Face and Neck Spasms/Charlie Horses

Hey everyone. I had my "checkup" Tues. I am excited I am approaching my 2 yr anniversary for end of treatment and thus moving out of the so called "critical time" my dr gave me, when the most likelihood of recurrence occurs. So, he goes on to tell me nonchalantly that he himself will not "feel better" until I reach the 3 year mark! Geesh! Kind of a downer from my "check up". He also told me that while he commends my approach to dealing with fibrosis, we may reach a point where we have to talk about "other" approaches to dealing with the pain (translate spasms) from the consequences of chemo/radiation.

Question. To those this applies too, what did/do you do for facial, under the jaw, neck and shoulder muscle spasms, tightness/thickness translating into charlie horses? I find "medicating it" solely unacceptable. I also am not mainstream medicine although I am a nurse. It is Not the all in and be all.

Currently, I am getting physical/chiro/therapy/treatment 2-3 times a week with massage and ultrasound. Oh my goodness, the ultrasound is Wonderful! I am just refusing to sit down and say, "Oh well, this is the way its got to be" while it gets worst.

Your experiences, and words of wisdom? Thanks so much.

Linda

Comments

  • Greg53
    Greg53 Member Posts: 849
    Charlie Horses
    Linda,

    I definitely am afflicted on occassion with the Charlie-Horse syndrome. It hits me from the top of my head down to my shoulder. I had rad neck along with removal of significant muscle and nerve, including removal of jugular vein from right side of neck. BTW, I am at same timeframe as yourself, fast approaching 2 years out from end of treatment (not a very good way for your doc to tell you that in my opinion - some have better bedside manners than others).

    I did PT early on and it helped limit cramps somewhat, but for me I found stretching execercises for the neck/shoulder area really limited this effect. I also do Taiji and the stretching associated with these exercises help considerably also. I believe some others do yoga, I'll let them discuss the benefits from that. I also am back to lifting weights as part of my regime. I do not think this helps very much with the cramps, in fact when I do heavier lifts with shoulders, it can bring on those cramps. However for me, I have found that if I do the stretching and Taiji it reduces the number of episodes of Charlie-Horse-Neck. Not very scientific, but it's working for me.

    Hope you find some relief!

    Greg
  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Linda,

    As you and Greg mentioned, stretching exercises are a good thing to do daily. Here is the link to a post that is now in Sweetbloods list of things to benefit us all, the Super Tread that she puts on the first page each week.

    http://csn.cancer.org/node/196680

    This post is what I was taught by a Cancer Physical Therapist for my Lymphadema 7 years ago. She taught me the little stretching exercise and the gentle massage to use daily and as time went on, when I need to. I don't cramp up to often now, but a Nurse told me to make sure I get a good amount of potassium each day, so, I eat one banana in my ceral each morning. It really has helped.

    I would guess, this is my memory working now, that it was around the 3 year mark that I stopped having the frequent muscle spasms in my neck and face. I still get the lymphadema whenever I do any heavy chores around the house. Heavy being anything around 25lbs or more of lifting using the arms and shoulders, bending over to pick things up,etc.

    My Best to You and Everyone Here
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Interesting....
    An interesting topic for me....

    I'm out nearly to the three year post Tx mark. Nine weeks of chemo, then an additional seven weeks of concurrent chemo/rads...no dissection.

    Just recently I have started having an occasional muscle cramp or charlie horse on the right side of my neck (the side hit hardest with rads).

    Starting around the collar bone and traveling upward through my neck to behind the ear.

    I have never had this before this last few weeks...

    It has always been tighter on that side since rads, and I presume there is a cetain amount of fibrosis as mentioned.

    JG
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    I'll see your charlie
    and raise you a horse. These suckers really hurt. I had them after rads the first time, under the chin, generally triggered by just moving slightly the wrong way. Or as greg said, in the gym. Holy smoke, especially lifting weights. I just worked out the spasm when it happened, and eventually (probabaly 5 years), they subsided. Faded gradually out, nevver to return. No definitive treatment was ever done.

    This time, I started getting them in one of my posterior left neck muscles. It started about 4 weeks into radiation. Triggered about the same as before. Not as severe as the first ones I had--- yet. I just talked to the radiation oncologist about these this week. He says PT, and if that fails, BOTOX injection. My plan is to wait this out a bit and see how it progresses.

