micheller

I feel the same way Peregrine! I used to have everything in my bathroom. Laptop, radio, butt pillow, blanket, books. I would sit in there for 8-14 hours a day. I don't have my own bathroom now so can't hog it with 7 other people in the house so try to suck it up. Now I have a trash can next to my bed just in case. I tried explaining to my husband it's a comfort thing. I don't think I can physically vomit, I've had 3 nissen surgeries, but just the fact that I'm in the bathroom helps.

I have this problem too. Last night I was so nauseous I could taste vomit but of course nothing happened. I have severe gerd also so can't drink anything after dinner or I suffer worse. Most nights I stay up until I can't anymore, usually ends up to be about 4am, and then I have to get up at 7 to get the kids ready for school. THEN my symptoms are worse from lack of sleep. It's quite irritating because my nausea is somewhat tolerable when I wake up. There's something about nights, my nausea kicks into full gear around 4-5pm. It's a lose lose. I see my neuro tomorrow and this will be the first thing I bring up. I can let you know what she suggests. I can't take sleep aids, not even tylenol pm or I'm so groggy the next day. I've tried OTC nausea meds which are basically just sugar, ginger ale, ginger candy, zofran, phenegran, reglan. Nothing helps. Oddly enough, the candy smarties can help but that's a hit and miss type deal.

For me, the cold is ok. I can't function or think when I'm hot. But I think it's the changes from going inside where it's warm to outside where it's cold that gets me. It's like a shock to my system. When it's gloomy, rainy, first starts to change temps, I have horrible pain all over, migraines, and my stomach flares. It's going to be a rough winter. We live with my husband's parents and his dad has a wood burning stove in the living room. That keeps the house around 80 degrees and it's just too warm for me.

Yes I have twitching also. But it's more like a jerking motion. My shoulder will jerk really bad or my legs will. I've noticed a weird pattern. Some days from my hips down hurt, throbbing burning pain. Other days my nausea is just out of control mostly at night. But it's never both at the same time. I have Avitan but I haven't been taking it. Maybe I'll try it again.

I get this also. It's usually right as I'm falling asleep. I start to drift off and I get startled awake by awful nausea, sweats, shaking, and my heart pounding. It calms down after about a half hour but I'm not sure what's causing it or how to avoid it.

I just said 'I'm alive' to someone who is close. Otherwise I'm fine. My reply to the nurse or doctor is always' I've been better'.

Oh! And the dj had my sister spin me before the bouquet toss. I told her a max of 2 spins or I would fall over for sure. She was nice about it. Lol

Thank you!!! The only big symptom I had that day was fatigue. After spending 4 hours getting hair and make up done, I was ready for a nap and it didn't even start yet. Lol I'm not sure how I made it through the whole day but by the end I was limping pretty bad. My joints from hips down hurt including my toes! I got up at 6am that morning and didn't go to bed until 2am so yeah, I think it was the adrenaline. Now I need a few weeks to recover.

I had a really good day! Very minimal symptoms but I didn't eat the whole day. The day after was a different story! I felt horrible. Every symptom I have was in full force, every body part hurt. Yesterday my intestines were spasming all day. Today my stomach feels yucky. But anyway, here's the link....enjoy! They are just a sneak peek. http://photobucket.com/km9292012 michellekyle12

Soskis I get all of those symptoms also. My feet will turn purple if I'm upright too long. I was cooking for a while yesterday and my feet were bright red and hot. That was a new thing. Usually they turn purple and are ice cold. My feet from ankles down are always numb. My neuro was poking me with a needle in various places and that's the only place I couldn't feel it. During these episodes it's like my hands refuse to work. I have to really concentrate on what Im trying to do. I've dropped many many things lately. What are some other symptoms of raynauds? I have not been tested for ms. I think I've had some of the basic autonomic testing. Nothing too invasive yet. The only med I'm taking is omeprazole and zofran currently. I will have to ask my dr about magnesium. I have had blood tests from my neuro but no clue what they were for. I know my iron was extremely low so I had an infusion. Now it's in normal range. As far as cortisol levels and potassium, I don't know.

Since I started pots symptoms, I get weird pains. Mainly in my arms and legs but worse in my hands. It's like when you hit your funny bone, hurts but tingly, weakness. I've had an EMG that I guess was normal. My feet are numb from ankle down. When they did the nerve test, they put a pad on my foot, 2 on my legs, and 1 on my arm. I couldn't feel the one on my foot and the tech wrote it down. The other part of the test was the same, couldn't feel the needle in my foot. My question is what could be causing these weird sensations if my EMG was normal?

