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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

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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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Under Informed

When I was diagnosed with Intercranial Hypertension my Neurologist told me I had Pseudotumor Cerebi, I asked him what it was and he explained, I asked him the risks and he didn't tell me anything except I need to lose weight. I went home and looked it up on my one and found it on the government medical library website, thank God I did. We planned on flying up to see my baby niece and in laws this year, little did I know the risks in flying with Intercranial Hypertension were. Once I saw that I decided I'm never flying again. I've had four spinal taps in the last year and 2 of them failed and caused me severe pain and the wort after effects. Is there anything that alleviates pressure besides a spinal tap? I'm afraid to get one again. I've lost 30 lbs already and still losing but still suffering. Stay strong everyone 💪🏽
#wearethemighty #ChronicPain
#ChronicIllness #RareDisease #IIH #iihwarrior #Migraine #Vertigo #VestibularMigraine #chronicmigraine #IntercranialHypertension #CheckInWithMe #checkupwithme #StayStrong #Pain #chronic #neurology


Sensitivity to Sound

Does anyone else with iih suffer from a bad sensitivity to loud noises? If you do, how do you deal with the pain it causes? Lately loud or high pitched noises or voices have been causing my ears to pop painfully along with head pain. Any advice is appreciated! #IntercranialHypertension #iihwarrior #CheckInWithMe #ChronicPain #Migraine #ChronicMigraineSyndrome

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Where I am right now #CheckInWithMe

I had a lumbar puncture Friday, and while it was a temporary bandaid, my headaches are getting worse again. My blurring vision has started up again, but I have an appointment with my neuro-ophthalmologist tomorrow, so hopefully that goes well. I also don’t want to jinx it, but I’ve finally got a neurologist appointment next Tuesday with a doctor who treats IIH. We’ve been waiting since March, and I’m very grateful it’s happening.

I think I just feel so lost, and like my treatment plan is so up in the air and wishy-washy that I’m just existing. Everything just takes time, and I hate waiting. I think I could use some words of encouragement, if anyone’s got some to spare.

#CheckInWithMe #wordsofwisdom #encouragement #encouragementiswelcome #IIH #iihwarrior #IH #survivingnotthriving #IdiopathicIntracranialHypertension #IntracranialHypertension #checkin #AdviceWelcome #advicewanted

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Does a coloring book count? #TheMightyCraftRoom

I colored and was remotely creative for the first time since my diagnosis in March! I’m so happy I’m able to color in this motivational quotes coloring book without making my symptoms worse! Does a coloring book count as a craft in this group? I sure hope so (I’d like to share more pages as I color them)!

#Color #coloring #coloringbooks #AdultColoringBooks #Bekindtoyourself #Bekind #TheMightyCraftRoom #CraftRoom #mightycraft #Crayola #crayolamarkers #IIH #iihwarrior #IdiopathicIntracranialHypertension #IH

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A Life Update - Where Have I Been #CheckInWithMe

I was going to start this off by apologizing for not posting and for not being as active, but something I say to others and that I believe in very strongly, is that health should come first. And that’s what I had to do for the last week. I took some major steps to (hopefully) sending my health down the right path.

As some of y’all know, my pressure headaches and neck and back pain have been increasing for a short while now. They ended up getting so bad that I couldn’t lay down for very long without the pain getting unbearable (this is a normal symptom of a major high pressure headache). So the Thursday before last I was directly admitted to neurosurgery and plans for a shunt was made.

However, the next morning, they came back to me and said I was a candidate for Venus Sinus Stenting, which is much less invasive and could also help me drain csf fluid from my head. So for the next four days they helped manage my pain, prep me for surgery using specific medications, and introduce me to the team that was going to operate on me.

Tuesday late afternoon, the procedure happened on my right side. I honestly can’t remember all the fancy scientific names, but basically they stuck a small metal tube in a vein in my head to hold it more open and to allow more cerebral spinal fluid to be drained.

As of right now, I am home, still recovering, but excited to see how much this can help me in the long run!

#stent #IIH #iihwarrior #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #CheckInWithMe #LifeUpdate #Hospital #hospitalstay #Surgery #Headache #Operation

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I Graduated!!! #CheckInWithMe

Sorry I’ve been so MIA for the past week but I had my eye surgery and then a week later was able to walk as the Salutatorian at my high school graduation yesterday! I arrived late and left right after I walked due to fatigue but I’m so grateful and so proud of myself for doing it at all. And for, you know, graduating.

In other news, I get to try to come down on the diamox (slowly) and see how I do!

#IH #IIH #IdiopathicIntracranialHypertension #Graduation #HighSchool #iihwarrior #CheckInWithMe #goodnews #goodnewsforonce


I actually have some good news for once! #CheckInWithMe

So last Thursday was my first appointment with a new doctor who I see again this Thursday, and the appointment was really emotional.
With almost perfect timing, my college planning counselor calls to let me know I’m graduating as salutatorian of my high school class! It came as a complete shock to me, because I just considered myself lucky that they were letting me graduate at all, due to me missing the majority of the fourth quarter of my senior year.
I feel really proud of myself and the hard work that I did put in, and to top it all off, my best friend is valedictorian! 👩‍🎓
#HighSchool #Graduation #goodnews #proudofme #Proudofmyself #IIH #iihwarrior #CheckInWithMe