    But man, when they hit,its not like Im going to go on with a conversation I'm having as though nothing is wrong. These dudes are awesome.


    Pat
  • ratface
    ratface Member Posts: 1,337 Member

    I'll see your charlie
    and raise you a horse. These suckers really hurt. I had them after rads the first time, under the chin, generally triggered by just moving slightly the wrong way. Or as greg said, in the gym. Holy smoke, especially lifting weights. I just worked out the spasm when it happened, and eventually (probabaly 5 years), they subsided. Faded gradually out, nevver to return. No definitive treatment was ever done.

    This time, I started getting them in one of my posterior left neck muscles. It started about 4 weeks into radiation. Triggered about the same as before. Not as severe as the first ones I had--- yet. I just talked to the radiation oncologist about these this week. He says PT, and if that fails, BOTOX injection. My plan is to wait this out a bit and see how it progresses.

    But man, when they hit,its not like Im going to go on with a conversation I'm having as though nothing is wrong. These dudes are awesome.


    Pat

    yep, yoga is great for this, but ????? is better
    Linda, start a simple gentle restorative type yoga practice in your home in front of the TV. These dvd's really get into the relaxing of facial and neck muscles. I have literally no neck pain from the neck dissection because of regular yoga. Doing curls with weights will aggravate things big time if the weight is to heavy as others have mentioned. I have to tell you about Qi Gong though. This is a very relaxing flowing series of short mostly hand movements with a tremendous amount of concentration to the neck, shoulders, face and head. I recommend this over yoga. Find 2-3 good Qi Gong exercises that work your neck and head and your pain will be gone. You see entire communties of Chinese people in parks doing these exercises in unison. We Westerners need to open up some.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    ratface said:

    yep, yoga is great for this, but ????? is better
    Linda, start a simple gentle restorative type yoga practice in your home in front of the TV. These dvd's really get into the relaxing of facial and neck muscles. I have literally no neck pain from the neck dissection because of regular yoga. Doing curls with weights will aggravate things big time if the weight is to heavy as others have mentioned. I have to tell you about Qi Gong though. This is a very relaxing flowing series of short mostly hand movements with a tremendous amount of concentration to the neck, shoulders, face and head. I recommend this over yoga. Find 2-3 good Qi Gong exercises that work your neck and head and your pain will be gone. You see entire communties of Chinese people in parks doing these exercises in unison. We Westerners need to open up some.

    OK , Mr Rick
    I've heard you say this a couple of times now, and I know you not to be a kook. So I spent some time looking around at what I might buy to accomplish this. But I got confused and couldn't chose among what, I must say, are very reasonably priced products. So could you suggest which one, or several you are talking about? Understand I'm an absolute tyro. No prior experience or exposure. Thanks.

    Pat
  • Greg53
    Greg53 Member Posts: 849

    OK , Mr Rick
    I've heard you say this a couple of times now, and I know you not to be a kook. So I spent some time looking around at what I might buy to accomplish this. But I got confused and couldn't chose among what, I must say, are very reasonably priced products. So could you suggest which one, or several you are talking about? Understand I'm an absolute tyro. No prior experience or exposure. Thanks.

    Pat

    Totally agree with the kook....
    ....I mean Rat.

    If I credit anything with my recovery, which in my estimation has been pretty good (so far) - I credit #1 my ENT, #2 my wife and then Taiji.

    I started Taiji classes about 6 months after treatment ended, sponsered thru a local cancer wellness group. I really believe the classes have helped me physically and mentally. Taiji is an internal marital art (as compared to external martial arts such as karate and kung fu). There are several different schools of Taiji. The one I do is based on healing the body and mind. It has 3 components. 1. QiGong, which is the practice of energy (Qi) movement thru the body. 2. Silk Reeling, which is exercises designed to use QiGong principles and 3. the Taiji Form, which is what you see people (including yours truly) practicing in the park. Taiji is actually a martial art as I mentioned before but the martial aspects of it can be minimized depending on the style you do.

    So much for my rant, but this has turned into a big part of who I am these days.

    Pat, don't know if you were looking for yoga videos or Taiji. If it's Taiji, let me know and I can send you some info.

    Positive thoughts to everyone!

