micheller

Congrats!! My pots started when I was pregnant with my 3rd. It was horrible. I had to quit my job and was couch bound for 7 months. After I delivered I was able to do a few things but I could not stand for longer than 5 minutes without turning ghost white and almost passing out. 3 years later it's starting to get a little bit better. My c-section was awful. My bp dropped really fast as soon as my spinal kicked in.

After my last appt with my neuro she wanted to have some blood tests done. They took 8 vials. I'm not exactly sure what she was testing for. I got a call from her office today to make an appt to discuss the results. Keep in mind its an hour and a half drive one way. Her nurse wouldn't tell me anything over the phone which makes me worry. This was my first appt with her. What kind of things do they test for right away that would warrant a long drive for results?

Songcanary, that sounds fabulous! If I could do something like that, I would.

Naomi, that's what is happening. My mom is taking over and demanding we have a traditional wedding with the whole 9 yards. But she also thinks my disorder is my imagination, my specialists are crazy, etc. She's not understanding when I say I don't want anything huge because I do want to enjoy it and not be drained for days after. It's gotten to the point where it's just overwhelming thinking about it. I've considering just going to Hawaii but I don't think I could tolerate the plane and the heat. I've also been thinking about doing the courthouse and a small get together at a park so I can still have pictures. We've been together almost 14 years, 3 kids so it doesn't have to be extravagant. I'm not on any meds yet since I'm still being tested. I have Zofran for nausea but it doesn't really do anything. I'm nauseous whether I eat or not but worse when I eat.

I'm getting married next year and I'm trying to prepare myself now. I get really bad anxiety with leaving the house period so I think the combo of being in front of people, standing, nerves, and everything else are going to be really bad. Our wedding will just be family so it's small but I'm already considering just going to the courthouse to get it over with. I know I want wedding pics and all that jazz. I also know I won't be able to dance, eat or drink (nausea prevents that), and really be able to enjoy myself without a huge flare up. I'm so torn about what to do. Any advice would be greatly appreciated.

Checked out your profile since I'm in WI too, we are neighbors. Ha! I'm in Menasha. I can't handle the cold either. I have the heat at 75 and I still have fleece pants, sweatshirt, and blanket. I dread going outside when it's cold. But my weird thing is I feel worse if my feet are warm. It's 35 out and I have flip flops on.

Thanks for the replies! This is so interesting but yet frustrating at the same time. I will see what my neurologist says and if there's anything I can do about it. TCP, I've been looking for something to do from home but I haven't found anything legit or that isn't a pyramid scheme. If you have any suggestions, I would love to hear them!

I'm not sure if this is anxiety or pots but I'll try to explain what happens. I've been trying to work for the last 3 years. I've been accepting easier office jobs. My last job was in the office of a roofing company. I didn't have anything to do until the contractors would bring in job contracts which was rare since it was winter. So I basically got paid to sit and do nothing. While I was in the office, I would get bad symptoms. I felt drained, tired, dizzy, tachy, nausea, cold, shaky for the whole time I was there. It would start on my drive to work. I wouldn't feel anxious, nervous, stressed, anything that would bring on my anxiety. This happens no matter what kind of job I do but it's worse if I'm standing. When I get home I feel better. I could do the same type of things at home that I did at work and not feel as symptomatic at home. It's frustrating because I want to work but after 2 weeks of working my body just can't do it anymore.

I have the same issues, actually it's how I was diagnosed with pots. My pots started with reflux, seen many specialists, none of the meds helped, had 3 nissens before I seen a GI at a teaching hospital which diagnosed me on the first visit. When I flare, my reflux is out of control, food is repulsive, severe nausea, stomach cramps, etc. I haven't found anything that really helps the nausea. I've taken phenegran, zofran, reglan, and all of the OTC meds. I've tried all of the home remedies, nothing gives me relief. My GI said my nausea is most likely a neurological thing, I had yet to ask my neurologist about it. Sorry I'm not much help!

