Intracranial Hypertension

Struggling being 31, a wife, a mom and feeling like a complete failure. I can’t hold down a full time job to help support my family. I recently tried to go back to work, and have been struggling. All my down time is spent resting because of the fatigue and pain, and my quality of life has dropped drastically since returning to work.

The guilt I feel from not being able to contribute like I want to is so painful. Going on disability at 31 is terrifying. This is not what I imagined my life would look like at this age. So many questions are running through my mind, like what my future looks like. I’ve never known a life not working.

I dropped out of graduate school and quit a job where I was excelling at because of my illness. I’ve slowly declined over the last few years and I’m devastated that I can’t function before this illness. It’s been over a year since I finally got a diagnosis, and I still can’t accept it. I still struggle with denial. The future is so scary and I so badly crave stability and peace.

My identity has been shattered, and putting the pieces back together is excruciatingly painful. I’m so scared.

#I'm sorry that I have been falling behind in my postings. July has been a tough month for me. Most days I have been sleeping and not really leaving my bed.

I have a series of doctor visits coming up that will determine if I have Lewy Body Dementia. This is a spectrum involving the mix of Parkinson's and Alzheimer's. At the same time as this, I am also in the process of tests to see if I have Intracranial Hypertension. That is where too much spinal fluid is building up for whatever reason and filling areas in my skull damaging my brain.

I am not in denial. In fact, I feel that these two conditions have been the closest to the truth in my three year journey to finding the truth about my health.

I'm scared. I see my father, who has Alzheimer's, decline slowly and he is so angry. I don't want to be angry and mean.

I also have accepted that I need mobility aids. I cleaned up my grandfather's walker and crutches. I saw a wooden walking stick; very fancy. I felt like Frodo Baggins. I can get into using that.

Another thing I am scared about is forgetting people I love. I don't think that will happen anytime soon, but it could be my future and I don't want that.

Thanks for reading my ramble.

#Dementia #Depression #ParkinsonsDisease #AlzheimersDisease #MentalHealth #Grief

Hi, my name is StoicStingray7007. I'm here because

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #Migraine #Fibromyalgia #MultipleSclerosis #PTSD #EhlersDanlosSyndrome #IntracranialHypertension #Narcolepsy #MitochondrialDisease

I’m suffering with my symptoms of intercranial hypertension and my doctors are not offering a treatment or, an explanation for why I have the pressure developing on my brain. So, I’m hoping that someone can offer some advice.

Ever found yourself struggling to manage energy levels amidst the rollercoaster of chronic illness? It's a journey filled with ups and downs, but within those challenges lies hope, resilience, and a path to reclaiming control.

In my latest blog post, I've gathered insights and practical tips for navigating these hurdles with grace and empowerment. From riding the highs to finding peace amidst the lows, we're exploring how to thrive despite life's obstacles.

Join me on this journey of discovery and support as we navigate the complexities of chronic illness together. Together, we can empower each other to reclaim vitality and find strength in our shared experiences. Ready to take the next step? Head over to the blog at the link below and let's embrace this journey with determination and resilience.

3 Ways to Manage Energy Fluctuations with Chronic Illness

#ChronicFatigue #ChronicFatigueSyndrome #IntracranialHypertension #Anxiety #IdiopathicIntracranialHypertension

Hi, my name is CStrong0830. I'm here because my wife has been diagnosed with IIH (idiopathic intracranial hypertension) and I would like to find out as many resources and supports possible for both of us as this is a new diagnosis for her and we would like to do all we can to see her optimize her recovery efforts.

#MightyTogether

I’m new here. I sustained a brain injury in 2017, then ruptured a disc in my back in 2021, and sustained another brain injury in March of 2023. I’m also now facing IIH and a potential POTS diagnosis. Glad to be part of this group.

#MightyTogether
#BrainInjury #IntracranialHypertension #PostconcussionSyndrome #PosturalOrthostaticTachycardiaSyndrome #DegenerativeDiscDisease #Migraine #Depression

Hi, my name is flowersmoon. I'm looking for some support

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #AutismSpectrumDisorder #IntracranialHypertension

Hi, my name is rnzwsrz. I want to learn more about what this is doing to me, what I can do about it , and if future generations of my family will have to deal with this. For the last 4 years I have been slowly deteriorating ,with little to no help from my neurologist. Lose weight, I’ve lost 40 pounds, feel worse now the weight is gone. I should have more energy. I’m losing myself everyday, in different ways. Currently working, not sure for how long I can keep it up. The area I live in doesn’t really acknowledge my diagnosis. Primary care physician says it’s just allergies. ER sends me home with a clean bill of health when I go in, I get to see my Neurologist’s assistant twice a year, and that’s it. Just looking for guidance and comfort. I’m frustrated and tired.

#MightyTogether #IntracranialHypertension