Idiopathic Intracranial Hypertension

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Idiopathic Intracranial Hypertension
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I’m new here!

Hi, my name is ShelbyBelle. My life completely changed when I was diagnosed with an illness that went undiagnosed for 10 years. Now I finally have an answer as to why I’m in so much pain and going blind, but adjusting after the diagnosis has been difficult.

#MightyTogether #IdiopathicIntracranialHypertension #OccipitalNeuralgia #TrigeminalNeuralgia #PTSD #Depression #Anxiety

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I'm new here!

Hi, my name is brazil24. I am 30 yo and I'm here because i am looking to gather as much information as i continue searching for answers for ongoing and worsening symptoms. I was diagnosed with IIH at 13yo and Solor urticeria at 21yo. For about 9 years i have had episodes of aching/pain which would take over my body. While it was barable in early year, the last 6 months it has become constant and significantly worse. Yet still nothing. I have 8+ years of working in healthcare, went to school for biomed prior, and am currently working on furthering my education to become a nurse practitioner.

#MightyTogether #ADHD #Migraine #IdiopathicIntracranialHypertension

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IIH for the past 20yrs

I don't talk about my illnesses alot bc it's taken the life I use to have. I lived a great life filled with adventure and ppl who loved me. Where are they now? Great question. My best friend of 25yrs is the only one who stayed. I'll do anything for her and her kids. IIH caused me to have a deep depression and I truly believe I had to go thru it to get a slap to wake me up. Sometimes you have to hit rock bottom to rise up again. After I came out of that I thanked God for bringing me thru. Then set my mind I was going to live better and started living a 180° difference from the way I had been. Yes I'm sick but what can moping around the house do to fix it? How can staying in the bed all day help me? No I don't want to get up and sometimes it tremendously hurts bc I have Fibromyalgia too. I'd rather stay in bed but I force myself to at least get up and wash my face, comb my hair and brush my teeth. Usually by then I feel like eating a little something. To look at me you'd never think I have a prob eating anything but I do. My MIL says I eat like a bird and sometimes I forget to eat at all. I forget everything and that's the most frustrating. Words. Things I just did. The atmospheric pressure gives me migraines. Ask yourself how often do you have a migraine close to a storm? Can you "predict" storms better than a weatherman? I can! 😂 I don't even watch the news and I know with 100% accuracy when a storm is coming. I've never been wrong once. What kind of storm is another thing bc I only know something is about to happen. See if you're the same way.

Off the subject are you taking Diamox? They give that to seizure patients! Ask why you are taking it? I'm not on Diamox after my Doc tried to kill me. Literally. He didn't do a simple blood test and if he had he would have known that Diamox was removing Potassium from my body. I was already taking Topamax since it was on the market for my spine. All they needed to do was increase the dosage and put me on potassium fluoride! My reg doc figured it out. My heart got down to 45 beats per min. Yeah dead. My feet were black with blood pooling in them. Don't let that happen to you! Question EVERYTHING a doc gives you and ask why until you understand it in English. Be well my friends and we will get through this together! *gentle hug*


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Coping Through the Pain/Anxiety

What are some coping mechanisms when dealing with the pain? I have had migraines since I was a child but over a year ago I was diagnosed with Idiopathic Intracranial Hypertension (Psuedotumor Cerebi). Now on top of the pain, aura, etc I also get back, neck pain, lightheadedness, dizziness, and severe pain behind the eyes and from my shoulders up. Any day where the pain is less than a 7 is a blessing. I still work full time and push myself through the pain, recently I've noticed myself feeling much worse despite losing weight and my eye doctor saying he didn't see edema behind my eyes. Today it was so bad I went into the restroom and cried and asked myself how much longer can I do this, working full time trying to live life as normally as possible. I can't even walk long distances anymore (I used to walk a few miles a day) without getting short of breath, very light headed, and dizzy and without sharp pain. My family suggested getting a portable wheelchair, which I think at this point I may need. Any advice would be greatly appreciated. Thank you! #chronicmigraine #Migraine #IntracranialHypertension #IdiopathicIntracranialHypertension #IIH #iihwarrior #ChronicPain #RareDisease #CheckInWithMe #BackPain #TheMighty