I haven't had a sleep study and don't take anything to sleep. I'm seeing my neurologist next month so I will definitely write this down to ask. Puppylove, I've also stayed awake for days because I couldn't sleep. I usually stay up until I can't anymore which usually ends up to be about 4am and then have to get up at 6:30. It's so draining. I've taken Ambien before my pots was severe and I could sleep for days and wake up so groggy. Tylenol pm does the same thing.

I've been having this problem with falling asleep. I'll just start to drift off when I get hit with horrible nausea and my heart rate increases rapidly. It happened 4 or 5 times last night before I completely fell asleep but every time I get the nausea, it startles me awake. This happens almost every night. I haven't found a trigger. I usually lay in bed for about an hour reading before falling asleep so I don't think it has to do with my position. It's annoying and frustrating. Anyone else have this happen and know what causes it?

I had this test at Froedtert in Milwaukee, WI.

I'm having it done at the end of the month. She said to test my larger nerves and large muscles. I've had the shock part done but not the needles.

Has anyone had an EMG? How was the procedure?

Good to know! This is the first time I'm taking any medication for pots so not sure what to expect.

She did say to monitor my bp. How high is too high?

I seen my GI and neurologist today. They both think my nausea is related to pots. I was told to stay out of heat because my sweat test showed I don't sweat over 80% of my body. I am to start Midodrine 5 mg twice a day for a week to see how it helps. What are the side effects I should be watching for? I also got meds for migraines but my insurance has to approve it. I'm scheduled for an EMG, anyone have that?

I've noticed that my right leg always swells up more than my left no matter how I'm sitting or laying. My right leg feels like it's almost numb but hurts. There's a remarkable difference in size just by looking. Is it 'normal' for one to swell this much more than the other?

No stretch marks or belly pooch with 3 kids and 2 c-sections.

I developed pots with my 3rd and smallest baby. She was 3 weeks early, 5lb 9oz and 18 inches. Pots was the worst when I was pregnant.

I have 3 kids ages 2, 5, and 7. I so hear ya!! It's been negative temps so I can't have the older two play outside, talk about cabin fever! Can someone watch her for a bit so you can rest? If they get too bad I just walk away and deal with the mess tomorrow. Let her paint in the tub with water colors? Give her a bowl or bucket of shallow water to play in? Water is easier to clean up than crayon

My feet definitely change color if I'm standing too long. When I had my TTT they turned a lovely shade of dark purple and were cold. I have the 'stuffy' feeling too, if it gets bad enough my legs from below the knee ache and hurt. Normally I can see the tendons in my feet but when they pool, they disappear and I have no ankles. I have to put my feet way up, lay on the couch flat with my feet on pillows on the arm of the couch but as soon as I get up it comes back.

I get them all the time too, hot or cold. The reason why I hate shaving my legs in the winter, I get goosebumps and they hurt! Feels like little needles pricking me. I'm not on meds for pots so it's not from that.

My dr has been pushing salt and salt tablets which I have been doing. From my knees down is so swollen my legs and feet are halfway numb and hurt! I've been wearing my compression stockings to try to reduce it, put my feet up but it's not helping. Can too much salt be bad??? I can't imagine all this swelling is good. My middle is swollen too but not nearly as bad as my legs. Would taking a diuretic be ok? I sure hope I have my ankles back tomorrow!

I have been tested for celiacs, parasites, delayed stomach emptying...everything was normal or neg. When it's a 'bad' day or week, I can't tolerate anything or I feel horribly sick. It's like my body is rejecting everything I put in it. I do have severe reflux, even after 3 surgeries for it but now my wrap is a complete mess. I don't have much reflux unless I eat or drink. I know my intestines are very slow, I had to take stimulant laxatives for 22 years before I had a surgery for that too. I'm not sure if that could be contributing to it but I haven't found a pattern or trigger. It's always bad for 2-3 weeks so I'll lose about 15 pounds and then ok for 4-5 weeks where I gain it all back. The time frame is never longer for good or bad. I see my GI and neurologist at the end of Feb so I will definitely be asking about this. Today started a good week so I want to eat, I'm hungry but when I do it seems like my reflux gets out of control which makes for problems in itself, especially at night. I drink a lot when I feel ok but can't drink too much or it puddles in the back of my throat. This is all so frustrating.