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Over the next year, her IH diagnosis was revoked and reinstated twice.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.

8 thoughts on “From Frustration to Foundation: A Story of Hope for a Young Girl Battling Intracranial Hypertension”

  1. Brenda says:

    This sounds EXACTLY like my daughter. She was 17 and 108lbs. Treated for migraine for 9 months and kept getting worse. memory loss blacking out double vision etc. Finally got the dx and had surgery. she is 20 and still hears from drs “you have what?!? who diagnosed you with that?!? you don’t look like a PTC pt” i want to scream sometimes! where can i get a bumper sticker?

  2. Pia says:

    Hi, Brenda —

    Please forgive my late reply…. I just saw this comment tonight. Are you on Facebook? I’d love to connect with you. We’re struggling with the diagnosis again, too, due to a change in my insurance — Kathi had to get all new specialists. So we’re back at square one but ever hopeful.

    Bumper stickers can be ordered via this link: https://members.cafepress.com/products/product_edit_design.aspx?itemno=625452980&side=F We have different styles. 🙂

    Peace,
    Pia

  3. Andrea says:

    My doctor has been treating me for migraines for about a year now I’m almost topped out on my meds and my head pain is still here. It feel like my right wants to pop out. Just keeps writing more pills. But I just keep taking them so I can still be a mom and wife. I want to be able to see my husband and kids. So you do what you have to no matter to pain. Even if you feel like your head is splitting into two.

  4. I was diagnosed with IH when I was 20. It was horrible. The doctors shuffle you around, and yes, the disease is rare enough that most can’t even tell you much about it. I was on all sorts of medicines and diets. This was in 2000. I had no support whatsoever, and one of my doctors treated it like it was nothing. He said “just lose some weight, and keep getting your eyes checked” As if debilitating migraines were not upending my entire life (along with other serious medical issues I have) I had spinal taps done a few times. It’s so frustrating when doctors year you with such carelessness, and most people do not understand what is like to be sick, and so many lack compassion. It’s been a rough road. I feel for you and for everyone that deals with rare diseases and illnesses. We do need to stick together. Thank you do much for sharing your story and raising awareness for IH. At the moment I’m having some terrible issues and extreme financial hardships. Please, if you are able, click on this link and read my story. If you are able to donate, it is so deeply appreciated. Please share the link too. I’m trying to teach as many people as I can. Thank you so much and God Bless. http://Www.gofundme.com/fundkrista

  5. I was diagnosed with IH when I was 20. It was horrible. The doctors shuffle you around, and yes, the disease is rare enough that most can’t even tell you much about it. I was on all sorts of medicines and diets. This was in 2000. I had no support whatsoever, and one of my doctors treated it like it was nothing. He said “just lose some weight, and keep getting your eyes checked” As if debilitating migraines were not upending my entire life (along with other serious medical issues I have) I had spinal taps done a few times. It’s so frustrating when doctors treat you with such carelessness, and most people do not understand what it’s like to be sick, and so many lack compassion. It’s been a rough road. I feel for you and for everyone that deals with rare diseases and illnesses. We do need to stick together. Thank you so much for sharing your story and raising awareness for IH. At the moment I’m having some terrible issues and extreme financial hardships. Please, if you are able, click on this link and read my story. If you are able to donate, it is so deeply appreciated. Please share the link too. I’m trying to reach as many people as I can. Thank you so much and God Bless. http://Www.gofundme.com/fundkrista

  6. Julie Spencer says:

    My heart goes out to Kathi. I am here to tell you that while there is a stereotype for the average person, everyone knows that it doesn’t always follow the stereotype. For instance, I was first diagnosed with IH at the age of 10! The doctors treated it with a spinal tap and steroids. It went away, but now I was 50lbs heavier and the IH returned the following year. After that episode I did not get IH again until I was 17, then again at 21. For me I saw a pattern. IH always returned in November, so every October after that I would put myself on a strict diet. As long as I didn’t gain weight around the holidays it did not return. That is until I was 36. I was at the lowest weight I had been at in many years, but it still returned. Did the normal spinal tap, but it did not go away. Fast forward 12 years, I am still suffering from it. Recently I heard about IH being linked to birth control. 3 months before IH had returned I got the Mirena IUD. If your daughter was 17 when she first got her symptoms, I was wondering if she was on birth control at that time. If she does not fit the “stereotype” that could be the reason. Anyway, I hope my story helps your daughter and best wishes to her, PS – I also found that Motrin 800mg would make my migraines go away. When they stop working, it’s time for another painful spinal tap. Good luck.

  7. Rena says:

    I was diagnosed 3 weeks ago and just a few days ago – I underwent the LP( not much CSF came out).My head is tearing apart , back pain all over, nausea and dizziness.

    I have another appointment coming up Monday – because my symptoms aren’t getting better. I can hardly get up off the bed to eat breakfast or use bathroom. There are good days and bad days. I’m starting to think if I’ll need a service animal to help me on the bad days. Do I speak to my doctor about it? But I heard it can be expensive . Not sure what to do

  8. Mel says:

    Hi, I came across your website when doing research on intercranial hypertension, which my neurologist suspects I have. For the past two years, I’ve been hearing a constant whooshing sound in my right ear that goes in tandem with my heartbeat. The otolaryngologist found nothing wrong with my ears and my MRIs then showed nothing wrong. My most recent MRI however indicated that there is some signs of IH and I’ve been scheduled for a lumbar puncture. Like your daughter, I do not fit the typical profile of someone with IH – I’m not in my forties and I only weigh 100 pounds! I hope I’ll be able to get a definitive diagnosis for the whooshing in my ears. Hope your daughter has been coping well with her condition too!

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