Hi all,

I will try to keep this short. I woke up one morning back in August of 2000 with what I later realized was a headache. I was ten years old and starting 5th grade in a couple weeks. My mom had me try the usual over the counter meds and the pediatrician tried one med before sending me to a neurologist. The pediatrician’s reason for sending me on was that, children know what a stomach ache feels like but they never complain of a headache even if they do get one.

The neurologist tried a med for two months then did a CAT scan and eventually attempted a spinal tap. I say attempted because he never even got my back numbed. He did not give me anything to relax me, he just had me curl up in a ball. As he put the needle in I arched my back and screamed, he tore of his gloves and stomped out of the room. I changed neurologists.

The first thing the text neurologist did was a spinal tap under sedation. My pressure was high and he had a diagnosis, pseudotumor cerebri. That was the original name for IIH. He put me on Diamox for the pressure and other meds for the headache. I have a constant headache that never goes away but can change in severity. I no longer remember what it is like not to have a headache, which may be a blessing.
That spring I went to UVA. He did not believe I even had a headache. Then a month later I went to Duke and they suggested doing a series of spinal taps in hopes of getting my body to readjust to a lower level. It did not work. Oh, and I forgot to mention I get the post LP headache for a week after each one. That fall, a little over a year after it started, I went to Mayo Clinic. All they were able to tell us was that the arachnoid villi at the top of my brain were not absorbing as much spinal fluid as the ones on the sides. They said the damage could have been caused by a virus or a clot or something else.

After that we started questioning a shunt. I went back to Duke and had intracranial pressure monitoring done for three days to see if a shunt would work. They found out that my pressure varies too much for a shunt to help.

At that point it became a quest to treat the worst symptom, the headache. I have been blessed never to have real vision problems. I also changed neurologists. Now I am with a neurologist that is a headache specialist. When the headache gets really bad, to the point I cannot function, I am hospitalized to bring the pain level down. At the beginning the pain level was a baseline 5. Puberty made it worse, 6. This past year it has become much worse and is finally settling to a 7-8. As long as my headache stays at a constant level I can adjust and cope, but if it fluctuates I struggle.

I have learned to cope though. I wanted a life so I had to learn to live with the pain. In order to study, I am a biology major, I have learned to have reruns of my favorite tv shows on to distract me so I can focus on my work and not the pain. I take a stress ball or some other such thing to play with during classes so I have something to focus the pain on. Lots of odd things I picked up over the years.

Believe it or not this is the bare bones skeleton of my eleven year story. Thanks for sticking with me! Do not hesitate to ask questions, please.
Liz

Hi Liz

A very warm to the group. I am so pleased you found us, and for a young girl to go through all that and yet still have the determination to go on to be a biology major, is the most inspiring and heartwarming story I've ever read. You should be very proud of yourself Liz, because although you may not know it, you are quite an inspiration, especially to children who have been diagnosed with IIH. It will give them some hope.

As an adult, I know how frightening and painful the tests can be, infact the whol proceess, and on top of the symptoms, but as a child having to go through them, I can only imagine how scary it was for you, and how worrying for your parents.

Has surgery ever been suggested or have you preferred not to go down that route? I can understand wanting to put it off for as long as you can, I myself put it off for 12 years. Looking back knowing how much better having a shunt has been, I wish I hadn't.

I never thought of using a stress ball that way, it's genius and you should recommend it in the coping methods to other members. I shall be getting one myself now! I would love to know what other tips you have based on your experience, I'm sure the other members would find them very helpful too.

You're an asset to this community and again for joining us.

Thanks,
We talked about surgery a few times. That is why we did the intracranial pressure monitoring for three days. A neurosurgeon drilled a hole in my skull and put in a device that gave them a constant reading of what my pressure was. From that they were able to conclude that my pressure varied far too much and too frequently for a shunt to be effective. It would go from 25 to 40 back to 30 within a minute.
The next time we talked about a shunt was probably five years later after I had switched neurologists because my old one could not figure out what else to try. The next neurologist, also my current one, is a headache specialist, one of the top five in the US. He informed us that he would almost never do a shunt. They have for more problems than they are worth.
I am glad yours has helped you!
What I have found out is that unless the pressure is causing a problem, like vision loss, it is okay for it to be a little high, thirties or low forties. My neurologist took me off Diamox for a couple years even though my pressure was still high. He put me back on it when the headache became much worse.

I'm so pleased you have managed to tolerate your IIH, and without surgery too. It sounds like the Neurologist you have now is very knowledgable and that being a headache specialist gives you more faith in him and his treatment. the important thing is for you to be happy with your Neurologist and your treatment, that's half the battle I think.