Author Topic: Exploding Head Syndrome?  (Read 2368 times)

InnerGrace

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Exploding Head Syndrome?
« on: October 27, 2016, 10:47:14 am »
Not as bad as it sounds...lol  So, I found a few discussions on this but they were very old threads....so I thought I would start a new one to see if there are any others experiencing what I have been experiencing the last past couple of days.  First off, I am 5 months out and feeling pretty darn good.  I do have the facial paralysis but it is improving daily!  (Very excited about that..it's like Christmas morning every time I see a wrinkle come back...lol)  I have had a come and go ear pain.  It's not inner ear, but in the area where the ear connects to the head..cartilage area.  I am going to assume that this come and go pain (almost a bruised feeling) is all a part of the healing.  However, yesterday..(and I might add, even though this may have nothing to do with it.. I am at the moment experiencing my first head cold since my surgery and I'm usually not prone to colds and when I do get one, I weather it well.. not so much this time.. I am miserable)  .. I laid down for a nap yesterday morning and in the midst of "waking" up... and I do believe it happened while I was falling asleep, I started hearing a buzzing noise...it was coming in and out of "hearing range". Of course, it's only in my AN ear.  When it occured during my "waking up" spell...I also thought there was someone banging on my door and shaking my whole entire house.... because I felt the vibrations thru my body...(which really, I think would be impossible as I am not sure I would feel that while upstairs in my bedroom.  They would have to be knocking pretty hard)  I immediately jumped up and looked at my phone as I thought maybe there was something up with one of my kids and they were trying to get a hold of me.  Nothing on my phone.  I peeked out the windows, nobody at my house.  It was very strange.  I cracked it up to just a dream.   But this morning, I laid down again, after taking the kids to school.. and the same darn buzzing noise happened.... I remember laying there.. half asleep thinking... there it is!  lol   Funny though, it didn't happen last night when I went to bed for the evening.  There are quite a few things out there  that I've read but EHS ..(exploding head syndrome).. sounds like a likely reason for what is going on inside my "ear"....  These were some of the causes and risk factors:
Anxiety
Fatigue
Stress
Damage to the brain’s nerve cells
Muscle jerk or twitch
Damage to the temporal lobe
Quick and sudden movement of the patient’ s middle ear
Sometimes a sharp stabbing pain is felt (rare)
In addition to that persons who fall over the age of 50 and under the age of 10 usually are at risk for having the exploding head syndrome.



Just curious to hear any similar symptoms from other folks. 
Diagnosed 4/28/2016
2.4 x 2.0 x 1.9 cm AN
Symptoms:  Mild Hearing Loss, Mild Tinnitus, Mild Balance Problems, Possible Vision Issues, Some Vertigo.
Retromastoid Craniectomy 05/30/2016. UPMC Presby
Dr's Gardner and Hirsch
Left SSD. HB 6 Facial Paralysis.  Waiting for the nerves to wake up...

ewhitese

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Re: Exploding Head Syndrome?
« Reply #1 on: November 21, 2016, 09:44:58 pm »
I don't have an exploding head, I have an ancient chinese torture head vice. Every so often I wake up with my head in a vice. My temples thump I feel my heartbeat in my brain and the sides of my head feel like they are being crushed. Tinnitus is in overdrive and effects both ears not just AN side, with the pinging pulsating tone that overwhelms everything.  I stumble around dazed and confused.  I use over the counter pain meds sparingly and only when it's unbearable.

It happens when a storm passes, winter storms like this weekend snow storm are the worst.  High to low pressure and visa versa both have the same effect.  It is most painful in the morning and lasts several hours.  If I power through I can shake it off.  Fresh air, getting out in the weather and being active helps take my mind off it and back to normal.  My common thread with your exploding version is the head cold.  My AN was found during a bad bought of sinusitis bronchitis that ended with sinus surgery.  I still have to watch and be proactive when a sniffle starts. I used to never get sick and now I'm the opposite.  When I wake up feeling great I say hmm look at that.  I haven't slept a whole night through since GK surgery I tend to feel better sitting up to sleep, or at least on a pile of pillows.

My triggers are as I said weather, stress, anxiety, fatigue, muscle exertion physical work.  By far weather changes bring on the worst vice pressure.  My worst symptoms came on around month 4 after GK surgery and lasted for about a year.  I am 3 years post surgery and am doing really well. It gets better or easier to live with, not sure if I have gotten used to my condition or the symptoms have decreased.  I am definitely not lost in my suffering as I once was.  I make a really good barometer and I don't get caught in the rain anymore.

At 5 months postop. I was hearing conversations in my head.  My brain was making it's own sounds replacing the hearing lost in the the AN ear.  I would wake up in the night sure I was hearing a group of people talking.  I couldn't tell what was being said more of a murmur. I don't have that anymore. I started running a fan for the white noise, it helped.  As we lose our hearing, balance etc. our bodies start to compensate and readjust for the senses we lost.  That process is not pleasant but will eventually help bring us back to a place we can function.  Everyone is different and your symptoms are unique.  When you experience something new search these pages and you will find someone who has come up with an effective way to deal with them.

 


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