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 . . .
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 . . .
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