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Brain & Nervous System Disorders Message Board

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I believe I have what you are describing. I am 44 and I have had it since I was about 8 years old. I never heard of anyone else experiencing anything like it until my 8 year old daughter started describing the same symptoms. This makes me think you can inherit it because I can't imagine the coincidence of a mother/daughter both having this bizarre condition. She describes her episodes that match mine to an uncanny level. I never pursued it medically until she became effected. We have been looking into it for a year and have various opinions, but nothing that I am convinced of yet and thus I have started trolling boards looking for people with similar conditions.

Our symptoms - we can hear sounds in our head that we know no one else can hear and that they are only in our head. The sounds are usually very loud - amplified. They can be just noises, like "waaa waaa waaa" or they can be screaming sounds or they can be words that you hear or are thinking repeated over and over very loudly. We both also get a feeling of pressure in the brain, but not really a physical feeling -more mental. Sometimes the sounds feel like they are pulsating.

Often the symptoms come on from seemingly nowhere - no particular trigger. IT can happen when we are very quiet - getting ready to go to sleep or laying watching tv or it can happen in places where it is very loud and noisy. More often, it is quiet though. Sometimes it is triggered by a single loud noise, or ominous music. We both feel it can be triggered by a disturbing image - we both don't like it when things seem too large, i.e., a sculpture of a humungous hand outside the Museum of Fine Art causes me problems. She had trouble with another child's handwriting being overly large. It can even be a small thing that is just way out of proportion. I also have problems with really gross images, like the orks in the Lord of the Rings movies.

Often now, I don't even get the sounds in my brain as much as I get this feeling of a sound or of pulsing, but I know it is not a real pulse - just a loud feeling, if that makes any sense at all.

The episodes used to last a long time when I was little because I didn't know how to turn them off. They just kind of took over my brain for 30 minutes or so - very frightening as a child. My daughters can last a couple of minutes or at bedtime for a half hour until I can distract her enough to fall asleep before the next wave comes. Mine now can come for brief periods, like seconds or less than a second. As soon as I feel them, I get frightened and mentally banish them. They can keep trying to make a comeback for 5 or 10 minutes, but I am decent at getting rid of them.

Distraction is the best technique. If it is during the day, I start doing something active. If I am laying down, it is harder - sometimes I have to get up. Usually, I can just mentally tell my brain to "stop". I sometimes even give my head a little shake to shake it off.

I think and have been told that since I have had it my whole life, that I can assume it is harmless. I recently had an CT scan for a concussion and they didn't see anything wrong with my brain, so we can rule out tumors or anything like that. also, since my daughter has it, I wouldn't think it would be anything like that.

One child psychologist suggested it was probably an anxiety disorder. That when we are stressed, we transpose our stress feelings into another of our senses. some people get back aches, others get heart palpitations from stress, we get brain spasms, if you will. This is one opinion. I am a highly anxious person, so I could believe it, though my daughter is very carefree. He suggested it might be subconscious stress, which is possible - she is a middle child and she gets brutalized by her older sister (in the most loving way possible of course)

My concussion doctor, who I spoke with about it because the concussion seemed to stir it up a bit - seems to think it could be migraines - mind you, I don't get headaches, but he said there is a broader family of migraines that come without the headache and he said it could be that - a migraine aura. I do get retinal migraines (light spots in my vision occasionaly) and he noted that was a possibility. NOt sure how I feel about this diagnosis - I am going to talk to him more next month about it.

A third doctor suggested it might be blood sugar related. I do have hypoglycemia, but I didn't have those issues when I was little and I don't have low blood sugar when the symptoms come on. So I think no to this.

And I just read something about "exploding brain syndrome" on wikipedia that has some similarities, but not all.

so, I'm sorry, I don't have an answer. But it does feel good to know there are others out there with it. I did think I was going to go crazy when I was younger. It hasn't happened yet, though my husband would say, "don't sell yourself short:-)"

If any of these things sound familiar to you or you find other commonalities between our experiences, I would love to hear them.

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