Ever feel silly saying you have Restless Legs?

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Aiken
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Ever feel silly saying you have Restless Legs?

Post by Aiken »

Imagine telling people you have Exploding Head Syndrome.

I'm sure it's very real, but, oh my god, what a name.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Neco
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Post by Neco »

Ouch

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woodsie357
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Post by woodsie357 »

ROFL I have exploding head syndrome too. I wouldn't be surprised if a lot of RLSers have it. The name sounds pretty bad, but from what I know its brought on from exhaustion and lack of sleep. If you get to sleep your waken by loud sounds of explosions or something loud and startling, it often comes with a flash of light. It's really scary until you find out what's going on.
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Neco
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Post by Neco »

I don't know if I have it.. But I have experience phenomenon similar to it..

Every once in a while, lately, I will be startled awake by some kind of loud pop or static noise... Similar to what I experienced when a lightning bolt struck the tree in our back yard.. Although not as intense or painful enough to send my hands over my ears like the lightning was.

I attributed this to the random tick issue I have had for a while now though.. I don't want to look like a hypochondriac in front of my doctor though... lol..

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woodsie357
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Post by woodsie357 »

I hear ya Zach. Just knowing I wasn't crazy was the best treatment to me. Actually once I found out what it was, the anxiety about it went away and it happens much less frequently. In fact when it happens now I get a bit annoyed, but a bit excited. The brain is such a powerful thing.
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Aiken
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Post by Aiken »

Now that I think about it, back when I was all screwed up and between meds, and not sleeping much at all, I used to get almost to sleep, and then I'd hear this loud sort of ring, like a single strike of a huge bell, or a really, really loud version of running your finger over the rim of a crystal wine glass. I wonder if that's the same thing.

I used to think it was just all the filters in my brain turning off, and letting me hear 100% of my tinnitus for a second before the rest of my brain turned off. Maybe not.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Sojourner
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Post by Sojourner »

Actually, I presented this information to a sleep specialist and psychiatrist who simply dismissed it. However, it fit(s) me to a T.... my loud noise is what you would hear if someone slammed a door extremely hard. I also get a wave or rush of a very pleasant feeling that seems to begin and end almost instantly but which I wish could last forever. Unfortunately, that is then followed by a period of extreme anxiety, fear, and terror---sometime accompanied by muscle spasms in quite unusual areas. The "bad" feeling lasta long after I am awake and is hard to shake off. May be a legitimate condition but don't think it is given much credence by the medical community--at least that is my experience.
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woodsie357
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Post by woodsie357 »

Yep Aiken I bet you did.

And Sojourner sounds exactly like exploding head syndrome. It seems to be brought on by extreme exhaustion. So I would think that most RLSers have it, at least after a long stretch of sleeplessness.

For awhile I was more worried about the head explosions then the RLS, just because I thought I was losing my mind.

I wonder if it's some sort of evolution thing. Survival mech. Like standing on guard during war.

nope medical community seems to say oh that... that's nothing. But when your feeling it, it can cause a huge amount of anxiety.
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Post by ViewsAskew »

Coming here tonight has totally peeved me. I think I was already peeved - won't bore anyone with why - but this pushed me over the edge.

I have HAD it with doctors who ignore stuff, don't listen, have their own agenda and screw what bothers us, etc.

How the heck do we fight this? There must be a way!
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

mackjergens
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Post by mackjergens »

When I tell someone I have rls, I then follow by saying its a Nuero problem, that my brain does not process iron properly. Sounds alot better than saying 'I have creepy crawly feeling in my legs and have to walk all night"!! *L*

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woodsie357
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Post by woodsie357 »

some how we have to make our voices heard. I curse those of us who have it mildly say once every year or two, and tell everyone its no big deal. Its always someone you tell has a brother, friend, mother, sister that has it off and on, but doesn't seem to suffer. I don't think people know there is a huge range of us with severe symptoms, and some of us so severe at times we have thought of suicide. and its every day all day. They have no idea.

We should do public sleepins, like the laleche league does milk ins.
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Neco
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Post by Neco »

I had the same experience with my dick of a former counselor... So glad he's gone now and I got this better guy..

His girlfriend or partner or whatever he calls her, has IBS and she makes it through it ok and its not that bad.. So everytime I complain about it, I get to hear how great SHE handles it and how I should be more like her..

Something *** therapy :roll:

coaster
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Post by coaster »

He won't be singing that tune after the first time they're on the road 20 miles from the nearest exit and she has to go. NOW. RIGHT NOOOOOOWWWWW!!!!
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whyyesiamspecial
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pain in head/side of head.

Post by whyyesiamspecial »

i don't know if this has anything to do with exploding head syndrome but i get this excruciating pain in/on the side of my head/skull when i turn it a certain way (sometimes i catch myself before it happens).
the only way i can describe it is it feels like a huge rubber band is snapping in the side of my head. i've been going through this for years.
the pain knocks me to my knees and all i can do is hold my head until the pain subsides.

anyone else go through this or something similar?
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Aiken
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Post by Aiken »

whyyesiamspecial--

There are several nerve sources that serve the side of the head.

I personally have problems with clenched muscle(s) on the left side of my neck that seem to be pinching nerves coming out of my upper cervical spine, causing shocking pain up the left side of my skull. If the muscle(s) hurt, there's usually coincident pain on the side of my skull.

Here's a page with decent diagrams. Note that the exact borders vary somewhat from person to person, and these are more of a general idea of where the areas lie.

http://www.face-and-emotion.com/datafac ... sation.jsp

Mine, for instance, looks to be the lesser occipital and/or the great auricular areas, apparently served from the C2/C3 part of the cervical spine. That would make sense, since my worst-offending muscles, the scalenes, are connected to C2/C3 at the upper end.

Your mileage may vary, but you'd definitely want to get treatment for this, if it's the problem. I've had both physical therapy and, a couple of times, botox in the worst muscles (which works wonders).

Of course, your problem could have another source entirely. I hope you have had, or will have, an MRI of your head to check for internal issues.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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