lillybits

weird hearing, visual disturbances out of breath and throbbing legs. when i dont actully pass out

thank you to all! and I will!

water and husband!

I will bring this up to him when I see him next. I mentioned at mayo but they were more conserned with everything else..I do take injections to build up my plateletts and hemoglobin dt leukiemia. so far it is keeping everything in check as far as that part goes till i get sick like a cold or something. I collapse too much to know if i bruise easily. sometimes i have bruised where i dont remember falling but my memory isnt what is used to be either. thank you everyone! have you been checked for thrush kimberlygirl? I know most of us catch everything in a 50 mile radious so a lot of the time it is hard to tell...

that is crazy! yes i have been working in hospice and inpatient psyche for the last 6 years and i have been progressively getting worse. i have been unable to work since march of last year......I just kept puttingit off as I was woring too many hours or from just on my feet too much till this last year.. i love taking care of people nut on the down side it makes me a horribe patient

i have noticed i am getting little broken blood vessels all over my face and abdomen.. little red seemingly preminant dots all over..mouth cheesy and abdomen

i get gross belly bloat...I am all skinny and some days look preggers it gets so bad

i get those all the time too. some days i can ignore them then other days I wonder if i have a little fish tank in my eyes ha ha

I have low d but high white cells low plateletts and hemoglobin. Low d is connected to a lot of different diseases and poor health conditions

oh thank you. the ride plus dealing with lots of grieving people and I always try and take care of grandma out there....

have you tried soydream? they also have soy yougert to help get some more probiotics in you too. I have trouble swallowing pills so anything I can throw into the blender i love! I cant have any dairy what so ever so everything i take in i have to be very careful that it doesnt have the slightest dairy byproducts

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

lilybits,

Where do you get this? My pharmacist ordered isosource. My DS is hospice nurse and she suggested if I tolerate the Isosource and start to put weight that they use carnation instant breakfast or boost and add a protein powder to that, mixed in something to make it like a shake. I have a great mixer/blender but haven't been able to bring myself to do that when I can eat solids (they just don't pass/absorb normally). I do drink smoothies (even with lactose intolerance) but I ice cream is too hard on me (love it but it doesn't like me).

believe it or not my chiropractor ordered it for me it took like 2 weeks for him to find it but i can ask him what sight he found it on when i go in next! it doesnt taste the greatest but it does what it is suppoesd to!oh i found it it is on the metagenics websight. i just called and found out where he gets it . its consistancy is like thick chocolate milk but comes in other flavors as well!

smoothies are saving my butt! I get the frozen berries and add soyyougert and almond milk along with honey and random veggies. I also put in maltodextrine and ultra meal 360 with peanut butter and soydream (soy icecream) to bulk up weight. if you use the regular juicers never put the whole orange in like thay say you can it is horrid! i found that there are blenders that heat your veggies as you blenderize them and can make an awesome soup. you can throw meat and everything in them to bulk up protine

i was diagnosed with raynaulds phenominon so thats what i chalk mine up to . physical, emotional stress and cold bring it all on. when we lived in az it would be 115 outside and my hands and feet were still icecubes...

highest my bp has gone was last night in the er 127/76...bathroom floors are all too unforgiving...

all i have to say is there is a ton of amazing strong people on here! I am sooo stinkin happy and thankful that my husband found this sight for me!

i am backwards the more i eat the worse i feel. Its crazy how dofferent the same disease can effect people so differently!

coq10 seems to help. and also drink the b vit gatoraide juice pouches. they are in the protine isle of the store. extra calories,salt and vitamins..plus they taste a lot like jellow before it gels!!yumm!

My husband and I are going out to michigan (7hour drive) for his grandpas funeral. any tips on keeping my head above water during this time??I would be greatful for any input on this whatso ever!!!!

thank you. I am on dilantin to try yo ease some of the nerve pain. I have been put on quite a few anticonvulsants to try to stop or minamize the pain. it has drcreased some of my tremmors. they are talking about severing the nerve but it is right by my brainstem so that makes me kind of nervous. my body rejects most medications. it is the few and far between that actually work for me. I am so thin that the compression stalkings and abdominal binders dont stay on right. ha ha

My husband is extremely supportive to the point that he will hardly let me to anything. I used to get sooo mad at him but now I am very thankful. On my better days i admit i still get frustraited because i still want to do things for my family. He calls me the cacoon lady because i cant regulate my temp ha ha One thing I have learned from all this is how to laugh at myself. there are a few people I had to cut out of our lives because they were so emotionally stressing my symptoms would become so severe that i was completely bed bound and couldnt hardly talk...I used to think it was just physical stress that brought this on...Every day is a chance to learn something new thats for sure!

for more accurate results you are supposed to stop taking all of your medications for your pots symptoms for a week prior to your tests. i had one tilt that showed irratic bp and hr while on my beta blockers and they said at that time i just had ncs. then when the mayo did my second tilt it came back as pots. so i do think that medications can alter your readings. my symptoms can come and go regaurdless of medication some times but at this point mine are ever present.... do you see an autonomic doc? hope you find some relief fighting for answers is all you can do. you have to be your own best advocate!

kim

ever get tested for mg?

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

i get weird hearing from time to time sometimes a ringing or or just a hearing disturbance from time to time

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!