Idiopathic Intracranial Hypertension

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

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!
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

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

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

#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!