Jump to content

lillybits

Members
  • Posts

    128
  • Joined

  • Last visited

Everything posted by lillybits

  1. Hi I am new here. i was recently diagnosed with pots, neurocardiogenic syncopy, and trigeminal neuralgia. among many other anemias and diffiancies. I used to work full time as a hospice nurse and take care of my kids both with medical issues and my husband that is disabled due to a back injury aquired at a foundry. Thinking back i guess it started about 5 years ago when I would pass out for no real reason, i broke the vaccume by landing on it ha ha . It kept getting worse for about a year when i had my halter moniter on my hr was at 177. than it seemed to just be annoying and was put on a cascade of beta blockers and antidepressants for the last few years and was told over and over agIN THAT IT WAS ALL IN MY HEAD AND I HAD TO DEAL WITH STRESS BETTER. March of last year was the kicker when I passed out and took a patient down with me. I have been out of work since then and have had severe symptoms of just sitting up right and passing out, trouble chewing, due to muscle fatiuge and trigeminal neuralgia. I dropped 25 lbs and only being 120 and 5'7" to begin with didnt help any. I get tremmors in my head face arms and legs, rapid muscle fatiuge, no appatite, etc... My home away from home is the mayoclinic where most of my newest diagnosis have been made thankfully! I do the salt, water, agtoraide midodrine, amnilodipine, b12 inj for pernatious anemia, cq10 for mito issues d3 for that diffiancy blenderized diet along with maltodextrine and ultrameal plus 360 for weight issues and multivites. My neurologist deemed me as being incompasitated.. for how long i dont know he said it will take atleast a year before they can have me leveled out. I dont know where that is. my husband says they are going to get me fixed but I have a hard time believing that. I have 2 kids at home still and it breaks my heart when i look up from the floor and see my 7 and 9yrold terrified looking down at me.I hate that they have to add more things that they have to do because mom is broken. the simplest things make me bed ridden. I love running, biking and working on cars mostly i miss my independance! I used to take care of everyone, sons neurologist daughters mito docs and husbands pain clinics. How do I learn to navagate this ?there is sooo much i still want to do but have a body that traps me.I cant talk on the phone for very long and some days not at all it wears me out and leaves me gasping for air...Any tips or advice? I am 32 and am as moble as a 90 yr old with chf... thank you, kim
  2. trying to learn how to navagate my new life

  3. i get weird hearing from time to time sometimes a ringing or or just a hearing disturbance from time to time
  4. i end up with trouble focusing on things and get double vision real bad sometimes its like my eyes will shake rapidly from side to side but that usually happens when my tremmors are at their worst.then there is the lovely alshimers type symptoms.....seema as soon as I think i can try yo figure out how to manuver around the symptoms i have had for the last year a new one reares its head.... everyday is a gamble! you never know what life will throw at you next!
  5. Hi I am 5'7" went from 120 to 95lbs in just 6 months. now i add maltodextrine to my almond milk(dairy allergy) and drink ulra meal 360 plus. it is dairy,wheat, gluten,nut,egg,treenut,fishcrustation, color,artificial sweetener,preservative free. it is made by metagenics.it is made for people with conditions associated with metabolic syndrome and cardiovascular disease. The combination between those two things and a high calorie high protine blenderized diet has brought me back up to 102. I still have to fight to eat and everything just hurts but this by far has been the easiest on my gi.I also was put in the failure to thrive catagory not due to my activity level I do my best at keeping up on but just on my weight loss.Hopefully any of this is helpful kim
×
×
  • Create New...