This is about botox, but not about migraines, so I apologize if this is the wrong place. Seemed like you migraine sufferers would know the most about botox, and I need some advice from people with first-hand experience.
My jaw problem has officially been dubbed "oromandibular dystonia." The nerves and muscles in the jaw area are reacting abnormally to stimuli; they overreact, causing pain, spasms, inability to open my mouth, etc.
The ndoc wants to botox. I have looked into the research on using botox for oromandibular dystonia, and there is a fair amount of evidence that the treatment is effective. However, I am worried unexpected effects.
Most people with oromandibular dystonia who have received this treatment have difficulty speaking and swallowing, in addition to my problems. I am fortunate to not have these problems. Especially fortunate because my job requires speaking to large groups a lot. This requires considerable strength and stamina of the muscles involved in speech. In addition, the groups are sometimes non-native speakers of English, which means I have to not just project clearly, but with precise articulation. It can be tiring even without any jaw/mouth problems at all; right now, I deal by running on adrenaline until it's over and then drugging up.
So, when I look at an atlas of facial muscles, I see that several muscles that are heavily involved in speaking are very close/underlying the muscles that have to be shot with botox. I have told my doctor about this concern and it was dismissed immediately...in a not very reassuring way--just "do the botox," with no explanation. (She's a good doc. Normally, she is not like this--she was having a very bad day and had a very painful injury herself. She was out of the office until the day of my appt. and is out again, I believe because of her injury.)
I am prattling on and on because I'm not sure what I am asking, exactly, or what you need to know. I guess my questions are:
--How specific are botox injections? Does the serum diffuse, or stay very local?
--How paralyzed are the muscles? On a scale of 1 to 10, where 1 is normal movement and 10 is complete paralysis?
--Has anyone had the following muscles shot up: masseter, medial pterygoid, lateral pterygoid, buccinator? What was it like?
--I'm pretty sure someone has had at least some of these nerves hit: trigeminal, facial, and spinal accessory--what's that like?
--Has anyone experienced difficulty in speaking, and what was that like? Anyone, by any chance, who has to speak to large groups (35-150), sometimes with a mic, but sometimes not?
Ok, way long, and I'm not even sure this belongs here! I'll shut up and thanks for any answers or stories!
Botox And Not Migraines
Started by
Nutter 6
, Oct 19 2009 07:05 AM
2 replies to this topic
#1
Nutter 6
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Amateur Psychopharmacologist
- Diagnoses:see sig
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- Location:In the Village
Posted 19 October 2009 - 07:05 AM
Dx: OCD, GAD, PD, ADHD, Pain due to jaw injury hyperirritable trigeminal, facial, and spinal accessory nerves following jaw injury (Two Three Four Five months now, and counting...)
Psycho Rx: Cymbalta, 90; Vyvanse, 30; Klonopin, PRN, up to 1.5 x 3;
everchanging Pain RX: Neurontin, 400; Acetaminophen 650 x 3 (sometimes with codeine); Voltaren, PRN; Physio, Upper and lower jaws splinted, Lots and lots of ice...some nutters wear tin foil hats; I like ice hats...
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'But I don’t want to go among mad people,' Alice remarked.
'Oh, you can’t help that,' said the Cat. 'We’re all mad here. I’m mad. You’re mad.'
'How do you know I’m mad?' said Alice.
'You must be,” said the Cat. 'or you wouldn’t have come here.'
Psycho Rx: Cymbalta, 90; Vyvanse, 30; Klonopin, PRN, up to 1.5 x 3;
everchanging Pain RX: Neurontin, 400; Acetaminophen 650 x 3 (sometimes with codeine); Voltaren, PRN; Physio, Upper and lower jaws splinted, Lots and lots of ice...some nutters wear tin foil hats; I like ice hats...
---
'But I don’t want to go among mad people,' Alice remarked.
'Oh, you can’t help that,' said the Cat. 'We’re all mad here. I’m mad. You’re mad.'
'How do you know I’m mad?' said Alice.
'You must be,” said the Cat. 'or you wouldn’t have come here.'
