+- SPD Support Forum (http://spdsupport.org/forum)
+-- Forum: General Forums (http://spdsupport.org/forum/forum-1.html)
+--- Forum: Introductions (http://spdsupport.org/forum/forum-3.html)
+--- Thread: So glad to find this forum! (/thread-644.html)
So glad to find this forum! - Amygdalia - 06-13-2012
I believe I've suffered from SPD my entire life, but it seems to be worsening over time. I have chronic insomnia because of it. Every small noise sets my body to alert. All of my senses are affected to some degree, though noise seems to be the worst. I have three amazing children, but I'm often terse with them because I can't handle the noises or the messes that they make.
I've never been able to find anyone to help me . . . the closest was a Dr. who prescribed Kapvay. I had terrible side effects and no positive effect.
So here I am, beginning my exploration of this forum, and hoping to find some support, ideas, and ideally a local Dr who can help me through this.
RE: So glad to find this forum! - LynnNBoys - 06-13-2012
Hi, Amy! Welcome! I'm glad you found us.
I've been learning about my own SPD tendencies after my older son was diagnosed in 2008. Just today, it took everything I had to not meltdown. The dog was barking because the doorbell rang, my younger son was watching TV, and the fan over the stove was going as I was making dinner. I was frazzled and exhausted from trying to not have a meltdown from all the sounds.
I get that way if I'm with a group of more than 6 people at a time for too long. Just get too overwhelmed.
What kind of med is Kapvay? Meds don't work for SPD, but can use anti-anxiety meds to help ease the anxiety from the SPD effects. At least with children, OT is recommended.
RE: So glad to find this forum! - Amygdalia - 06-14-2012
Hi Lynn,
Thank you for responding. That certainly sounds like something that would happen to me! But what I've discovered is that there are some situations in which I do better than others. If I'm in control of the situation, in some way, I can handle it. For example, when we have our annual holiday party. I LOVE being surrounded by the people in my life, in that situation. Another example would be when I'm working. Mostly I'm a stay at home mom, though I have several other hats. I started working in a winery several months ago, and I can usually handle the noise. What I cannot do is discriminate sounds in a large crowd, so unfortunately I sometimes don't hear what is being said. This happens at home, as well. The kids had PBS on yesterday, and my husband was trying to tell me something from the other room. I knew he was talking to me, but I could not understand what he was saying.
I also get . . . internal noise? If that makes sense. Cannot shut up the brain. I'll hear a song, or even think of a song, and nothing will make the earworm go away.
Kapvay is clonidine hydrochloride. It's a blood pressure med (so I had to work with my cardiologist as well, since I have high blood pressure) and is also used (I've just read) for treating ADHD in kids. That was NOT what my psychiatrist had told me. *sigh* She said it was used for kids with sensory issues, but she didn't know how it would work for an adult. Well . . . the answer is . . . not for this one. Sometimes I used to be able to use my Ativan to calm myself when I'd get completely sensory overloaded, or just overwhelmed. It doesn't work anymore, though.
I haven't been able to find an OT who works with adults in this area . . . I've posted in another forum here to see whether anyone might be able to point me in the right direction. I'm ready to make some changes. I HAVE to make some changes.
Thanks again for responding. It really helps to know there are others out there who are dealing with the same things. Particularly the everyday "there's noise in my house and I can't handle it" stuff that makes me feel like a crummy Mom.
Amy
RE: So glad to find this forum! - LAC1961 - 07-22-2012
(06-14-2012, 01:00 PM)Amygdalia Wrote: Hi Lynn,
Thank you for responding. That certainly sounds like something that would happen to me! But what I've discovered is that there are some situations in which I do better than others. If I'm in control of the situation, in some way, I can handle it. For example, when we have our annual holiday party. I LOVE being surrounded by the people in my life, in that situation. Another example would be when I'm working. Mostly I'm a stay at home mom, though I have several other hats. I started working in a winery several months ago, and I can usually handle the noise. What I cannot do is discriminate sounds in a large crowd, so unfortunately I sometimes don't hear what is being said. This happens at home, as well. The kids had PBS on yesterday, and my husband was trying to tell me something from the other room. I knew he was talking to me, but I could not understand what he was saying.
I also get . . . internal noise? If that makes sense. Cannot shut up the brain. I'll hear a song, or even think of a song, and nothing will make the earworm go away.
Kapvay is clonidine hydrochloride. It's a blood pressure med (so I had to work with my cardiologist as well, since I have high blood pressure) and is also used (I've just read) for treating ADHD in kids. That was NOT what my psychiatrist had told me. *sigh* She said it was used for kids with sensory issues, but she didn't know how it would work for an adult. Well . . . the answer is . . . not for this one. Sometimes I used to be able to use my Ativan to calm myself when I'd get completely sensory overloaded, or just overwhelmed. It doesn't work anymore, though.
I haven't been able to find an OT who works with adults in this area . . . I've posted in another forum here to see whether anyone might be able to point me in the right direction. I'm ready to make some changes. I HAVE to make some changes.
Thanks again for responding. It really helps to know there are others out there who are dealing with the same things. Particularly the everyday "there's noise in my house and I can't handle it" stuff that makes me feel like a crummy Mom.
Amy
Have you checked out:
sensationalbrain.com
?
RE: So glad to find this forum! - Heather - 07-23-2012
Hello and welcome to the forums
My daughter is 2 and suffers from insomnia just like you do. We can sneeze 2 miles away and it will still wake her up. So you are not alone! We are here for you
RE: So glad to find this forum! - Amygdalia - 07-26-2012
Thank you, Heather! Oh boy, that sounds like ME! Last night was really rough. :-( The sheets and pillowcases and my hair were driving me crazy, and the fan I use for white noise had a wobbling sound. When I finally fell asleep I had angry "I'm not sleeping" dreams and I kept getting woken up (I'm not sure if the sounds I thought I heard were real or in my dreams, but I kept hearing a single "bump" against a wall).
I recently weaned myself off the Ativan my Dr. had told me to take every night for sleep, because it had stopped working. Someone here recommended a link about a month ago, to help me find a local Dr. that works with adult SPD. I found a neurotherapist in the area and sent an email but never heard back. I need to find the name again and call.
Everything is so much harder when I'm tired. And I'm ALWAYS tired!
What an upbeat reply, eh?
Thank you, though . . . my husband may not always "get" what I'm dealing with (though he does try) but it truly helps to know I'm not alone in what I experience.
Amy(07-23-2012, 09:43 AM)heatherv112506 Wrote: Hello and welcome to the forums
My daughter is 2 and suffers from insomnia just like you do. We can sneeze 2 miles away and it will still wake her up. So you are not alone! We are here for you