Hi everybody ! My name’s Julie and i’m 28 ; i live in France - so apologies for my english if it seems a little odd sometimes
Here’s my story with iih. It’s a difficult one, as if i’m certainly diagnosed with iih, i’ve got symptoms that doesn’t fit totally with iih, as well as a chronic inflammation syndrome in my blood.
As long as I remember, I always had headache. Since I am about 10 I experienced several treatment for migraine, but never really found one able to relieve my pain. I was used to it.
Three years ago, I started to have bad neck pain and odd feelings in the head, that were in a first time attributed to neuralgia. It felt like lava was burning my head, from the neck to the back of my eyes.
A few weeks later I started to suffer from pain all over my body, in the back, the legs, arms, everywhere in fact. I was directed to a pain clinic where doctors told me I had fibromyalgia. I was also directed to the internal medicine service of my hospital ; they found I had a chronic inflammation in my blood, but were not able to explain it (C-reactive protein around 30 since 3 years at least).
For a year I tried different medications, tried hypnotherapy. Things weren’t really better but I learned to be used to it…
I must mention that I experienced transient visual obscurations, blurred vision that lead me to my ophthalmologist in october 2012. He found I had two papilledema so he directed me to the hospital. I went to the ophthalmologic service and then went back to the internists that followed me yet. I had a lumbar puncture (I was at 30) and a MRI that showed an empty sella syndrome.
So, I was diagnosed with iih and put on Diamox.
Six months later, my papidellema had decreased so we tried to stop Diamox.
But quickly my symptoms increased so I had a new lumbar puncture in July, that was at 33. They put me back on Diamox ; i tried different dosages, from 500 mg to 2g a day.
The summer and autumn went well, I still had headache and body pain but it was manageable.
But during the autumn I had several otitis and severe ear pain and tinitus.
I also have a chronic sinusitis since years that increased during the lasts months.
Finally, I had since february several episode of really severe abdominal pain, that left me totally unable to do anything except crying desperately on my bed till it pass. Only ketoprofen relieves me.
For those recent symptoms, I went to hospital for a week this month. I had a new lumbar puncture (2 in fact, but the first time they tried 3 times without perform it..) : I was at 52 (they measured it when I was sitting on the bed and not in decubitus, I know the pressure is always higher in this posture, but 52 still seems to be very high to me…).
I had a abdominal and thoracic CT angiography for my abdominal pain, but nothing was found.
I still have the chronic inflammation syndrome, but internists still aren’t able to explain it (it doesn’t match with any auto immun disease).
I was put on Lasix (furosemide) 40mg this time, as the Diamox clearly didn’t do his job.
Now I must go back to hospital next monday in order to see ORL specialists for my otitis/sinusitis problems (this week I had an otitis AND a tonsillitis in the same time !). I will also have a new angio MRI to see if there is something that could explain why the iih is resistant to treatments.
I don’t feel like Lasix is doing well, as I have really bad headaches and tinnitus.
I clearly forgot a whole bunch of symptoms and facts but it’s a beginning
I am truly desperate by now. I’m in pain, almost every day. I don’t know if i have just iih or iih and something else.
I know we are all dealing with incertitude. But by this time i am truly lost and exhausted.
Please, if you have some tips or just a kind word of support, I will be very glad.
If you have experienced atypic symptoms such as myself, please tell me. Maybe someone here has a similar journey through iih, and can help me to cope with it, or tell me how it went for her/him ?
Thank you very much for reading me. I wish all the best for everyone.