#2
therapeuticbrigg84
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- Banned
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- 716 posts
Would-be Neurologist
- Diagnoses:generalized anxiety, social anxiety, fibro/insomnia (schizotypal catch all)
- Current Meds:GBP 300mg, HCTZ 25mg, ARTANE 2-4mg PRN, TRAZ 50mg PRN, fish oil
- Location:mass
Posted 19 October 2009 - 08:48 AM
i wish i could help but i never got botox, but i seem to be having the same type of symptoms but all my docs wont do much, except tell me to stay off the internet-lol. my symptoms are like the throat muscles reacting to abnormal stimuli and spasming like you. and it even runs up the side of my head to my temples. it really sucks! but anyways im off to see my Ear Nose and throat doctor today, wish me luck!
i think for the most part you hafta act dumb with doctors to actually let them help u with anything.
i think for the most part you hafta act dumb with doctors to actually let them help u with anything.
dx: schizotypal personality disorder, dystonic neck and back pain, GERD. a bit of TD, akathisia, dysmorphic thoughts, affect is questionable
seroquel and inderal 60mg made me fatigued/ depressed. may hafta try lopressor or bisoprolol
inderal interacts with ssris and anti-psychs.
success HCTZ not only lowers my blood pressure and pulse more effectively. but it also has helped with the headaches ive been having. i should see a doctor about this.
[color="#0000FF"]rx: klonopin .5-1 prn, omega 3 fish oil, vitamin D3 iu, albuterol sulfate inhaler, magnesium hydroxide(for the constipationg)
in flux: seroquel 50mg
up and coming: nuvigil
looking into injectables.
artane 2 mg PRN(rare), trazodone 50mg PRN, lyrica PRN?
#3
In_Remission_Daisy
In_Remission_Daisy
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Posted 21 October 2009 - 01:30 PM
This is about botox, but not about migraines, so I apologize if this is the wrong place. Seemed like you migraine sufferers would know the most about botox, and I need some advice from people with first-hand experience.
My jaw problem has officially been dubbed "oromandibular dystonia." The nerves and muscles in the jaw area are reacting abnormally to stimuli; they overreact, causing pain, spasms, inability to open my mouth, etc.
The ndoc wants to botox. I have looked into the research on using botox for oromandibular dystonia, and there is a fair amount of evidence that the treatment is effective. However, I am worried unexpected effects.
Most people with oromandibular dystonia who have received this treatment have difficulty speaking and swallowing, in addition to my problems. I am fortunate to not have these problems. Especially fortunate because my job requires speaking to large groups a lot. This requires considerable strength and stamina of the muscles involved in speech. In addition, the groups are sometimes non-native speakers of English, which means I have to not just project clearly, but with precise articulation. It can be tiring even without any jaw/mouth problems at all; right now, I deal by running on adrenaline until it's over and then drugging up.
So, when I look at an atlas of facial muscles, I see that several muscles that are heavily involved in speaking are very close/underlying the muscles that have to be shot with botox. I have told my doctor about this concern and it was dismissed immediately...in a not very reassuring way--just "do the botox," with no explanation. (She's a good doc. Normally, she is not like this--she was having a very bad day and had a very painful injury herself. She was out of the office until the day of my appt. and is out again, I believe because of her injury.)
I am prattling on and on because I'm not sure what I am asking, exactly, or what you need to know. I guess my questions are:
--How specific are botox injections? Does the serum diffuse, or stay very local?
--How paralyzed are the muscles? On a scale of 1 to 10, where 1 is normal movement and 10 is complete paralysis?
--Has anyone had the following muscles shot up: masseter, medial pterygoid, lateral pterygoid, buccinator? What was it like?
--I'm pretty sure someone has had at least some of these nerves hit: trigeminal, facial, and spinal accessory--what's that like?
--Has anyone experienced difficulty in speaking, and what was that like? Anyone, by any chance, who has to speak to large groups (35-150), sometimes with a mic, but sometimes not?
Ok, way long, and I'm not even sure this belongs here! I'll shut up and thanks for any answers or stories!
My jaw pain is due to atypical facial pain and is only a portion of the problem but shortly before I needed a root canal, my neurologist gave me a Botox injection in my cheek because dental work is a horrible trigger for me. I had no problems using my jaw and it definitely made the root canal easier. My jaw didn't feel or work any differently because of the Botox.
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