I'm a 34 year old female, and I have had subjective unilateral pulsatile tinnitus since 2006. It came on suddenly one day, and hasn't left since. The sound I hear is similar to that of a pregnant woman's ultrasound exam, and is in perfect sync with my pulse. If I press lightly just below my ear on my carotid artery, the sound disappears while holding. I was 27 years old at the time, and with the exception of mild PCOS and some sinus/allergy issues, I was healthy --- normal blood pressure, no evidence of diabetes or anemia, and of average weight. Within a short period of time though the pulsatile tinnitus was then accompanied by intermittent dizziness, headaches, and nausea. Through it all though, I was still consistently deemed to be "healthy" by my doctor.
In the years since the sound first started, I've seen half a dozen specialists (ENT, Cardiologist, Neurologists & GI) and had all of the standard testing (MRI with and without contrast, MRA, doppler of corotid arteries, CT of temporal bone, nuclear stress test, endoscopy, and hearing tests) all without finding any cause for my pulsatile tinnitus. I was diagnosed with acid reflux disease and given Protonix to take twice a day, along with Zantac at each meal. Of course, although the nausea did improve, the pulsatile tinnitus did not. The closest I'd gotten to an explanation was from a cardiologist that believed that it was being caused by a benign cardiac arrhythmia I have that causes me to have a slightly increased heart rate, but I was always skeptical of that being the cause.
The last doctor I saw in trying to get a diagnosis was in July 2008 and he performed an MRA and told me that he didn't find anything, but that I "should be thankful for what it's not". He suggested I try to take a low dose of Effexor XR (an anti-anxiety/anti-depressant medication), because by this point the constant fear of what could possibly be wrong with me had really taken it's toll, and he thought it would help with the pulsatile tinnitus too. At this stage I'd begun to feel as though most doctors didn't even believe that I was actually hearing a noise in my ear at all, I was frustrated and felt defeated, so I took the Effexor XR (lowest dose) and continued to take it for the next 5 years, and it did in fact reduce my anxiety associated with this condition, but didn't touch the pulsatile tinnitus.
Flash foward to January 2014, I had been Googling "pulsatile tinnitus" and came across the contact information for a neuro specialist on a website for people suffering from this condition. This doctor was a short distance from me (in NYC), so I figured that it would be a quick trip for me to go see him, and that I had nothing to lose. I made an appointment, went to see the doctor, and brought him CD's of all my previous imaging tests for him to review. From the moment I sat down and explained to him what I was hearing, and for the first time in this extremely long & exhausting journey, I was finally sitting in front of a doctor who was not only extremely knowledgeable, compassionate, willing to listen to me, but most importantly had heard of this condition! He assured me that the pulsatile tinnitus wasn't a psychological condition, and he reviewed all my imaging tests with me one by one. As he reviewed my MRA and CT images, he also didn't find anything of interest, but then while reviewing my MRI he suspected that I probably had a stenosis of a vein on my left side, but he couldn't confirm it because of the MRI's low image quality (it had been done in 2006). He then sent me for a high resolution MRI with contrast and a MRA, which I performed last Monday.
The doctor called with my results two days later, and the good news is that I don't have a tumor, or an aneursym. What he did find though is bilateral stenosis of two veins (one on each side of my head) and that is what is causing the pulsatile tinnitus in my left ear. He recommended that the next step be to schedule a lumbar puncture to check my CSF pressure, as many people diagnosed with this condition also have Idiopathic Intercranial Hypertension. I recently had my vision checked and there was no sign of papilledema, but from my understanding it is possible to have IIH without it, although it is more rare. I'm hopeful I don't have this condition and can move onto deciding what the next step will be. I'm so thankful that after all of these years to have finally gotten a diagnosis, and not left to feel as though it's all a figment of my imagination.
In the years since the sound first started, I've seen half a dozen specialists (ENT, Cardiologist, Neurologists & GI) and had all of the standard testing (MRI with and without contrast, MRA, doppler of corotid arteries, CT of temporal bone, nuclear stress test, endoscopy, and hearing tests) all without finding any cause for my pulsatile tinnitus. I was diagnosed with acid reflux disease and given Protonix to take twice a day, along with Zantac at each meal. Of course, although the nausea did improve, the pulsatile tinnitus did not. The closest I'd gotten to an explanation was from a cardiologist that believed that it was being caused by a benign cardiac arrhythmia I have that causes me to have a slightly increased heart rate, but I was always skeptical of that being the cause.
The last doctor I saw in trying to get a diagnosis was in July 2008 and he performed an MRA and told me that he didn't find anything, but that I "should be thankful for what it's not". He suggested I try to take a low dose of Effexor XR (an anti-anxiety/anti-depressant medication), because by this point the constant fear of what could possibly be wrong with me had really taken it's toll, and he thought it would help with the pulsatile tinnitus too. At this stage I'd begun to feel as though most doctors didn't even believe that I was actually hearing a noise in my ear at all, I was frustrated and felt defeated, so I took the Effexor XR (lowest dose) and continued to take it for the next 5 years, and it did in fact reduce my anxiety associated with this condition, but didn't touch the pulsatile tinnitus.
Flash foward to January 2014, I had been Googling "pulsatile tinnitus" and came across the contact information for a neuro specialist on a website for people suffering from this condition. This doctor was a short distance from me (in NYC), so I figured that it would be a quick trip for me to go see him, and that I had nothing to lose. I made an appointment, went to see the doctor, and brought him CD's of all my previous imaging tests for him to review. From the moment I sat down and explained to him what I was hearing, and for the first time in this extremely long & exhausting journey, I was finally sitting in front of a doctor who was not only extremely knowledgeable, compassionate, willing to listen to me, but most importantly had heard of this condition! He assured me that the pulsatile tinnitus wasn't a psychological condition, and he reviewed all my imaging tests with me one by one. As he reviewed my MRA and CT images, he also didn't find anything of interest, but then while reviewing my MRI he suspected that I probably had a stenosis of a vein on my left side, but he couldn't confirm it because of the MRI's low image quality (it had been done in 2006). He then sent me for a high resolution MRI with contrast and a MRA, which I performed last Monday.
The doctor called with my results two days later, and the good news is that I don't have a tumor, or an aneursym. What he did find though is bilateral stenosis of two veins (one on each side of my head) and that is what is causing the pulsatile tinnitus in my left ear. He recommended that the next step be to schedule a lumbar puncture to check my CSF pressure, as many people diagnosed with this condition also have Idiopathic Intercranial Hypertension. I recently had my vision checked and there was no sign of papilledema, but from my understanding it is possible to have IIH without it, although it is more rare. I'm hopeful I don't have this condition and can move onto deciding what the next step will be. I'm so thankful that after all of these years to have finally gotten a diagnosis, and not left to feel as though it's all a figment of my imagination.
Member
Manager
keep me in your thoughts, I hope he sees something that can send me to the right direction.
