMING for about 20 minutes after than and I just layed in bed so it could get back under control. After resting for an hour and a half, I was able to resume some errands. Following the "usual" routine, I woke up Sunday feeling exhausted and miserable. I guess it's a Sunday thing after the exertion on Saturday's. I got very sick while walking around a department store and needed to go home and lay down. After resting for about 3 hours, I was still tired and decided to head up to bed. I got up from the couch slowly, walked over to the stairs, and went up to my room. However, when I got to my silent room, all I could heart was my heartbeat in my ears. My pulse was beating pretty fast and strong, but it was making this loud "wooshing" sound in my eardrums. I layed down and it eventually subsided, so I assume it was related to walking up the stairs after previously resting for a while. Has anyone else ever experienced this pulsing heartbeat in their ears and is it dangerous?

Hi everyone, Yesterday and today have been 2 of "those days"...you know, when everything is just miserable and you lay around feeling sorry for yourself. I try to be upbeat and positive, and to tell you the truth, although I've been sick for 2 and a half years and diagnosed with POTS for almost 2 months, I still don't accept it. I don't accept that I am sick with something that ruins every day of my life, ruins my dreams and plans and most of all ruins my good attitude. I find it hard to enjoy anything in life anymore when I'm constantly not feeling well or worrying if what I do will make me sick or if I get sick where is the closest hospital, etc. We all have only ONE life to live, and the reality is, I might be spending mine sick with no cure. I know other people have it so much worse, they have cancer, or are on dialysis or lose limbs, but I cannot accept the fact that this might be my life. Everything was great 2 and a half years ago!! How could it all be taken away so fast? I wish more than anything in this whole world that I will feel normal again some day. I know a lot of the literature says that 85% of people "grow out of it"...but is that really true? I need some sort of hope, something to go on. I am only 22 and the happy and healthy years of life that I had were far too short. I need to know that I will have that again and that I don't have to put all of my big plans on hold forever. One of the worst parts about all of this is that you feel like you're dying. With every system out of wack...how could you not? It is very hard to accept that that could be the cause of ALL of the seemingly unrelated symptoms, and I am constantly worried that there is something else they are missing. Every t.v. show I watch (Grey's Anaotmy, Mystery Diagnosis, Mystery ER) leave me wondering "Oh my goodness, those sound like some of my symptoms...could they have missed that?) It has been a terrible way of going through life and it needs to stop if I ever want to gain control of my life back. I'm sorry to rant, but does anyone have any advice or positive information? For the past 2 and a half years all I prayed for was a diagnosis, and now that I have one, I can't accept it. I am still left wondering if there is something else or if it is all POTS, will it ever go away?

Hi! I have been getting tremors as well, although they seem to have subsided in my hands. I get them mostly when I exert myself too much, or before I have an episode. Before an episode, they seem to begin in the abdominal area and feel almost like I have the chills on the inside, although they aren't visible on the outside. Then once I go into a full episode, my teeth chatter, and I get drastic shaking and jerking of my legs, arms, head, everything. So much so that I was tested for seizures 3 times! I'm glad that I finally know what's causing them though. Have you ever taken anything like Xanex? When my body is completely calm and relaxed, they almost disappear.

I have a question regarding periods, as I just got mine yesterday. Ever since I started getting sick, my periods have been thrown off schedule. They no longer come every 28 days and have ranged from as early as 17 days to as late at 39. Lately, it's been between 30-38 day though. Ever since I can remember, I have had the worst cramps, ya know...the kind that give you the chills you're so sick and miserable. But once I really started getting sick, I noticed that changing. Sometimes (like 2 months ago) my cramps got so bad so quickly and the 3 ibuprofen I took didn't make a dent in the pain. It was the worst pain I have ever been in in my entire life, so bad that I called my mom hysterical crying to come home from work because I couldn't lift myself off of the floor. I thought I was in labor and the pain in my thighs was so bad that I couldn't move. She came home and tried to pick me up to put me on the couch but I began passing out so she called 911. They put me on IV Saline and Vicodin, and the pains eventually subsided. I was checked for an ectopic pregnancy because the pain was that severe that I though I might've been pregnant and in some sort of labor. It was suggested that I most likely had endometriosis although I have not been tested yet. However, like this month period that began yesterday, I had dull cramps from the moment I woke up yesterday, and eventually got my period around 5 p.m. Since then, the dull cramps have persisted and even woke me up a few times last night, but haven't been so bad as to where I though I needed to take a pain killer. My question for you is, can POTS affect periods? I don't understand how the pain can go from one extreme top the next month by month, and I would think that if I did have endometriosis, it would be consistent extreme pain every month. Once again, just trying to figure out symptoms relate to what in this whole big mess Best, Michele

