sarct

I have had this since childhood, but recently got diagnosed with it this year. I recently lost a lot of weight, and now it has become life changing. I pray I can find a way to get on with my life and that I can live a full life. My biggest worry is that I am just going to get worse and worse, and i worry if all this drain this condition puts on my body will take my life sonner than should happen. Like with every episode I get months or years taken off my life span.

What part of ASAP do these people not understand. I am getting worse by the day it seems. Not in just the episodes, but Trying to get through my day accomplishing the bare minimun is too much for me. My doctor put ASAP on my reports. I don't think I can make it till the end of summer. I wonder if I can call for an earlier appointment. I have been on pins and needles waiting and now I just feel like a deflated old balloon. I am so frustrated.

I live in the U.S and I would see a group of guys ride these every morning where I use to live. I always thought they looked so cool. Not sure where they got them. We just bought new bikes and I am biking like a mad woman. It's been great for me. I have been really bummed not being able to walk long distances and run anymore, so i am happy to be biking. No problems so far. When I feel my heart go funky i drop my resistance and slow down. It really is a great workout for me as I can control it much easier.

I do it myself. You know how a dancer can move their waist from side to side w/o moving their hips? Well I can do that with my stomach or my intestines. It helps to go the bathroom at times, or I just do it as kind of a tick thing. Within the last two months i have been having gastro issues, but have had a rock solid stomach up until then. They still aren't sure what exactly is going on but are pointing towards IBS. I have doen this since I was a child though, so I can't really say it is digestive related. I jump my stomach, and flex my lower back quite often. Sometimes to the point that I actually hurt my spine a little. I have great muscle tone. Even when I was heavier I was still toned. I am always flexing my muscles. I had a massage and the lady said I was the thightest, tense person she had ever worked on. My chiropractor always has to work on me to losen me up before he can adjust me. I keep everything constricted, even to my toes. I notice they are always curled, and often times I wake up in the middle of the night or the morning with sore elbows, because I have them so tight to my body and flexing them throuhout the night when I sleep. I even squeeze pulse my hands. I mean, I am not compulsive about it, and don't do all the things at the same times. sometimes I will flex someteing and the next it is something else. The times I do this the most is when I am relaxing on the couch, or really nervous about something. I can just never sit still, and when I am forced to I just wanna jump out of my skin, and move about. Sometimes I actually get ill is I have to sit still too long. IO will get a headache, and get clammy. Edited to ask, is your flutter voluntarily or just comes on? At times I will get a flutter in my stomach as well, and it comes and goes w/o any control on my part. I have also had an appendectomy, so I don't know.

I also fold my legs oddly. My mother in law is forever commenting on how I always have my legs tucked under me. I can never just sit with my legs on the floor. It's hard to sit with them simply crossed. I always bounce the crossed foot when I do it, or the planted foot in on the floor with the heal up bouncing rapidly. I always want my legs tucked in close to me. John is forever placing his hand on my legs to keep them from bouncing, or he will start shaking his foot incesantly to toy with me. He calls me a jack rabbit bouncin about. lol

Add me to that turning my head thing. If I turn my head to the back seat to talk to my son I get really sick. Other things as well. I also have my child or someone else look for things under beds or dressers, because if I bend over I will get really crappy feeling. Once again it was a thing that people considered me being lazy for. "you just don't want to bend over and lokk yourself cause you are lazy." It feels good being bale to put those stigmas to rest. A new one for happened this week and I plan on asking about it. I had eaten breakfast and hour later went swimming and after about 10 minutes of being in the pool I felt this heaviness on my chest. I began seeing bright spots that prevented me from seeing anything at all. I felt like hypoglycemic sick, and immediately had to coax a unhappy 4 year old out of the pool, because mommy felt sick. I had to drag myself to my hotel room, and really didn't think I was going to make it. i was shaking like crazy internally. I had a yogurt and a banana and I began feeling better. It was the bright spots that really freaked me out. It was a heated pool, so I am thinking it could have been that. Not sure what the deal was, or if it was the food I ate. i had a waffle with syrup. Not sure if that was the trigger and I was having a hypoglycemic attack or if this was something new. I swear, it's always something new lately. i didn't tell my husband about it so I didn't ruin our trip. Bad enough I had to spend 2 hours in the hotel room resting with a 4 year old who just wanted to go play and have fun. Made me feel terrible.

