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Migraine Comorbidities – Idiopathic Intracranial Hypertension

Idiopathic intracranial hypertension (IIH) is sometimes comorbid with Migraine, which means that they can occur at the same time, but neither causes the other.

In the simplest of terms, IIH, sometimes called pseudotumor cerebri, is a condition in which the body either produces too much cerebrospinal fluid or doesn’t absorb it well. This results in increased cerebrospinal fluid pressure.

In literal terms, pseudotumor cerebri means “false brain tumor.” The name pseudotumor cerebri has been used for this condition because its symptoms mimic those of brain tumors.

It is officially and more accurately called Idiopathic Intracranial Hypertension (IIH). It’s termed “idiopathic” because it’s cause is not truly known. It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain, but the reasons for the buildup or poor absorption aren’t known. The disorder is most common in women between the ages of 20 and 50. Being overweight seems to be a possible contributing factor, but IIH should not be ruled out based only on body weight, age, or gender.

Symptoms of IIH:

  • headache, sometimes daily, sometimes severe, and not relieved by medication
  • hearing loss
  • impaired vision or eventual blindness
  • memory issues
  • Migraine attacks with unidentified triggers
  • nausea
  • pain behind the eyes
  • pulsating intracranial noises
  • shoulder and/or neck pain
  • tinnitus
  • vomiting

Diagnosis of IIH:

The only definitive diagnostic tests for IIH are lumbar puncture (LP) (spinal tap) or epidural or intraventricular pressure monitoring (CSF pressure monitoring). A lumbar puncture is the easier method, with the opening cerebrospinal fluid (CSF) pressure measured when the needle is inserted.

In some patients, swelling of the optic nerve (papilledema) can be observed in a thorough eye exam. However, it is important to note that the absence of papilledema does not rule out IIH. Not all patients with IIH exhibit papilledema. When the LP is performed, it is also essential that the protein level and cell count of the fluid be tested. The presence of protein or elevated white blood cell count indicate can indicate that inflammation or infection could be causing the elevated CSF pressure. The second, more complicated method of diagnosing IIH is intraventricular pressure monitoring (CSF pressure monitoring).

Secondary Intracranial Hypertension:

While IIH is idiopathic in origin, secondary intracranial hypertension always has a cause. Diagnosis of secondary IH is the same as IIH, but secondary IH can be traced back to causes such as other conditions or medications:

  • dural venous sinus thrombosis
  • kidney failure
  • Leukemia
  • Lupus
  • excess Vitamin A
  • growth hormone treatments
  • nasal fluticasone propionate (Flonase)

Treatment:

  • Medications, commonly medications with diuretic actions. (Diamox is a common choice.)
  • Discontinuing medications that can exacerbate the condition. (Includes oral contraceptives and some steroids)
  • Weight loss.
  • When medications fail to control the CSF pressure, therapeutic shunting, which involves surgically inserting a draining tube from the spinal fluid space in the lower spine into the abdominal cavity, may be needed to remove excess fluid and relieve pressure.

Prognosis:

With treatment and regular follow-up with physicians, the prognosis for most patients is excellent. Even if papilledema is not found, regular ophthalmologic exams are required to monitor any changes in vision or the onset of papilledema. In extreme cases, surgery may be needed to remove pressure on the optic nerve. The disorder may cause progressive, permanent visual loss in some patients.

IIH and Migraine:

Even though IIH and Migraine can’t cause each other, IIH can impact Migraines. IIH can cause trigger Migraines. It can also keep Migraine preventives from working properly. If you and your doctor can’t identify the triggers for your Migraines, or you’re experiencing other symptoms of IIH, talk with your doctor about performing a lumbar puncture to check for IIH.

My personal experience with IIH and Migraine:

When I first sought treatment with a Migraine specialist, I was having Migraines five or six days a week. I was keeping a detailed Migraine diary, but could only identify my triggers about 50% of the time, and preventive medications weren’t working. My doctor suggested doing a spinal tap to check for IIH. The opening pressure was above the “normal” range, but he didn’t want to diagnose IIH immediately because there was no way to know if that was really too high for me. While doing the LP, he drew off enough cerebrospinal fluid to put my pressure into normal range. Then he had me go home, continue my diary, and return to see him in three weeks. (It would take far longer than that for the fluid he withdrew to replenish.) During that three-week period, I only had half as many Migraines and was able to identify triggers for all of them. That demonstrated that the opening pressure had been too high for me and I did have IIH. After we consulted with my ophthalmologist (because I have glaucoma), we chose Diamox for treating the IIH. After that, we were able to find an effective preventive regimen for me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

1. National Institute of Neurological Disorders and Stroke. "Pseudotumor Cerebri Information Page." Bethesda. Last updated November 1, 2010. - 2. Intracranial Hypertension Research Foundation. - 3. Bond, DW; Charlton, CPJ; Gregso, RM. "Benign intracranial hypertension secondary to nasal fluticasone propionate." BMJ 2001;322:897.

