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Thread: Low vs High CSF Pressure

  1. #1
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    Default Low vs High CSF Pressure

    I am interested in advice, thoughts etc. about my situation. Sorry for the length of this post.

    My headaches began last December. Shortly after that I started experiencing tinnitus. The severity of the HAs and tinnitus increased greatly over the next few months. After brain and spine MRIs and numerous consultations with various doctors, a neuroradiologist performed a CT Myelogram and saw evidence of a CSF leak on delayed images. There was other evidence that my headaches have been low pressure headaches resulting from a CSF leak, I was getting significant relief from the headaches while horizontal. The neuroradiologist did a 10 cc blood patch procedure. No improvement. A month later he did a second blood patch, this time higher volume, 20 ccs. Still no improvement. He and I had conferred with Dr. Linda Gray-Leithe at Duke before and after the second blood patch. So I made an appointment to have her do the next procedure. I went to Duke for the procedure in September. Dr. Gray reviewed my history and the images from the CT Myelo and brain and spine MRIs and advised that she did not see evidence of a CSF leak. She did a lumbar puncture and found that my opening CSF pressure was 25.5, which she said was on the high side rather than low. Dr. Gray did not recommend doing another CT Myelo or a blood patch. She said that it is likely I am suffering from intracranial hypertension, rather than intracranial hypotension from a CSF leak. Dr. Gray prescribed Lasix and a weight loss program. She prescribed Lasix instead of Diamox, the typical med prescribed for high pressure, because Diamox has side effects similar to Topamax and when I was on Topamax I experienced horrible sensations, “electrified head” like getting numerous electrostatic shocks.

    I have been taking Lasix since then and have been dieting and regularly exercising. My headaches and tinnitus have fluctuated greatly, day to day, hour to hour and even minute to minute. The first couple of weeks after my lumbar puncture with Dr. Gray I felt some improvement. But since early October I have had more days in which the headaches and tinnitus have been severe, some days excruciating.

    I reported Dr. Gray’s findings and advice to the neuroradiologist that did the CT Myelo and blood patch procedures and to my other doctors. The neuroradiologist and neurologist believe that the diagnosis is unclear. They consider 25.5 as borderline between normal and high. I have read that 20 to 25 is a gray area between normal and high. They also focus on the fact that I get some relief from the headaches (but not the tinnitus) when I am horizontal and that is consistent with low pressure not high.

    I have an appointment with my neurologist later this week. At my prior appointment, he suggested that another lumbar puncture be done to measure my CSF pressure, which will provide another data point. But he pointed out that CSF pressure can vary during the day as well as from day to day. If I understood him correctly, the measurement would be useful if the pressure is definitely high, at least 28-30, or definitely low, below 6-8.

    So it is unclear to me whether I have high pressure HAs, low pressure HAs from a CSF leak or something else.

    Has anyone had a similar situation?

    I welcome your comments . . .

  2. #2
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    Did your brain MRI show any evidence of low or high pressure? I know the topiramate made you feel awful but did the headaches themselves get any better or did they worsen? If the headaches improved that would argue for high pressure. Have you had anyone look in your eyes for evidence of high pressure (papilledema)?

    It's interesting that the LP gave you a couple of weeks relief. Often people with underlying high pressure will improve temporarily with a LP.

    I don't mean to pry but you mention being overweight. Females especially with moderate or more excessive weight are prone to a condition called "peudotumour cerebri". You can wiki it for some more info.

    Good luck!
    Last edited by xtcds1; 11-02-2011 at 05:52 AM.

  3. #3
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    Default Low vs High CSF Pressure

    Response to your questions and a few additional comments:

    Did your brain MRI show any evidence of low or high pressure?

    My neurologist and neuroradiologist here said that they saw mild or low level "enhancement" on the brain MRI. They indicated that that was evidence of low pressure and a CSF leak.

    I know the topiramate made you feel awful but did the headaches themselves get any better or did they worsen?

    I had a couple of kinds of headaches in the first half of 2001, which was before my CT Myelo and blood patch procedures : (1) stabbing "ice pick" headaches; and (2) headaches that felt like my brain was being squeezed or crushed in a vice. The topiramate helped somewhat with the stabbing, ice pick headaches. I don't feel it helped with the squeezing headaches. I understand that topiramate is sometimes prescribed for high pressure headaches, but Diamox and Lasix are more commonly prescribed.

