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MoxieGirl

Tinnitus and Clusters

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On another board I posted if anyone else suffers with tinnitus and clusters, and thought I'd present the same question here.

If you have clusters, do you also have tinnitus?

Did they start at the same time?

Is your tinnitus worse just before, during or after an attack?

I do (obviously), and the tinnitus started the same week my clusters did, so am wondering if there is an association.

MG

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If you have clusters, do you also have tinnitus?

Yes

Did they start at the same time?

No. I attribute the onset of mine to too many nights a week sitting next to a drummer who was bashing his crash cymbal about a foot from my ear, as my ears would ring afterwards, and eventually they never stopped ringing (this was about 14 years after the onset of my CH).

Is your tinnitus worse just before, during or after an attack?

Sorry, I haven't paid attention to that. It sure seems more severe when I'm having an unpleasant busting trip though!  :D

FWIW (which is likely NOTHING) I've always had ears that are over sensitive to damage from loud noise - my ears would be ringing after loud music when my friend's wouldn't.

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Yes, but not like a high pitch noise, like my husband has, the Dr told him if it sounds like a sun beetle, they are a "protected" species and can not be killed!! (treated) The ones that sound more like the ocean can be treated!

Mine is my heart throbbing in my ear!! It can wake me up at night even before a CH starts, but then I know it is coming! It started long before I even knew I had CH, always thought it was sinusitis. But it doesn't always happen with a CH!

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Moxie, That is a really interesting question for me. My latest Cycle started about 3 weeks ago. Roughly a month before that I noticed I had tinnitus. Similarly to Bej, I put it down to too many gigs and a penchant for loud music in the car (the only place im aloud to play my music loud) but you've made me think again now. I'll think even deeper if this thread escalates and it looks like a lot of us have it.

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This is way old but somewhat comforting. I’m episodic and am going on my 7th PF day after 35 day cycle. I noticed the tinnitus towards the last week or so of my cycle, only occasionally, but it seems to be getting worse since the clusters stopped. It’s almost constant throughout the day. 

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I had some weird episodes of tinnitus(?) that are infrequent and short lasting but extremely disconcerting when they happen. I know "shell-shock" is a term for PTSD but that is the best description I can come up with it. If you have ever seen one of those movies when an explosion goes off next to the main character and they go to stand back up and all you hear is the tinnitus with everything else suddenly going silent, it's kind of like that. The first time I had it happen I was working at Starbucks with plenty of loud noises around with the espresso machines and music and people then suddenly everything went silent and it was just ringing. Lasted all of 10-15 seconds and then went back to normal. This has happened about 5 more times in the last 6 years and always seems random with nothing seeming to precipitate it. My clusters started about the same time, but I can't recall if I was in a cycle when these happened or not, I will have to remember to keep track next time. 

 

One other thing, pressure in the ears. I have it on both sides, but definitely worse on my cluster side. My hearing has gotten worse since clusters started, and I can't explain it but it doesn't feel like just hearing loss. It feels like a physical or pressure obstruction. When I breathe in deep or exhale fully there is a clicking sound in the ears, drives me crazy at night sometimes if I can't tune it out. I have TMJ disorder and assume it is related to that, but it is curious that it is always worse on the cluster side. If I try to "pop" my ears or whatever you call it when you close your mouth, hold your nose and blow to open the eustacian tubes and release pressure build up it never feels successful like it did when I was younger, more like it halfway opens but the pressure doesnt get to escape fully. Also the inner corner of my left eye starts to bubble like air is escaping there. Feels weird as hell. Freaks people out when they see it too.  Went to an ear doctor who looked in my ear blamed it on allergies without any further tests and prescribed some nasal spray that the insurance said no to because it costs like 400 dollars. So maybe the ear thing is something else entirely for me. maybe it isn't I don't know, but since it was asked there's my input. :) 

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