1. Community
  2. Brain and nerves
  3. Hemifacial Spasm

Thumping in ear

Posted , 5 users are following.

jessica_59892
jessica_59892

Hi there. Well unfortunately after a few months spasm free I have started up again. This time it's very odd though it is on the other side of my face! My right side now! Yesterday I noticed I heard a strange thumping sound in my right ear and today I started having some facial twitching near the eye on that side. I think I have read on here before that others can hear a strange sound in their ear as well. Any thoughts?? I have read it is very abnormal for the twitch to be on both sides. 

0 likes, 13 replies

13 Replies

  • Roseann
    Roseann jessica_59892

    Posted

    Hi again Jessica.  How are you doing?  Sorry to hear you're having problems again.  I think sounds in the HFS ear are quite common.  It's not completely unheard of to have HFS on both sides but it's very rare (or so I've read).  If you look at the Facebook groups in the FILES section you will see some recent research which mentions this and lots of other aspects of HFS.  Hopefully this 'other side' business is a sympathy vote not the start up of HFS again.  There is a condition called blepherospasm which affects both sides but I don't know too much about that. Sorry, I am rambling and not being very helpful here but just thought I would say hello. 
    • jessica_59892
      jessica_59892 Roseann

      Posted

      Thanks for your quick response Roseanne! I was so upset yesterday as this begun again after feeling relief for quite a while. I'll have to look up the other condition sad I've just gotten zero answers in my quest to figure this all out. 
    • jessica_59892
      jessica_59892

      Posted

      I wish I could say I was doing better Roseanne but unfortunately since I've posted last I've had several new health issues come. It seems like once the hfs subsided a bit it was time for a new stresser to be added to my plate. I've been diagnosed with a very rare skin disorder which the possible causes are undetermined because there's not enough research to back it up. So on that end no answers as well! Seems as if when my stress hits a high the spasms return of course. I'm getting ready to try a new neuro out so hopefully Ill be led in the right direction! I'm just trying to stay positive and im determined to get answers!! 
    • Roseann
      Roseann jessica_59892

      Posted

      Really really sorry to hear this Jessica.  Life can be very unfair but we have to keep on attacking it and trying to find the answers eh.  Would it be possible for you to contact the world reknowned Dr Sekula in Pittsburgh.  He will talk to people on Skype and review MRI scans and he does seem to be very honest if he is unable to help someone.  I wish you better health and some.  With love. x
  • camas
    camas jessica_59892

    Posted

    Hi Jessica,

    I am so sorry to hear that your facial spasm have returned.  It is odd that the spasm is now on the opposite side.  When my HMS started the "epicenter" was located below the left cheek bone.  It spread rapidly and the left side of my mouth was forced upwards and my left eye would be forced to close simultaneously.  I too had the thumping sound in my ear.

    My HFS affected my trigeminal nerve, so whenever I would have a twitch/spasm I would also have excrutiating pain.  The neuroligists just gave me medication, which did not help at all.  As I have said in my earlier posts, I wish that my "specialists" would have told me about, and directed me. to a surgeon that specialized in the microvascular decompression surgery, because I don't think that I would have the nerve damage that I have today.  

  • krnflakgrl
    krnflakgrl jessica_59892

    Posted

    Hi Jessica. Have you been diagnosed with HFS? I too have twitching on both sides, and when mine recurred after 4 months, it is now on the opposite side from when it originally started in March. I read that you had been diagnosed with a rare skin disorder. Is it scleroderma? I only ask because I had an ANA test come back borderline positive in a pattern That was consistent with that disease, but no one has looked at it as a possibility for all this twitching.

    My ears thump as well, on both sides... Just wanted to chime in... 

    • jessica_59892
      jessica_59892 krnflakgrl

      Posted

      Hello Krnflakgrl. Interesting that your story sounds very similar to mine. Same thing mine disappeard for several months only to return on the opposite side! I wasn't diagnosed with scleroderma I was diagnosed with pleva. I have yet to be diagnosed with HFS and I really had all the signs and symptoms to a tee except for now that it's switched sides suddenly. I have been wondering if there is any connection at all, and after all my research the only thing I can make a correlation with is the possibility of MS? Sounds strange but there are skin conditions that can come up with MS, twitching is very likely too of course. I have been getting electric shock type feelings in my hands and feet often as well. I really hope to come to an answer with all of this. I have seen specialists, and a neuro ( who I didn't particularly care for so im switching) but no answers! I had a clean MRI back in March, and a clean eeg test as well. Hope to figure it out!! 
    • krnflakgrl
      krnflakgrl jessica_59892

