SPS and overreactiveness to noise, emotions

[Sunshine]

For me, one of the most uncomfortable and puzzling problem is the overreaction of the nervous system to some noises, to excitement, to stress, to sitting and conversing with a friend, to sitting in a busy restaurant, .my understanding is that everyone gets excited which stimulates muscles, but we lack GABA and can’t relax the muscle automatically or willfully. GEESH

When I get excited during a phone call, or seeing a friend, my leg muscles tighten and neuropathy dies up. When the event stops, the nervous system calms down.

Certain noises like a doorbell,loud voices, TV sounds, most radio music, and certain quiet house noises trigger stiffening, very uncomfortable.

These problems led to me isolating myself, and seek a monotone existence.. Eventually I forced myself to still see people and cope with the pain.

I think this is common, from all read. Some get it so bad that if a car honks while they cross the street, the muscle spasms and they collapse and break a bone.

[Sunshine]

I really miss watching movies. They make my legs stiffen painfully. Even happens watching TV more than a few minutes. Sure miss being carefree.

[Sunshine]

Picked up a book at the library today on the way home from doc office. They say , “you have a fine for $30”. !

The computer showed a book was not returned. I recall that book and know I put it in the night drop. So good old SPS immediately went into hyperdrive with muscle stiffening and emotional catastrophizing. The warp speed of emotional reaction is so common in SPS. It was all inside, remained calm on the outside. Before SPS, nothing rattle me. Before Stiff Person Syndrome,,,

This is another part of SPS that I hate. Feeling like a 4year old with irrationally strong reactions to minor stress.

[funnylegs4]

I have Spastic Cerebral Palsy and have the exact same problem! You should see what my body does when I use a toaster LOL. In people with Cerebral Palsy it is called "Moro Reflex" or "startle reflex". Since spasticity is an over reaction to sensory information it makes sense that you would have this. My spasticity reacts to every single strong emotion I feel and stores it in my body which my physical therapists never understood. I deep breathe as soon as I feel tension and that lessens the spasticity. Are people with stiff person syndrome allowed to take health supplements that calm the nervous system? I believe people with CP also lack GABA but I take supplements which can have a similar effect.

[Sunshine]

Oh Wow funnylegs, I didn’t know this about spastic Diplegia cerebral palsy. So interesting.

Tell me about the supplements you take to amplify your GABA if you have time. I can run it by my neuro.

[funnylegs4]

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Oh Wow funnylegs, I didn’t know this about spastic Diplegia cerebral palsy. So interesting.

Tell me about the supplements you take to amplify your GABA if you have time. I can run it by my neuro.

I take GABA by itself as a supplement but I also take something called "phosphatidylserine" . phosphatidylserine calms my brain and reduces my spasticity. My docs said it is good for any type of brain damage (Cerebral Palsy is brain damage) or neurologic issue. My friend also found some relief with phosphatidylserine when he had a stroke. It may be worth looking into.

[Sunshine]

I will def look into it. Got my IVIG infusion all day today. Will check it out tonight. Thanks :)

[funnylegs4]

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I will def look into it. Got my IVIG infusion all day today. Will check it out tonight. Thanks :)

You're very welcome. If I have any other tips I'll let you know. I forgot to mention, in spastic Cerebral Palsy the more we move around the less we have the over reactions.

[Sunshine]

Hm, that’s another great tip! So hard to find exercise that’s tolerable. Any hints are appreciate!

[funnylegs4]

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Hm, that’s another great tip! So hard to find exercise that’s tolerable. Any hints are appreciate!

I know for a fact that with spasticity any exercise you do needs to build lean muscle. Lean muscle is healthier for us. I find doing gentle slow dance like exercise to be helpful. Slow is usually better than fast movement with spastic muscles. I'll let you know if I think of more ASAP.