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jkoconne

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About jkoconne

  • Rank
    Advanced Member
  • Birthday 06/10/1991

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  • Gender
    Female
  • Location
    Arizona

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  1. Hi, I have very bad GI symptoms with my POTS. It took me a long time to find the right mix of cardio and strength training. Cardio can help my motility some days and make it worse others. Its taken about a year to know what days are good days to do cardio and other not so much...But on good days i do about 20-30mins of light jogging (my hr doesnt allow me to run. it gets too high). Also, I dont do any crunches. It seemed to cause more pain in my lower abdomen and colon. I do other forms of core exerisice, like planks ect. Also If you can bring a pots overview to your trainer. It helped my first trainer (she moved) and now second trainer really understand more of what to focus on (Legs and Abs..to help my cirrculation). I also wear a HR monitor that they need an eye on while Im doing my exercises to make sure I dont get too close or reach my max HR. Good luck!
  2. Hi all! Thank you for responding! I've had a busy week and my free time was spent sleeping/relaxing so I haven't been on. So far the cromolyn has been okay. It's reduced my nausea and feeling of general sickness after eating. By Friday I was only feeling bad at 1 meal a day rather than all 3. The doc said it'll take 3 weeks to know it's full effect but so far so good! No bad side effects except more urgency than usual with bowel movements. Right now I'm taking 10mg (liquid solution) mixed in 8oz of water 3x daily 30mins before meals and then 1x before bed. It's really hard making that work with my schedule and when I'm not feeling good Thank you so much for your input and advice! It's always helpful to me! I wish you and christyd's son all the best and hope you feel better soon!
  3. Thanks Alex. I'm just starting treatment for mcas/mcad and was looking for something like this to better understand what the doctor was explaining
  4. Hi, I didnt have time to read through all the posts above me. I do have very Low Vitamin D. I have been taking 10,000 units of Vit D a day for 8 months now and my levels are starting to improve but are still not where my doc & nautropath want them to be. I can't tell a difference on whether I feel better or not. If I happen to forget to take it one day, it doesnt change my symptoms or overall well being that day
  5. Hi all, Its been a few months since I've been on the forum. I've been having a lot of up's and down's. My neuro tested me for Mcad. I guess he's adding this test to all of his pots patients tests now. I was tested for Mastocytosis (spelling?) in 2011 and the test was neg. The Mcad test was also negative but very close to the high limits of each category. because I had been feeling okay the week prior to the test the doc thinks I may have it and we just didnt catch it in a flare up. I remember the doc that tested me in 2011 thought the same thing but didnt want to put me on medication. Anyway, I want to improve so I decided to follow the neuros lead and start treatment for Mcad. Its a 'Coctial' of 3 medication. I'm starting the 3rd medication today. I have been taking allegra 1X daily and Pepcid AC 1X daily for the last week. Today I started Cromolyn (similar to gastrocrom I've been told). I will take it 4X daily- 30mins before 3 meals and then 1X before bed. Im curious if anyone is currently taking a mast cell stablizer. If yes, do you have advice? what has your experience been? Has anyone tried treatment and didn't find it helpful? If so, what was your experience? Also, did you take it for 2-3 weeks. I was told I wouldnt not know how helpful it would be for 2-3 weeks. Thanks! Hope everyone is feeling good today
  6. Hi Alica, I'd like to follow your post and hopefully someone knows. I started treatment for Mcad today! I havent been on this forum in a long time and was coming on to see how others have tolerated the treatment. Hope you find a forum!
  7. I had the same thoughts when it was on the news tonight. So very sad
  8. Thanks! me too, I call every few days to ask about cancellations. I would call everyday but i seem to be annoying to them..
  9. I had both tests done over the years and seen an immunologist :/ my naturopath was most helpful with my second bout of mono so I tried to get in but his next available appointment is aug 1st Thank you both for the ideas!
  10. Thank you two for the input! My first mono was in 2003 and it was awful for 6 months, ive never been the same. then it came back in 2008 and thats when the pots really set in and things took a turn for the worst. the last 2 years the GI issues from mono have slowly been getting better. Mid july will be 1 year since my official dx of pots. When i get sick with a cold or virus my pots flares up but nothing like this before...i usually get tachy and bp goes up and things start to resolve with hydration...but nothing is helping. My primary is out of town for 3 weeks so i saw her partner last week and today I called to get in again and she said she doesnt know all of my history enough to help me...at least she was honest...i guess. So i called my GI and i can be seen by her pa on tuesday. Im hoping this isnt another mono flare up but that sure what it feels like im pretty scared its going to make my pots worse. I see my neuro at the end of july and wants to put me through the autonomic tests again so well seen then. Just feeling discouraged... Thanks for your input!
  11. Hi all, I have been on in a while a doing pretty good. Minus the heat in AZ making it hard to stay hydrated. Anyway, I got sick about 2 weeks ago (sore throat, nasal drainage, SWOLLEN glads, and bad gi pain) with what my primary doc said was a virus and it would pass. Well 2 days later I was back to normal...but then I woke up again and it was worsen then ever. My glands were really swollen and my gi pain was really bad. It been coming and going but wed night things got much worse. I was having a pretty good day wed until I ate dinner. About 2 hours after dinner i all the sudden knew i was going to throw up..no naeusa or cramping but i know my body. Sure enough as soon as i stood up I was running for the bathroom and barely made it before loosing all my dinner and then some. Since the eating has caused a lot of pain from my upper left abdomen to my lower abdomen. Its a mixture of stabbing and burning pain...ive never had the buring pain before and its unsettling. Since Wed night my bp has been lower then ever and same with my hr. My hr rarely goes below 80 and yesterday (thurs) it was between 62-85 all day and mainly in the 60's, which concerned me. So today i called my primary and told her nurse i need to be seen and also called my GI. Has anyone experienced that? My fear is that becasue my pots started after mono, which is a virus, that this virus is causing more and/or worse symptoms Time and a doc will tell i guess... I cant see my neuro until end of july.
  12. Oh and my periods...everything flares up! I mean chest, legs, back, stomach, dizzy...the whole deal but i started a new Birth Control 2 months ago and its helped so much more then any other brand ive tried!
  13. Dpeeps- Well after my extensive workup I was told the docs couldnt figure it out. For the first time they told me to seek alternative medicine. I went to a chiroprator who is also a kinesologist (spelling? they work with muscles) and an accupunturist. Both told me it was my diaphram being in the wrong place. They both worked on the area and i've been pain free...well chest pain free...for over a week now! I was so impressed but well see how it holds up
  14. jkoconne

    Quote

    I came across this on pinterest today and loved it! I truly believe pots has build character in me "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have their ways out of the depths. these persons have an appreciation, sentitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people dont just happen" - Elizabeth Ros
  15. I use to be very scared with meds becasue I always had bad/sever reactions to medications. I got my liver enzyme pathways tested and found out i dont metabolize a lot of medication correctly. Now that i know this I feel more comfortable taking meds because doc know what is and isnt "safe" (from a metabolization point) for me to take. I still get anxiety when i take new medications and stay over night at my paretns house incase i dont feel good. With all that said, I started taking midodrine in december and its been great for me. I got minor symptoms at first..tingling in my head and really exhausted when it wore off. Now, i dont get any symptoms. It helps me keep my hr down 10 bmp, helps the pooling in my legs SOO much and helps my energy when its effective. I hope you figure out what is right for you! I wish you the best of luck!
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