Spasmodic Dysphonia Bulletin Board

Pain with SD
  Archive
Posted by: Catherine1011 ®
02/14/2008, 08:34:08
I can't believe that most people who have this form of dystonia don't experience pain. I did a search in the archives and only found a few. Pain is my major complaint. I can actually feel the sore muscles at the back of my throat if I push on them. The more talking I do the more pain I have. It makes sense to me that if the muscles are tense and contracting that there will be pain. I've been told I'm an unusual case. I've tried the botox 4 times with limited success although it did take away the pain. I also had extensive speech therapy and now I'm trying Artane which is drying my mouth out something fierce. Anyone else with pain while speaking?



| Recommend | Alert   Current page

Replies to this message

Re: Pain with SD
Re: Pain with SD -- Catherine1011 Top of thread Archive
Posted by: hoarse whisperer ®
02/17/2008, 01:03:02
Hi Catherine,

Do you have AB or AD?

I have AB and I do have pain from the muscle spasms and from straining so much to talk. It's especially bad at night or when I overdo it. When I massage or push on the muscles, they are quite tender, sore, and painful.

I've gotten some relief from muscle relaxants, a (Bed Buddy) heat pad that warms up in the microwave and wraps around the neck and shoulders, and even just a long hot bath.

Another thing that helps me is deep tissue massage with a massage therapist and circumlaryngeal massage, which is included in my speech therapy sessions. I also purchased a massager (The Thumper) which was recommended by my speech therapist, It sells for about $200 at the Sharper Image, but I got mine for half that on eBay. I try to use it every night and it really does make a difference.

Good luck!

Lori

AB/SD and VCD since 2003
Dallas, Texas




| Recommend | Alert Where am I? Original message Top of thread Current page
Re: Pain with SD
Re: Pain with SD -- Catherine1011 Top of thread Archive
Posted by: tschaale ®
02/17/2008, 08:59:44
I don't normally have pain on a regular basis but I have noticed that when I read a book to my babies that my throat is sore at the end. It's also sore at the end of the day if I have done a lot of speaking. Is that what you are referring to?



| Recommend | Alert Where am I? Original message Top of thread Current page
Re: Pain with SD
Re: Re: Pain with SD -- tschaale Top of thread Archive
Posted by: Catherine1011 ®
02/17/2008, 17:29:08
Yes, I'm pretty much pain free in the morning, at least in my throat. But as soon as I start talking, I notice the strain and by the end of the day it's really hurting. I definitly use heating things around my neck and massage it myself. I pretty much have no social life because it gets so bad if I'm in a noisy atmosphere and have to talk. It's better if I talk in a higher voice around my family but it sounds weird so when I'm with other people I use my "normal" voice and then notice the trembling and pain.

I believe I have AB/SD, can't remember. I'm so happy to have email and still be able to keep in contact with my friends and family. But when there's a family get together I just know I'll be in pain afterwards and I love to talk. My mom just tells me not to talk but that's impossible for me. It feels like the Artane might be starting to work but I don't think I can tolerate the dryness in my mouth. It's also making me more anxious. Because of my Fibromyalgia I'm guessing that the pain is worse for me since my whole body is just super sensitive.




| Recommend | Alert Where am I? Original message Top of thread Current page
Re: Pain with SD
Re: Re: Pain with SD -- Catherine1011 Top of thread Archive
Posted by: hoarse whisperer ®
02/17/2008, 23:54:32
Do you get Botox injections? Although it doesn't make a huge improvement with my voice, it almost completely eliminates the muscle spasms. The relief is enormous.

Lori
AB/SD and VCD since 2003
Dallas, Texas




| Recommend | Alert Where am I? Original message Top of thread Current page
Re: Pain with SD
Re: Re: Pain with SD -- hoarse whisperer Top of thread Archive
Posted by: Catherine1011 ®
02/19/2008, 08:14:20
I don't anymore but did have them every 3 months for one year. I did have immediate relief from the pain but had a minnie mouse voice for about 3 weeks and then gradually the pain would come back and I was dying for another dose. I worked at that time in a cafeteria serving high schoolers and I basically couldn't do my job because of it. No one could hear me and it was very frustrating. So, I just stopped getting them.



| Recommend | Alert Where am I? Original message Top of thread Current page