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About micheller

  • Birthday 08/02/1983

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  1. My neurologist said not to wear knee high because they can compress the nerves by your knees but I have small fiber neuropathy. I haven't tried thigh high but I have waist high. It's a workout getting them on and are on the thicker side, I could wear them as leggings but they do help me. I haven't figured out what I'm going to do in the summer. I'm always cold but can't tolerate heat.
  2. I've had the bravo twice. One was in normal range even though I was having symptoms. I'm not sure what my scores were exactly on the others but they were pretty high. That's weird they had you on meds while doing it. I had to stop them 7 days before getting the test. It was the longest 7 days. Lol. Honestly, I haven't noticed a huge difference if I eat something acidic or not. I've eaten pizza and spaghetti with the same results as grilled chicken. I've started combining my H2 blocker with my PPI and it seems to have helped a smidge. Have you tried carafate? It's soothing but doesn't last long. I've also tried Questran because my GI said I had bile in my stomach during one of my EGDs. I would love to have an answer and a quick fix.
  3. I get food stuck at the wrap if it's not chewed enough. I have liquid that will sometimes puddle there or it takes a while to go down. If I drink something really cold I can trace with my finger how slow it goes down. I can't have anything water thin or it comes right back up. I honestly did it out of desperation. My pots and gerd started at the same time, while I was pregnant with my third. My gyno kept telling me it's pregnancy heartburn and it would go away. The pots symptoms I was experiencing before pots diagnosis I thought were from lack of vitamins and food. I literally couldn't eat or drink more than a sip to take my H2 or PPI and maybe half a handful of cheerios or a few saltines for just over 2 years. Before I had my first nissen, my GI was starting to pull at straws since he was clueless and suggested I get a tonsilectomy. I did that when I was 27. I'm not sure why he thought that would help. He said they were inflamed. Well obviously considering they were washed in acid. Duh! Out of the 7 total surgeries I've had, that was by far the worst recovery wise. I couldn't stomach the pain meds so I had to go without and add in reflux, it was a nightmare. I ended up losing a ton of weight from not being able to eat. I literally lived in my bathroom for those 2 years. I had a pillow, blanket, books, laptop table, laptop. My nausea was horrible. I couldn't move without feeling like I was going to get sick so that was my 'safe haven'. My GI seemed concerned but not enough to do anything. I was eventually to the point where I would have done anything to make it stop and that's when my GI referred me to the surgeon. It was pretty funny actually, my GI's nurse in Milwaukee called me and said he suspected pots and was going to set me up with a neurologist there. First thing I said was 'I don't smoke pot!'. Haha!!! She had to explain it to me. Then I said 'I came there for reflux, not for another diagnosis.' :/ As far as testing, what have you had? I've had them all multiple times. I've had the bravo, manometry, swallowing study, more EGDs than I can count, gallbladder ultrasounds, abdominal scans, blood work, allergy tests, it goes on. They also said it was H. pylori so I took antibiotics for that. I've had a few tests come back normal like the bravo was once in normal range. But what I found weird was every time I went under sedation (which I'm now immune to) the next day or 2 I didn't have very much reflux. I'm not sure if it paralyzes the nerves or...something else temporarily. I was so relieved when the EGDs I had after my nissens were still showing acid burn because my surgeon told me it was next to impossible, that he's never had a failed nissen. Ego much? I was lucky to be his first. I've learned to just kind of live with it. It's become the new norm. But in the beginning it was very hard for me to accept the whole mess of gerd and pots. It flipped my life upside down, as it does many. All I could think about was everything it's taken from me. I'm pretty much a home body, I get bad motion sickness so I have to plan when I have to leave and not eat/drink for 2-3 hours before that or pots/gerd/nausea kicks into full gear. I think the biggest thing is finding your triggers. If you haven't, keep a food journal for a month or 2. I've cut out all dairy except for cheese, try not to have red meats since they are harder to digest, I try to steam veggies as much as possible instead of raw. I haven't tried juicing because the texture would make me gag. I'll stop here since I wrote a novel but feel free to ask any questions.
