u/Wrath123

Previous post: https://www.reddit.com/r/PulsatileTinnitus/s/wBYpVImGhf

Hey guys, so i visited a private GP who was happy to go down the investigative pathway/workup and she recommended that I go for a ENT appointment, this is what he said:

1. He doesn't think there is anything wrong with my ears pressure (he used some machine to test ear pressure and both came back fine)

2. He says that the blood tests may reveal the cause, e.g low haemoglobin, iron ect.

3. The failed lumbar punctures may have caused a CSF leak which may be causing increased inter cranial hypertension, he then followed up saying the MRI scans showed no evidence of this (I know this can be indicated on an MRI but isn't a Lumbar puncture the only way to measure CSF pressure?)

4. Said that it can be caused by stress and anxiety and lack of sleep and over time my brain will get used/adapt from the pulsing.

5. Encouraged me to go for a CT Venography as that is the only scan (apart from a MRV and MVA) that I have not had done.

6. Said there is no medication for this if no underlying cause is found.

One thing i left out of my previous post is I've been have micro headaches at various points in my head, nothing painful but just pressure or electric feeling, this increases when I get into a position where the PT stops or is not very noticeable.

I found it all quite confusing/discouraging as he listed many reasons but kind of contradicted himself a bit saying "most of the time its ..." to follow up with another "most of the time its.."

I have blood tests Saturday to measure Iron, Lipids, Thyroid and some more things. I am going to book in for the CTV but I am tempted to book in for MRV and MRA. I will wait for the blood tests to come back before making a decision.

What do you think should be my next step?

Hey guys, so here is my story:

About 4 months ago, I went to A&E regarding headaches at the back of my head (this was advised by my GP). I had a CT scan, which came back fine. They then asked me to come back for a lumbar puncture to rule out a brain bleed. They attempted the procedure three times but were unsuccessful, so they decided not to continue with it.

Instead, they asked me to come back for a CTA and MRI. Both came back fine apart from the detection of minor sinusitis. Between the failed lumbar punctures and the CTA/MRI, I developed PT for around 3 days, but it then went away.

It came back once last week and lasted only for that night. Now it has returned this week (it started on Thursday) and is still occurring.

These are my symptoms:

• Hearing a pulsing sound in only my left ear, in rhythm with my heartbeat.
• When I block my right nostril and blow hard, I become light-headed for a few seconds. The same thing happens if I hold both nostrils shut and swallow. This also occurs when I bend over or stand up too quickly.
• Certain positions lessen or increase the pulsing. I can sometimes get into positions where it stops completely or becomes barely noticeable.
• Quick head movements stop the pulsing for a few seconds, but it then gradually builds up and returns.
• I occasionally hear my left ear popping.
• When I wake up in the morning, it is almost unnoticeable until I stand up. Weirdly, when I woke up this morning, my left ear felt warm and itchy.
• I took an iron (ferritin) rapid test yesterday, and the result came back as "abnormal."

I'm not looking for a diagnosis here, but if anyone else has experienced symptoms similar to mine, what was your outcome?

I've booked a private GP appointment for next week and will obtain copies of my CT, CTA, and MRI scans from the NHS so they can be reviewed as part of a proper investigation (although I suspect I may need to see a specialist).

I've read some horror stories on here about NHS GPs and even private GPs not taking this seriously and telling patients to "live with it." I think that's what scares me most. If it ever gets to that point, does anyone know of any very good specialists in the UK who specialise in PT and wouldn't simply dismiss me? I'm happy to travel any distance.

Thanks guys.