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EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/18/2009 8:01 AM (GMT -6)   
Hello to all!!!
Wanted to see if anyone else has a problem with jaw clenching with nighttime spasticity? If so, any tips, suggestions, or words of encouragement would be greatly appreciated.

A happy day to all,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 4/18/2009 10:19 AM (GMT -6)   

Ooooooh Elizabeth!!

This is a bad one!!  I have not had this since being diagnosed, but when I was in college I cracked two molars from grinding!  Get a mouth guard.  They are expensive from the dentist as insurance doesn't usually cover it.  You might try the over the counter type.  I have no idea how well those work.  As for relieving the spasticity, I can't really help there.  I just take baclofen and that works for me. 

I hope you get that taken care of soon.................(smiling to show off my two gold crowns to repair those molars)


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/18/2009 11:12 AM (GMT -6)   
Gretchen,
Thanks for responding. I am actually on my 3rd mouth guard from the dentist. I have been grinding for as long as I have had MS...18 years. The mouth guards help some for awhile and then I just grind them flat. Do you still wear a mouth guard? You mentioned that you have not had this problem since being diagnosed, what was the difference? Or are you saying that you haven't had the problem at all since college? Also a baclofen question, do you find that it makes your limbs weak while relieving the spasticity? I really appreciate all of your help and knowledge.

Peace,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 4/18/2009 1:15 PM (GMT -6)   

I go through periods of grinding.....I am not good about using my mouth guard all the time.  I use it when I grind.  I should use it all the time but I don't.  My worst period of grinding was in college...despite loving it, it seems that stress must have been the culprit. 

Yes, baclofen can make your legs "weak".  You need a certain amount of spasticity to walk (that ability to keep a muscle tense to bear weight).  There does seem to be a fine line between reducing spasticity but not so much as to make it difficult to walk.  It seems that some have to really work on tweaking meds and dosages to find that right balance.  I actually have very strong legs (thanks to some very specific PT ) and don't have that problem.  I have pain from spasticity in my left leg.  I have some nerve problems, again that left leg doesn't always do what it is told.  It likes to trip the right leg and it likes to just give out.........crash!! 

I only use baclofen as needed.  I don't always need it.  So, I am no expert there.  I am sorry.....I don't think this was much help.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/19/2009 8:10 AM (GMT -6)   
Thanks Gretchen!!!! The info was most helpful !!!! smilewinkgrin

Take care,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/20/2009 12:48 AM (GMT -6)   
Hi hot woman,

I have a baclofen pump for intense pain due to spasticity. Yes, the baclofen does make my legs weaker. My left side is worst affected by MS so is the weakest. If I stand on my left leg I shake a lot. If I stand on my right leg I hardly shake at all. I could not tolerate oral baclofen as it made 9 nerves in my face jump. The pump has been miraculous for me because for the first time in 12 years I have no pain & also am back to my easy going self with no irritable flares. So I accept the shakiness - its worth it to have no pain & less spasticity.

I am on a complex continuous dose - very low during the day (to minimise the shakiness) but a lot higher from 8.00pm-8am because thats when I have the worst spasticity/pain. Since the pump I always use a walker at home which I have grown to like because I hardly ever fall now & I can carry things (like piles of washing or plates or tools & plants if I am out in the garden) & I can sit down when I need to

Love & Light
Speedy
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/24/2009 7:01 AM (GMT -6)   
Thanks Speedy!!!!! Your input is so helpful and I really appreciate all of your words of wisdom!!!! I am trying a very low dose of Baclofen today so please keep me in your thoughts for a good response and less spasticity for dancing!!! yeah

Take care and keep it on the road...although a little off roading could be fun!!!
Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/25/2009 1:08 AM (GMT -6)   
Hi "Hot" woman,
Good luck with the baclofen I hope it allows you to do some "cool" dance moves.

