Intracranial Hypertension

Hi everyone. I have been struggling for a few weeks after realizing that the styloidectomy on one side of my neck did not make much of a dent in the constant pain I have experienced under the jaw. What it did do was lessen the throat and tongue spasms I was having, and took away the intracranial hypertension which was a previous concern. I've had severe POTs with severely dysregulated sweating, heat intolerance which have been very limiting. I haven't even told my own mother that I don't feel well enough to even join the community choir. I haven't been able to work for 18 years. My son, almost 13, is tough, because he's got ARFID, ADHD, and is very rigid and averse to joining anything even though he's highly athletic. There is no family nearby to help. I just feel like I'm in total hell, watching a young person atrophy because I am atrophied, and there are times I genuinely can't help him with things. I don't even have the support of a family doctor right now. I'm in high pain and high stress, and I need to triage my life. My son has been on the BBBS list for over 3 years. He won't see his father. Everything is OK when I feel ok. I have worked extremely hard for the treatment thus far and I really don't think I have it in me to continue to work this hard while feeling this bad. Please advise.

Hey everyone!
This is my first post, I just joined today.
I am reaching out for support as I am feeling very alone in my chronic illness. I have been diagnosed with 15 chronic illnesses; 5 of which are autoimmune diseases. In my journey, I do not feel as though anyone can relate to my experience and people get overwhelmed when I talk about it. I see people’s eye get big and they get uncomfortable or just try to fix my “problems”.
I do not know anyone who has been through what I am going through, or if they are it is not at the extent that I am.
Does anyone have suggestions for this or can anyone help with some support on the matter? I have been feeling very lonely as a result.
Thank you all. ❤️ #ChronicIllness #IntracranialHypertension #exhausted #Loneliness #RheumatoidArthritis #AntiphospholipidSyndrome #Endometriosis #Adenomyosis #PolycysticOvarySyndrome #AlopeciaAreata #Psoriasis #Fibromyalgia #Lupus

Hi, my name is Lakshita. I'm here because I was diagnosed with Ideopathic Intracranial Hypertension when I was 17 and this chronic illness seems nowhere to be found yet has managed to ruin many aspects of my life which I’m trying to gain back

#MightyTogether #Anxiety #Depression #Migraine

#IntracranialHypertension

Is it or isn’t it…

Leading up to August, for around 6 months.. I have been having right sided numbness in my face, blurred vision, burning headaches as well as sharp headache and neck ache. All of those symptoms being present all together. After GP checks Opticians they sent me for an MRI. The day of the MRI they called be back in after, saying there were some abnormalities and pressure build up. They thought it was IIH. I then spent the next week back and forth having various tests, and then eventually a lumbar punch. After the lumbar punch they said the fluid that they took pressure was 17.5 and needed to be higher to be considered IIH. I felt ropey for a few days afterwards but after a couple of days the sysmtoms I had previously had gone!!!!!

They still referred me to Neurology and I’m awaiting an appointment, they also prescribed me sumatriptan (for migraines) to take if symptoms come on suddenly. However in the meantime, specifically this week, all my symptoms are back. I have tried the sumatriptan and it only seem to make things worse.

I rang the GP and she literally said in her very words “I don’t know what to suggest, other than A&E” she also said she’d write to the neurologist and ask for any interim advice?

My speculation is that the release of the pressure from the lumbar punch, albeit not enough pressure to contitute IIH, surely is suggestive that it is that.

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.