      Posted

      I've been wondering about MS as well. I had a clean brain MRI, but I have friends with MS who are begging me to get a spinal one. Apparently it can show up there and not in the brain. I get tingling and shocks in my hands and feet too. We sound very similar. I'm in the HFS forum on Facebook and there ARE a few people who have bilateral HFS, but when their spasms reappeared the reappeared in the same way, just including more of their face. I had spasms in my left smile line in March. Now they reappeared below my lip on the opposite side. Actually , I've had them on both sides of my lip.. It's all very weird. I keep thinking that because it's both sides, it may not be HFS. I see the neuro on Thur. Hope to get a better idea. I'll post what I find out! smile
    • jessica_59892
      jessica_59892 krnflakgrl

      Posted

      Wow we do sound very similar! I also get random twitches throughout my whole body. Mine has been going on for well over a year at this point probably longer, and if I look back and think about it I believe the twitching did start sparatically throughout my body and mainly stayed in my face area. I too have twitching in my smile area. Please keep me updated on what you find out. I'm wondering now if I need to speak to my dr about a spinal one since my brain was clean as well. Thanks for the input! Good luck I hope you get answers!! 
    • krnflakgrl
      krnflakgrl jessica_59892

      Posted

      I get them throughout my body too.. I'll definitely update you after I talk to the neuro on Thur. Take care until then!! Hugs!
  • WindHurt
    WindHurt jessica_59892

    Posted

    Hello Jessica,

    I think HFS sufferers have a twist somewhere in the neck from C1 to C7 OR maybe even further down the spine. With 33 vertebrae stacked together, any one out-of-kilter could lead to trouble.  The vertebral artery, a branch of the subclavian sigmoid to the basilar artery around C1 level and it is possible any stricture cause a difference in the hemodynamics.

    Some days I can get it un-twisted and the twitching diminish. During golf and after sleep the twitch re-appears. Quite annoying but I will keep trying bit of traction and hope for a great fluke.

    At 65 yrs of age, social events become less important. It is still a challenge to find the real cause. Finding some reprieve and periods of freedom from twitching is a source of self-encouragement to experiment more on this horrendous affliction. My ear thumping has reduced considerably during good alignments.

    It is always tough to find a distant cause but hopefully someday the prime cause will be known.

    Take care.

  • camas
    camas jessica_59892

    Posted

    WindHurt,

    That might be the case with some HFS sufferers, but I know that mine was caused from an artery putting pressure on nerve that was very clse to my inner ear on the left side.  That is why I could feel hear the thumping and pulling n my left ear.

    I had to train myself to sleep on my right side to limit the twitching and whenever I would bend over the twitching increased, because the blood was going through that vein.

    When they found where the vein was putting pressure on the nerve a mass had formed st that intersection.  It is like a river or a creek, if something blocks it, the creek or river is going to find alternate routes.  After eight years of blockage there were several little "tributaries" that were attempting to make their way around the nerve.

    The surgeon implanted a teflon "pillow" between the artery and the nerve to prevent the artery fro putting pressure on the nerve whenever my heart would pump.

    I can't think of any nerves that are continuous, they all have an ending (I think).  The trigeminal nerve that is in face was constantly getting pulled on.  When I went to the first neurologist I asked him, "What is the long term damage that cab happen to a nerve if the HFS isn't repaired quickly?"  He avoided my question and recommended a botox shot.  All that did was make my face saggy.  So I had a saggy face that twitched.

    • WindHurt
      WindHurt camas

      Posted

      Hello Camas,

      Like to quote you: " I had to train myself to sleep on my right side...", does that not tell you that there is collapse in the stack of vertebrae somewhere?

      At one time the thumping in the ear was quite irritation on my left side, the twitching side.

      With the help of gentle traction and turning TOWARDS the affected side plus some wiggling to position the spine while in supine position, I find that not only does the frequency of twitching diminish, the thumping becomes less obvious.

      When I get over-elated or over enthusiastic, and turn the head towards the right side, I find that I am back to square one! The forceful eye closure (blepharospasm) returns,  but the intensity of thumping in the ear is less.

      So now I use that bungee and turn more to the affected side.

      Botox poisons the facial muscles and cause palsy. The benefit construed by the drug to lessen the spasms has an undesirable outcome > palsy. So I rejected it after about 2-3 years of it.

      About teflon tape to separate the nerve and arterial branch, I work on the premise that if I could untwist the neck, natural healing will occur - fascial tissues will thicken back with fibroblastic activity. (Sorry about the medical term!) - Hope this optimism is not too far fetched!

      xxxxxxxxxxx

      xxxxxxxxxxx

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.