Hi Dani, I know what you are going through. I am only 22 years old myself, and started getting severely sick my junior year of college, when I was 20. I had always felt weird symptoms before then like when I was in high school, but they were never so bad as for me to think something was seriously wrong. I remember in high school getting lots of palps and lightheaded a lot, so my doc said I had low blood pressure and hypoglycemia, so I just needed some salt and sugar and I'd be fine. This did not help and then I began having "episodes" as I like to call them. I was diagnosed with panic attacks and no one believed that this was not being caused by panic! I saw a psychologist in May and June before I left for college, and he taught me some breathing techniques to help "calm me down." None of this did anything for me. However, I seemed to get a lot better after I left for school, and I would definitely notice that I felt out of it at times or didn't feel quite right, but since I couldn't put my finger on it and it would always go away, I ignored it. I joined a sorority my sophomore year when i was 19, and needless to say, we drank alcohol (I was dumb too!!!) I was ALWAYS fine, up until my junior year. What seemed like from out of the blue, my whole world as I knew it came crashing down. I had an episode after drinking, and then noticed that I wasn't feeling like myself anymore EVERYDAY. I was noticing all of these new symptoms and needless to say, they scared the heck out of me. I would notice that I could no longer tolerate drinking alcohol because within 24 hours after I did, I would go through these horrible episodes where I felt like I was just dying. I was diagnosed with Lyme disease and thought this was the answer to all of my problems. However, after being on antibiotics for a year and 3 months and seeing no improvement, I stopped. I was FINALLY diagnosed with POTS a month ago, and am still trying to figure everything out. I too, like you, don't understand how my life seemingly changed over night. How I could always do these things when I was younger and now I can barely so much of anything. I think that all of this started when I was 16 or 17...it explains a lot of the symptoms I began noticing my junior year of High school. I don't think that we will ever have the answers but I too pray that this will all go away. I am only 22 and have SO many big plans in life. I just need to feel okay to do them! I urge you to read my story, I have a post that I wrote today called "Symptoms" and another where I outlined my whole story called "Strange Symptoms, POTS? Please Help" located here http://dinet.ipbhost.com/index.php?showtopic=11760. I think you might find some similarities to yourself. Do not hesitate to contact me...I know what you are going through! We are both young and I pray that we both feel normal some day, hopefully sooner than later!! Michele

Hi Michelle, Your symptoms are the ones highlighted in blue, right? And for your first portion of the reply...what an AHA! moment!!! That is EXACTLY what I experience! Everywhere I look turns into that central point and all the little specs move toward that point. It makes everything look as if it's falling in!!! I have told my neuro and eye doctor and neither had a clue...but you do! It gets 10x worse after walking or exercise (especially if it's bright out.) I also notice it on sunny days, in the snow, and while driving on occasions. I have a feeling it ha something to do with blood pressure but I just can't put my finger on the cause yet. I also see grid patterns when I look at the carpet or a speckled or tiled floor, but I think that has something to do with the florescent lights maybe? Have you ever looked at LED lights? They jump all around for me and move in waves, it looks like the little lights are hopping all over the place. On the train, they have an LED sign that shows the name of the next stop, and the lights always move, I can barely read it! I am SOOO happy that someone knows what I'm talking about!!!

