[dreambeliever128]

I have no memory and some of you may have talked about this before on here but I need to have some answers.

Ever since I talked to the Surgeon I have not been able to get it out of my mind about what he said about not being able to stop the RSD from spreading to the neck and head from the VNS surgery.

After living with RSD for all of these years it scares me to death to think that we could spread it to my neck/head area.

I have it in the back of my neck and have had to have triggerpoint injections to hold my head up two different times but I'm scared about maybe causing it in these other areas.

I was wondering if any of you deal with the migraines or trigeminal pain or other pains in the face area. I do recall someone having it from teeth work.

I would appreciate any input and how they may have calmed if down if they did in the face area.

Thanks,
Ada

[LMJunior]

Hi Ada,
I suffer from migraines too. I have RSD in my upper and lower extremities. One thing I feel has helped me with the RSD is Tai Chi exercise. My doctor recommended to me. I use to do aerobic exercise,but since I developed migraine headaches I haven't been able to do it. My doctor did suggest to me is that I learn from a instructor how to do the Tai Chi. I took a Tai Chi course once a week for 8 weeks and It was great. Tai Chi is very gentle so I have been able to do it and it doesn't bring on a migraine. When my RSD is flared up in my hands I use play-doh that is very helpful too. I start out very slow,but I try to build it up for so many minutes. I hope some of these suggestions are helpful. Take Care hope your having a low pain day.

Laraine

[loretta]

Hi Ada,
I just joined this board recently. I have had RSD for 10 years. I now have it full body, including the left trigeminal nerve. The pain is bad at the temple and have numbness on the left side down my jaw line over to the left part of lips. my lips are noticble when I use lip liner, the left half of the lower lip is drawn inward. The pain comes and goes. I've read it's rare to have it on both sides. I've read one of the sites, that an attorney had surgery on the trigeminal nerve and regretted it big time. I've read that if a person doesn't get help in the first 6 months, RSD pretty much travels on it's own-different for each individual. I'm very sorry you have it-how long? I too have bad headaches. also have bad pain in neck. I have a wonderful Dr. I see once a month. He manages my meds. mental health, etc. He has degrees in Neurology, Pharmacology, and is a Phschiatrist. I'm on Vicodin, Neuroton, although we are going to try and switch over to Lyrica. Many have switched over to this new drug, many get better relief from nerve pain. I'm on two blood pressure meds (double dose )
two anti-depressants (double dose) anti-depressants help with nerve pain.
lorazepam-anti-anxiety pill to help nerve pain for getting worse,and ambien CR for sleep. RSD affects the Limbic part of your brain. The Limbic part of your brain plays a part in short-term memory- all of us have short-term memory loss. Do you have complete membory loss? Limbic system affects decision making, emotions, and I forget what else. How long have you had RSD? What started it? Mine started with breast surgery-left side and benign.
Immediately following the surgery, left arm swelled twice the size, followed by frozen shoulder-about 100 pt treatments. travelled to right shoulder then right had frozen. had therapy, but it is permanently frozen to a claw. Now in right hand and both feet, legs. For me swimming is the best exercise I can do. We live in Scottsdale, AZ and have a pool. I also belong to a club with heated pool. It's important for the water to be warm at least 86-87 degrees.
I exercise daily-light as I'm very tired and in pain most of the time. I force myself out of bed each day. I'm 59. One daughter-married. She is 27 now.
Distraction Therapy is good. I just put a CD player in my (room) listening to music is such a mood lifter. just bought a 8 pack of 50's 60's music/ funny DVD's are good. Reading uplifting books and magazines. It's difficult dealing with 24/7 pain. We have an RSD support group here in Phoenix, actually two locations. And I have a couple of good friends with the monster I see or talk to every week. I preventative measures for dental work. I need to sign off now. Please write me, how long have you been dealing with this, what kind of support do you have. my best to you, Sincerely, loretta

[dreambeliever128]

I knew there were some that have it in their face. I am scheduled for surgery on April 11th and it's the one surgery that I am looking forward to for the RSD but wondering what it's going to do for the RSD.

Loretta, I have had RSD since around 2000 diagnosed from TOS surgery but i believe I had it a few years before that. I fell several times and ended up with TOS and I believe the RSD came with it in 97 and 98. The surgery just brought it out more.

My short term memory is gone. I was trying to think of the word leather yesterday when I was talking about a coat took me forever to come up with that word.

I know an older man that had that trigeminal surgery and he came out 10 times worse. I actually told him not to do it. He didn't have much knowledge on RSD even though he had it so they just don't know the extent of what happens sometimes from certain surgeries.

It is important to get help with the RSD in the first 6 months but I have seen several that have had good results with blocks after years of having it.

I have it in my right arm, hand, right side, pelvic area, right foot up to my hip, my neck, back and I guess pretty much full bodied. I didn't know I had it in my neck and back until my Physical Therapist diagnosed it there.

Like you I have a great Dr. He deals with my PM, my councelling and everything else I live with. He's a PCP and Sports medicine Dr. and has learning in councelling. He's been stuck with me since 90.

