My journey with IIH has been and continues to be painful, nerve-wracking, and exhausting. IIH has taught me gratitude and how to enjoy the moment. You always think life just flows along, but suddenly you`re ripped out of your normal routine. I always said I`d do this or that later. Wrong, do it now, because eventually it`s to late. For me, some things are to late, unfortunately.
My name is Doris and I come from Austria.
My journey with IIH began in December 2024. Shortly before, I had received an influenza vaccination. In December 2024, the unbearable headaches began, accompanied by episodes of dizziness, nausea, and circulatory problems.
At the end of December, I went to the hospital emergency department because I felt extremely unwell. After blood tests were taken, I was sent home with a prescription for pain medication for headaches.
In January 2025, the pain became increasingly severe and began radiating into my back; the dizziness did not improve either. After paresis in my hands was detected, I was admitted to hospital as an inpatient. The usual examinations were carried out, and it was there that the double vision appeared for the first time. At that time, no cause could be identified, and therefore sufficient pain medication was administered. To clarify whether viruses might be the cause, a lumbar punctureA procedure where a needle is placed in the lower part of the spine (the lumbar spine) to access cerebrospinal fluid. Click the term to read more was performed. Afterwards, I felt dramatically better. However, three days later, everything was as it had been before. When I asked why I had felt so much better after the puncture and why that was no longer the case, the doctor told me that her colleague had healing hands and sent me home.
Naturally, the symptoms remained unchanged. On 6 February 2025, I suffered a seizure with respiratory arrest and was clinically dead. After 24 hours in intensive care, I was discharged home with the diagnosis “psychosomatic.”
Subsequently, my general practitioner referred me to a convent hospital with a neurology department. Both the doctors and the nurses were very kind and dedicated. Another lumbar puncture was performed, this time with pressure measurement. The opening pressure was 38. The pressure was reduced immediately and medication with Diamox was initiated.
At that point, I already had a restricted visual field and double vision.
Until August 2025, the treatment with Diamox went relatively well. However, I was unable to manage altitude gains exceeding 500 metres, which I still cannot do to this day. In August, the symptoms returned and I lost my sense of smell and taste. I am now only able to identify 2 out of 12 items in smell and taste testing. At the beginning of October, I was admitted to hospital again and underwent two further lumbar punctures. Diamox was increased to 1000 mg per day, and Lasix 40 mg was added.
Among the symptoms, this exhaustion, the headaches, the double vision, this tingling in the extremities—which feels like thousands of needles—are dreadful, not to mention the tinnitus.
Watching television still causes me problems. My brain can`t process the moving images and sound. Speech problems are also an issue. Sometimes I speak words, but others can`t understand me, even though it sounds normal to me. Or I can`t name things.
What I find particularly distressing are these episodes. I cannot say when they will occur or how intense they will be, but a jolt runs through my entire body, very painful; during the first seconds everything goes dark, everything cramps up, my hands and feet act on their own, and I cannot breathe. After approximately one to one and a half minutes, it is over, but my body is completely exhausted.
Koprostatse has now been diagnosed as a result oft he diureticSomething that increases the production of urine Click the term to read more medication. Let`s see how this problem is solved.
Since January 2026, I have been under care at the IIH outpatient clinic in Vienna. For symptomatic treatment, a three-month course of Ajovy was initiated. In terms of pain, I do feel that it has made a difference. The pain level has decreased. Furthermore, I have read about treatment with GLP-1 receptor agonists. I will raise this at my next appointment in April.
It is a daily struggle, and every day is different, but one must not abandon positive thinking. I have found my strength in my family and in my faith. Even if not everything is possible anymore as one would wish, there is still so much positivity in life. One must not give up. I trust in research; one day, something groundbreaking will be discovered.
My thoughts are with all those who share the same fate. I wish you a lot of strength and loving people who are there for you.
To all those who are walking the same difficult and arduous path: do not give up. It is always worth fighting.