You just reminded me of my swaying. When I am standing for a period of time, like in line at a store or something, I rock from side to side. Like I do when I hold a baby. I don't always realize i am doing it till someone watching me gets a look in there eyes, or says something about it. lol

This may sound pretty weird, so bear with me. I am wondering if these quirks I have are a result of my condition. I spasm my tummy a lot. I make it jump and it's a reflexive impulse. like if I try not to do it I might go nuts. I also move it side to side. The actual inerds. I shift them side to side. Not my trunk, my inerds. Also I flex and release my muscles in my legs and buttocks in an almost spasm type movement. My hubby affectionately calls me his jitter bug, because I am always shaking my legs and spasm pulsing my thigh muscles and glutes. I shake my foot non-stop pretty much. I am just always shakin or moving something even if I hurt I still do it. I can really tire myslef out doing it. I do it w/o thought. I often don't realize I am doing it either. I was just wondering if anyone else does this as well. I had my cardiologist mention that squeezing my legs together may help when I am standing upright to keep from having an episode. I do this all the time anyway and wonder if all my jittering is a way to keep myself from having episodes.

I have it too. I am a teeth clencher. My dentist tells me I have over exercised muscles in my jaw, and wants me to wear a mouth guard. If I chew gum for a while, or munch crunchy things too much it starts hurting my jaw muscles.

It was in the high 70's the toehr day and i was miserable the whole day. Having episodes, and feeling nauseous. I am not looking forward to this summer. I hate the cold, and i hate the heat. I can never be happy it seems.

I had an episode yesterday that was pretty bad. It actually caused an all over brain throb. It felt like my brain was throbbing. The whole thing. After the episode passed I had this really strong metallic tatse (I get this a lot with episodes) and I couldn't move my mouth or tongue for about a minute. I had this tongue thing happen in the past, but not with the brain throb. I have had frontal throbbing in the head, but this all over brain throb really frightened me. I was just wondering if anyone else has had this feeling as it was really quite frightening. I am still waiting for my appointment with the specialist to be made. I am calling on Monday to see about how it is going with that. In the meantime I was taken off my zoloft as they believe that is what is causing my stomach upset, and my episodes are increasing with frequency and intensity. I feel a bit of a mess right now, and I have been looking through posts and the info on here and nothing has really described this episode I had yesterday.

I think once I got my diagnoses that it took a lot of pressure off of my husband. I can relate to having the guy desperately needing to control and feel bitter about what was wrong with me. I am a stay at home mother and I can't always get my duties done, and he has had to pick up so much of my slack. Often times he has used terms such as we cannot go on living like this, we need to get our lives started already, I don't like this limbo thing we are living.... Since my symptoms have worsened to the point they are now he has accepted that there really is something wrong with me, and that has freed him from the burden of trying to morivate me, and get me going, and trying to get a life going that he feels we should be living. Now he has been given the freedom to accept this life. The diagnoses has really changed his viewpoint and outlook for our future. I am not incompassitated in my life, but I am burdened and I feel like my life is a serious of stop and goes. One day is great the next is terrible. Everyday I am more accepting of my limitations. I have learned to stop fighting and trying to make my life something that it will never be. I am no longer living in denial. I have something wrong with me. It's been a bitter pill to swallow, but I do feel good now that I have learned to just accept this. It's been a real growing process.

I am going into the doctors on Friday to see where we go from here. I just felt so silly to go to the er only to be sent home hours later. I was glad it wasn;t somethign that needed surgery right then. I hope that it is somethign minor but I will keep you posted with what happens from here. I am still getting real gurgly in my stomach, loose stools, but not so much with the pain. It's so aggravating.

I had a cat scan, because the doctor was convinced that I had an internal hernia causing me horrible abdominal pain. You have no idea how embarrassed I was to have a test done only to, once again, have it show nothing wrong with me. It's so embarrassing. So I think I am getting a POTS tummy. Sigh!! It comes and goes.

hmmmm, I wonder, I don;t normally have pain in my neck. However if I have a alcoholic drink, or when I was given an intravenous pain killer I get this intense tightening tingly feeling in my neck. I have asked others if they get a sensation in their neck after having a drink and nobody has ever said they did. Just another weird thing with me. I wonder if it is related to this, though I do not get it unless given alcohol or once when given a pain med in an IV once.

This post is really making me laugh. I have heard quite a bit. I have been afflicted with the hypochondriact stigma. I did have one doctor tell me that I should do everything we tell people not to do with high blood pressure. Eat lots of salt, and fat. Then there is the old standby of being depressed. The chicken or egg thing. Am I depessed for the symptoms or did the symptoms cause the depression?

We really have been buying mostly organic in this home. Not just food, but home products as well. We shop for meat at an amish meat market, trader Joes for many things, and whole foods. I can't wait to hit the farmers markets soon, and i always try to buy local when available. Honestly, if I eat non organic foods, or processed foods I feel it big time. Especially a bag of chips. They are the worst for me. I also can't get to full either or else I get to feeling really potsy. My husband feels no health advantage for eating organic from eating no organic, but I sure do.

