Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Hi my name is June Gray and my husband Charlie has PLS and just last night the telephone rang right where he sits in his wheelchair and it startled him so badley he spilt his tea all over him as he was getting ready to have a sip out of his FSU cup and it is so aggravating to him - it only happens every now and then - last nite we decided to move the telephone away from him but that doesn't help or solve his problem as sometimes people walk in or etc and it startles him something awful and it is so frustrating to him, but we are learning to live with it I think.......God Bless June and Charlie is Tallahassee, Fla. Home of the Florida State Seminoles........yeah!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Oh yes, we all have tales about startle reflex, I'm sure... I've had to change clothes a few times, had to buy a new key board and am unable to do anything after a startle...my husband always tells everyone to let me know when they come down the hall to my room...i can hear them in the living room but if someone comes in and speaks without my knowing I jump a mile... But then they let me know they're coming with a yell (most of them) and I jump out of my skin.... A cup with a lid does not help me... I choke when I'm not able to hold my head down when swallowing as the air passage is open with the head up or tilted back... I don't believe any meds can help startle reflex.... I take clonazapam for emotional liability...other words,, I don't cry at the drop of a hat... take neuronten for spasticity.... right now I'm on an even keel and hope to stay there for a long while.. HAPPY 4TH TO ALL Jeanette from Tampa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 maureen, I have an extreme startle reflex. If the phone rings look out because what ever I have in my hand goes flying. Its not a pretty if I'm putting on my eyebrows or lipstick!!.....................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Maureen I startle. I only take Zanaflex to calm it. I don't just startle from noise. I startle if I catch hold of something very hot or cold. Two weeks ago elevator doors closed on me and didn't release caused a bad startle and I fell to the ground as the door finally released. I asked for something else to calm this and my anxiety of falling but Cleveland Clinic said since I have a severe neuro reaction to SSRIs they are afraid to start anything on me in that realm. So I guess I'll be Snow White's eight dwarf....Jumpy. Eva in WV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Thank you to all of you who responded to my post. After 7 years I finally have found people that have the same problem as me. Sudden sounds or sudden movement can throw me off balance. The startle reflex was the second symptom to show up in the early years. I was prescribed clonzapem and found it helped immensely. If i dont take it , I ntoice the difference big time. maureen > Mike gray mentioned that his startle reflex was under control with > Klonopin. I also have an exagerrated startle reflex and it is under > control with rivotril (clonazepem) but sometimes when i hear an > unexpected sound my leg or arm can still shoot out and i almost fall. > I believe that this overexaggerated startle reflex is my stumbling > block (pardon the pun) to being able to walk alone with just my > walking stick. I know that i would be more stable. My neuro wants me > to have an anti-gad blood test to test for Stiffman Syndrome. I had > this same test 7 years ago and it came back all normal. I am positive > that i dont have Stiffman Syndrome as does my Neuro, because I know > that their symptoms are absolutely dreadful, but he wants to rule it > out for sure. > > My question is does anyone else have the over active startle reflex?? > expecially when you hear unexpected lound sounds?? and is an over > active startle reflex part and parcel of HSP or PLS. > > thanks > Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 I also have the startle reflex and, per my neuro, it is part and parcel of PLS. Sue in Calif > Mike gray mentioned that his startle reflex was under control with > Klonopin. I also have an exagerrated startle reflex and it is under > control with rivotril (clonazepem) but sometimes when i hear an > unexpected sound my leg or arm can still shoot out and i almost fall. > I believe that this overexaggerated startle reflex is my stumbling > block (pardon the pun) to being able to walk alone with just my > walking stick. I know that i would be more stable. My neuro wants me > to have an anti-gad blood test to test for Stiffman Syndrome. I had > this same test 7 years ago and it came back all normal. I am positive > that i dont have Stiffman Syndrome as does my Neuro, because I know > that their symptoms are absolutely dreadful, but he wants to rule it > out for sure. > > My question is does anyone else have the over active startle reflex?? > expecially when you hear unexpected lound sounds?? and is an over > active startle reflex part and parcel of HSP or PLS. > > thanks > Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 I had a lot of trouble with the phone startling me (and yes, several cups of coffee ended up in my lap). So we have turned off all the phones but one and that one is not near where I usually am. It has helped a lot. And my husband would start to talk to me and it would startle me so he is trying to quitely let me know he is coming. As you said, we live and learn. Sue in Calif > Hi my name is June Gray and my husband Charlie has PLS and just last night > the telephone rang right where he sits in his wheelchair and it startled him so > badley he spilt his tea all over him as he was getting ready to have a sip out > of his FSU cup and it is so aggravating to him - it only happens every now > and then - last nite we decided to move the telephone away from him but that > doesn't help or solve his problem as sometimes people walk in or etc and it > startles him something awful and it is so frustrating to him, but we are learning > to live with it I think.......God Bless June and Charlie is Tallahassee, > Fla. Home of the Florida State Seminoles........yeah!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Startle reflex is one reason I don't drive much any more. I only drive to the post office, bank, and ect. and they are only a mile away. I have a phone right by my computer and it was really giving me fits. We did need a new phone and we bought one that different tones. The tone I use is a musical one and really works good for me. But any other noise or sudden movement really startles me. There is one other thing that I think goes along with the startle reflex that I haven't seen any one address. That is the sense of touch with your tongue and lips to heat. I can't drink any thing as hot like I used to. Someone gave me a cup of tea one day and I made the mistake of not checking the tempeture. When my lips and tongue hit the cup and tea I almost jumped out of the chair spilling drink on me. Cold drink doesn't bother me but hot does. But when you talk about weather then cold really bothers me but heat doesn't. Dave, PLS, OH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Maureen, Klonopin is also clonazepam. Sounds like we are taking the same thing. I'm on 7 mgs per day in divided doses - 1mg am, 2mgs at noon, 1mg at 6pm and 3mgs at bedtime. How much are you taking? Also, I still have some of the startle reflex occasionally, but I no longer fall automatically. I thank God daily for that. Mike Gray Startle relfex > Mike gray mentioned that his startle reflex was under control with > Klonopin. I also have an exagerrated startle reflex and it is under > control with rivotril (clonazepem) but sometimes when i hear an > unexpected sound my leg or arm can still shoot out and i almost fall. > I believe that this overexaggerated startle reflex is my stumbling > block (pardon the pun) to being able to walk alone with just my > walking stick. I know that i would be more stable. My neuro wants me > to have an anti-gad blood test to test for Stiffman Syndrome. I had > this same test 7 years ago and it came back all normal. I am positive > that i dont have Stiffman Syndrome as does my Neuro, because I know > that their symptoms are absolutely dreadful, but he wants to rule it > out for sure. > > My question is does anyone else have the over active startle reflex?? > expecially when you hear unexpected lound sounds?? and is an over > active startle reflex part and parcel of HSP or PLS. > > thanks > Maureen > > > > > > Quote Link to comment Share on other sites More sharing options...
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