Intracranial Hypertension

#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.

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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

Hi, my name is chronicRarebrainIIH. I'm here because I want to meet others who have idiopathic Intracranial Hypertension/PTC. I live in an area where tx is sub-par compared to where I was living when dx. I was misdiagnosed for years before I was finally dx in 2016

#MightyTogether #IntracranialHypertension #BenignIntracranialHypertension #Anxiety #Depression #PTSD