iihwarrior

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

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

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

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

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

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