Hi Everyone, I hope you are all doing well! I just came back from my Cardiac Electrophysiologist and it was a bitter sweet visit. Some of the things he said left me very hopeful, and other left me simply confused. He diagnosed me about a month ago, and told me to keep well hydrated, have lots of salt, and do aerobic exercise. Well, I must admit I have been slacking on the exercise part (who wants to work 9-5:30, feel exhausted and then come home to run on the treadmill?!) but I have been drinking lots of fluids and have A LOT of slat (possible TOO much.) My doctor said that in 95% of his POTS cases, they all get completely better after exercising and building up their muscle tone. However, I feel miserable when I exercise and usually end up feeling worse off than before I started. Whenever I go for a run or walk, my vision gets very strange. It looks like I can see the blood vessels in my eyes and I see millions of particles that move toward a center point. Everywhere I look, I see this "tunnel" of moving particles and it makes it look like the floor, walls, everywhere I look is "falling in." This throws off my balance a lot and even after I lay down and close my eyes to regain my breath and compose, I can still see the particles moving with my eyes closed! Well, I have been in the process of trying to figure out whether I JUST have POTS, I have POTS and Lyme (tested 3 times positively but was on abx. for a year and 3 months with no improvement), or I have POTS and some other yet-to-be diagnosed condition. I need some answers...I feel like I am going crazy! I told him a bunch of my symptoms, some he said could relate to POTS and other he had never heard of. I know that he doesn't treat too many patients with POTS and seems to believe exercise is the cure. However, after being on these forums for the past 3 weeks, I have a feeling he might not have all of the information. If exercise was the key, then we would all feel great...right?! In an effort to take my health into my own hands, I have compiled a list of my symptoms in hopes that if anyone has the same symptoms, they can let me know which specific ones they have. I feel that this is the only way I will really be able to see what's related to POTS and what isn't, by asking the people (you) who have it! Thank you in advance for your responses...it will mean a lot. Everyday Symptoms (there are a lot, I know.) ? Malaise ? never feel good, vague feeling of something ?not feeling right? ? Extreme pressure in base of head/neck (usually happens upon standing or bending over, sometimes in conjunction with becoming lightheaded but not always) ? Lightheaded constantly- blood pressure always low. Drinking a significant amount of fluids or taking in salt has no effect ? Dizziness ? Feeling as if I can't take a satisfying, deep breath ? Feeling like I need to catch my breath, need to take a deep breath ? Feeling ?out-of-it?, Brain Fog. Like I am living in a dream. Everything looks fuzzy and I feel like I am just very ?not with it.? ? Heart pounds strongly after standing or minimal exercise, causing the need to stop and take deep breaths. (Echo showed ?sluggish heart? but Stress test was negative) ? On the verge of syncope on multiple occasions ? Fatigue ? Difficulty swallowing- feels as if muscles in throat just freeze ? Slurred speech, problems getting out what I want to say ? Feeling as if someone is shaking my head back and forth, brain feels ?wobbly?- usually happens after turning my head quickly but not always ? Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still) ? Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat) ? Ears constantly ?go out?- Everything will sound distant ? Left ear feels ?full/stuffy?, constant need to ?pop? or ?crack? ? Shooting pressure, occasionally in conjunction with pain, up the left side of neck ? Stabbing pains in head, occurs for a few seconds then dissipates. Sometimes this will happen a few times sporadically, other times over the duration of hours or days ? Visual problems o Trailing vision o Shaky vision o Flashing vision o Extreme after images o Bright lights, clouds o Black/neon spots o Palinopsia (visual snow) o Occasional episodes of double vision o Blurry vision o what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes ? Muscle twitches/spasms ? Tremors (mostly in stomach, not visible to the eye) ? Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills ? Nausea, lack of appetite, loss of 25 pounds over the course of 4 months ? Occasional neuropathy - shoots down arms ? Irregular menstrual cycle (ranges from 18-41 days) ? Feel very ?hypersensitive? to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired" ? GI Issues- I'll leave it at that ? Bladder pressure/tingling sensation after urinating on occasions ? Feel full all the time, no appetite, cannot eat large meals anymore ? Head rocking (my head shakes up and down in what seems to by rhythm with my pulse) ? Throbbing/pulsing sensation in my head/neck/face (it feels like I can feel my pulse in my brain) ? Sensation when I'm laying down as if I am rocking on a boat or the bed is moving, feeling like my blood is rocking up and down my body ? Body rocking while sitting up(my body actually rocks back and forth involuntarily on occasion) ? Problems sleeping ? Exercise Intolerance, I used to exercise all the time, now sometimes I need to take deep breaths after walking up the stairs. My visual problems also get worse upon exercise; it looks like the floor is falling in everywhere I look. ? Cannot tolerate the heat/cold. (I get extreme pain in my ears and head after being out in the cold for a brief period of time.) "Episode" Symptoms: (after alcohol use, being in the heat, menstruation, possibly sugar or too many carbs?) There is no way that I can describe these episodes, it feels as if I am dying. It starts with hot flashes that move like a wave over my body (feels like a poison is flowing through my veins). My teeth start chattering, I get nauseas, tremors in my stomach, sometimes have g.i. issues and NEED to go to the bathroom, and muscle twitches. Sometimes it stops at this, although after alcohol use (which I no longer drink) it only gets worse. I feel like I can?t catch my breath, my heart POUNDS in my chest, I feel weak and on the verge of passing out. My extremities go numb, I get extremely nauseas, I feel like I am very out of it like in a dream-world, my ears will begin ringing, and I get severe jerking of my limbs/muscles twitches/spasms. These episodes last anywhere from 30 minutes to hours. Eventually, the heart rate will decrease but I am left feeling drained, exhausted, tired, and very "out of it." Only way to describe these episodes are that I feel like my body is shutting down and I am dying. I can't imagine feeling anyworse than when I am in the middle of an episode. I do anything I can to avoid these, and although I get them randomly from time to time, they have drastically decreased since I stopped drinking alcohol a year and a half ago. PLEASE HELP! If you know what I am talking about with any of my symptoms...please let me know. Most of them are so indescribable that I can't find anything about them online to relate to anyone else. I guess Google has a hard time reading my mind Thank you again! Michele

