Beyond Frustrated with Pulsatile Tinnitus

Hi, my name is Stephanie. I am 33 years old. This is my first time posting. I have had PT since 2005. My PT began with a sinus infection and then bronchitis after I was put on an antibiotic. A few weeks later the PT started in my right ear first and over time became apparent in both ears.

The "wooshing" was at first bearable but has now become so loud that there are times I question whether I can continue living with it. I am a law student and before that a probation officer and have been under a lot of stress for years. I'm sure this exacerbates it. In '05 my dr ordered an MRA and MRI which came up with nothing. At that time I figured I was just going to have to live with the noise. Years later I went to an ENT who didn't really take me seriously. I have had CT scans, taken numerous medications, and had acupuncture. I have been diagnosed with fibromyalgia, migraines, sinus infections, allergies, etc. to explain the condition but none of the treatments for these conditions has worked and I do not believe I have any of these conditions. I do have PCOS and a hiatal hernia but am healthy otherwise. BP is normal, cholesterol is normal, and I am not diabetic. I am overweight (which comes with the PCOS).

Along with the PT I have depression, anxiety, headaches, nausea, blurry vision, tightness in my neck and shoulders, and fatigue. In fact, I am always tired which is what has caused me to resume trying to find a cure. I did some research and learned that approx 75% of PT sufferers have it due to intracranial hypertension which also causes blurry vision, fatigue, depression, anxiety and stiffness in the neck. I also read that losing 5 to 10% of your body weight can help with the IH and PT but with PCOS comes insulin resistance which makes it very difficult to lose weight. I have an appt Mon. with an ENT who is familiar with the condition and am hoping to get the ball rolling on how to resolve this. It has gotten so bad that I constantly press on my jugular on both sides to get some sort of relief from the noise. I barely sleep at night now because it is all I can hear and I get so frustrated in class because I can't hear the teacher over the noise.

Any further information, or just some support would be wonderful. Thank you for taking the time to read my story!

-Stephanie in NC

 

Hey, Stephanie! Have you considered trying trobalt? A lot of people on here have had amazing results with it. I don't think anyone with PT has tried it, so it would be lovely if you could try and tell us the effect it has on PT.

 

Karen, do you believe these potassium channel modulators can work for PT? It seems to be helping normal tinnitus.

 

Hm, I'm just wondering if keppra or trobalt can help with PT, as it's helped others...It just makes me very curious. Anyway, I hope it does work, as isn't PT worse than tinnitus?

 

hi Stephanie.very sorry that your PT seems to be getting worse with time.I also have PT.in my research in some cases the patients who were able to quiet there PT by pressing on their jugular vein were also the lucky few who eventually found a doctor who was able to find a cure for them.usually by some type of surgery.it sounds like you have not had an mri or mra in 10 years.insist on new scans.many times those scans can miss something that can be causing the PT.Do not give up.keep trying until you find a doctor who will take you seriously.many times your better off seeing a neurologist whos familiar with PT instead of an ENT.Good luck and hopefully things improve for you. billy 43

 

Random thought, have you ever been tested for Lyme disease? You have a lot of symptoms, and fibromyalgia has been incorrectly diagnosed at times. I know someone that didn't realize they had it for a long time.

Lyme disease can cause hearing problems and tinnitus, I don't think it would cause true PT though. I say true PT because true PT vascular, I have a pulsating hiss that I think was caused by a change in my brain.

I'm sorry you are going through this.

 

@Karen how long after you took blood pressure medicine did your PT begin?

 

@StephDay, I really relate to your woes. I too am 33, have gone back to school, and have been living with PT for a decade or so (in my darker times I think of how I could stop hearing my heart beat if my heart would just. stop. beating). And, like you, I'm diagnosed PCOS, fibromyalgia, migraines, allergies, too many sinus infections, depression, anxiety... whatever it is you "really" have, if there is a single root cause, I think I must have the same thing.
The intracranial hypertension thing makes me think maybe some good old trepanning could solve my problems but I don't think I'm brave/foolhardy enough to perform it on myself and I highly doubt there are modern medical professionals who would be willing to literally drill a hole in my head.

You mentioned you'd be seeing a new ENT on Monday. Have you learned anything new from that, or have any new things to try?