Comments

  • Tracy_O
    1 year ago

    I was first diagnosed with IIH when I was about 35 and my dr at the time said I didn’t fit any of the “normal” criteria though my opening pressure was high. I was a single mother being treated with spinal taps. When one continued to leak and I could not be upright for more that 15 seconds without vomiting, I refused to have anymore.
    Then 20 years later I had non stop horrible headaches. My pressure was taken and was very high. Again diagnosed with IIH but the normal medications made me sick. Since then I have had other drs tell me that 1) it’s not real, everyone is high when being tested 2) it’s just chronic migraine not IIH…. thankfully my eyes are not being effected. I have had migraines all my life that didn’t feel like these but OK
    What do we do? Thank you for bringing up this thankfully rare condition.
    Tracy

  • Dawn RN
    4 years ago

    Hi Teri!
    I’m just a bit confused about one of your “facts” on this piece. It says that it would take far longer than 3 weeks to replace the CSF that was removed during the tap. Everything I’ve ever heard or read about that states that it’s replaced on average every 8 hours. Can you please clarify?
    Thanks!
    Dawn

  • Tracy_O
    1 year ago

    Any evening or lessening of the pressure helps most patients. A shunt helps by slowly releasing fluid into the abdominal cavity where it is re absorbed. Yes, during a tap they can bring the pressure way down which caused me difficulties. I had to lay down and drink coffee for an hour until it stabilized. Thus proving that I was not a good candidate for a shunt.
    I hope this helped,
    Tracy

  • Jan Piller
    5 years ago

    I mentioned to my doctor that I had heard of migraineurs getting relief from LP but he just seemed to “fluff” it off. I was born with Spina Bifida and have deformed optic nerves (eyesight is 20/600) and every migraine I get pain behind my right eye. (If I don’t have a migraine, I get headaches that come and go all day long) I have pain in my neck and shoulders all the time now (but that might be from the deformities and pinched nerves) and I’ve tinnitus for going on 20 years. About 16 years ago I even got migraines in the back of my head and my eyes would swell shut.I have regular visual field exams also – I’m missing a quarter of my peripheral vision. I would give anything to be rid of these migraines. I think he doesn’t do much for me because I can be treated with Zomig. I don’t like taking it all the time though.

  • Ellen Schnakenberg
    5 years ago

    Jan,

    Please understand that, if a Migraineur has gotten relief from an LP, and a diagnosis of IIH, they are suffering from IIH, not a Migraine attack. It is very commmon for Migraine patients to have multiple headache disorders, and certainly worth looking at. There are after all, over 300 different headache disorders. Figuring out which one(s) you have can be very, super – uber difficult, even for specialists who are used to doing this with patients each and every day.

    Hang in there. You are asking some good questions that your doctor should be talking to you about. If he/she is not, maybe it is time for a new doctor. The fact is, Migraines that are refractory to treatment, and difficult to find triggers, are supposed to be tested with an LP to rule out IIH. This is standard of care and very important. If your doctor doesn’t understand what standard of care should be for headache disorders, I’m very concerned that appropriate treatment is going to be easy to get here. Just a thought.

    ~Ellen

  • Teri-Robert author
    7 years ago

    You’re welcome, Melanie. Wow. That had to be really frightening. Yes, I’d be keeping a careful check on those eyes too. IIH is tough because there aren’t always symptoms to be found in the eyes.

    This isn’t necessarily related to IIH, but you might want to talk with your ophthalmologist about regular visual fields examinations too. Although my intraocular pressures were never high, I developed low tension glaucoma. Thankfully, it was discovered on a visual fields exam. I still lost a lot of vision, but at least it was diagnosed before it was too late to help.

  • melaniegrossi
    7 years ago

    I had a bout of IIH in April of 2010, I thought it was the worst migraine of my life, and went to the ER, I even thought I was having a stroke, my left side was tingling, my balance was off, WAY off, and I had trouble with my vision and hearing.

    I ended up in the hospital for 9 days, my pressure was 3x normal at the first tap, higher the next day and by the 4th day it started to level, they still couldn’t break the migraine and kept me in until it broke. All told it was 17 days of hell.

    I still see an opthamologist every 6 months to check my eye pressure and it’s something my neurologist and PCP take very seriously, I have been lucky not to have had a repeat occurrance, my neuro likes to call it a red herring, but still I worry.

    Thanks for writing the article and shedding some light on something not a lot of people know about, I was lucky in the ER and a doc who had recently done a neuro rotation thought to look for it.

  • Dawn RN
    4 years ago

    I have IIH and I’ve never heard of anyone having a “bout” of IIH that lasts only a few weeks. It’s a lifelong illness, but can have periods of remission, which I happily had for several years until it came back. There is a huge IH community on FB and pretty much everyone is or has gone through hell and back suffering from this chronic illness.

  • Kathy Lowery
    7 years ago

    thank you for posting this. I’m pretty sure I have this even without a test which I don’t think I will have, I’ll just trail the medicine instead if it works then I won’t need one!

  • Tara Lane
    7 years ago

    This is a new one for me. I don’t really have any of the symptoms that would cause me to think I have this condition, except that I do have pressure behind my L eye most of the time with my daily migraines – not so tough to deal with, about a level 3, and I am starting to relate the triggers to food more than anything else so I am getting rid of everything that may cause a migraine. Is this something that should go on my list of things to ask my new migraine specialist when I get an app’t?

  • Kayleen Hilyer
    7 years ago

    I have this as well. My neurosurgeon (who specializes in this) said that I get migraines triggered by this as well as my plain jane migraines. He said you can’t tell which kind of headache it is. I am followed by a neuro- opthalmologist doc. After I described my visual symptoms, he did the exam. He said my my optic nerves were completely normal. He said that after hearing my symptoms he was positive I had papilledema – but I don’t! My doc said that I am one of the fortunate few whose optic nerves aren’t affected. I, too, take Diamox. On my last tap, my opening pressure was pretty low( in comparison to what it used to be). It was borderline high…the doc chose to keep me on Diamox to be on the safe side. I have very strange visual disturbances/symptoms all the time..which no one has an explanation for. But they assure me, my eyes are completely fine.

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