Idiopathic Intracranial Hypertension

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 StunningSiren. I've been diagnosed with a few different chronic illness that I want to learn more about.
#MightyTogether #Migraine #Anxiety #Depression #IdiopathicIntracranialHypertension #polycysticovarysyndrome(PCOS)

Hiya,

I'm starting a new job and I already experience a lot of pain so I'm looking for tips and tricks to not feel worsening pain after being on my feet for 12 hours.

I have idiopathic Intracranial hypertension, fibromyalgia, and highly suspected ehlers danlos syndrome. I have already bought compression stockings, a huge water bottle, and a tens machine.

Any tips?

#IdiopathicIntracranialHypertension #Fibromyalgia #EhlersDanlosSyndrome #JointHypermobilitySyndrome #ChronicFatigue #ChronicPain

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

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

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*

#IdiopathicIntracranialHypertension

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