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Everything posted by kim5204

  1. I rented a professional scenar device for one month and he showed me how to use it took him 3 hours to explain it and I used it multiple times a day. It did not help me, but i cant say if it would be beneficial to anyone else. I have been having luck using the intergetix core rife system throuh naturopathiic doctor she has been helping me with this device more than anything i have ever tried. Google it if your interested.
  2. Congrats they are really life secret blessing having a baby , enjoy him when they are small as it doesnt last long enough they grow so fast.
  3. I actually have a pupil that is oval and looks like a cat eye scares people, its nerve damage and its been that way for 10years. My other pupilmis normal though.
  4. I find they do help for about 10days afterward i actually had one today and doing ok was able to take my kids shopping i do get a headache 2 days afterwards though. I hope he finds help with the ivig treatment and please let me know how he does. I actually am trying a différent treatmet friday called rife freequencys for some chronic bacterial infections i have and i am hoping it will help too with other symptoms i have. I have a friend whos husband does this treatment every week and it put his multiple sclerosis in remission. good luck Kim
  5. Durng pregnancy you feel better but after the preganacy i was worse then before. But thats my expeirience from both my pregnancys.
  6. I have this all the time I had a check up with my gi doctor yesterday tell him,all the symptoms which seem to be getting worse and he brings me himself down to the er and gets some blood work done an ekg all come back fine puts me on propranolol low dose will pick that up tomorrow. I think its al, about the blood flow with the dysaustonmia.
  7. Yes I have gi troubles which got really bad a few years ago but have improved with treating pots and fluid and salt, florinef. For my gi troubles use domperidone, and recently started cisipride again for really bad days. Sorry your having a rough time.
  8. I delivered my 2 vagnally my symptoms flared afterward but probably from the lack of sleep.
  9. I had horrible first tri mestets for both of my childern severe fatigue, vomiting, lightheaded, but hang in there I didnt see an improvement until12-13 weeks along I started to feel better than for the rest of the pregnancy felt great. Had a few fainting episodes which was scary but hang in there it should get better. I unfortunately could not work either during the first 3 months but I was able to return after the first 3 months of pregnancy. Hope you feel better soon, the extra blood volume in the second trimester should help once the hormones settle from the first few weeks.
  10. Wear compression stockings, take antinausea medication before, listen to music take your mind off things, try and stay hydrated. I flew Last summer and was ok and had to also manage a feeding tube.
  11. Yes I have been tested for addisons was negative as well.
  12. Well I have a j tube that I use for feedings, but no longer tolerate feedigs so I am using it for 24hour hydration with potassium, sodium, magnesium run through to keep me stable.
  13. Thanks Janet I guess I only have the option to fight and keep my head up at this point with two children who rely on me. I do have my down days and just seem to becoming out of a five month flare up after my j tube placement. You made me smile with your kind words. Thanks Kim
  14. It helps with waking up not so exhaustd just finding it hard to get to sleep. When I do sleep through the night I wake up feeling great. Getting to sleep has been a real struggle. Let me know how you make out.
  15. I have been having ivig since October and will do it for 6 months, I keep catching infections so cant tell if the ivig is helping yet. Havi ng j tube changed this week thinking that what was making se sicker but who knows now. Goodluck.
  16. Yes I have this but dont really excersie anymore, but when you excersie it takes away the blood flow to the digestive system, less blood flow your gi symptoms will be worse this has been my experience.
  17. I have had to do this 3 times for endoscopy wide awake the doctor did not even give me the option to be sedated. I then switched gi doctors and he did an endoscope and there were no questions he just put me out with sedation much easier than vomiting and choking. I know how you feel.
  18. Yesterday I had a headache but do feel better today. I find I am hungry the next week after my infusion which never happens so I will take that as positive. I see my neurologist dec and if my blood pressure is still low he will add midodrine. I have issue with keeping blood volume up everything goes right through me.
  19. I am not sure how it increase blood pressure but my fever went down today and they did the ivig treatment and when there dojng it my blood pressure goes up. But went back down after the infusion. My neurologist said it should help the blood pressure I didnt question him how it was suppose to help, I was desperate for anything to help the florineff salt stopped working blood pressure was really low. They just did privigen(ivig) today and will be doing it for 5 more months than reasses. I am from canada so its easy for them to order ivig treatments willkng to try anything that could possibly help.
  20. The blood pressure hasnt gone up and I wad due for my Ivig treatment today, but due to some kind of infection I am currently in the hospital and they will hopefully start ivig treatment next week again. The infection is not helping my blood pressure ut was 73/43 when I came in the hospital. Hhopefully will see some improvements in the next few weeks. Although the week after my week long ivig infusion I felt great.
  21. I feel same way I am sitting in the hospital why my kids are out trick or treating. I have accepted my illness but dont like the fact my kids have to come along for the ride. Just take it one day at a time and I always hope tomorow will be better. Kim
  22. Sorry your feeling this way. I know exactly how it feels I am a 30 year old with 2 kids too, struggling to get through everyday with dysautonomia, mine has greatly effected my gi tract and have a feedibg tube in my jeujenum. I have learned to take breaks all day cant make any plans because I never now how I am gonna feel hoping to be able to take my kids trick or treating today but cant due to some sort of infection and in the hospital hoping to get out tomorow. Accepting my limitations had been the hardest part, take it a day at a time enjoy the moments you can with your family.
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