Last visit, I tried to say 'IHS' for International Headache Society. Instead, I said 'IIH' which is an acronym for Idiopathic Intracranial Hypertension that is also known as PTC, Psudotumor Ceribri. IIH is an increased level of spinal fluid which can contribute to Migraines. I quickly recovered from this Freudian slip, but it was interesting to see her reaction when she heard 'IIH'. First of all, it didn't belong in my sentence. Second of all, I could see that she knew it was on my mind especially by the way she tilted her head and the face she made. It wasn't necessarily in a bad way, just interesting to note.
I am always fearful of 'contracting' every aliment/trigger I read about, but I don't want to bypass a possible diagnosis that could help me either. Even though I am in the middle of the elimination diet, I still feel I am getting too many Migraines. Although they have gone down, I don't think it's enough and will still continue with the elimination diet as I feel I am finding 'good' foods on it which will help me in the long run.
While I have a hard time believing I have IIH, you never know until you take the test. The only definitive way to test for IIH is to have a lumbar puncture (LP) to test your opening spinal fluid pressure. I have read different articles written by Teri Robert about IIH that explain everything in an easy to read and easy to understand format: Headache Attributed to Idiopathic Intracranial Hypertension - The Basics and Idiopathic Intracranial Hypertension (IIH) - The Basics.
How many symptoms of IIH do you need to show before you really should consider being tested? Here are some of the symptoms of IIH:
> headache, sometimes daily, sometimes severe, not relieved by medication
> hearing loss
> impaired vision or eventual blindness
> memory problems
> Migraine attacks with unexplained triggers
> nausea
> pain behind the eyes
> pulsating intracranial noises
> shoulder and/or neck pain
> tinnitus
> vomiting
I would say I have six of the eleven IIH symptoms. Some doctors will say that you must have papilledema, which is the swelling of the optic nerve, in order to have IIH, but that's just not true. I have heard of at least three people who have had IIH without having papilledema. This is where I think my doctor is going to make me see a neuro ophthalmologist to test for papilledema anyway.
I'm not sure why I want to have another test that really has no bearing on whether or not you have IIH. I'm sure it would be nice to know if I have papilledema or not, but my eye doctor takes pictures of my optic nerve during every visit already. He also knows I have Migraines as I remind him every time I go. I guess I'm just not sure I want to spend the money on a neuro ophthalmologist if it really isn't worth it. What do you think?
I didn't bring up IIH on the last visit after I slipped and said it. I ran out of time and actually went way over my time with that visit plus I really wasn't ready to discuss it. I don't have every symptom for IIH, but I don't think it would hurt to be tested for IIH to at least rule it out as a contributory factor. I sense that she is going to be a little reluctant to go this route, but I am getting more ready to at least cross it off my list as something I've tried. The elimination diet has reduced some of my Migraines, but it really hasn't gotten rid of some of the everyday nuances I still experience.
If you had a lumbar puncture to test for IIH, how many symptoms did you exhibit before you had the test done? Were you diagnosed with IIH? Were you tested for papilledema? If you had a lumbar puncture, what tests and preparation did you need to do before you had the lumbar puncture done?
5 comments:
Hi, Puppet,
I'm one of those who has IIH but did not hap papilledema. My Migraine specialist didn't have to send me to an ophthalmologist to find out because I see an ophthalmologist on a regular basis anyway for glaucoma.
As for tests or prep for the LP, there really weren't any. It was done with just a local anesthetic, so I just had to be sure that I didn't wear clothing that was tight around my waist or lower back. Dr. Young told me that it was a myth that everyone had to lie flat for a long time after an LP. He said if you're going to get a spinal headache from it, you'll get it regardless of whether you lie flat for 15 minutes or three hours. So, after 15 minutes, a nurse brought me a caffeinated drink and slowly raised the head of my bed. I felt fine, so as soon as I ate some lunch, they let me leave. The Jefferson is eight hours from my home, so Dr. Young did ask me to say in Philly, at a hotel, overnight. That way, if there had been a problem, I could have gone back to the Jefferson ER, and he'd have come in to see me. Felt fine the next morning, so we came home.
Hope this helps!
I had a lumbar puncture done this past August while I was hospitalized for a week for an intractable migraine, dehydration (from vomiting) and hypertension. I suffer with daily headaches with intermittant migraine with aura with little to no relief from meds. Now I get many accompanying symptoms from both...visual disturbance, dizziness, heart beating sounds in my ears, N/V....the works. Interesting thing my doc said to me was that he doubted I would have IIH as I am tall and thin. He said most with those condition are shorter and heavy set....but I had never heard that or read that before. Either way...my LP was normal...but my eye doc has seen irregularities with my optic nerves....so who knows!?!?
I was told that migraineurs can get something called "sterile inflammation" from having too many migraines. They thought for a while that I had that when the Hemicrainia continua was undiagnosed. Similar symptoms to IIH, but relieved by steroids (which did help my pain and probably would not help IIH -therefore the diagnosis)...
Winny....maybe that's my problem! Only thing that gives me relief after a certain time is steroids.
Teri – Thank you for sharing your experience. You’ve given me a lot of good information to help with my doctor’s appointment. It’s nice to know that we don’t have to lie flat for 3 hours; that 15 minutes should be enough time. I’ve heard about one of her patients having to lie down for 2 hours after an LP. I would rather be home as soon as I could than staying at the hospital longer.
Jessica – It is interesting what your doc said to you. In the second linked article, it states ‘IIH should not be ruled out based only on body weight, age, or gender’ because it ‘is most common in women between the ages 20-50 and being overweight seems to be a possible contributing factor’. At least you’ve been able to rule it out using the LP. Thank you for sharing your experience. I hope Winny’s comment can help you too or at least give you another direction to try!
Winny – The information on sterile inflammation is very interesting. I started looking at that a little and will research it some more. Thank you for sharing your knowledge on another new area. Hopefully you’ve been able to help Jessica too!
Post a Comment