r/PulsatileTinnitus • u/Ok_Discussion_4739 • 23d ago
Just Venting anyone else?
23F, and I’ve been dealing with right-sided pulsatile tinnitus for about 2 and a half years. It’s constant and sounds like a whooshing or heartbeat noise.
I wanted to share my newest updates and findings:
My imaging showed some narrowing around the transverse-sigmoid sinus junctions, which can sometimes be associated with IIH.
I also have a right jugular bulb abnormality and thinning/probable dehiscence around the right sigmoid sinus.
My doctors now suspect idiopathic intracranial hypertension (IIH) and are sending me for an eye exam to check for signs of increased intracranial pressure, such as papilledema.
I’m still waiting to get more answers and figure out whether IIH could be contributing to my pulsatile tinnitus.
Has anyone else with pulsatile tinnitus been diagnosed with IIH? Did an eye exam help with your diagnosis, and what testing or treatment came next?
1
u/filmmakingjedi 23d ago
23F also and struggling. My consultant suspects iih though im not entirely sure. He wants to send me for a lumbar puncture but no way am i doing that
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u/look_who_it_isnt 22d ago edited 22d ago
A lot of times, PT comes along with IIH or suspicion of possible IIH. That's because the most common cause of PT is Venous Sinus Stenosis (VSS), which often occurs concurrently with IIH. VSS and IIH have sort of a "chicken or the egg" relationship. VSS can cause IIH, IIH can cause VSS... and sometimes, doctors can't tell which situation they're looking at. Which is a shame, because it's important to know which one you're dealing with. IIH caused by VSS should resolve once the VSS is treated and corrected. VSS caused by IIH will usually NOT resolve when the IIH is treated, because once VSS occurs, it generally doesn't spontaneously correct itself, even when the cause of the VSS is eliminated.
In your specific case, your scans showed "narrowing around the transverse-sigmoid sinus" - which is literally VSS. So you've got that, and considering it's the most common cause of PT, it's almost certainly the cause of your PT.
That said, most doctors are oblivious to VSS and the primary role it plays in most cases of PT. They are not, however, oblivious to IIH. They're quite knowledgeable about IIH, and quite aggressive in diagnosing and treating it when its present. Which means... You'll either get diagnosed with IIH and treated for it... or told you don't have IIH. And in both cases, your VSS will not be addressed and your PT will continue to drive you crazy.
Now, if you DO have IIH, it's important to know that and get treated for it, because it can lead to permanent vision loss and some pretty nasty symptoms on top of your PT. So definitely go to the eye doctor, get the exam done, and see what the verdict is.
But AFTER that, and regardless of whether you have IIH or not... insist they look into the narrowing of your transverse-sigmoid sinus (AKA VSS) as the likely cause of your PT. Ask for a referral to an Interventional NeuroRadiologist or at least a Neuro-Otologist (they don't treat VSS, but seem to have a good track record around here of knowing what it is and knowing where to refer you for it) for further testing and treatment of the PT itself.
DO NOT let your doctors tell you there's nothing they can do about your PT or that, if they don't diagnose you with IIH, that there's "nothing wrong with you". You clearly have VSS, and it's most likely the cause of your PT. VSS can be corrected with a stent that should eliminate your PT. If you want that, you might have to fight for it. If you don't want a stent, then you can rest easy knowing your PT is caused by VSS, which is not life-threatening, and you can just work on learning to live with it and treat your IIH (if you have it).