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Still Full Of Life Inside


lillybits
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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

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Of all the things you have, I think the pernicious anemia is the rarest in your age group. It's probably somewhere around 1 in 10,000 for your age group. I know that speaks nothing to comfort you, but just a random insight that might make you shake your head at it all and wonder how it is you got all these things.

But anyways, certainly as you are aware these symptoms are not due to anxiety or "all in your head" there is a very real physiological mechanism at play behind all of these things. I'm sure since you've been to the Mayo Clinic they have already tested you for autoimmune disorders. There very well could be an underlying autoimmune mechanism that medical science hasn't discovered yet, but there is no sense going into steroid treatment for something as of yet unknown.

The first thing I would suggest for you to do is order a G-Suit. I haven't tried this myself, but there is a website here: http://www.oiresource.com/design.htm where a person with orthostatic intolerance found immense relief from a G-Suit and was able to go from bed-bound to homebound. This might allow you enough relief to move about the house. I would have your husband look into it as well as it might very well be a good option for you.

Next thing, perhaps you can talk to some of the doctors at Mayo Clinic for possible stem cell therapy? Since the nerve dysfunction has been localized and if you perhaps have some sensory neuropathy from your pernicious anemia, there might be a role in regenerative medicine to heal some of your nerves and ease your pain. I'm not sure if medical science has yet produced a viable stem cell therapy for nerve dysfunction, but there are centers in China that would be willing to experiment. I know this isn't a likely possibility, but it's just really the only thing I can think about, I'm sure if there is something the Mayo Clinic doctors would know about it. Besides, it can't hurt to ask?

I hope you get to feeling better, I'm sorry I can't be of much help, I just don't have many answers. You sound like a very strong person, a person who has taken care of others and now it is time for people to take care of you.

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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!

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