    Greg
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Linda
    This is a constant issue for me. I stretch every day, but I still get them. They hurt like heck.
  • IAmStrong
    IAmStrong Member Posts: 58

    Linda
    This is a constant issue for me. I stretch every day, but I still get them. They hurt like heck.

    Sweetblood and All....
    I appreciate your input. As Sweetblood says, they are Paiful, literally take me to my knees. I do self massage, yoga and are you talking about tai chi? The stuff in the park? Ayways, yoga I Love/. but probably could find one for the face and neck more helpful. I am in PT and doing stretches too. When a simple yawn can set off a 4 alarm spasm...I take magnessium everyday and potassium too. Am able to eat bananas more now. Anything that tasted "sweet" was so very vile to me. The trigeminal nerve pain is a pickle when that shows up. Aye!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    IAmStrong said:

    Sweetblood and All....
    I appreciate your input. As Sweetblood says, they are Paiful, literally take me to my knees. I do self massage, yoga and are you talking about tai chi? The stuff in the park? Ayways, yoga I Love/. but probably could find one for the face and neck more helpful. I am in PT and doing stretches too. When a simple yawn can set off a 4 alarm spasm...I take magnessium everyday and potassium too. Am able to eat bananas more now. Anything that tasted "sweet" was so very vile to me. The trigeminal nerve pain is a pickle when that shows up. Aye!

    well, pursuant to these discussions
    as well as others I have had with both Greg and Rick (ratface) my wife and I attended our first Tai Chi lesson last night. There also is a related yoga discipline for my problems with spasm, taught by the same people. It really isn't what you see in the park, though maybe others would better address this than I am able. I was quite favorably impressed, and will carry on in this venue. I'll let you know later how well this works. I discussed my physical problems at length with the instructors, so if I do my part in this, I should be another good test case.

    Pat
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    IAmStrong said:

    Sweetblood and All....
    I appreciate your input. As Sweetblood says, they are Paiful, literally take me to my knees. I do self massage, yoga and are you talking about tai chi? The stuff in the park? Ayways, yoga I Love/. but probably could find one for the face and neck more helpful. I am in PT and doing stretches too. When a simple yawn can set off a 4 alarm spasm...I take magnessium everyday and potassium too. Am able to eat bananas more now. Anything that tasted "sweet" was so very vile to me. The trigeminal nerve pain is a pickle when that shows up. Aye!

    IAmstrong
    Yep, I eat more bananas and try and my potassium up, too.
  • AllenWashburn
    AllenWashburn Member Posts: 5
    Neck Spasms

    Hey All,
    I'm new to the site and would like to say hello to all of you first.  I came here for this subject specifically in search for some new ideas on pain relief and treatment.  I'm 5 years out from radiation and although happy to have survived I am never happy with the quality of life I'm left with.  Since completing 7 weeks of Radiation/Chemo I have had pain in my neck....not much at first but over the last 3 years I can only describe my pain as exquisite.  I went back to work after but soon found any type of stress brought on these cramps..and yes...even yawning.  I have been unable to relieve myself of them inspite of PT and Botox. Stretching is the only relief but it's short lived and I find myself doing it more and more just to break the cramps.  My Doctors, in my opnion, haven't got a clue when it comes to diagnosing me.  For the last 2 years they have been diagnosing it as Spasmodic Torticulis and giving me Pain Meds.  I couldn't live without them but I hate taking them. Also since I am unable to work I can no longer afford insurance so I am reluctantly on Obama Care..which most MD's don't take.  I'm at wits end and looking for help.  I've read your many of your posts and have tried most of these remedies..other than the Radical Neck Disection...Please if any of you might have any ideas you would be my SUPER HERO..Thank you

  • ratface
    ratface Member Posts: 1,337 Member

    Neck Spasms

    Hey All,
    I'm new to the site and would like to say hello to all of you first.  I came here for this subject specifically in search for some new ideas on pain relief and treatment.  I'm 5 years out from radiation and although happy to have survived I am never happy with the quality of life I'm left with.  Since completing 7 weeks of Radiation/Chemo I have had pain in my neck....not much at first but over the last 3 years I can only describe my pain as exquisite.  I went back to work after but soon found any type of stress brought on these cramps..and yes...even yawning.  I have been unable to relieve myself of them inspite of PT and Botox. Stretching is the only relief but it's short lived and I find myself doing it more and more just to break the cramps.  My Doctors, in my opnion, haven't got a clue when it comes to diagnosing me.  For the last 2 years they have been diagnosing it as Spasmodic Torticulis and giving me Pain Meds.  I couldn't live without them but I hate taking them. Also since I am unable to work I can no longer afford insurance so I am reluctantly on Obama Care..which most MD's don't take.  I'm at wits end and looking for help.  I've read your many of your posts and have tried most of these remedies..other than the Radical Neck Disection...Please if any of you might have any ideas you would be my SUPER HERO..Thank you