I was wondering if you have ever tried Progurt? I found it gave more dexterity in the hands. It is a yogurt you make at home - is easy to eat as it just slips down your throat. Said to also boost the circulation. If you are interested you will find it on the internet. I eat a cup a day and do feel good & have much less fatigue. I just spent the morning in the garden

Love, light & rapid acceleration. Vrooooom!!!
Speedy smilewinkgrin smilewinkgrin smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/27/2009 6:38 AM (GMT -6)   
Hi Speedy,
I have not heard of Progurt but appreciate the info and I will definitely look it up and check it out!!!! Did not have good success with the Baclofen, had some nasty nerve jumpy problems with my legs and feet but will continue the search for help with my spasticity to improve my Saturday Night Fever dance moves!!!! smilewinkgrin

Take care and remember to keep your tires properly inflated...it helps you go faster!!!! :-)

Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/27/2009 4:54 PM (GMT -6)   
Hot woman,

Sorry about the nerve twitches I had the same reaction. I desensed with kineaseology or I don't think I could be managing with the pump now. Have you tried magnesium?? Also good for the grinding - my husband has nearly ground his teeth away & always wakes with a headache (for last 30 years!!) now he listens to me & says the magnesium is definitely helping!!

Its hot here so the faster we go, the harder the tyres get (my husband is always deflating them to try & slow me down, the sneaky fellow) and the faster we go. Hang on!! Yipppeeeeeeeeeee!!

Speedy smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/28/2009 7:28 AM (GMT -6)   
Speedy,
There is nothing worse than someone who tries to slow a fast woman down!!! smilewinkgrin Tell that little devil husband there are many things he can touch, just not your tires!!!! yeah Hope you are doing ok with the heat!!

Take care,
Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/29/2009 2:29 AM (GMT -6)   
Hot woman,

I was thinking about the magnesium and thought you would need to max the dose to help such strong spasticity. We have natropaths in all the health shops here & they advise on how much you can take.

The other thing that I find has really helped with the allergies is Theta Healing. I have done 2 courses but think all the info is in Vianna Stibal's book - I only suggest this because I know that (like me) drugs are a problem for you and I think you might like this.

We are in autumn & weather is fantastic - mild and sunny - I love it. Its only the tires that get hot with the speed!!!!!

Speedy
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Love is a many splendoured thing


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 5/3/2009 9:02 AM (GMT -6)   
Thanks Speedy!!!!
I so appreciate all of your helpful info and will let you know how the Magnesium thing is working out. The spring weather here in NC is gorgeous and I have been able to get out a lot in my "speedy" wheelchair!!!! The speed powered by my wonderful strong super brute husband !!!! I am a very small person and he is a very big guy so you can imagine the fun we have with his turbo power!!!! My hair is blowing in the wind!! smilewinkgrin
Happy Labour Day tomorrow in Australia, I think!!!!

Peace to ya,
Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/4/2009 9:16 PM (GMT -6)   
Hey Hot Woman & BBB husband (beautiful, big, brute),

What a dynamic duo you two must be! Autumn & spring are the best times. I fill my walker with my tools, plants etc & spend happy hours in the garden.

Wondered if you had ever tried hyperbaric pure oxygen therapy? I am having success with Pranayama yoga breathing (it has the same effect without the price tag). When my voice gets weak I do it and the voice gets powerful again. Exciting!
turn
Speedy
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 5/9/2009 6:32 AM (GMT -6)   
Speedy,
I have not heard of that type of yoga breathing and will definitely check it out!!! Most appreciative of the suggestion. Do you do yoga as well or just yoga breathing? I do a very tailored yoga for my body which really helps with flexibility and spasticity. Thought that might be helpful info for you. Do you just flower garden or do you vegetable garden as well? We are very into the nature thing and are thinking of "branching" out, no pun intended, ha ha into vegetable gardening. Wishing you a sunshine filled day!!!!

