micheller

I have this problem too. The last 3 scopes I've had, the dr said he gave me enough sedation to put a 'normal' person in a coma. And I was still fighting. I was semiconscious and remember the procedure but have no memory of the ride home or a few hours after that. The same happened when I had teeth pulled. I don't have EDS.

I've had the nissen 3 times now, all within a years time, with no relief. My dr found a hernia after the 2nd surgery and said he fixed it during the 3rd. It was still seen on my last scope. Digestive issues are my main concern and problem right now, have been for 4 years. I've seen 4 or 5 gi's locally and all threw their hands up as to what was going on with me (diagnosed with GERD). I got a referral to a gi at Froedtert and he's the one that suspected pots and sent me for testing. I had never heard of pots before then and I was really disappointed to have something else wrong. I've tried all the GERD meds, diets, had the surgeries and I'm still suffering. The surgery was redone because the surgeon said my wrap was too loose so he went in and tightened it...twice. Well it's still loose! But he didn't want to make it tighter because that can cause issues also. I've had to have numerous biopsies done of my esophagus because the acid erosion is to the point it looks like cancer. It doesn't matter if I eat or not, what I eat, when I eat, I still get symptoms..more severe if I do eat or drink. I think this is the part that is so frustrating. It's very difficult for people to understand that I can't eat this or that or I can't eat and drive/ride because of the severe nausea. My vagus nerve is messed up. If I eat everything goes out of whack. My heart rate, bp, dizzy, faint, exhausted, bloated. As far as I've been told and read, there's nothing they can do to fix the vagus nerve. I'm sorry you're suffering. This part is really tough.

I'm the opposite also. I'm always cold but I sweat more when I'm cold. I had the sweat test and failed. I was barely sweating at all but when I'm cold I sweat all over. I can handle being out in the cold but not if it's over about 72. I wouldn't say I'm sensitive to temp changes but I can't tolerate going from cold to hot at all. I usually have troubles with showers because of it. I end up sitting down before I pass out. I go through phases, one minute I can be freezing, shivering cold and then next overheating. It's very uncomfortable. I dress in layers so I can adjust accordingly.

Can I get off this ride too??? The ups and downs are horrible. I feel for you bebe! If I venture out in public (doesn't happen often) I always look at people and think it must be nice to feel 'normal'. To come and go as they please. Not have to plan every little daily task days in advance. I've had this for 4 years and I try to remember what it felt like before and I can't. I just remember being able to have a meal or snack and feel great! Now I have to watch what I eat, wait 4 hours after any intake before I can go anywhere or I get sick, and by then I'm so worn out I just want to sleep. I've been to several GIs about my reflux/nausea and none had an answer. I've had 3 surgeries for reflux and no relief. My one GI is who diagnosed me with pots. He said my nausea is probably a nerve related problem. All of my reflux tests come back normal which is frustrating when I can feel it, taste it, smell it. What other answer is there besides nerves? One thing I had tested was my iron. My levels were less than 1. I ended up getting an infusion and it was amazing! Literally like a coffee iv. I had energy for a week and then none. I had my levels retested and they were normal. It was nice while it lasted I guess. My vitamin D was low too but not alarmingly low. Can you ask your dr to do some tests?

My digestive issues fluctuate also. If my stomach issues get worse, so does my pots and vise versa. I'll be as ok as I can get for a few days and my symptoms spiral out of control. I was diagnosed with gerd, had 3 surgeries for it and no relief. No meds help so my dr said it's most likely a nerve problem. I've had intestinal dysfunction since I was born. I have the opposite problem. My intestines barely function. The nausea and stomach pains are horrible. My gerd has been acting up like something fierce the last few days also. All of this rolled together makes me lose my appetite. I can go weeks without eating but then my pots symptoms go into overdrive. It's a vicious cycle. Eat and feel awful or don't eat and feel awful. Lose lose. I'm ready to ask for tpn.

Mine started when I was pregnant. After several doctors, I was diagnosed with GERD. Three failed surgeries later I was diagnosed with pots.

I felt off all day yesterday. I haven't eaten in a week and haven't drank much so I know I'm really dehydrated. I'm not sure if this plays a role in what's going on. I ate half a crescent roll last night and within minutes my heart started pounding so hard I could feel it in my legs. I figured I'd wait it out and see if it went away. 4 hours later I decided to take my bp. That was 113/89 and my heart rate was 127 which is really high for both. My average hr is around 65. I sat down and waited a few minutes, took it again. I don't remember what my bp was but hr was 81. I stood up and checked it again, hr was 129. Now normally my bp and hr drops when I stand. I'm starting to feel it start to pound again. This is abnormal for me but I'm wondering if it could be connected to eating and mast. I go through phases where I can eat very very small amounts of bland for a day and then it's days and days of no eating but the tachy is new. What can I do the next time it happens? I fired my neurologist so I'm searching for a new one.

Thanks! It's still really bad. I drank a little yesterday and felt horrible. I still can't eat. I'm not usually tachy but it's been really bad. My chest is tight, really weak, jittery. I will call my GI tomorrow morning.

