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About chicago58

  • Birthday February 6

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    quilting, decorative painting, designing draperies, bedding, gardening,church, talking to my children on the phone,
    i love visiting vintage towns. architecture. chicago miss it terribly

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  1. so glad you have already had the bubble study. Apparently many migraine sufferer have an open hole in the heart. .Who da thought I was almost 50 when it was found. and you are right the oxygen is more than annoying. hate, hate , hate when it is needed. It is the only thing that stopped them, and now that i know it works' i will do what ever works to stop it and not end up doped up and sick from the meds.
  2. I know in my case they certainly are related.When my o2 has been in the 70's i have seen my handwriting go from clear to scribble as it goes down as for your pulse oxometer for my own piece of mind periodically i take it with me to any Dr. appointments and have them use theirs on one hand and mine on the other. i have so far never had them be more than one point difference, also no matter what you say the DRs. are usually skeptical but when you check it against theirs they can't dispute your numbers.when i am having a crisis i take alot of notes again because of brain fog. otherwise i won't remember any thing i am supposed to ask or tell. i have one that records internally my pulse ox and h.r. I also use my phone to take a picture of it on my finger because i can't believe it when i am walking and h.r. has been as high as 300 only once but often in the 160=190 range, and o2 as low as 70. A picture makes it more real for the Dr. i suspect if your numbers are in the low 90's at rest when you are walking most likely your heart rate goes very high and at some point your o2 starts sinking. i hope you are feeling better soon.
  3. do you have thigh pain or cramping in your muscles? florinef was the med that put my potassium in the life ending range. i finally sat in the dr.s office and said not leaving till you figure it out.and he did. went for blood work and about an hour later got one of those calls. you know the one where the dr. says where are you i am sending an ambulance. florinef is known for dropping potassium level on certain people.
  4. in regards to migraines this may be way off. About 5 years ago i went to the mountains for the weekend and notices everyone sounded like they were talking gibberish and then i looked down and saw my notes were scribble, so i went back to the cabin for my o2 monitor and it said my o2 was 72. thought it was broken till i put it on someone else finger and it said 99. Didn't tell anyone because 8 of us came in the same van. When we came down first person i called was the pulminolagist. between him and the cardiologist saying no it is heart no it is lungs.my pulminolagist ordered a bubble study and then the cardiologist had to do it. even after all the negative echo cardiograms the bubble study showed a large hole in my heart which was quickly repaired. who da known been going to the mountains for 25 years. turned out the blood clots i had had the previous oct. shunted the hole open so it was more easily found. During the heart surgery , yes i was awake for the whole almost 3 hour surgery, i felt the migraine leave. was gone for along time then came back in a different form up to 5 a day. was told those were mixed cluster migraines. well i can tell you e.r.s are useless they always under treat them tried rescue meds. all made me throw up and little help. the topomax was the worst for abort-ant meds. ..long story i had been on oxygen at night from low o2's at night and chronic aspiration pneumonia.. during a 5 month period where i was one oxygen almost 24/7 i notices my migraines were gone. so i asked the nuerolagist, pain management, PCP, pulminolagist, cardiologist why is this working. all of them said well yes that is standard treatment for cluster migraines.. NO IT IS NOT. NO ONE EVER SAID THE OXYGEN I HAVE HAD IN MY HOME FOR FIVE YEARS COULD TAKE MY MIGRAINES AWAY. Not one. pushed plenty of meds though. i don't know how anyone could even find out if it works for them. When i have been in e.r. and a migraine starts i say put the o2 on 2ltrs. and it may intercepts it. At home the same thing if i see the auro or feel the pain starting i put the o2 on for an hour. i actually have only had 2-3 migraines this last year. it is not the cure all for all types of migraines but for mine it has been a sanity saver and kept away so many meds that seemed worse the the headaches. Yes i do go to the chiropractor when my neck or back feels tight. he also adjusts my jaw when it locks in place. all those words to say there is an option no one told me about i found purely by accident.
  5. i test positive for lupus which apparently half the menapausal and post menapausal women due, but without testing positive for any autoimmune disease. yet my CRP is always very high my muscles and bones ache so bad at times. this week i swelled with 20lbs of fluid.face was swollen andred. i am not on cortisone. this week i had two new Drs. see me for the first time and almost immediately asked if i had an auto immune disease based on my swelling,reddness ect. so i do not understand how i can test neg. for a huge list of things they have tested for yet i due have fibro, a very high crp, and sed rate usually un the 70's.. it makes no sense that is also usually when i am the most sympyomatic on the pots. help....
  6. i use o2 2 l at night because my o2 drops as low as low 70's but i do not have sleep apnia. i have been on o2 for over 2 years. but Kare Bear you meantioned not waking up with headaches. i have had severe migrianes for a long time. at one piont the cardiolagist found a hole in my heart and when that was closed the migrianes went away for almost a year. now they are back but different. i hadn't realized that the waking up in the morning with a headache was gone. i am also on axygen PFO during the day. i carry a tank in the car for times when my o2 drops for , variety of reason. afib, scar tissue from several rounds of P.E.s . i don't know what i would do without the o2. it has kept me out of ER many many times when especially this time of the year. also sometimes when the dizzyness is overwhelming the o2 seems to help.
