micheller

I'm sorry you feel so sick. I've been that way for almost 4 years now. After dealing with the nausea, pain, and all the other symptoms daily for that long, I've given up hope that it will get better. The GI cocktail is great but doesn't last long. I believe it's maylox and lidocaine. Have you tried zofran for nausea? I have the dissolving tablets because they work faster. I've tried most of the antiemetics and zofran works the best even though it's still a hit and miss. I really feel for you. It's hard to deal with. It's my main symptom that I'd love to trade for another.

I get the faint feeling when I have a conversation also. Laughing feels like I ran a marathon. I also can't be doing anything else if I'm talking. I have to be sitting down. Which is why I prefer texting.

I have this problem too. Thankfully my husband doesn't care if I'm a little fury. My big issue is shaving in the winter. I get really bad pain when I get the goosebumps after I shave. I also get tiny red spots that look like broken blood vessels all over my legs.

I was told no talking unless I needed to report a symptom. The nurse said it can affect your heart rate and bp.

Interesting. I'll have to look that up. My bp decreases and heart rate increases when I change positions. I have asked about a reversal but my surgeon says I will probably have the same problem I had before. According to my mom (not a reliable source) I had anal/rectal strictures when I was born. I was supposed to get dilated every few years and she never took me back. I took stimulant laxatives for 22 years before my surgery so I'm sure that killed off some nerves.

I've had severe constipation since I was born. When I was pregnant with my 2nd, I didn't have a bm for over 6 months. My gyno scheduled a c-section for that reason. She referred me to a GI right away and 2 months after I had my colostomy. I'm not sure what was the cause of my pots but my symptoms started with I was pregnant with my 3rd. During my pregnancy, I had severe heartburn/reflux. My gyno said it would stop after I delivered but it didn't. I seen a different GI, finished all the tests that confirmed reflux. He suggested I have the nissen, where they wrap the top part of the stomach around the les to tighten it. I still had symptoms so he tightened it twice again. That GI referred me to one at Froedtert who suspected pots on the first visit. I do see a neurologist next month. I'm not sure if my past gi problems are related to pots or not.

I've had severe reflux since I was pregnant with my daughter 4 years ago. I've had reflux surgery (nissen) 3 times now with no improvement in symptoms. I eventually was referred to a GI at Froedtert who diagnosed me with pots. He did a scope and said my nissen wrap is herniated, twisted, and broken down. This type of surgery is 'supposed' to last for 10 years and mine doesn't last more than 6 months. I seen a new surgeon who said my wrap does need to be fixed but he thinks something regarding my pots is causing it to come undone. He wants me to see him after I see my new neurologist but that's not until next month. I'm not sure why he thinks pots would be contributing to this so I thought I'd ask your opinions.

I wasn't taking anything. I'm back to not eating or drinking anything because it doesn't sit right. I've had this before but couldn't figure out what it was from. I always have nausea but this is a different type of nausea.

Since having the flu, it has sent me into a nasty flare. I have the extreme dizziness, fatigue, tachy, nausea, gi issues. But the two symptoms that seem odd are my sense of taste is screwy. Everything tastes funny, like pennies? I also have swelling/numbness but only in my right leg. I have a sensation like I have knee socks on but I don't. It's hard to explain. Anyone else have the weird symptoms?

When I first got sick I was tested and treated. I've been tested many times since and it's always been negative. The treatment is horrible, at least it was for me. And I was really hoping once I finished treatment, my gi issues would stop. Of course they didn't.

Thanks everyone! I'm finally starting to feel a little better but my dizziness is way out of control. I just want to sleep. :/ I will ask my dr about getting the shot. I don't want this again. Ever!

That was the first time mito was brought up so I'm not sure if it's a possible diagnosis or what?

I asked my neurologist for a referral to a specialist that is closer and she said I need a mitochondrial specialist. That's the first time she's brought that up so I'm not sure if I have it or possibly have it.

I'm like that. I don't like making plans because I never know how I'll feel up to the minute. I have to time everything every day. Ex, my hubby usually does the grocery shopping (after I write a very detailed list) but if I'm feeling 'eh', I'll take advantage of that and go. If that makes sense.

I had no problem getting my records. I just called and requested. They were available for me to pick up 2 days later with no fee.

I think I'll get one now. This is the first time I've had since my pots started and wow. Talk about being knocked down to the floor (literally).

