Idiopathic Intracranial Hypertension

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Idiopathic Intracranial Hypertension
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    What's New in Idiopathic Intracranial Hypertension
    Community Voices

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

    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 :)


    Community Voices

    Coping With Doctors Telling You You're 'Fine' With Chronic Illness

    “You’re fine. You should be fine.” These are the words that my new primary care provider said to me after I had dragged myself into her exam room hunched over in pain, feeling like the world was spinning around me. I had given her a laundry list of symptoms that I was experiencing, and she had a “logical” explanation for all of them. “I feel foggy all the time, like I’m here, but I’m not here.” “Oh, you’re just tired. You should get more rest,” she said. “I always get these headaches, and it feels like something is pressing behind my eyes.” “That’s just your sinuses — take some medicine for that,” she replied. “I’m always out of breath.” “You have asthma, so I’ll prescribe you an inhaler,” she claimed. “I feel like my vision is blurry even though it was fine a month or so ago.” “Maybe you need some new glasses,” my doctor said. My doctor thought that she had all the answers, but she blatantly dismissed all of my concerns. I walked out of her office feeling alone and defeated, but I took her advice and made an appointment to see an optometrist. I’d recalled that my kids’ eye doctor had these cool machines that took pictures of the insides of their eyes, so I made an appointment with their optometry practice. The day I walked in, I was greeted with kind smiles and warm words. “If nothing else comes out of this, at least I’ve found an office with kind people,” I thought. The doctor introduced himself, walked me to the back, and started to ask me a few routine questions. As we neared what we thought would be the end of my appointment, he said that he wanted to check the pressure behind my eyes. He turned to me and said in a gentle tone, “I’m glad that you came in.” My heart sank. I had no clue as to what could be going on. Why was my body rebelling against me all of a sudden? He said, “I think that you have something called pseudotumor cerebri. You have a lot of pressure behind your eyes, and you have swollen blood vessels. Most of them are bleeding. I want to take some pictures, do a field vision test, and refer you to a neurologist.” I left the optometrist’s office confused. How could this have happened? What would happen to me? Would I be able to care for my family? However, I was extremely grateful that we were starting to get to the bottom of what had been causing me so much pain and draining my body and mind for the last few months. I sat in my car optimistic about my recovery because according to the doctor, I would only have to take medication and then I’d be “fine.” Here we go with that word “fine” again. Of course, nothing was “fine.” It was just the beginning of an even longer journey. Listen to your bodies, folks. It’s unfortunate, but some health care professionals just want to put a band-aid on you and walk you out the door. If you aren’t getting the answers that you need, find someone else and advocate for yourself until a professional takes notice and does something to truly help you. This may not be easy, but it is necessary. Here’s hoping that you will be better than just “fine.”

    Community Voices

    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

    9 people are talking about this
    Community Voices

    Unrully Hair


    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!

    Community Voices

    The picture says it all #CheckInWithMe

    <p>The picture says it all <a class="tm-topic-link mighty-topic" title="#CheckInWithMe: Give and get support here." href="/topic/checkinwithme/" data-id="5b8805a6f1484800aed7723f" data-name="#CheckInWithMe: Give and get support here." aria-label="hashtag #CheckInWithMe: Give and get support here.">#CheckInWithMe</a> </p>
    2 people are talking about this
    Community Voices

    #ChronicIllness really has me like 😔

    <p><a class="tm-topic-link mighty-topic" title="Chronic Illness" href="/topic/chronic-illness/" data-id="5b23ce6f00553f33fe98fe39" data-name="Chronic Illness" aria-label="hashtag Chronic Illness">#ChronicIllness</a>  really has me like 😔</p>
    4 people are talking about this
    Community Voices

    Been struggling with the pain

    <p>Been struggling with the pain</p>
    3 people are talking about this
    Community Voices
    Community Voices

    What do you do to get through?

    <p>What do you do to get through?</p>