  7. P.O.T.S. Orthostatichypotention i have been dealing with this since 2006. until recentley i have taken for granted the one thing that sticks in my mind is no matter how bad it feels this day or extended periods of time with the palpatations and SVT and standing heart rates in the 160's ++ at time. i always knew it was P.O.T.S. until the end of june.... i went 15 hours trying all of the tools in my preverbial pocket to get my heart rate down it was between 160 and 220 for 15 hours .yea i am that dumb...finally i decided this is not like pots non of my tools are working like laying down fluids ect.. so i called 911. note to self never call 911 at shift change i got 8 of them in about 3 minutes.... turned out after spending a day in ICU i am now diagnosed with atrial fibulation...don't mess around if your not sure let the docs decide.....then a few days ago my heart rate agian in 220 range for prolonged period of time it was all over the map. listened to note to self assumed a-fib not about to call 911 it was shift change.drove myself...note to self even dumber call 911 and take the 8 paramedics they were young and cute anyway...all my asumptions were wrong after all these years you would think i would have it down...nope severe potassiun deficiencey as of yet undetermiined how...no abvious reason and was normal two weeks ago. but low potassium can also cause andcardiac arrythmia....note to emergency room how will i every convince them they need to give me two bags of i.v fluid and not one and i won't come back....i am doing much better but if you are in the least doubt the cardiolagist will be the first one to tell you there is no way to tell the difference without an ekg and having the monitor left on for the hours you are in e.r. long but recently hard learned lessons
  8. they have to be related. i was at the cardiolagist office today and my heart rate was going from 115 sitting to 165 standing. after doing that a few times i ended up in the bathroom at costco for four hours because i could not get out. all that heart bouncing extremes sent my intestines into such painful spasms i was stuck in the bath room puking. i didn't have emergencey rations of zofran and an anti spasmotics to stop it . and i was 40 miles from home. what was supposed to be a half hour dr visit took a total of six hours to get home. rats.... note to self remember never leave house with out phone and emergency stash of medicine. one time i was shopping and it got so bad i had to send my then 9 year old daughter to find imodium in costco , pay for it bring it bring it to me and then wait it out poor thing...
  9. resting high ninties, sitting 115-125, standing 130-140,doing an activity like making the bed last night 165-170. heart feels like it is pounding out of my chest ususally having chest pain anddizzyness by then. i go three days a week for i.v. fluids due to a failure at all the medications. the d. call the fluids a success the get the h.r. down to 100......i dream of the day i can drive more than a half hour and not want to sleep in the back of the car. can't wait for the day i can go on long walks or walk on the beach again or ride the bike i got the day before i got massive pulminary embalisms which exasperated all my symtems. i onder what it is like to have a heart rte in the 60's or 70's i keep thinking mine is gonna wear out from beating so fast all the time.
  10. i always thought it had to do with the act of leaning forward tightens your calf muscles. this is like pumping them and stoping the blood from pooling in the legs for thos few moments and retaining more of it in the upper body and youl notice at the same time you are also slightly tightening you abdomen which also slows and or stops the blood from pooling in the stomach which slows down or stops the dizzynes.
  11. my town is 40,000. all the doctors work out of an ageny 40 minutes away but the nurse she lives in our town. she is a godsend an angel. the supply company is 1 @ 1/2 hours away they are not given a choice about deliveries. most places want to forget our town exsists because we are in a valley away from all the big towns. the the company lines up all there deliveries to our town for one day a week and get really upset if you miss that day. but our area everthing requires travel so the companies have to comply if they want to keep there medicare status.
  12. your post is so perfectly timed. i have been banging my head against the wall with medicare since oct. the company i was useing refuse to bill medicare for the equipment . lines, badages, dressing changes for the p.i.c.c. line. and charged me cash 47.00a day 3 days a week. i finally decided they were not going to bill medicare or even try to work with the doctor so i had to discontinue in home care. but the things i know so far is the Dr. has to state that you are homebound by medicares definition.supposedly they do not cover hydration. technically we are not getting hydration because we drink enough and our blood work does not say we are dehydrated. it has to do somehow in the wording and diagnosis of the doctor.wording the fluid like they are a medication to keep our heart rate low enough. he still hasn't got that right yet. according to my h.i.c.a.p helper we are supposed to be covered if an infusion pump is used. so the thing i was banging my head against the wall that made no sense and will never make sense is that they were covering the nurse you do have to have a nurse involved, at least once a week to **** your medical condition and report back to the ordering Dr.. they were covering medicare part D the i.v. infusion fluids. but they were not covering the i.v. lines the p.i.c.c. line dressings the saline and heprin flushes or anything else considered equipment which came to 47 bucks a day. so they cover the nurse they cover the fluid but they not covered the means to get the fluid from the bag to the body. go figure that one. makes no sense to me. so i am still fighting to get it covered. i was told today that if i am using an infustion pump , which could easily be justified since i have 2 lumens in the p.i.c.c. line. we will see i re applied today it has been hard to go to urgent care 3 times a week. i have been blessed with the best doctor and nurses you couldn't ask for any better i love them they are so patient and wonderful to me. but i have passed out waiting, i am not the only fish in the pond during flu season. sometimes i have to wait 1-2- hours before they see me then another hour before they can even start me. since i have had to go back there i have had pnuaemonia 3 times ,some kind of virus that sent me to e.r. with 103 temp and h.r 160. a,stroke and sinus infection and i stay seperate supposedly from the main waiting room. those are the only things i have learned so far and i should be learning alot more soon i i get qualified for medicare to pay i will tell you how i did it.
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