Hi Michele...I get this way too. I don't notice it too much while shopping, although I usually don't feel well from the walking around and carrying things, but I notice it when driving a lot. If I turn my head to check my blind spot before changing lanes for example, my head will feel "wobbly" as I like to describe it. It is a very odd sensation and that is the best way I can describe it, sort of like a lightheaded sensation by different.

Hi All... Thank for your replys! The test went surprisingly well, although I HATED that "hot flash" feeling you get when they inject the contrast into your arm during the test! Yuck, talk about feeling like you're burning up! Drinking all of the solution went well, I had to drink 45 oz. the hour before the test and chug another 12 when I arrived. It wasn't so bad because they gave me Crystal Light to camoflage the taste (nothing is worse than what they make you drink before a colonoscopy...yuck!) I did not have any allergic reactions which I am very happy about...and I think some good actually came out of it! Although I won't get the results for another 24 hours, I felt GREAT after my test yesterday evening! I'm not sure whether it is coincidence but I am convinced that drinking so much fluid did the trick. Anyway, the great feeling is wearing off this morning, and I've been pretty lightheaded since I got out of bed. I am going to try to chug fluids all day and keep the momentum up...wish me luck! Best, Michele

Hi All, I have been experiencing a lot of G.I. issues and have been having stomach cramping for the past week on and off, but every day. I have also been having a pressure/pain sensation in my bladder AFTER I go to the bathroom. It is a very weird sensation as I cannot usually feel my bladder except after going to the bathroom, it feels very strained. I do not have a UTI and I know a lot people have G.I. issues with POTS, but I think they'd like to rule out anything more serious. I got very sick this morning caused by/resulting in G.I. "issues," although this episode was accompanied by the usual teeth chattering, chills, hot flashes, racing heart, etc. I called my G.I. and he ordered a ct scan of my abdomen/pelvic area WITH CONTRAST, which I am having done tonight at 5. First question...URGENT- Before my test at 5, I have to drink some sort of "contrast solution" 2 hours before the test. I have read that people with POTS sometimes have issues with contast and I am VERY nervous about drinking this solution later on today. What kind of symptoms does having contrast give people with POTS so I know what to look you for? Second question, does anyone ever get sick before, during or right after having a bowel movement? I feel like I just ran a race during and afterwards. My heart will be pounding and I'll need to take deep breaths. Thanks in advance! Michele