I had this when I was a child. I began being Potsy at around age 8. I am just wondering if this could have been my trigger. It is a blood vessel condition. I have been reading that many of people have developed POTS after an illness or injury. I plan on getting my childhood records and see if there was anything in my charts stating that I had these symptoms before I had that condition. I am certain i was aorund 8 when my POTS began, but it could have been earlier. I got HSP the summer I turned 6. Here is a link to a description of HSP http://www.printo.it/pediatric-rheumatolog...mation/UK/7.htm

I know my BP goes way low when I am sleeping. I have been hospitalized and nurses always wake me to get me moving around to increase my bp so they can get a reading. My mom took my bp once when I was laying down watching a movie (she is a home health care aid, and we were talking about BP's, and she wanted to see what mine was) 54/36. She took it three times and was freaking out on me. She had never known a BP to be so low. She wanted to call an ambulance. This was a few years ago. I am not sure what my heart rate is though, but many times I get waves of pots feeling wash over me when I am laying down and sleeping. I kinda feel like I have to ride them out like a wave. I have never done drugs before, and I told my sister once I bet the feelings I feel is similar to being high. That ride the wave feeling people talk about. I could be totally wrong. Vices were always a fear of mine. I don't even drink coffee. My mom and dad showed me with their smoking and coffee drinking habbits that things people get hooked on never do enjoyable things to your body.

I have not been on for a couple days as I have been going through tests and such. What an ordeal, my word. I hope thatyou too will come to realize I have quite the sense of humor as well. I think it's great that you can bring humor into this, because at the end of the day sometimes we can only laugh at what we are going through. I don't offend easily. it takes quite a bit. I will almost always laugh along with you. I am so sorry you have such a chronic pain. I really can't imagine having this pain unending. I truely am sorry, and I am grateful that if it is a hernia I will be able to get it treated. I am not sure what that entails, but I do feel fortunate that it isn't somehting worse. I have been afraid to address it for fear of learning that I am going to have to live with it and once again there is no cure. I have not tried a heating pad, but if this pops again I sure will think to use one next time. Thanks for the tip. Right now I am doing fine. The doctor said if it is a hernia it can go in and out and come and go, so just becuase the pain is gone doesn't mean it isn't a hernia still. I shjould find out everything by Tuesday. Thank you for your words. I really wish there was something to help you and others afflicted with chronic intestinal issues. They certainly are a misery. Who knows. Mine still could be.

What a wonderful experience and I just had the same one today. My doctor had heard of this condition, but was not really knowledgeable about it. I told him I am in the process of seeing a specialist in Ann Arbor and he wants me to have a copy of my chart sent to him so he can read up on it, and learn more about it. Took the doctors name and everything. Said he was going to give him a call and find out more about it. I was so happy today talking with this guy.

I am really sorry things are hard right now. Being a newbie I appreciate your effort and advice. It has really meant a lot to me. Take care, and I hope life gets easier for you.

I suffered 6 months with vertigo, because I lumped it into my episode symptoms. The doctors were at a loss. Turns out I just had wax in my ears. The docotrs saw the wax, but never got it out. I finally went to an ent and she cleaned it out real good. Told me to knock it off with the Q-tips (I get crazy with them) because I was packing the wax into my ear. It hurt like crazy when she washed the wax out. She didn't know why it hurt as it usually doesn't hurt people (her words). The next day I was totally fine. I am not saying this is the issue with your daughter (I am a Christina BTW), but I thought I would throw it out there for you to maybe check. They actually had me doing pt for inner ear conditioning and all I needed was my ears cleaned.

Well I have a CT scan set up for Tuesday. The doctor thinks I have an internal hernia, so we will see how this plays out. I may need surgery. YAY. I am not good with anesthesia. I am hoping it is not a hernia. I would love for it to be a poor diet issue, but I don't think it's that unless I have developed some allergy to something. We will see what Tuesday holds for me. UGH! It never ends. Hubby joked today and said if I was a car he would have to turn me in on a lemon law.

I am not a very anxiety driven person, but I get really frustrated and put out by all this. I get bitter about it, but on my tilt table test I did go panicky. It was an incredibly scary feeling. I tend to fight and ignore my symptoms and blow them off as somethign temporary. It's only been since they have prgressed to this level that I just couldn't ignore things any longer. So after being to many doctors over the years I figured I would try again uintil I got an answer, and it took months. I was recently put on zoloft and it has really helped many of my symptoms. I still have episodes, but I can usually function through them, and I am going on walks with my child and husband. I usually have a really good day followed by a bad day. Today is a bad day. Yesterday i was fine. Not a single episode. It's so weird how one day of activity in tolerable but completely wipes me out for the next day.