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Symptoms Worsening #RareDisease #TheMighty #MightyTogether #IIH #IdiopathicIntracranialHypertension #Migraine #IntracranialHypertension

Champions adjust, and I am currently learning this the hard way but that's okay. I have my faith and my support system. I try to count my blessings. I started having blackouts. I can't ignore it. I see spots and sometimes can't see anything. I constantly feel the pressure in my head now the lowest it goes is a 6, sometimes I get random stabbing pains in my eyes. I've been getting episodes of weakness where I feel lightheaded and dizzy and I lose my balance, it makes me concerned that I will pass out, especially since I'm still working full time as a Medical Receptionist. My vision has worsened. My glasses are now too weak of a prescription. I go to Lens crafters Saturday thank God. I can't drive, which I never really did to begin with besides practicing. I realized this when my husband told me "don't feel bad because even if you wanted to drive I wouldn't let you right now because I'd be afraid of what could happen if you have an episode on the road." It never even occured to me until now. I count my blessings daily. I'm alive I'm fighting. We will find a cure. We will not suffer alone. 👊🏽 #IdiopathicIntracranialHypertension #IntracranialHypertension #RareDisease #ChronicIllness #ChronicPain #ChronicMigraineSyndrome #Migraine #PsuedotumorCerebi #rarediseaseawareness #TheMighty #MightyTogether #CheckInWithMe #mightystrong #ChampionsAdjust #StayStrong #CheerMeOn #grateful #TheLittleThings


Firstly, hi, secondly, does anyone have a wired smell constantly in their nose?

I got diagnosed 3 weeks ago, had a lumbar puncture and started on Acetazolomide which was awful, made me faint and I could hardly move! (I'm now off this and hoping there's another option before a shunt!)

Since having the spinal tap I've had a weird smell in my nose constantly, like burning rubber and smoky.
Has anyone else had anything similar?

Also if anyone has any tips for the bad days, please help!
Thanks :)




Anyone on here suffer with iih too? Would be really cool to have people who actually understand what i go through everyday :)

#IIH #ChronicIlless #chronicallyill #ChronicMigraines #IdiopathicIntracranialHypertension #ChronicFatigue #MentalHealth #MentalIllness

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The grief of chronic illness

Today I cleaned out my bedroom closet, something I had been putting off for about 19 months. I kept putting it off because I was holding out hope that maybe my health would change and I might be able to do some of the things I once did.

Acceptance of my limitations is hard for me and I find myself grieving my old self more often. It’s not like I have ever been particularly “well” but I was somewhat functional, much more than I am now. So, back to my closet. I cried. Not for the actual clothes, shoes, or objects themselves but for the memories (I have an eidetic memory) I associate with each item. I cried because with each thing I took out to put into a storage bin I would think of something or someone I loved, I missed. Things I would wear to work, to see family & friends, to go to fun events, even down to a t-shirt I wore to clean the house (who would have thought I’d ever miss that?! Lol). These are all things that seem to be in the past now, things that I miss dreadfully. Now my closet is filled with clothes that can be easily accessible for doctors, nurses, diagnostics, treatments etc. The way I dressed used to be a part of how I expressed myself; it would give me excitement to try new outfits. Now, I feel sad, hopeless, and feel reminders of how uncertain my future is. I’m not ready to fully accept my illness or my limitations but I am trying to be realistic and be patient with myself along my journey. I’ve kept a couple special items in my closet just to stay hopeful but putting my things into storage is a first step for me to be ok with my limitations. When I am ready, I will donate my clothing to a Women’s shelter and the women’s jail in my area that helps inmates transition back to the community. That will be something that I can still give, something that I can still do for others which has been what my entire life has been based upon.

This post was just a way for me to release my sadness and emotions I face around the losses that come with chronic illness and disability. Maybe others can relate. #ChronicIllness #Disability #Autism #CPTSD #ChronicPain #AutoimmuneDisease #Jointpain #DegenerativeDiscDisease #Fatigue #Gastroparesis #Endometriosis #IdiopathicIntracranialHypertension #Depression

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