Hi everyone, This is sort of related to dreaming but I have experienced some of these symptoms while awake as well. When I was in college I used to go tanning (really bad for me I know) and while I was in the bed it was like I would be complately awake but feel like I wasn't. You know that feeling when you catch yourself falling asleep and it startles you? Well this would happen to me a minute or 2 after closing my eyes, even though I was aware of everything around me. I noticed this happen a few times while laying in a chair in my backyard as well, also in the heat trying to get some sun, or at the beach. I live on Long Island and have gone to beaches and been in the heat my whole life, but this strange falling asleep feeling has only started once I began getting sick. I know I cannot describe it that well, but it feels like right before you go into a deep sleep when you catch yourself lightly sleeping and you startle yourself and wake up. Does anyone else have this related to heat or sunlight, even though they aren't actually sleeping? Michele

Hi Miriam, Thanks for the info...I did google "metabolic syndrome", but I will have to read a bit more about it. I definately get anxiety, especially when I can feel an attack coming on, just because I'm scared and feel like I don't know what is going to happen to my body. My attacks feel like my whole body is shutting down and I'm on the verge of death, so even though I know I've gotten them many (too many) times and they always pass, each one is still as nerve-racking as the first. I also get "anxiety" doing things because I'm always thinking about how I feel or how I might feel. I need to re-wire my brain to not pay attention to how sick I feel all the time but that is easier said then done. Just having this diagnosis has brought a great sense of relief to me, because although I may still feel sick, I know what is causing me to feel that way and what I can do to best help myself. I would talk to a therapist, it isn't something that I am against. Just difficult being I work 9-5:30 and have a 40 minute drive each way to work. Who wants to go talk to someone for an hour when they feel like they are ready for bed?! This forum has been my "therapist" and I am very happy I found it. As I have stated before it has been a saving grace so thank you. Everyone needs to vent, even people who aren't sick (we just have a better excuse ) Good sermon! Michele

Hi HoudiniCat, That is how I have such a long symptoms list...after I began realizing that this was something that wasn't going away, I began forgetting the numberous doctors visits, ER trips, episodes and what not. So I began writing down each weird symptom that I had, whether it was everyday, once in a while, or not so often. Sadly, I can say that most of those symptoms I experience every week if not everyday. I too got the "it's all in your head, but you look fine, you're just oversensitive" run-around. I am still searching for a doctor who knows a lot about POTS to help me in figuring out whether everything is related to POTS or whether it's something else as well. My episodes were guaranteed to happen within 24 hours after drinking, and I have related them to stress, heat, and my period. However, this is just what I have noticed. There were also days where I was in the heat for example and I didn't feel well but didn't have an episode, or times where I had an episode for what seemed to be like no reason at all. POTS is tricky I assume, because no matter what I do to try and avoid having an episode, I still don't feel good each and every day. I can't really say that I've felt "normal" and like my old self one time in the past 2 and half years. I agree with you that although symptoms of tachycardia, lightheadedness, etc. are worse upon standing or changing position, but I, like you, have many while sitting or lying down. I have noticed that even sitting at my desk for hours makes me not feel good, and lying down seems to be the position that I feel "best." I hope that you have a good weekend and I am beginning to love this site as well. The overwhelming amount of positive responses and willingness to help have done more for me than any doctor has done since October 2007...so thank you

Hi DelphicDragon, Glad to hear that someone out there can understand my chattery teeth reaction! When I start to not feel well, I am fine. But as soon as to begins to get worse, I get very nauseas, my teeth chatter, the chills, I need to go to the bathroom, I yawn a lot (which also causes like a "shiver" in my abdominal muscles, and this will last anywhere from 30 minutes to hours. The stabbing pain in my head is very intermittent and doesn't seem to have a set pattern which is hot. Very often it will only occur once or twice in a few minutes and then not happen again the rest of the day. I used to be on Topomax right when I first started getting sick because they thought I might have optic migraines...the medicine did not help though and was causing numbess and tingling so I went off of it. Thanks for the reply and I hear ya on the 9-5...it's rough! I just enjoy my free time and relaxing as much as I can and occasionally, when I don't feel good and I'm stuck at work, I go into my car for a few and put the seat back and lay down. Just a tip Michele