Intracranial Hypertension

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So after 2+ years I finally got the answers I've been waiting for. I already knew I had Idiopathic Intracranial Hypertension. Last week we just went over my Echo, Tilt Table, and Holter Monitor results and I was diagnosed with POTS and Raynaud's too. I'm just grateful and relieved for answers at this point. I'm on a med to raise my blood pressure to help prevent the fainting and I use a stationary bike 30 min a day to help build strength in my legs now. Baby steps but I'm getting somewhere. I'm more relieved than anything right now just to know what's wrong and finally be getting treatment for it, it's been a long bumpy road but I'm gonna be alright. #CheckInWithMe #PosturalOrthostaticTachycardiaSyndrome #IIH #IntracranialHypertension #RaynaudsPhenomenon #RaynaudsDisease #ChronicIllness #thankful #TheMighty #grateful

6 reactions

I’m new here!

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

5 reactions 4 comments


Fragmented I guess is the best way to explain how I've been feeling lately. Do you ever feel like you're drowning in your own thoughts, everything with your health, with your stress, but everyone is walking around you breathing just fine. They might feel for you because they care but no one is exactly in your shoes. I'm 23. I can't even lift a gallon water bottle without the urge to pass out walking out the door this morning. I used to have a life once upon a time. I get reminded sometimes when I see my friends since childhood posting about their amazing lives now and I'm so happy for them. They're hiking and traveling and doing all the things I used to do, that I can't do that I dream about. I close my eyes and wish for freedom. I wish I could be healthy again constantly. I wish I could go back and tell everyone it's okay they don't have to worry about me anymore I'm fine. I was raised to be independent, now I can't drive, walk fast, run, jump, bend, exercise without passing out or having the feeling of wanting to. Last Thursday my husband and I were at our friends' house and I started to pass out at the dinner table and tried to fight the feeling (I caught myself by the palms of my hands on the table) my best friend Ash walked me to the couch and gave me some water next thing I know I was out. I was unconscious for the longest I had ever been this time. When I came back this time everything was blurry even though my glasses were still on, I couldn't recognize anymore or hear anything anyone was saying because it was all too muffled sounding. I was totally disoriented I didn't know where I was, what had happened, or what was going on. Another couple of minutes passed and my vision and hearing returned to normal and I was once again lucid. That has never happened to me after fainting before. My cardiologist cancelled on Friday because she had an emergency Save a Heart case and I was supposed to get the results of my Echo, and Tilt Table Test. She thinks I have POTS. So does my Neurologist. I'm just ready to find out what the hell is wrong so I can get on with a treatment plan I'm tired of living like this. #Fainting #POTS #PosturalOrthostaticTachycardiaSyndrome #dizzy #lightheaded #IIH #IntracranialHypertension #Migraine #CheckInWithMe #Depression #Anxiety

26 reactions 9 comments

A Hard Day's Night

Does your illness whatever it is just get you in the worst mood some days? Like you just can't shake it? I try so hard to be positive, and not be hard on myself about not being how I used to be before this but today's just one of those days. And to be to honest, it sucks. I'm just trying the best I can. It's been 2 years I feel like I should be used to it by now but I'm not. I keep finding myself mourning the life I used to have, how healthy I used to be. It's an adjustment just one hell of one. Thanks for coming to my Ted Talks lol. #IIH #iihwarrior #IntracranialHypertension #PosturalOrthostaticTachycardiaSyndrome #POTS #Headache #Migraine #CheckInWithMe #TheMighty #Fainting #Anxiety #Depression #ADHD #TheBeatles

41 reactions 11 comments


Hey everyone sorry I've been MIA for the past few months! I had to factory reset my phone due to glitches and it uninstalled the the app I didn't realize it until recently I'm so sorry. I kept wondering why I wasn't getting notifications lol🤦🏽‍♀️ I'm still working full time to the best of my ability (still missing time/days for appointments and occasionally from fainting spells) but now I'm also taking a Medical Coding and Billing Course online full time as well. I'm now seeing a new Neurologist who is great and has me on DIAMOX in the AM and afternoon and Topamax at night which really helps with the pain of IIH. It's still there but not as bad. Smoking helps too. I'm now also seeing a Cardiologist and getting tested for POTS and to see if I have any other cardiac conditions that may have been passed down. I find out the results of all my Cardiac tests next week. 🤞🏽 I found out recently that lifting my left arm (where I previously had my Nexplanon Implant) is causing me to get short of breath and lightheaded as well so my Cardiologist seems to think there may be a blockage in one of my arteries as well. I get the results of my CTA Angiogram and Echocardiogram next Friday. I'm just ready for answers at this point. Despite all this I'm still doing good at work, and have an A in school and am currently the top of my class. I don't know what I'd do without my Husband, and my best friend helping me get through this. I also think God and my Abuelos(grandparents) are looking out for me from up there giving me strength when I need it to get through this. Thank you all so much for the kind comments and support. Keep fighting. #IntracranialHypertension #IIH #PosturalOrthostaticTachycardiaSyndrome #POTS #CheckInWithMe #Anxiety #Depression

4 reactions 1 comment

I’m new here!

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

11 reactions 7 comments

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

38 reactions 20 comments

I’m new here!

Hi, my name is lilibetayres. I'm here because I would like to know more about my condition.

#MightyTogether #IntracranialHypertension #BenignIntracranialHypertension

2 reactions

I'm new here!

Hi, my name is merrilljima. I'm here because almost ready for tranverse sinus stent for intercranial hypertension

#MightyTogether #IntracranialHypertension