Start Here – Where I’m at Now

My current list of diagnoses, drugs, and symptoms is as follows –

Diagnoses:

Dysautonomia (POTS, NCS)

Narcolepsy

Fibromyalgia

GERD

Eosinophilic Esophagitis (currently in remission due to diet)

Nystagmus

Suspected IBD

Tested as Hyperthyroid

Generalized Anxiety Disorder

Depression

Most likely PTSD (I’m doubting this diagnosis as I wonder if it’s just the messed up fight/flight response)

Possible OCD

Current Symptoms (well, as many of them as I can remember):

Inability to sleep at night (example: it’s 9AM. haven’t fallen asleep for the “night” yet.)

Need to sleep at least 12-17 hours per day

Nausea (to the point that I sometimes start gagging out of nowhere)

Extreme fatigue

Inability to focus at times

stiff neck and back with knots and cracking

joint pain

“crashing” after an activity – needing to sleep for hours after and then spending days with worsened symptoms

electric shock like sensations

brain fog/ feeling “out of it”

feeling of floating and spinning

numbness and tingling of extremeties

shaking

overall weakness

feelings of being stabbed in random parts of body

back pain

chest pain

difficulty breathing

feeling of painful poison in veins

feeling of limbs/body being stuck and crushed under heavy concrete

muscle pain and sensitivity to touch

dizziness

trouble walking, standing, or sitting for more than 30 minutes at a time

black outs

headaches, especially after attempting to sit up too long

deep sense of anxiety and loneliness, racing thoughts occurring at night

occasional bouts of extreme restlessness and overexcitement

muscle weakness

depression/sense of hopelessness over situation

lethargy

easily tired muscles – cannot use mouse on computer for too long without switching hands, etc

confrontation leading to extreme sense of being in danger, hiding and crying

bleeding from throat (currently not happening)

blood in stool (currently not happening)

diarrhea ranging from severe to occasional

abdominal discomfort

abdominal pain which can get severe enough to lead to blacking out

abdominal spasms

visible muscle twitches in any/all muscles (currently thought to be myoclonic jerks)

anxiety, mild to severe depending on situation

sensitivity to heat

sensitivity to cold

dark line around mouth previously not there

fever which has so far persisted 7 months

sensitivity to light, sound, overstimulation of any kind

 

Current drugs:

Midodrine

Mestinon

Ocella

Thermotabs

Hyocyclamine

Cymbalta

Pantoprazole

Diphenhydramine HCL

Melatonin

Digestive Enzymes

Probiotic

Fish Oil

Multivitamin

Vit. D

Vit. B12

Occasional adderoll (prescribed for narcolepsy)

 

I’m sure I’m missing some more random symptoms (I have a LOT of random symptoms), but this is the majority of what is going on with me. I’ve been sick for just under 8 years and it’s been a constant struggle. The POTS came first and was diagnosed after 2 years, the Narcolepsy 2 years later, the Eosinophilic esophagitis 2 years after that. It’s very frustrating feeling like I am getting more and more sick instead of better – the abdominal pain episodes started 3 years ago with the bleeding and GI symptoms beginning less than a year ago. It scares me watching my body decline and seeing my mental health suffer as a result.  I wish I had words for just how soul crushing the fatigue is – everything suddenly becomes SO DIFFICULT and overwhelming because of it. If I wash my hair, that’s the day spent. I have managed to make my way through high school and community college while battling health issues, and at 23 am hoping to attend nursing school in the fall – but I need a change in order for that to be possible. I’ve been desperate for health and answers for years and have tried just about everything you can imagine. So often I am sick of dealing with arrogant doctors and crazy naturopaths who end up doing more harm than good, but I can’t give up. My next attempt at achieving better health? The POTS treatment center. At this point I’m doubtful that my symptoms are all caused by Dysautonomia, but I don’t know what else to do. I want to find an underlying cause for everything but no doctor seems to want to help. I am hoping and praying that the treatment center can at least help with the fatigue and blacking out and “riled up” feelings, which would most certainly be an improvement.  I just don’t know if I can handle more false hope and disappointment.

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4 thoughts on “Start Here – Where I’m at Now

    1. chanshelly Post author

      Thank you so much for your kind words! Also, your blog is beautiful. I love seeing posts from others struggling with mental illness! I didn’t share a lot of that part of my life here, but I’m sure I’ll get to it.

      Reply

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