I recently received this personal story from a Whoosher who pushed and pushed for diagnostic tests - tests that our symptom, pulsatile tinnitus, clearly warrant - and she finally found a diagnosis. It's yet another inspiring example of diligence and perseverance for answers.

My journey began at the end of January 2018. I woke up one morning with my left ear blocked…like I had an ear plug in my ear and it would not clear. I was not sure why this occurred since I had not been sick at all but have had a history of sinus/allergy issues forever.

I went to my ENT who told me to take allergy medicine daily for 30 days along with a nasal steroid which would open up the ear over time. I did as the doctor told me and followed the medicine routine religiously. Nothing changed.

At the same time I was having dizzy spells and my body felt off. I then started hearing my heartbeat in my ears about 2 weeks after my blocked ear which started keeping me up at night since it was worse when I laid down. I was not sure what this was, so I went to my General Practioner and told him my symptoms and informed him what my ENT told me. He agreed with the ENT and told me to keep on the allergy medicine routine to see if this would change the outcome. He said that since my ear was blocked I was probably more aware of the sound now. He did order blood work though since I had not had a physical in a long time just to see where my levels were and to rule out any other possible issues.

I left the doctor’s office and tried to grin and bear it. I struggled with sleep but did the best I could to ignore it and move on.

My blood work came back about 1 week later which did show that my thyroid was high and my Vitamin D was low. The doctor told me to buy a Vitamin supplement but did not feel that my thyroid levels were “high enough for him to begin treatment.” I thought that was odd especially since thyroid issues are hereditary and run in my family (my grandmother, mother and aunt all have thyroid issues) but trusted the doctor at that time since this was how I was raised.

I was not feeling well and the whooshing was really bad at night. Some nights were so bad that I could feel my heartbeat throughout my entire body which was keeping me up.

It was now the end of February 2018 and I was trying to work through it but having issues feeling ok at work. I then went back to my GP in March and told him that I was not getting better, I was not sleeping well and that my body felt like electricity was running through it. He still refused to deal with my thyroid and referred me to a neurologist since my head was now feeling tingly all over when I touched it or ran my fingers through my hair. I went to the neurologist the next day who said he thought it was migraine related and ordered an MRI.

The results were back a few days later….they came back normal. I was discouraged but the neurologist said I should take Depakote (anti-seizure medicine) for 30 days to see if this helped with the whooshing and sleeping. It did for a bit but then came back. Plus, I was not happy having to take medication for something when I did not have a diagnosis but I did as the doctor told me and followed through with the medication for 30 days.

After 30 days was up and no change in results in the whooshing arena, the neurologist told me he was not sure he was able to help me any further. By this time, I had come across Whooshers.com and asked the neurologist if he would order an ultrasound of my carotid artery to check for anything vascular, which he did. He ordered the test for my neck (not my head) but I thought it was better than nothing.

I found that doctors don’t like to request tests unless you push and push - so that is what I started to do. I was on a mission to determine what was wrong and I was still feeling awful. The ultrasound was completed in late March and came back normal. Discouraged again, as I knew that there was something wrong but doctors were telling me that it was in my mind.

Funny thing was when I was getting the ultrasound, the technician asked why I was there and I told her about my whooshing. She asked if I was anemic since she was and did get that whooshing sound when her levels were low. I told her that no one had said I was but it made sense to me that that could be an issue since my thyroid was high but no one was willing to help with that.

I then started down the anemic path thinking that something with my thyroid issues may be causing my whooshing issues. I went back to my GP to push for getting on thyroid medication. I was then told that I was having anxiety and he wanted me to take Lexapro to deal with that first, before anything else. I did not go back to him after that.

It was at that time that a friend referred me to an endocrinologist to have my levels reviewed. Why my GP never mentioned that there was a doctor who specialized in thyroid I don’t know, but I was willing to do anything at this point.

I needed someone to believe that I was having symptoms even if the test results for the most part were coming back "normal." I did not know how to get better and needed to find a sympathetic doctor who would really take the time to help me figure out what was wrong.

I went to see the endocrinologist at the end of April who looked at my blood work and said that I needed to be on thyroid meds for sure. He did not understand why my GP was not willing to put me on thyroid since my levels were clearly an issue. He also said that thyroid issues cause rapid blood flow, which may be why the whooshing sound I hear was high though he did say that my thyroid issues were not the reason for the whooshing since it was not a common symptom of thyroid issues. He also told me to not take Lexapro since I was not anxious or depressed and said that he finds that a lot of GPs prescribe anti-anxiety medication when they do not know how to diagnosis or treat thyroid issues. He said that anxiety is a very common thyroid imbalance issue and with what I have been through it made sense that I would have a bit of anxiety since I was not feeling well.

I was relieved that my thyroid was now being dealt with but was still unclear about the whooshing.  I did leave this doctor’s office feeling optimistic, which I had not done in awhile. I left that day with a better outlook and knew I was on the right path. I started taking my thyroid meds the next day and a lot of my symptoms subsided (dizziness and electrical feeling throughout my body), however the whooshing was still there, just not as loud as before.

I then continued on the path of working to figure out my whooshing. I found a new GP who agreed with the possibility of anemia and found that my ferritin levels were low, which can cause a whooshing-like symptom. I was on iron supplements for 90 days and my whooshing did improve a bit but was still there.

When I went back to check my ferritin levels and they came back within normal range, my new GP decided to order an MRA since she agreed with me that this may in fact be something vascular since my “levels” did not eliminate my whooshing symptoms. I was grateful that she was willing to work with me to find an answer.

I underwent my MRA test in August which came back abnormal showing that my right cavernous carotid artery and the right supraclinoid ICA segment were approximately 50% narrowed, causing obstruction in blood flow. It was bittersweet for me since artery narrowing is a scary finding, but at the same time I was finally getting answers and tests were coming back with a finding.

I was not crazy!

Both my ENT and my new GP referred me to a neurosurgeon who then requested a cerebral angiogram to be completed. I had this test done mid-August which came back confirming the finding. The results confirmed an approximate 70% narrowing of the right cavernous carotid artery and that it suggests possible Moyamoya disease, a rare progressive cerebrovascular disorder caused by blocked arteries at the base of the brain. 

I have now been referred to a vascular surgeon in LA who specializes in this type of finding and the neurosurgeon was able to get me in ASAP for this to be reviewed and treatment options discussed.

I cannot believe that I finally have a diagnosis! I pushed and pushed and was finally able to find something. I am optimistic about the outcome and really believe that I will have treatment and hopefully whooshing gone by the end of this year at the latest.

More to follow once I meet with the vascular surgeon, but I wanted to let everyone know that Whooshers.com did give me the info I needed to continue to push these doctors in the direction of a diagnosis by insisting on ordering tests. It took time, but I was finally able to get an answer after continuing to follow up and find doctors who were willing to help.

Don’t give up and know that there are doctors out there that WILL help. You may just need to keep pushing to find one.

Carrie Luebcke 

Carrie, thank you for sharing your story. A diagnosed cause of pulsatile tinnitus is just the first step, but it's a huge step.  Good for you for being your best advocate, and we look forwad to following your progress.