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
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7 comments
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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16 comments
Hi, my name is lilibetayres. I'm here because I would like to know more about my condition.
#MightyTogether #IntracranialHypertension #BenignIntracranialHypertension
2 reactions Hi, my name is merrilljima. I'm here because almost ready for tranverse sinus stent for intercranial hypertension
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
Hi, my name is blujaybexx. I'm here because everyday is a painful battle but I fight it for myself and my loved ones.
#MightyTogether #Anxiety #Depression #Migraine #PTSD #ADHD #IntracranialHypertension #HidradenitisSuppurativa #Asthma #excoriation(Skin-Picking)Disorder #Grief
Hi, my name is klafavor. I’m new to The Mighty and look forward to sharing my story.
Hi, my name is Nesta. I’m new to The Mighty and look forward to sharing my story.
Hi, my name is Carrie_Parsons. I’m new to The Mighty and look forward to sharing my story.
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