    Have you had anyone look in your eyes for evidence of high pressure (papilledema)?

    Yes. I have had an eye exam by an opthalmologist. So far no papilledema, which (as I understand it) is optic nerve damage. However, sometime this summer I started getting floaters in one of my eyes.

    It's interesting that the LP gave you a couple of weeks relief. Often people with underlying high pressure will improve temporarily with a LP.

    It was a lessening of the headaches for some period of time on a number of days for a couple of weeks. A few additional facts: After Dr. Gray measured the CSF pressure, she added synthetic CSF to see how I felt and then drained/collected 20 cc's of CSF. I felt little difference either way. She advised that the reduction in CSF would have an effect for hours, not days or weeks because the body quickly produces and continuously replenishes CSF. As I understand it, if CSF is leaking, there is a deficit even with the continual production; and if there is high CSF pressure, something in the system is impeding the drainage/reabsorption of CSF. I neglected to mention that I had horrendous headaches and tinnitus on the third and fourth days after the lumbar puncture. I feel this was a reaction to the trauma that goes with a lumbar puncture or blood patch procedure. I had a similar experience with my second blood patch procedure.

    I don't mean to pry but you mention being overweight. Females especially with moderate or more excessive weight are prone to a condition called "peudotumour cerebri". You can wiki it for some more info.

    My understanding is that "intracranial hypertension" and "pseudotumor cerebri" are different terms for the same condition. I have read the Wiki article and others. The primary demographic is obese females from 20-45 years of age. Of note is that intracranial hypertension (high pressure) and intracranial hypotension (low pressure) present with very similar symptoms - - horrible headaches. It has been reported that a majority of those with intracranial hypertension have pulsatile tinnitus. I think that many with intracranial hypotension also have tinnitus.


    Thank you.

  4. #4

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    Hi - Sorry this is so confusing. You are definitely not the first person that posted on these forums with similar doubt. Do you still get some headache relief by lying flat? Do you get the same relief if you just sit up still (or reclining slightly)? When my son leaked - it was flat lying with face staring right at the ceiling that helped him. He also had high pressure headaches after he was sealed. Lying down made things worse for him and sitting still helped. Then, he also had some ambigious headaches which may have been due to inflammation and for these being still (either lying or sitting) helped the headache. He did get relief from these inflammation headaches by taking the combination of singulair (10mg) and doxycyline (200 mg) daily for about 8 months. This is normally tried for patients with New Daily Persistent Headache (NDPH) and is a simple enough combination of drugs. My son had releif with this combinatio of medication within just 2 days ... but it takes a bit longer for most patients.
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  5. #5
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    It is very confusing. I still get some relief from the headaches when lying flat and occasionally I get relief when reclining slightly. I have not heard of New Daily Persistent Headache (NDPH) so I am going to go online and find out about it. I will also ask my neurologist about it and the two meds that you identified that gave your son relief. Thank you.

  6. #6
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    Jeanne --

    First of all, I sincerely have to commend you on still posting on this site and giving all of us support and information! I am so happy Robby has gotten relief, after all that boy went thru. If I recall, it was Dr. Newman who put him on that combination, right? Maybe it broke an inflammation cycle - who knows? We are all experimenting it seems, as are the doctors.

    I mentioned those meds to my neuro, and he was confused as to how that could help. But now that I have a different neuro, I'm going to run it by him!
    Thanks!
    Marianne

  7. #7

    Default Please help me understand

    I'm going threw the same thing. I have been having migraines for the past 4 months and the Drs I am dealing with keep me on topamax and I had my spinal tap yesterday and they hit a nerve while they where doing that and well now I can't move without help. I don't know what's wrong with me. All they said was my opening pressure was a 26-27. That was it. Then they collected what they needed and they where gone.

  8. #8

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    Reading your post is like reading my own history with the exception that I do have papilledema and indications of high pressure on MRI. My headaches always act like low pressure headaches, though. Did you ever figure anything out?

    I found an article that said it's possible to have normal pressure and still have a leak, which could cause a low pressure headache. I have yet to have a blood patch. I'm pretty desperate to feel better. I've been admitted twice in the last week. The first time, they loaded me up with meds to decrease pressure, drained fluid, and then when I didn't improve said it was due to low pressure, and did the opposite. I'm still not better, though. I'm convinced they have no clue.

    Thank you for any help you can lend, and I hope you're feeling better. I saw this is an old post.

    Best,
    Brandi

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