Idiopathic Intracranial Hypertension

Join the Conversation on
Idiopathic Intracranial Hypertension
1.6K people
0 stories
226 posts
  • About Idiopathic Intracranial Hypertension
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Idiopathic Intracranial Hypertension
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Symptoms Worsening #RareDisease #TheMighty #MightyTogether #IIH #IdiopathicIntracranialHypertension #Migraine #IntracranialHypertension

    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

    Post

    Firstly, hi, secondly, does anyone have a wired smell constantly in their nose?

    Hi!
    I got diagnosed 3 weeks ago, had a lumbar puncture and started on Acetazolomide which was awful, made me faint and I could hardly move! (I'm now off this and hoping there's another option before a shunt!)

    Since having the spinal tap I've had a weird smell in my nose constantly, like burning rubber and smoky.
    Has anyone else had anything similar?

    Also if anyone has any tips for the bad days, please help!
    Thanks :)

    #IdiopathicIntracranialHypertension

    Post

    IIH

    Anyone on here suffer with iih too? Would be really cool to have people who actually understand what i go through everyday :)

    #IIH #ChronicIlless #chronicallyill #ChronicMigraines #IdiopathicIntracranialHypertension #ChronicFatigue #MentalHealth #MentalIllness

    Post

    The grief of chronic illness

    Today I cleaned out my bedroom closet, something I had been putting off for about 19 months. I kept putting it off because I was holding out hope that maybe my health would change and I might be able to do some of the things I once did.

    Acceptance of my limitations is hard for me and I find myself grieving my old self more often. It’s not like I have ever been particularly “well” but I was somewhat functional, much more than I am now. So, back to my closet. I cried. Not for the actual clothes, shoes, or objects themselves but for the memories (I have an eidetic memory) I associate with each item. I cried because with each thing I took out to put into a storage bin I would think of something or someone I loved, I missed. Things I would wear to work, to see family & friends, to go to fun events, even down to a t-shirt I wore to clean the house (who would have thought I’d ever miss that?! Lol). These are all things that seem to be in the past now, things that I miss dreadfully. Now my closet is filled with clothes that can be easily accessible for doctors, nurses, diagnostics, treatments etc. The way I dressed used to be a part of how I expressed myself; it would give me excitement to try new outfits. Now, I feel sad, hopeless, and feel reminders of how uncertain my future is. I’m not ready to fully accept my illness or my limitations but I am trying to be realistic and be patient with myself along my journey. I’ve kept a couple special items in my closet just to stay hopeful but putting my things into storage is a first step for me to be ok with my limitations. When I am ready, I will donate my clothing to a Women’s shelter and the women’s jail in my area that helps inmates transition back to the community. That will be something that I can still give, something that I can still do for others which has been what my entire life has been based upon.

    This post was just a way for me to release my sadness and emotions I face around the losses that come with chronic illness and disability. Maybe others can relate. #ChronicIllness #Disability #Autism #CPTSD #ChronicPain #AutoimmuneDisease #Jointpain #DegenerativeDiscDisease #Fatigue #Gastroparesis #Endometriosis #IdiopathicIntracranialHypertension #Depression

    Post

    Unrully Hair

    #IdiopathicIntracranialHypertension

    Do you know this?
    After an operation you comb your hair over to hide the bold spots and scars?
    I've been doing this for couple of years due to my VP-Shunt needing repairs, adjustments. I've never been brave enough to shave my head (Maybe next time?).

    The other day I did my hair and discovered that a 10cm strand of hair refused to lie flat with all the other long hair in its neighbourhood. I could not understand what was going on...and then it klicked: What joy! I broke out laughing and celebrating that I had totally forgotten about the seemingly obligatory comb-over and the fact that my hair had time to grow so much that a 5cm strand could stick up and out!

    Post
    See full photo

    The picture says it all #CheckInWithMe

    I wish there was more I could say other than I am frustratingly the same. I do everything I can and nothing has changed. IIH is unrelenting and as I’ve said before, it’s basically a waiting game for now. Only the waiting game is not a very fun game. It’s actually quite painful. And exhausting. And lonely.

    The only positive thing I can add is I did purchase this crewneck for myself and I can’t wait to get it. Any Harry Potter fans out there?

    Anyway, I wish I had more to add to this, but I want to say I’m still hopeful for the future. There is hope for remission for me. I’m not going to be stuck at home for the rest of my life, and I truly believe that. It might not be exactly be the timeline I expected, but I believe in the life I’ve been dreaming of.

    #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #ChronicDailyHeadache #ChronicIllness #ChronicFatigue #chronicallyill #chronicallyillteen #chronicallymighty #RareDisease #ChronicallyHopeful #CheckInWithMe #HarryPotter

    Post
    See full photo

    #ChronicIllness really has me like 😔

    Am I alone in this? I try and I try and I try and it’s like I’m not. I don’t know if that makes any sense.

    #iihmemes #IIH #IdiopathicIntracranialHypertension #ChronicDailyHeadache #ChronicIllness #chronicallyill #chronicallyillteen #chronic #ChronicFatigue

    Post
    See full photo

    Been struggling with the pain

    My head pain has been at an 8/10 for a week now, and none of my painkillers do anything anymore. My neurologist has raised my diamox, so now it’s just a painful waiting game for it to work.
    Anyone else had problems like this before?

    #iihmemes #IIH #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #PainKillers #painmeds #AdviceWelcome #Advice #CheckInWithMe #headpain #Headache