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Patients Focal dystonia

Do you use Botox injections? Do you inject botulinum toxin?
1

Member Carenity
Posted on

I have tried Botox injections several times with different doctors for my  myoclonic dystonia which is in my trunk and intercostal areas.  While it did lessen some of the spasms it has had zero effect on my pain level and I believe has made my pain worse 

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@Hidden username thank you for responding... is the L-dopa for spasms? or what is the beneficial effects that it is supposed to do and what beneficial effects do you actually feel? Which brand / product do you use also?

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@Hidden username I agree... it is wearing off and not as effective and pain - little if anything.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@Hidden username do you use anything for pain and the spasms now that you are not following botox injections?

Do you use Botox injections? Do you inject botulinum toxin?
1

Member Carenity
Posted on

@Hidden username 

I switch between benzodiazepines Ativan, Valium, Xanax and klonapin as I very quickly get tolerant to meds. Soma as my regular go to muscle relaxant although I do try out different varieties occasionally this seems to be more helpful than others when it works and unfortunately after over twenty years of dealing with pain I have recently had to give in and go the opioid route which still has minimal effect and at increasing doses. 

Luckily for me I don’t seem to have a mentaly addictive personality and really don’t experience a “high” unlike the weak junkies who make legitimate pain patients lives more difficult. If I need a mental break I vape a small amount of medical marijuana and that seems to put my mindset as it should be as in it could always be worse sooooo!

Do you use Botox injections? Do you inject botulinum toxin?
1

Member Carenity
Posted on

I have had to come to the realization that I will never be pain free and have probably never been so I do what I can and accept that this is my life. 

Pain, insomnia, inability to swallow at times which has led to extreme weight loss but great muscle tone, twitching, breathing hitches , inability to concentrate and stay focused and quite frankly being a  bitch sometimes to the people who love me the most. 

The one thing I can say is that I like me, for the most part regardless of I’m sure some people’s opinions and if more people could say the same we would all be better off

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

@Hidden username‍ have you ever though of or tried CBD or cannabis?

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on

I have. Still experimenring with different ratios and tinctures.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity • Community manager
Posted on

@Hidden username‍ how have the botox injections been working since you have begun receiving them? Are you still having them? Or you using medical marijuana in addition? Look forward to hearing an update from you.

Do you use Botox injections? Do you inject botulinum toxin?
Member Carenity
Posted on
The first time I had Botox injections was about 3 years ago. They did it twice at the VA but was not EMG guided. I'm scheduled for tomorrow for the EMG guided. The medical marijuana is on hold because it was affecting my short-term memory. So I will update on the Botox injections after a period of time to let everybody know how they worked. Thank you