I haven't been able to eat or drink much the last 3 days. I know I'm very dehydrated and my symptoms are getting pretty bad. I don't have a neurologist anymore so I'm wondering who I would go to for fluids. I have a gastro and a PCP as of now.

I'm pretty positive I have Mast cell. But Benadryl knocks me out cold. I'm always so groggy when I get up that I don't notice if it helped with any symptoms. I haven't tried the standard H1, H2 treatment. Is it OTC dosage or higher prescription dosage?

I always swell in my right leg. My feet are usually a purple in color but it doesn't get darker. I also have numbness in my right foot and goes to just above my ankle. My left leg it 'normal'. I asked my dr about this. She told me my swelling is from sleeping on my right side which is wrong because I don't always sleep on that side and it's fine in the morning. But if my foot is down, it will swell. She also said my numbness is from a damaged nerve during pregnancy. I don't believe her but meh. I think she wanted to give me a bs answer and move on.

Thank you for posting that link! I have almost every symptom on that list. I got really excited when I searched a few terms and found a name for the red spots I get, telangiectasia! I knew they were blood vessels but didn't know the name. If anyone would know the name to these other spots, that would be even better. They are about dime size, always on a joint in my fingers (top or bottom of hand), itch and hurt at the same time. But they don't hurt on the surface, they make my joint hurt. Usually last a few days to 2 weeks. They kind of look like a single hive. I've went to my pcp before pots diagnosis and she was clueless.

I always ask if I can bring some sedation home. The stuff is amazing but I've had it so many times I've woken up twice so they double the dosage. Double the nap!

Thanks! I do have a hematologist for severe anemia. I should call and see if he knows anything about this. It's definitely hard to find a dr that knows anything about these types of disorders. It would be great if I lived closer to one of the well known drs.

I'm pretty sure I have it. I fired my last neurologist so I'm not seeing anyone right now. Who would be the best specialist to have knowledge and test for mast?

They have different preps now. When I had mine (pre sickness) I had the gallon of golytley and a few other things. I've heard you can ask for Miralax which is tasteless but I'm sure you'd had to drink a lot of it. I've had phosphasoda which is nasty but it's a small bottle. I've had more sedation procedures than I can count in the last 3 years. No issues with heart rate or bp. I'd just tell them ahead of time.

You can definitely deny a med. I've taken Reglan for over a year. I developed a minor shoulder twitch. Shortly after I stopped taking it. It is a very good drug but the side effects are awful. I was switched to domperidone. I love it, no side effects. The only problem is it is VERY hard to get. It is not FDA approved in the states (not sure why) but if you have a compounding pharmacy near you, they should be able to make it. If it were me, I would deal with the original issue and not take the Reglan.

I've had people ask and I never know what to say. I just read this little story and it completely describes my day, and I'm sure many of yours. It's aimed towards Lupus but it has the same concept. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

My pots started when I was pregnant. I weighed 140. I only gained 6 lbs during my pregnancy. By my postpardum appt at 6 weeks, I weighed 103. I'm 5 6 so I was really sickly looking. I fluctuated between 103 and 109 for 3 years. A year ago I started gaining because I would force myself to regardless of the nausea. I'm at 122 now. Lower than what I should be but better than before.

My legs don't itch but I do get small red spots on the bottom of my feet and by my toe nails that itch like crazy. They last about a week and go away. I get those around the same time I get these red welts on my fingers. I get pain and restlessness in my legs too.

I lived on coffee before pots. I've found that Folger's Simply Smooth Decaf isn't as harsh on me than the regular.

I have definitely noticed this. Math was my favorite subject in school. Now I have to check my 8 year old son's homework with a calculator. I've noticed my comprehension for basically everything has decreased. I had to drop out of my college courses. Most of it was essays and I was having the hardest time. I knew what I wanted to say in my head but couldn't put it down on paper. Now, I'm always asking my husband questions that are common sense, he will answer me and I just say 'Yeah I knew that'. Lol. I feel like I've been googling more and more. It feels like I'm getting dumber as time goes on if that makes sense.

I'm the same as CMR. I have to eat at least toast with my coffee or I get really jittery. I read that the lighter the roast, the more caffeine it has so I've been buying the darker. It doesn't help me wake up but doesn't make me sleepy either.

For me it's a lose lose. If I don't eat (I've gone weeks without eating) I mainly get jittery. If I don't eat longer than a day my symptoms get worse, dizzy, fatigue, foggy. The other lose is if I do eat, no matter what, I get extreme nausea, my reflux kicks in, stomach cramps. I also have to time what I eat. I can't leave my house 2 hours after I eat anything because of the motion sickness. I don't like to eat in the mornings but I love my coffee so i'll have a cup. Which leads to eating a piece of toast to help with the caffeine jitters. But then I won't eat until dinner time and it's something super small.

I can relate, especially with my nausea and reflux. I've been turned away by two different drs. It really makes you want to give up. The people you expect to help you have no idea what to do. I went to my original gastro and told him he needs to contact my neuro and work together to figure this out. There's no way I can live much longer like this and I refuse to. Have you called one of your other drs and told them about the infection? Keep your head up!