It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-27-2008, 04:20 AM   #1
Junior Member
(female)
 
Join Date: Feb 2008
Location: australia
Posts: 18
vital33 HB User
palatal & pharyngeal & laryngeal myoclonus...

Hi,
Im relatively new to the boards and have a complicated history.
I have recently been diagnosed by nasoendoscopy and videofluoroscopy to have palatal, pharyngeal and laryngeal myoclonus. Also the esophagus is spasming like the myoclonus.

I already knew I had really bad spasms in throat etc. THere is also neuropathic pain (trigeminal) and burning in oesophagus.

Really bad spots CRAMP & BURNS are concurrent upper and lower sphincters in oesophagus and along scarred area at back of palate on right side, same side myoclonus developed from an ear clicking 14 years ago after an infection and then an upper R wisdom tooth extraction with associated problems post extraction.
Any one else on the boards with these problems.? Also dysautonomia.

It seems to be progressive and going to left side. ..with the burning

 
Old 09-24-2008, 05:48 PM   #2
Newbie
(female)
 
Join Date: Sep 2008
Location: bk,ny
Posts: 3
charr093 HB User
Re: palatal & pharyngeal & laryngeal myoclonus...

i have palatal mynoclonus. im 23 and ive had it since i was around 12 or 13. I have had 2 surgeries and they were not succesful. Ive also had a tube place din one of my ears, and that didnt help either. Ive received botox treatments, and they are supposed to paralyze my palate and help with the popping i have in my ears, however my condition is so severe, i have to receive the injections every 3 weeks as opposed to every 3 months. I'm tired of living with this but my doctor told me i will most likely have this for the rest of my life :-(

 
Sponsors Lightbulb
   
Old 09-25-2008, 07:04 AM   #3
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: brockton, ma, usa
Posts: 640
cindys601 HB User
Re: palatal & pharyngeal & laryngeal myoclonus...

Hi Vital and Char~

What you 2 are dealing with is certainly a mouthful. I dont truly understand what it all means but I wanted to chime in and offer my support by introducing myself here.

Take care

Cindy

 
Old 09-25-2008, 08:47 PM   #4
Junior Member
(female)
 
Join Date: Feb 2008
Location: australia
Posts: 18
vital33 HB User
Re: palatal & pharyngeal & laryngeal myoclonus...

Thanks for replying charr. im 48 & I'm sorry you have this and its really difficult to treat from all the research I've done. I came across many articles where they try different combinations of medicines, and even then, they don't work very well. I was offered botox but refused. I read one research paper where someone your age was cured after having their adenoids removed...go figure! My neurologist just suggested Keppra and said I should research it to see if I want to try it.

What meds are you on for it?

But As I'm already on Lyrica 75 mg twice daily, 5mg Valium twice daily,Mitrazapine 30mg PM (this contains a superbenadryl anti-histamine which seems to help me). I also take Zantac 12 hr one a day.
I tend to be wary of changing what I'm on at the moment..since I react unpredicatably to changes in meds.

Do you know what caused yours?

Originally I was on Clonazepam 0.5mg twice daily and I was really bad on this..it was the only medication I was on. MY body was histaminic and inflammed... I was toxic from this medication.and constantly in withdrawal from it without knowing it....I was told I also had trigeminal neuropathy,fibromyalgia, complex regional pain syndrome etc...But these conditions are part of the arachnoiditis (medically or dental treatment/therapy caused nerve injury) syndrome.

The myoclonus was in my palate and throat all the time. It was so bad on clonazepam that I was having choking fits. I have trouble swallowing on the right side, nerve/ muscle damage there. I suspect have supra- and sub-glottic stenosis on right side (becomes clearly evident when don't use partial denture and if on hardly any meds... ..the myoclonus then becomes a burning-cramp on right side face and a burning-cramp on right side neck/throat. Laryngo-pharyngeal reflux experienced on right side...very frightening).

Do you notice the spasms increase in intensity(amplitude) and frequency(speed) when your adrenaline(epinephrine) levels go up, say, during exercise, walking?

For me,it happens while im just sitting still, just opening my mouth increases them or moving my neck...its always there but I do everything possible to minimize it. Like don't eat things that will make it worse eg. no coffee, I hardly eat any packaged foods and stick to anti-inflammatory foods as much as possible like salmon, tuna, lots of veges but no nightshades.Anything that increases spasm / even peristalsis in the body seems to affect it, in my case, so I try to keep as regular as possible, which isn't easy on the meds Im on...have yogurt/ greens every day etc. Also I pace myself, so I do something active and then rest etc.

Swallowing & talking can be affected...i'm trying to stay on top of this thing but its not easy...docs don't know what to do either. I've had it progressing for 14 years.
Its good to hear from someone else with this...mine originally started as some clicking in right ear but now has spread to become pharyngeal and laryngeal myoclonus. It is now travelling to the left side and there is nothing I can do to slow it down. I know what the end will be with this neurological problem... breathing/ choking/swallowing will become more difficult..not nice.

Is your myoclonus bilateral or only on one side?

I wish you the very best and hope you can come to terms with this and live as best you can. That is all I can do. I hope more people chime in on this.

Thnks for your support Cindy. Have you heard of anyone else on any boards with this?

 
Old 09-26-2008, 07:03 AM   #5
Newbie
(female)
 
Join Date: Sep 2008
Location: bk,ny
Posts: 3
charr093 HB User
Re: palatal & pharyngeal & laryngeal myoclonus...