Peace, :-)
Hot Woman and BBB husband smilewinkgrin
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/10/2009 5:51 AM (GMT -6)   
Hot woman,

I would love to do more yoga but it is one of the things that I cannot much do now I have a pump - too much movement of the spine, repetitive bending or twisting can dislodge or kink the catheter which would mean another operation to replace it, and they leave the old catheter inside, just thread a new tube instead. Are any of your exercises more static? I also have trouble holding a posture (lack of strength) and have very poor balance though I was able to do some exercises as long as I could hold on to something,

If you get your SW("super, wonderful") BBB husband to type "The-Magic-Of-Yoga: Hyperbaric Pure Oxygen Therapy and Yoga" into the net you will find this site where she talks of the success she has had curing her Auto Immune Disorder which she had had for the last 11 years. I am now looking for a master who will instruct me in the specific exercises she mentions. She is at the top of the page & about 5 sites down the page you will find one about the benefits of hyperbaric oxygen and MS.

I got to it in a roundabout way because I first saw a DVD about yoga breathing where he mentioned that you could create this hyperbaric oxygen effect. So I devised my own exercise and had this remarkable response. So I went looking on the net for someone who could teach me properly and found this site.

I have not done much vegetable growing yet but plan to grow vegs amongst flowers when we remodel the backyard with some raised flower beds that I can garden.

Happy days
Speedy turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 5/10/2009 3:27 PM (GMT -6)   
Hey Speedy!!!
Thanks for all of the wonderful info!!! yeah Most of my yoga is completely stationary and I do not hold any poses due to pain. I find that just doing the pose without hold is plenty for me. I went to a yoga class years ago that was for MS/FMS patients only. I found that I could not do the majority of what most of the folks in the class could do so I worked it out with the instructor to come to my home and help me design a routine that I could do with all of my limitations. I do get in the floor with towels etc. for my relaxation that is done before and after my yoga routine. 99% of my yoga is done in a chair. I do limited twisting. It is a very specific routine for my specific body and I find it to be very helpful. I also do a video Tai Chi. Yoga in the am and Tai Chi in the pm. I shower before each to get my muscles warm and relaxed. Good luck with your search for a master to help you out. Sounds like an interesting therapy. smilewinkgrin .

Take care,
Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/13/2009 4:48 AM (GMT -6)   
Hey Hot Woman aka SWBBB,

Thanks for the info about the yoga. I too had that sort of encounter with yoga and Tai Chi. They were both meant to be tailored to MSers but weren't & the Tai Chi was particularly impossible. I am impressed that you are doing it. Your balance must be good!!

I am looking for someone good to make me a personalised programme like yours it definitely sounds the way to go.

Speedy turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 5/13/2009 7:18 AM (GMT -6)   
Sorry to butt in here but I just love this thread!  You two are so funny and cute.  I love how people can meet here and become friends and supporters to each other. Ok back to your yoga, yogurt, tai chi and more convo!!! 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/14/2009 8:03 PM (GMT -6)   
Hi Gretchen,

I would like to post the subjects discussed in case there is anyone else interested but do not know how without starting a new thread each time
For example I would like it to read - spasticity, yoga, Tai Chi, progurt, hyperbaric breathing

Thanks
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 5/14/2009 9:50 PM (GMT -6)   
Popsie,
 
Perhaps start a new thread called ..........Natural and alternative treatments (yoga, tai chi, blah, blah).  Then keep posting or bumping that one if you think it will help.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 5/18/2009 8:33 AM (GMT -6)   
Hey Speedy,
Yes, the specialized, individual program is definitely the way to go!!!! Yes, for the most part my balance is pretty good. I am impressed with all that you can do...stair stepper, cross trainer, etc. It just continues to show the further complexity and individuality of this illness. Keep me posted on your search for help with your own personal program. I am going to switch over to that new thread that you and Gretchen talked about...hi Gretchen smilewinkgrin...glad you are enjoying this...I am super psyched about that. yeah See you guys over there!!!!!

Take care,
Hot Woman
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***

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