Never had It before and now I’m getting a lot of it and associating it with the daily facial flares. Can be a roar, can be a whine and often I only realise it was there when it suddenly switches off.
Does anyone else get this?

Hello Nel. I have no idea if it is associated with EM but I too get Tinnitus off and on. Mine is usually a high pitch ringing. I haven't noticed if it happens with facial flares because my face flares so often but I don't always get Tinnitus with them. I will have to pay attention next time if I am flaring in my face when it happens. I don't know about you but it's enough to drive you crazy sometimes!

Take care,


In combination with the hot eyes and swollen nose, itching scalp and burning ears it does seem like the last straw… I don’t usually flare until lunchtime so at least I get a break in the mornings:)

I'm glad you get some kind of break. I do too. I usually wake flaring but it goes away after I am up for a bit then it comes back in the afternoon or anytime if I try to be active or go somewhere warm. It is nice to know and have that little break to look forward to on a pretty regular basis. :)

SNAP! On my rounds networking I hear the same. We are not the only EM'ers who suffer so acutely with this .

EM is so much more than the classic hallmark hot burning pain and flaring.

Glad you get some respite - albeit small.

God bless


Well, as with most of the EM issues, who knows! I am choosing to associate it with head flares because I first realised it was happening daily in the afternoon/evening when the head flares start. My hearing isn’t brilliant at the best of times so I could have done without unbidden noises in my ears. No butterflies for me, more of a an ill tuned radio or a distant waterfall if I am feeling poetic. Add it too a migraine aura and it becomes a badly tuned TV.
Sorry about the spinal damage Tizzy. I would rather have an EM flare than persistent back or neck/shoulder pain.

So strange that you are regretting the arrival of Summer and I am dreading the Winter Tizzy… I suppose your Summers are just so much hotter. Apart from a couple of weeks our Summer has been very bearable. My head flares have coincided with slightly cooler weather though I don’t expect it to get cold just yet, good since our Australian visitors arrive on Tuesday:). Four little grandchildren in the house for a month plus two visiting regularly is going to be so exciting but I want it to be warm enough to shoo the children into the garden when I need a break;)

Ps I actually have curtains hanging over mirror doors in my bedroom. I never look at my image unless I absolutely have to.

Hi all, My tinnitus which 'arrived' earlier this year, was so loud this morning I was starting to feel like it was going to drive me nuts -louder than it has ever been. It's still loud now, but not as bad. Guess I am just going to have to adjust. I think chronic migraine is probably the most likely cause. A few days before the start of tinnitus I had experienced the end of a three day migraine that reached a pain level I had not experienced before. And all because I decided to stop the pain meds for a while to see if my breakthrough migraines were no worse without the meds ( whether they were having much impact). Only to find they are excruciating without the meds - and bought on tinnitus as well.

My face was not flaring this morning when the tinnitus was really bad, although my face was itchy following 2 days of facial flaring. My feet were really burning, but not particularly red. My back and arms have been really itchy and that can preceed a flare. Guess I'm still looking for the new pattern - much of it seems so random now.


Mostly I have a distant roar which I sometimes blame on our proximity to Heathrow airport and it is only when I becomes a high pitched whine that I am really bothered. This morning from 4 am the ringing in my ears came from three very excited little girls who decided that day had arrived!

I was interested in the legs dependent thing Tizzy. I am sitting in bed still for a little quiet to attend to Ben’s Friends and it is the worst position for my feet. They are blazing and I won’t be able to stand it much longer. When I get up they will go deep red but soon after that the pain will ease until mid afternoon. If I had stayed lying in bed they would probably not be burning but because I got up to make sure our visitors knew where to find the porridge and got back in bed this is the result.

Blue I feel that patterns in EM are just there like rules to be broken. EM changes constantly for me. The itch comes and goes and I pin it on this and that but really it is pretty random except for central heating which does it every time.

That’s it, I can stand it no longer and am getting up:)

Nel said it blue. I have all but given up on finding a pattern to my EM. Just when I think I have it figured out it changes yet again! I will get excited when it seems to be getting better only to have it get worse again. On the bright side it also gets better eventually when it seems at it's worst.

I have had a good week in the tinnitus only having it once this week and only for a few hours. :)

Take care,