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jkoconne

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Everything posted by jkoconne

  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!
  16. I get something similar but not exactly the same. I get that feeling but its on the inside on my leg. Its like a kinked hose was opened and a cold rush runs down the front or back of my lower leg. Its a very unplesant feeling but im getting use to it when it comes. It only comes and goes as it pleases like many of my symptoms
  17. Well this is ironic...After posting on here a fewa days ago and doing good while exercising...Today I did my normal cardio and 30min workout routine. nothing different, no added weights. Felt like i do everytime i workout but when i left I looked at my HR monitor (polar f7 chest band and watch). It said my average was 140 which is normal but my high was 206!! Ive never even reach 200 before. only 198 and stopped what i was doing. I didnt feel tachy worse than usual and i didnt get light headed or feel "uneasy/anxious" like i usually do when i hit 190. So i have no idea what was going on. I've been very tachy the last few days but not serious and then after my workout today it was staying at about 150 while i walked around to do normal activites (classes, shower, standing and walking in the house). Ugh some days dont make sense.
  18. My Hr depends on the day im having but its always between 160-198 when i do cardio. My max is 200 and when i get close I usually stop because I get nervous. I wear a heart monitor everytime I work out or even go on long walks. I can tell when im getting close to my max...I just dont feel right when i get to 198. So ive been working on trying to figure out this whole thing. Like i was doing 15min 3x a on the alyptical (spelling) and walking on the treadmill 2x last week. My Hr was normal but then this week just walking makes it 165-180 so i havent been able to do anything but walk. I know walking is better than nothing but my neruo really wants me to be jogging 15-30mins 5x a week.
  19. Thanks issie! Me and Bentyl do not get along I tired in a couple times. Im glad your pain is under control
  20. Is it from a different manufactuer/distriutor? I take zofran and get bad reactions from one manufactuor and not others...It will say on the bottle and you can ask for a certain manufacturer. They are all suppose to make them the same but that doesnt seem to be the case anymore...
  21. ESoskis- Im sorry i missed your post! yes, i have thought of this but it seems to happen when my GI symptoms are improving. They have gradually been getting better and the pain is only getting worse. At times i think its nerve pain when i get a specific colon pain and chest pain at the same time but that doesnt always happen...i have multiple chest pains and i do believe some of it is refered from the stomach/gi issues. But not all of it
  22. Ukwildcat- They oringally thought it was my chest wall too when it go so terrible a few weeks ago but nope...MRI shows no immflation and the pain is still coming and going. But its nice to know im not alone and someone else has experienced. Except I know the pain and im sorry you have felt it too Dpeeps- Im sorry you experience this pain too...yet its comforting to me im not alone. And i couldnt agree more with you that this is the one thing i cant cope/deal with. I feel like its a heart attack or something serious. They keep telling me EKGs are normal while its happening and im "not in immedate danger" okay but what about future danger? Ive had many EKGs they are all "normal and the same" Ive had the holter monitor, 30 day event planner (a year ago, you push a button when you feel the pain and it records the last 60 seconds and the next 30 seconds), echo and my cardiologist said he doesnt think its my heart. The MRI last week looked at my heart too and didnt see any abnormalities. Im thinking of asking for another event monitor now that its coming more often and more intense. Have you had indepth testing? The pain doc said to talk to my neurologist about testing the nerve function in my chest wall...ive had it done in my legs and arms and it isnt fun but well see if they think doing my chest will be worth it. I thank both of you, all of you, for your supprt. I get worried about symptoms sometimes, especially this chest pain. Im sorry some of you have experienced this pain but im also glad to know im not alone. This seems to be another mystery of pots
  23. Thinking of you! Ive been tested for Charsinoma (spelling?) cancer 4 times...The docs were sure they had finally figured it out. I understand the scary feeling of wait for those results...and then them not telling you over the phone. Talk about a serious flare up of symptoms In all honesty all i did was pray, and meet with my counsleor to try to cope until I had results...It was a rough few weeks (they were all spread out becasue they kept retesting me). Im sorry you are dealing with this. Hugs
  24. Ive had 3 or 4 done. And its nothing to worry about! its easy, no serious prep like a colonoscpoy. I havent had it done for that reason, mine have all been GI related symptoms. The docs will give you meds and you wont remeber a thing and feel pretty good after Have you ever had these types of meds before? The first time they didnt make me feel good (lightheaded and neasous) but when i told the doc that they gave me other meds for that and everyone since has been good! Good Luck! Hope you get answers
  25. Thanks katybug, But i dont take anything like that and its rarely in my diet. Ive thought about my meds but i havent found a link to any of them or a combination of the them. The pain is often but very random and the time it lasts is also random and unpredictable. Angela, I know but there is no inflammation in my chest, heart, lungs at all. All they found was inflammtion in my colon but thats not new...ive had that for years! In 5 years the only time my inflammation tracer came back even a lil high was 2-3 weeks ago in the ER and its back to normal already.
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