Recent content by SueX

After extensive scanning, audiovestibular tests, neuro-ophthalmology evaluations, sleep apnea testing, and appointments with a dentist and physiotherapist, the consultant today gave me a working diagnosis: Idiopathic Intracranial Hypotension Without Papilledema (IIHWOP). I feel relieved to at...

I am not sure if this procedure is called different things in different countries. I am in the UK, and two doctors have suggested it to me as a way forward. I am referring to the procedure where a catheter is inserted into the groin and guided up to the brain for imaging under X-ray. I...

I have also tried all the therapies, including Cognitive Behavioral Therapy and Tinnitus Retraining Therapy. However, like someone else mentioned, I experience a relentless screeching sound, like train brakes in my head. On top of that, other tones also appear. For me, my brain cannot adapt to...

I need advice. 😊 I have undergone extensive CT and MRI scans. My pulsatile tinnitus is on the left side. The scans revealed three findings. First, the Anterior Inferior Cerebellar Artery (AICA) is compressing the vestibular and cochlear nerves on the left side. The neuroradiologist believes...

I am eight months in. The noise I hear is like train brakes, along with several other sounds happening at the same time. It is also pulsatile. I have not managed to get used to it yet, but there are many positive stories here, and that truly helps.

Sorry to hear about that. I hope it proves to be only temporary, although six months is a long time for a single incident. It is possible that something else is going on, and the door slam may have been just a coincidence. Are you undergoing any scans or other investigations?

Hey, that's really good news - I hope the pulsatile tinnitus stays away!

Thanks - that's really helpful.

I’ve had extensive imaging for my pulsatile tinnitus, and a few possible causes have been raised, but there is still no single diagnosis. From my own reading, I thought that bimodal stimulation might be worth trying. The research so far seems fairly promising, even though there are some...

The electricity and buzzing are sadly just part of tinnitus. When I first got tinnitus in September 2024, it was a whooshing sound, a bit like waves on the beach. I started to get used to that, but I am struggling with the electricity sound because it is such an “evil” sound. Based on what...

@amyliyahxxx, how was your follow-up appointment?

I have seen probably 10 different doctors now, and each one has had a different theory on the pulsatile tinnitus. It is hard. I have had extensive imaging, but even that seems to be interpreted differently. Rather than seeing this as a confusing situation, I am trying to see it as each visit...

It's really good to read that things are going well.

I’m only six months in with the “electricity” sounds. It has not improved yet, but sometimes I experience other tones alongside the static-like electricity. However, I have read that for many people, it does get better. So, there is hope.

Yes, I have more problems on the left side, along with a high-frequency sound. It really is hell, isn’t it? But thank goodness for groups like this.