In September 2009, my youngest daughter, Kathi, a normal healthy 17 year old, was struck with a severe headache that would not go away. It was accompanied by dizziness, nausea, vision problems and too many instances of her just randomly toppling over. This went on for two months: in and out of Urgent Care, without a single headache-free moment. Her doctor looked at her symptoms and said that they suggested a brain tumor, but there was no tumor present (thank God!). He ran every test in the book (some more than once), and everything kept coming up normal.
This was a GOOD thing, he said, but it was frustrating because he could not treat her if he did not know the cause of her symptoms. She went into the ER twice that November, and while she was admitted to the hospital for the second time, they ran even more tests. One of those tests was a spinal tap. After the spinal tap, her headache went away for a few hours! From this, her doctors determined that she had pseudotumor cerebri, also known as Intracranial Hypertension (IH). We were so excited when we heard that because we thought, “Finally, we know what she has! Now she can be treated and put this pain behind her!” How wrong we were.
Over the next year, her IH diagnosis was revoked and reinstated twice. She was also taken off her medicine, then prescribed other medicines and then put back on her original medicine. In the meantime, she went to the ER for spinal taps whenever the pain got to be too much to bear. Frustratingly, doctors just could not seem to agree on what she had. Even with the IH diagnosis in her file, they did not always believe she had it because she did not fit the stereotype of “female, fat, and forty” (as one neurosurgeon unceremoniously put it). One ophthalmologist even accused her of being a drug addicted alcoholic with a possible eating disorder rather than acknowledging that she did in fact have IH. We had thought recently that Kathi finally found a medical team that would be able to help her, but once again her diagnosis is being challenged. Our new neuro-ophthalmologist decided she can not have IH because she does not fit the stereotype and has conveyed this to Kathi’s new neurosurgeon so that he now thinks she is having migraines. So we now have another appointment with her neurologist (who does believe her) in order to talk about this new wrinkle of unbelief and see about getting her records and his affirmation of her diagnosis over to the new neurosuregon so we can move forward rather than get stuck on the “it’s migranes” merry-go-round again. It is frustrating that so many doctors do not understand that this disease attacks people regardless of age, gender, race or body type and that we are talking about ONE continuous head pain rather than headaches that come and go.
IH is such a rare disease – one person in 100,000 has it – that many medical professionals are not up to speed on its symptoms and occurrences. So, too often, it is either misdiagnosed as chronic migraines or not diagnosed at all. Left untreated, IH can cause blindness due to the excess pressure on the optic nerves. But there is no cure, and the available treatments are unreliable.
Kathi has been battling her head pain, dizziness, nausea, balance problems and vision issues (black spots, waterfalls, blurriness, etc.) for the past almost three years. She went from an active, always giggling 17 year old, who loved to dance, ride horses and go to amusement parks to a 20 year old, who rarely leaves the house and can not handle lights and noise for more than a couple of hours before her head feels like it is going to explode. She has so many bouts of dizziness and falling over that she raised funds for a Mobility Assistance dog to help her with her balance issues, so she can go to school and one day get a job again. We are happy to report that she has received enough donations for her service dog and the necessary equipment and travel expenses for Handler Training. She’s looking forward to meeting her new companion very soon!
Kathi has been blessed with an online community of IH patients and their families, all of whom provide a network of support and encouragement for her. She has been doing her part to help raise awareness for IH by creating a video channel on YouTube and sharing her story, making a tribute video for the youngest IH sufferers, by making and selling IH Awareness bracelets and keychains and by designing t-shirts and bumper stickers to help spread the word. She even started an IH young adult support group on Facebook. And she wants to do more. She wants to help others who are suffering from this debilitating illness, so she decided to start her own foundation. She says she is blessed to have been so supported and loved that she wants to give back to the IH community and help other patients like herself. Her goals for her foundation are threefold:
1) to raise awareness of IH in the hope of finding a cause and a cure
2) to connect IH families with existing rare disease communities and programs
3) to raise funds to provide grants to patients who need help with IH-related expenses, including surgeries, medicines, service animals and more
I believe God brings the good out of every trial. So while I am frustrated that my daughter was struck by this rare disease, I am proud of her effort and desire to help others, who also suffer with it. I support her every step of the way.