I lived in PT for over 3 years too. 2 times a week, I finally got tired of going. I was going for Fibro, RSD, TOS, and back problems.

We had an RSD group here but no one was able to go. Just not good treatment around here for most of the RSDers.

I walk everyday I can. I have been walking about 3 to 4 miles lately and then come home and dealing with CFS again.

I've had pain for 20 years, first I felt like I was dieing until I got all of the tumors out of me then really felt like I was going to die from the RSD pain.

A lot of us are 50's and 60's fans on here I believe. I love all of the music from those days. I graduated in 69 and the years before that were the best years I think in music. You could understand what the singer was saying and every other word wasn't a cuss word. I listen to music when I walk.

Laraine, I'm glad you found our group. We have a great bunch here.

I live in an area where I doubt that anyone knows what Tai Chi is. I've always thought that Colorado was so far behind times they would never catch up. Someone mentioned accupuncture to me. We don't have any of them in our 3 surrounding towns either.

I am hoping that I don't end up with the RSD in my face from this surgery. They can't do a block so it's a possibility but I have to go through with the surgery. It's either keep the depression or deal with the RSD. Don't know.

Thanks girls,
Ada

[Vicc]

Hi Ada,

There is a disorder called anesthesia dolorosa, caused by anesthesias used for surgeries for trigeminal neuralgia and any surgery in which the trigeminal nerve may be affected. This may be the cause of your friend's pain, or anyone else who had had surgeies like the ones I mentioned.

If you Google "anesthesia dolorosa", you will find some, but not a lot of information about this disorder. Interestingly, many of the meds used to treat pain in RSD are also used for this disorder...Vic

[nico45]

Hi my name is nicolas and my mom has rsd in her left side but lately she has been getting migraines and im worried that she may have rsd in her head. can anyone pls answer some questions i have?

[daniella]

Originally Posted by nico45

Hi my name is nicolas and my mom has rsd in her left side but lately she has been getting migraines and im worried that she may have rsd in her head. can anyone pls answer some questions i have?

Hi. I am sorry about your mom. I may have rsd in my eyes but it also causes sevre head pain at times. Has your mom spoken to the person who is treating her for rsd about this? Has she had mri of her brain and or been for testing to rule out other conditions that could cause this? Has she tried meds that help with migraine pain?

[kathy d]

Hi Ada,
Yep that was me with the "teeth work." I have had severe jaw pain and I know for years I have tingling and still do around my mouth when I talk for a few minutes or so. I've just dealt with it as part of the rsd. When I get a teeth cleaning I suffer for days from severe mouth pain too. I am taking a multi-vitamin and calcium now and the calcium seems to be helping me thank goodness. The past few weeks were real bad with it as I can't chew on my back teeth so I've been eating much softer food and staying away from anything hard that will aggrevate my jaw/teeth. It's not a good way to lose weight for sure haha. Sometimes, when the pain is pounding I will lie down with an ice pack on my mouth and it helps. Strange thing is that I can't really lie on my right side now as my facial pain worsens and when I put the ice pack on it it somehow lessens the pain. Our bodies go through so much as someone put it earlier here. Well, back to bed for me. This is the most I've posted in months here due to severe pain. Thanks all for your support over the months. You all are the best!!
take care,
kathy d

[Reddawn600]

My RSD began in the neck/head area most likely due either to disc herniations, a fall from a tree or neck muscle strains. I guess I'll never know but all of my symptoms began there and as my Ketamine treatment continues, that area has been the most resistant.

The RSD spread through my entire left side and I'm happy to say the ketamine has almost completely reduced it to that area now and reduced the pain tremendously.

Do you have any symptoms that concern you at this point and make you think it's spreading there?

Migraines became a huge problem for me along with neck/ shoulder pain and intolerance to any light in my left. eye.
I did also have burning and eye pain in both eyes on a nightly basis despite no eye problems.

[Abbie]

Hi Nicolas and Welcome to Neurotalk!!

I'm sorry to hear of your mom's pain but you've found a great place with wonderful, caring people!!! There is a wealth of knowledge here.

I have RSD full body... that includes my head.

Does your mom have any other symptoms other than the migraine in her head? I'm not in any way trying to be-little the migraine!! Sounds strange...but I'm hoping it's just a migraine and not a spread of RSD... I wouldn't wish an RSD spread on anyone.

When RSD spread to my head it started out as Ocular migraines...with Aura's. I now have full blown migraines.

Then the sensitivity to touch, temperature, wind, etc...the same as the rest of my body followed soon after.

I also have the burning, stabbing, ice cold feeling in my eyes, nose, mouth, lips, ears, scalp.

Everytime the wind blows my scalp feels like it is on fire with each little movement of my hair.

I have to keep my eyes moist because if they dry even the slightest...the feel like I've been in the desert for days...and are full of cactus needles...

I can't eat or drink anything that is colder or warmer than room temperature... it feels like I'm eating razor blades or needles.

I sincerely wish your mom and you the best...
gentle hugs...
Abbie