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Katybug

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About Katybug

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  • Birthday 11/29/1974

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  1. Some people with POTS experience blood pooling in their abdomen instead of or along with pooling in their legs. That's why some POTS patients wear abdominal binders or compression stockings that are full tights.
  2. My GI issues are at least 90% related to my mcas. I spent nights on the floor of my bathroom because of it. Everyone was convinced it was gluten. I went staunchly gluten free for 4 months with no improvement. I had just started working with an immunologist at the end of that. He did food allergy skin testing and blood testing. The blood tests said I wasn't allergic to anything. The skin tests said I was allergic to everything except for fish, chicken, and beef. The immunologist was practical and recognized that was not a liveable diet. He had me quit all grains including corn and rice and all nuts and seeds. After 6 months, he had me add one thing back at a time. It turns out rice is my nemesis. I'm fine with gluten, nuts, and seeds. Then we did the same with fruits and veg except I didn't stop them for 6 months. I just started by only eating one fruit, then each week, I would add another fruit or veg. We discovered things that I had eaten all my life with no problems, had suddenly become a problem, like grapes for example. I still have lots of food I can eat. We cut about 5 foods out and I am so much better. The process is long and tedious but I don't miss my bathroom floor at night. ?
  3. Nymph, I'm so sorry. I had an episode of fecal incontinence early on in my illness and it was the one moment I wanted to go crawl under a rock and never come out again. It was on Christmas morning and thank goodness I was at my mom's. I was expected at my dad's and had to call and say I'd be late. He pressed me on why and when I finally shouted at him what happened, I think he wanted to find his own rock to crawl under. I continued to have bowel urgency until we started getting control of my diarrhea and abdominal pain. First, it was artificial control with meds, and, now it is a combination of avoiding foods I am allergic to (although not in the classical food allergy sense) and meds.. I do have MCAS and finding the right MCAS meds was important. The combo that most people talk about didn't help me. I take Cimetidine, Ketotifen (which has to be ordered via Canada online), and Singulair. Figuring out the food issues was a pain in the neck but so worth it. I'm finally at a place where I still have 4-5 bowel movements a day (my immunologist would like it to be 2-3) but they are normal. I do have occasional minor urgency but I don't feel like I will actually lose control. I might have diarrhea 1-2 times per month and I believe that there still might be a food out there we haven't identified. So, there is hope! Don't give up! Work with your doctors. Tell them this is a big stressful problem and that you need their help! I know it's tough to talk about but they've heard it before and they can help! Take care, Katie
  4. Maybe physical therapy (not exercise but for pain relief type treatment) or acupuncture?
  5. I get in bed between 10-11pm. I fall asleep sometime between 1:45 and 4:30 am. Occasionally, I don't sleep at all. If I'm aloud to wake up on my own, I usually sleep 7-7.5 hrs from whenever I fall asleep. If I have to be awoken by an alarm, I am usually a zombie. And if I do use an alarm, it has to be a graduated alarm that starts out very quiet and gradually increases in volume. If it's just a sudden loud noise, it sets off an adrenaline surge and I'm ruined for the day. Ironically, I also have daytime hypersomnia. I can fall asleep easily and quickly any time from 11 am to 6 pm. I will sleep for about 2 hrs if left alone. Sometimes the hypersomnia is almost like a "sleep attack" where I become incredibly cold and feel like I will fall asleep even against my will. My body will start to collapse but it's different than passing out/syncope....it's sleep. However, I am not diagnosed as narcoleptic because during the daytime sleep studies, while I fall asleep much faster than the average adult for the designated naptimes, I don't reach REM sleep in the alotted amount of time. It's like my circadian rhythm has been turned upside down. We've tried all the sleep hygiene techniques and they aren't effective for me. Sleeping pills give me night terrors.
  6. Things I do to help my chronic pain issues are: ice, heat, TENS unit because I tense my muscles in reaction to joint pain and then end up with referred pain, warm Epsom salt bathes, and I take a tumeric and ginger supplement. I hope they get this figured out for you soon.
  7. Has anyone used a topical probiotic for skin problems such as acne, rashes, rosacea, eczema? I (and my dermatologist) have been fighting a rare rash, pityriasis lichenoides chronica (PLC), since July of last year. All the literature says it can be hard to treat and we are going through the list of known treatments methodically. But, my skin is now becoming acne prone (which I've never had a problem with) as well but conventional acne treatment isn't working either. I'm now on my 4th round of oral antibiotics since November (3 for the PLC, 1 for the bad URI and fever in Dec.). All the topical treatments for PLC have failed. We're trying light therapy next. But, in the meantime, I came across some literature on topical probiotics and it makes sense to me. So if anyone has any experience, I would love to hear it.
  8. I know many of us are on one of these drugs due to GI issues or as an H2 for MCAS treatment. There is a link to the original research article published in JAMA embedded in this article but it goes to a PFD and I couldn't figure out how to link the PDF. http://wellnessachiever.net/acid-reflux-drugs-may-cause-dementia-neuropathy/
  9. I carry an epi pen although I haven't had to use it. It is epinephrine so I was told it will make me tachycardic if I have to use it. Beta blockers blunt the efficacy of the epi pen so when I was on a bb, I was told if I had to use the epi pen, I had a shorter amount of time to get to the hospital to get additional help because of the blunting effect of the bb.
  10. For non-fasting tests, my doc told me to drink a 32 oz. Gatorade within the hour before the test and then to continue drinking as much water as I can both before and after. I also make sure I eat 1-2 hrs before a blood test so my stomach isn't full but my blood sugar is stable. Laying down also helps. For fasting tests, I fluid and salt load the day before even more than a regular POTS day. I also ask if drinking water the morning of the test is going to affect the test. Some tests you can't have anything but some you can have water but they'll only figure that out for you if you press the question. Sometimes the doctor who writes the order will know the answer. I also keep hard candy in my purse for a quick sugar fix and then also something like a KIND bar that has both carbs and some protein if I need it. (I've also rescued a few other patients with my candy stash! Lol!)
  11. It doesn't affect me either way as far as calming or making me anxious. But, it is eye opening to see that FitBit thinks I am in the "fat burning zone" every waking minute of the day. I could only wish that were true (the fat burning part....the HR part is accurate.)
  12. Have you talked to the doctor about possibly taking the short acting version of metoprolol so you can take it more often? Also, there is pharmacogenetic testing available that helps people to understand if they are slow or rapid metabolizers of certain medications. I had mine done through YouScript/Genelex. I am a rapid metabolizer of some medications and they therefore have no effect on me or only work for a very short time before they are cleared from my system. Knowing this can allow a doctor to help find a more effective drug. It is no longer considered experimental science but it is newer so a lot of docs haven't used it, but, it's worth the question.
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