  4. I've had it done 3 times within a 2 year span. This was before my pots diagnosis. The recovery was as expected. Tender for a few weeks, lived on liquids for a week (anything I can see through for a 2 days then I could add any liquids), then anything pudding consistency for another week (thinned mashed potatoes, yogurt, ice cream, overcooked oatmeal), then as tolerated after that. No red meats, anything crunchy, carbonated (couldn't burp) for 2-3 months. My first nissen worked well for about 5 months. It seemed once the swelling subsided, all my symptoms came back. I went back in at the 6 month mark and had it tightened. The same thing happened so had it tightened again. Once again all my symptoms came back within a few months. My surgeon and GI pretty much gave up and sent me to a GI in Milwaukee that suspected pots on the first visit. I had a hernia repair with the first one and it didn't make any difference with my symptoms. I've tried all the meds and they seem to work for a few months before they are ineffective. My GI did a few esophageal biopsies because the acid burn was so bad he thought I had cancer. I couldn't eat, drink, recline, sleep and my drs couldn't figure out what was going on. I was given H2 blocker, vicodin, and carafate to see if I could get some of it to heal. In my case, there's nothing surgery can fix. It's a nerve issue according to my GI and neurologist. They said if I was 'normal', no pots or nerve issues, it most likely would have been a success. But because pots messes with digestive tract it was a bad decision to poke the bear and cause more issues that weren't there previously. I do have some complications from the nissens like food getting stuck at the wrap and if it can't go down, it comes back up. I have to chew everything to complete mush. I have trouble swallowing liquids as they seem to puddle there or take a while to go down so can't drink/eat while laying down or reclined. I also have IBS and gastroparesis so taking domperidone really helps with all the GI symptoms. So for me, the surgeries were completely pointless. I did see another surgeon to fix the damage the first 3 caused and he brought up a less invasive option called TIF. Instead of using sutures and making abdominal incisions (I had 6 and they nicked a few ribs), they use H clamps and they go down the esophagus just like an EGD. The post diet requirements are about the same but there's no outside incisions. My GI in Milwaukee (I have a local one also) wanted me to redo the manometry before he would consider doing any repairs and I can't tolerate the way they do the test at his location. Given my experience, be sure to discuss all the options. There is also the LINX which is a band of magnets they put around the sphincter instead of sutures or clamps. It's designed to be more like the natural state of our esophagus because it can stretch and contract during and after swallowing. There's no diet restrictions with the LINX. Many people have issues with the nissen like trouble swallowing, food getting stuck, can't burp which causes pain and bloating but there's also people that it relieves symptoms. Most of them still have to continue some kind of reflux med after the nissen. I found an amazing gerd forum that I have frequented over the 5 years I've had it. I'm not sure if we can post other forums on here but feel free to pm if you want to read it over. I don't want to scare you out of it but just make you aware of the after affects that can happen. The surgeon that did mine hasn't had one fail in over 27 years but make sure your surgeon has a very high success rate. Ask a ton of questions about his experiences with performing the surgery. Do as much research as you can. Good luck!!
  5. I have low iron. The first test I had, my levels were nonexistent. I ended up getting an infusion that lasted about 6 months. I get tested every 3 months.
  6. You can get lifts that go under the frame. I got mine from Walmart. I use them when my reflux is really bad but it hurts my back because I slide down the bed.
  7. My pots started when I got pregnant. I felt awful, bedridden, unable to eat or drink, just horrible. It took about 3 1/2 years before I seen any kind of improvement. I'm definitely not back to pre pots but I remember begged my gyno to take my daughter early because I felt so bad.
  8. At least I'm not alone! I thought it was some fluke but I've been testing it the last few nights. I also feel better sitting but if I sit too long I get pooling in my legs. I've noticed that if I sit straight up I get symptoms but not if I'm kind of slouched.
  9. I've noticed that when I lay down I can't lay on my sides. When I do, my bp and hr shoot up and my heart starts pounding. Anyone else? Why is this?
  10. I was diagnosed with SFN also. I have no feeling from mid calf down and pain from hips down. My neurologist suggested compression stockings but not the knee high ones because they compress nerves. She suggested thigh or waist high. They do help with some of the pain and swelling but not the numbness. She didn't say anything about meds for it.
  11. My nausea helped get my diagnosis. It started with heartburn and nausea while I was pregnant. My gyno said it would stop after I delivered. Wrong. I seen a GI for 2 years, had many many tests, tried all the meds, 3 surgeries, no relief. He pretty much gave up and sent me to a GI at Froedtert. My first appt he was asking weird questions not related to reflux. He said he suspected pots. My first reaction, since I never heard of pots, was I don't smoke pot! LOL! He sent me for a TTT which was positive. I seen a neurologist there, did some tests, found out I have neuropathy. After trying most of the anti nausea meds with no relief, it's been chalked up to be a nerve issue. My nausea comes in flares. It gets really bad and I won't eat/drink for weeks, yes weeks, I lose a bunch of weight. Other times I eat nonstop for weeks and gain my weight back but my nausea is tolerable unless I leave the house. I don't have a trigger other than food itself. The med that helped the most was domperidone which is for gastroparesis. I was getting it from a local compound pharmacy but they closed. I have to order it online now. I'm 5' 6" and my average weight before I got sick was 135-140. The lightest I've been was 103 and my drs didn't seem concerned, just said I need to gain which was obvious but how do you do that when food is your enemy? On my good weeks, the most I've weighed is 127. Still not my norm but better. I can't tolerate any foods at all on my bad days but I was told anything easily digested. Smoothies are a great idea. Can you have someone help prep them? Like Libby said, freezing portions makes things easier.
  12. Where are you going? I've been to Froedtert. I like them but can't afford the drive. Why would her school be fighting IEP? My son has ADHD and he got it no problem. I think being too sick to attend school is more a reason to get it.
  13. I've heard of bad side effects. Sleep driving, eating, walking, etc. I didn't have this issue but hearing the side effects freaked me out.
  14. I slept the whole time I was pregnant with my daughter. I could barely eat or drink anything, gained 6 lbs and she weighed 5lb 9oz. My pots started when I got pregnant with her so no one knew what was going on. She was my 3rd pregnancy. I had to quit working and basically became part of the couch. I couldn't get up unless it was to go to the bathroom or feed my other 2 little ones. But I survived and so did she. With my 2nd, I was given tylenol with codeine for pain and ambien to sleep. My babies don't grow out, they grow up and down so I had bruised ribs, horrible pain, and no sleep. You can ask your ob for something for pain that is safe. The codeine helped me sleep also but I wouldn't recommend ambien. I'm in Wisconsin too. Have you seen anyone at Froedtert? I seen 2 neurologists that were great but I wasn't pregnant so not sure how knowledgeable they would be during pregnancy. It's worth a shot!
  15. I have the same thing. :/ Maybe they will have a reverse effect and help a little, I hope! I always look like I'm 8 months pregnant after I eat so I'm crossing fingers these cut the pooling down.
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