In 2019 I randomly started having hemiplegic migraine s and had them for 40 days straight-my neurologist dx me w HI after I end Ed Up in er and they did spinal tap and mri . The past week I started having major symptoms again and I wanted to ask him about Chiari. Here is how it usually go’s: neck stiffens, then eye zig zags swirls , phantom smell, left side face droop, aphasia, then the screaming pain behind my right eye. And it’s like a throbbing cymbal inside my head. Severe dizziness especially when eyes closed or walking, so falls happing. Nausea and vomiting. This time it slowly crept up, I thought I just pinched a nerve in my neck cuz I can hardly turn left, went to chyro and as soon as he adjusted I got a Sever headache and dizzy, then it’s just gotten worse ever since. I have all of the above symp except my eyes are just swollen and pulsing, and my head pain is less intense. Oh and severe neuropathy. Any one agree it’s JUST IH or could I possibly have chiari ? #IntercranialHypertension #ChiariMalformation #HemiplegicMigraine #spinaltap #neurologist
First Neurophthalmologist appointment next week... any advice?
So I have my first appointment with a neuropthemolegist (still can’t spell sorry) next Thursday and I’m not sure what to expect. I’m quite nervous and would love to hear about other’s experiences to quell some of my anxiety. The one thing I have heard about this particular doctor is that she is very thorough and the appointment will probably take like 3 hours so... any advice is greatly appreciated!
#IIH #iihwarrior #IdiopathicIntracranialHypertension #BenignIntracranialHypertension #PseudotumorCerebri #IntercranialHypertension #doctorsappointment #Advice #AdviceWelcome
My #IIH Diagnosis Story
Before recently, I’ve never been someone who had any physical health issues. I’ve dealt with my fair share of mental health struggles, but I have a great support system and honestly was super excited to finish out high school, become a camp counselor this summer, and move on into college.
Throughout March I started to have upper back and neck pain as well as double vision. I, thinking it would just go away (honestly I- why did I think that?!?), just kept living my life in a pandemic as best I could. But the pain and the double vision got worse and more frequent.
My family and I first tried a chiropractor for the back and neck pain, and she said that it was due to a concussion I had last year and that a lot of bones in my spinal column were out of alignment. She also said that this was causeing the double vision.
It was when my eye physically shifted over that we went to an ophthalmologist who within the first ten minutes said I was going to need to go to the er the same day. The appointment was at 3pm, and we left the ER at 2am with a diagnosis. This, naturally, was after a lumbar puncture that took three attempts and an opening pressure of over 55.
Did I mention this was two days after my 18th birthday?!? Anyway, they gave me a prescription for a pretty average dose of diamox and sent me on my merry way and I thought that would be the end of it. Over the next few days, the pain and double vision got better, then increasingly worse.
I was back in the ER three days later, and was admitted for 5 days to the hospital. During that time, I had two more lumbar punctures (opening pressure 56 and 20, respectively) and my diamox was increased to 4000 mg a day.
I left the hospital on April 2 and I have not been able to return to normal activities due to symptoms and medication side effects. I am not in school, not creating videos for my YouTube channel, not working, and pretty bummed out about it, honestly. I’m exhausted 25/8 and so my bed has become my favorite place (and the place I am writing this from).
I do see the next level of specialist on May 6th, so hopeful that they can lower my dosage then!🤞
I wanted to share all this because I was curious who else out there is like me, and would love to get to know you!
#IIH #iihwarrior #RareDisease #IntercranialHypertension #idiopathicintercrainialhypotension #Diagnosis #mystory
Anyone want to be my friend?
Hoo boy. Anyone who read my last personal post knows that I'm struggling with my body image. Lately, it's getting worst. Though I'm no longer gaining weight, my normally 140 lb, 5'2.5" self is stuck at 175lbs. I gained 20lbs in graduate school and 20lbs due to Celexa, then lost five switching to Cymbalta. Having #EhlersDanlosSyndrome and all the extra diagnoses that come with it make it hard to exercise, as well as it is difficult to find time to outside of #PhysicalTherapy and working full-time. Not to mention, my home is not a place I'm safe in, personally, due to my closeted #LGBTQ identity and #Trauma I've had there.
I just look in the mirror and see my stomach coming over my waist, my thighs overlapping, and stretchmarks racing everywhere and it makes me absolutely disgusted.
What doesn't help is my #BingeEatingDisorder reared its ugly head after I graduated due to needing a sense of control after an outlet away from my family disappeared.
I know things will get better when I move out, I can control my meals and my time as well as be authentic but until then, I'm in constant pain.
How can I look in the mirror and see that I'm at least a little attractive? It really sucks.
#ChronicPain #weightgain #Fatigue #Dysautonomia #IntercranialHypertension #Asthma #AcidReflux #hypermobileehlers-DanlosSyndrome(hEDS) #MentalHealth