Hi Vital,

I'm currently not taking any medications. Ive taken so many i cant even write the names down. Ive also had 2 surgeries that were unsuccessful. After i had my first surgery i was happy for around 3 days when the clicking stopped; after that it began again and i was told i developed palatal myoclonus which is a side effect and its very hard to spot. i was devastated by this and cried for so many days my eyes began to hurt!!

I dont know what caused this. i remember being sick around the age of 12 with a really bad cold and my nose was running alot. then the clicking just started. at first i thought "hey i can make my ears pop" but then i realized it was not going away. it took around 2 years before we (my parents )found a doctor that knew of this condition.

In a way I think ive just learned to live with this horrible issue. it has become very difficult for me, especially when i enter new relationships and i have to explain to people that certain noises drive me nuts!! the sound of a clicking clock is the worst!! when i was younger people thought i was a freak. ENT Doctors used to use me as a subject when they had new doctors, and it was very embarrassing because it would make me feel horrible.

Ive received the botox injections but my case is very severe. The injections should last 3 month, however i have to go back every 3 weeks for an injection!! after the injection i usually feel light headed and my palate still twitches, however the clicking in my ears usually goes away for a little bit of time. i can handle my palate moving for the rest of my life, but the clicking is the major issue. ive done research on medications and im going ot the docotor on monday to see what he thinks would be good for me to take. if he doesnt recommend any of the medications i will go back to my Botox doctor.


Quote:
Originally Posted by vital33 View Post
Thanks for replying charr. im 48 & I'm sorry you have this and its really difficult to treat from all the research I've done. I came across many articles where they try different combinations of medicines, and even then, they don't work very well. I was offered botox but refused. I read one research paper where someone your age was cured after having their adenoids removed...go figure! My neurologist just suggested Keppra and said I should research it to see if I want to try it.

What meds are you on for it?

But As I'm already on Lyrica 75 mg twice daily, 5mg Valium twice daily,Mitrazapine 30mg PM (this contains a superbenadryl anti-histamine which seems to help me). I also take Zantac 12 hr one a day.
I tend to be wary of changing what I'm on at the moment..since I react unpredicatably to changes in meds.

Do you know what caused yours?

Originally I was on Clonazepam 0.5mg twice daily and I was really bad on this..it was the only medication I was on. MY body was histaminic and inflammed... I was toxic from this medication.and constantly in withdrawal from it without knowing it....I was told I also had trigeminal neuropathy,fibromyalgia, complex regional pain syndrome etc...But these conditions are part of the arachnoiditis (medically or dental treatment/therapy caused nerve injury) syndrome.

The myoclonus was in my palate and throat all the time. It was so bad on clonazepam that I was having choking fits. I have trouble swallowing on the right side, nerve/ muscle damage there. I suspect have supra- and sub-glottic stenosis on right side (becomes clearly evident when don't use partial denture and if on hardly any meds... ..the myoclonus then becomes a burning-cramp on right side face and a burning-cramp on right side neck/throat. Laryngo-pharyngeal reflux experienced on right side...very frightening).

Do you notice the spasms increase in intensity(amplitude) and frequency(speed) when your adrenaline(epinephrine) levels go up, say, during exercise, walking?

For me,it happens while im just sitting still, just opening my mouth increases them or moving my neck...its always there but I do everything possible to minimize it. Like don't eat things that will make it worse eg. no coffee, I hardly eat any packaged foods and stick to anti-inflammatory foods as much as possible like salmon, tuna, lots of veges but no nightshades.Anything that increases spasm / even peristalsis in the body seems to affect it, in my case, so I try to keep as regular as possible, which isn't easy on the meds Im on...have yogurt/ greens every day etc. Also I pace myself, so I do something active and then rest etc.

Swallowing & talking can be affected...i'm trying to stay on top of this thing but its not easy...docs don't know what to do either. I've had it progressing for 14 years.
Its good to hear from someone else with this...mine originally started as some clicking in right ear but now has spread to become pharyngeal and laryngeal myoclonus. It is now travelling to the left side and there is nothing I can do to slow it down. I know what the end will be with this neurological problem... breathing/ choking/swallowing will become more difficult..not nice.

Is your myoclonus bilateral or only on one side?

I wish you the very best and hope you can come to terms with this and live as best you can. That is all I can do. I hope more people chime in on this.

Thnks for your support Cindy. Have you heard of anyone else on any boards with this?

 
Old 09-26-2008, 07:08 AM   #6
Newbie
(female)
 
Join Date: Sep 2008
Location: bk,ny
Posts: 3
charr093 HB User
Re: palatal & pharyngeal & laryngeal myoclonus...

thank you for your support

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Botox for Palatal Myoclonus KimJohnson Inner Ear Disorders 0 07-14-2009 06:20 AM
Does Dr. Poe treat palatal myoclonus? MaggieMay78 Hearing Disorders 10 04-19-2008 07:41 PM
Laryngeal pharyngeal reflux (LPR) questions suncat Acid Reflux / GERD 21 12-03-2006 02:39 PM
Palatal Myoclonus and Botox vernon123 Inner Ear Disorders 50 08-07-2006 05:52 PM
laryngeal pharyngeal reflux(LPR)and being exposed to toxic fumes? sickandsad83 Acid Reflux / GERD 2 06-28-2006 12:20 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



gmak (4), Moldova (2), Whynowthis (2), teteri66 (2), ladybud (1), I torch glass (1), luvinmusiq (1), jewlz67 (1), agelbert (1), Zims mom (1)

Site Wide Totals

teteri66 (1164), MSJayhawk (997), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (745), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 12:49 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!