It's that time of year, so who gets the flu shot? I have the flu now, high fever of 104, body aches, sore throat, cough. I feel awful. I don't usually get the flu shot since it has side effects. Now I'm second guessing my decision.

It really makes you wonder!! Honestly I've given up trying to figure out my digestive problems. Every test was normal but my egd showed severe esophageal erosion. I can taste, feel, smell acid. That's not normal. I don't care what any test says. It was my 4th or 5th GI that suspected pots which is how I got my diagnosis. I've been turned away by the local GIs that I've seen, they have no clue what's going on. I asked my current GI if this is related to pots, how is it treated? He said with meds, clearly meds and surgery aren't helping. I have to come to terms that I will always be nauseous 24/7, don't leave the house because I feel like I'll vomit any second and motion makes it worse, that my intestines just don't function, that acid is burning away at my insides. Sorry, self pit party. Ha What tests have you had done?

I use anything clear. Broth, water, Gatorade, jello, clear soda, popsicles, coffee, apple juice. I've had the nissen surgery 3 times for reflux so I just followed that diet. After a few days if my stomach has calmed down I start soft bland foods. Sometimes my stomach doesn't like soft foods and I have to go back to liquids. I haven't found a constant trigger for my stomach symptoms. I can eat the same thing at the same time for a week and have different side effects each day. It's definitely frustrating and has made me want to throw my hands up when trying to figure it out.

I currently see a GI and a neuro in Milwaukee. I can't drive the hour and a half anymore so I asked my neuro for a referral to someone closer. She gave me 6 names of local neurologists and said I need a mitochondrial specialist. First time she's used that term. I'm hoping you guys can give me some kind of direction as to finding a good specialist. I'm not sure what questions to ask when looking for a new dr.

From your pic, you don't look overweight. When you starting gaining, does it level out eventually? One thing that I've found helps when my stomach isn't happy is to go on a clear liquid diet until it calms down. For me, liquids don't sit well, they make my reflux reek havoc but it does help. Unfortunately there isn't a quick fix.

Our stories are so similar. I'm not sure if I've had pots all my life but my symptoms started when I was pregnant with my daughter 4 years ago and haven't let up since. One of the things I had tested while going through the slew of reflux testing was my thyroid. Hypothyroidism can cause weight gain, constipation, fatigue, and a whole bunch of other symptoms. Oddly enough I gain weight when I don't eat but after about a week of not eating, my weight plummets. When I start eating again, slowly, I start gaining. I've been having a bad week. Everything I eat seems to sit like a rock. Yesterday I had 2 bites of a grilled cheese and was 'full', had pains the rest of the day. Other days I can eat all day. It's bizarre.

Matt, I haven't had much testing regarding my intestines. After my colostomy surgery I just wrote it off and one thing fixed, on to the other. I do know that when I was born I was diagnosed with rectal strictures and I was to get dialated every few years. My mother never took me back in, just had me load up on laxatives, which I think led to the stomach problems I have now. I have asked if a reversal would be an option for me and my surgeon said he could but I'd have the same problem I was having pre-op. So I just left it as is. My new GI has suspected that my reflux is related to slow intestines. Everything just keeps backing up until it has nowhere to go but up. How do they perform those types of tests?

I had the barium test and it showed that my stomach digested normally, weird because I can taste what I ate hours later. I've had intestinal issues since birth. I had to take stimulant laxatives for 22 years before I got a colostomy 6 years ago. But even when I didn't have a bm for months, I never felt nauseous. My intestines have no nerves and is basically dead. When I did the barium tests, it didn't come out until almost 3 weeks later (tmi). I swear it's like drinking cement. I'm surprised they didn't suggest a diet or meds. From my experience and reading a ton of forums, small meals, liquid or soft foods are easy to digest. For me that's a difficult diet. I can't have dairy which leaves out yogurt, pudding, milk, etc. No starches so noodles, mashed potatoes, rice. Fruits and veggies are out of the question. That's leaves a diet of.....nothing? It's horribly frustrating. I've called my GI mad and in tears so many times. He thinks it's a nerve problem. I have no idea how something like that is treated. Sorry I can't give more direction.

I've been that way for 4 years. I basically live on a handful of cheerios a day or I feel horrible. That's actually how I got diagnosed with pots. Have you had any other tests done? If you've been diagnosed with gastroparesis, maybe you can ask for a motility med. I've tried Reglan but had the side effects so I switched to Domperidone which helps sometimes. But now I can't find a pharmacy to order it from. This is my main and worse symptom.