Leydengs, I can totally relate to that! I've had chronic C since I was born, spent my first 2 years at Children's Hospital. They said I had rectal strictures but nothing helped. I was taking stimulant laxatives for 22 years. There were weeks or months that I wouldn't have a bm. It was horrible. When I got pregnant with my 2nd son, I didn't go at all. I had a c-section because of it. My gyno said my colon was the size of a football and sent me to see a surgeon asap. I had a colostomy 2 months after I delivered. It worked wonders, was like night and day, until I got pregnant with my 3rd and my pots symptoms started. I've had 2 colonoscopies...before colostomy. Each time they had to help clean me out. I had the gallon of go-litely the first time, no luck. The second time I had the gallon, 2 bottles of mag citrate, a bottle of phosphasoda, dulcolax, and a bottle of something else. No luck either. They had me try miralax but that made me bloated and didn't work. I'm sure that my years of taking the laxatives have taken it's toll and probably killed off the nerves or something. But even now, if I'm lucky, I will have a small bm while I have my period. Even though I weigh 120, I feel like I weigh 220. My C has definitely gotten worse since pots. My whole digestive system is a mess.

I'm like Steph. Any amount of food or liquid makes my nausea so much worse. If I do drink anything, even a little sip, it feels like it just swishes around in my stomach. For some reason water makes my reflux awful. I've found I can tolerate cherry pepsi well in very small amounts.

Thanks! I can't handle swimming. For some reason the water feels like it crushes my chest and I have a hard time breathing.

I can feel it coming...everything hurts, blah feeling, tired, migraines, digestive issues, etc. I'm getting married this coming Saturday and I need to put this flare off for a few more days. Any suggestions?

I see Dr. Peltier at Froedtert. She's wonderful, understanding, and thorough. She's only at Froedtert part time so I see both her and her assistant.

I've read a lot about EDS but does anyone have the opposite issue? When I get up in the morning all of my joints are stiff and hurt. It takes a few hours after moving around before it calms down but it takes me a while to get out of bed because of the pain. I also get pain in my hands often. I tried crocheting again yesterday and my hands hurt after a few minutes. I can't write anything long hand longer than writing a check. If I move around too much my legs and hips hurt.

I also have a hiatal hernia. I've had 3 nissens for my reflux which didn't help. My hiatal hernia was discovered after my second nissen. It was repaired during the third but it's back, confirmed by egd. My reflux actually lead me to my pots diagnosis.

Does anyone have dumping syndrome? I've had 3 stomach surgeries and I think this is a side effect of the surgeries or pots. If so, what do you do to ease the symptoms?

Can you ask to be tested again? I failed this test, none of the powder turned purple. But what's weird is I do sweat, a lot, sometimes even when I'm cold.

I have this too! Even bringing laundry up or down the stairs does it for me. I'm getting married in Sept so I want to tone up. We have the total gym which uses your body weight instead of other weights. I can't do anything cardio or I get really bad. I've been doing the gym for 2 days despite my nausea, which does get worse with exercise, but I've found that I have to do it before I eat anything at all and it's not as bad.

I got one last summer right before I was diagnosed. It's on my foot. After he finished that one, I had him touch up the one on my shoulder. When he was doing the second one, my foot was throbbing, on fire, and bleeding pretty bad. It hurt like something fierce afterwards. I wonder if that's from blood pooling but the one on my shoulder didn't hurt that bad. I didn't have the symptoms you have.

The 2-3 weeks I've been 'ok'. I still had dizziness and fatigue but nothing too bad. I'd go to bed at 9 and read until I fell asleep at 10. As of yesterday, I've been having symptoms again. Worse dizziness, cold feet, head feels hot, motion sickness, weak, really fatigued, pain, and the horrible nausea. The most annoying thing was I was laying in bed, dead tired, and the second I would start to fall asleep I'd get hit with a huge wave of nausea and dizziness startling me awake. This happened every few minutes for at least an hour before I finally fell asleep. I felt ok before I went to bed. Anyone else with this nausea/sleep issue? Anything that helps or an answer as to what causes it? I'm not sure if this is the beginning of flare, because I started my period yesterday (sorry TMI), or what.

I took prozac for about 2 months. I don't remember it doing anything for my bp because it was before my diagnosis but it sent me into a deep depression. I went a little 'crazy' literally.

I don't feel like I have to go when it happens. I've been suspecting I have mcad but haven't officially been tested. I was thinking bladder infection but I don't have any pain. I have bowel issues too which have been half treated (colostomy). I'm getting married in September and if I have to wear a pad for this I won't be happy. Lol