    Please start a new thread

    Allen, this thread is several years old and you will get much better information if you start a new thread. Look forward to replying to it. Welcome to the Board.

  • Greg53 said:

    Charlie Horses
    Linda,

    I definitely am afflicted on occassion with the Charlie-Horse syndrome. It hits me from the top of my head down to my shoulder. I had rad neck along with removal of significant muscle and nerve, including removal of jugular vein from right side of neck. BTW, I am at same timeframe as yourself, fast approaching 2 years out from end of treatment (not a very good way for your doc to tell you that in my opinion - some have better bedside manners than others).

    I did PT early on and it helped limit cramps somewhat, but for me I found stretching execercises for the neck/shoulder area really limited this effect. I also do Taiji and the stretching associated with these exercises help considerably also. I believe some others do yoga, I'll let them discuss the benefits from that. I also am back to lifting weights as part of my regime. I do not think this helps very much with the cramps, in fact when I do heavier lifts with shoulders, it can bring on those cramps. However for me, I have found that if I do the stretching and Taiji it reduces the number of episodes of Charlie-Horse-Neck. Not very scientific, but it's working for me.

    Hope you find some relief!

    Greg

    Hope you don't mind my

    LaughingHope you don't mind my asking, but what is "Charlie Horse"? I remember it from my Operation game as a child.

    I think in Britain we must call it something different. I wonder what

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Estelle_H said:

    Hope you don't mind my

    LaughingHope you don't mind my asking, but what is "Charlie Horse"? I remember it from my Operation game as a child.

    I think in Britain we must call it something different. I wonder what

    Estelle, a charlie horse is

    Estelle, a charlie horse is the same as a cramp.  its simply where the bones feeling like they are trying to cross each other.  very painful.

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member

    Neck Spasms

    Hey All,
    I'm new to the site and would like to say hello to all of you first.  I came here for this subject specifically in search for some new ideas on pain relief and treatment.  I'm 5 years out from radiation and although happy to have survived I am never happy with the quality of life I'm left with.  Since completing 7 weeks of Radiation/Chemo I have had pain in my neck....not much at first but over the last 3 years I can only describe my pain as exquisite.  I went back to work after but soon found any type of stress brought on these cramps..and yes...even yawning.  I have been unable to relieve myself of them inspite of PT and Botox. Stretching is the only relief but it's short lived and I find myself doing it more and more just to break the cramps.  My Doctors, in my opnion, haven't got a clue when it comes to diagnosing me.  For the last 2 years they have been diagnosing it as Spasmodic Torticulis and giving me Pain Meds.  I couldn't live without them but I hate taking them. Also since I am unable to work I can no longer afford insurance so I am reluctantly on Obama Care..which most MD's don't take.  I'm at wits end and looking for help.  I've read your many of your posts and have tried most of these remedies..other than the Radical Neck Disection...Please if any of you might have any ideas you would be my SUPER HERO..Thank you

    Hi Allen

     

    I agree with Ratface, please post this as a new thread. There are many of us here with some of the same problems, I am one of them. So for now Welcome to CSN H&N.

     

    Tim Hondo  

  • phrannie51
    phrannie51 Member Posts: 4,716
    Estelle_H said:

    Hope you don't mind my

    LaughingHope you don't mind my asking, but what is "Charlie Horse"? I remember it from my Operation game as a child.

    I think in Britain we must call it something different. I wonder what

    Ever go to bed at night

    and get a cramp in your calf that hurt so bad, all you can do is get up and walk it off (and pray that it goes away)?  Or a toe that suddenly sticks straight up, causing you to think about the possibility of cutting off your foot?  THOSE are charlie horses.....hurt like the devil and then are gone.

  • donfoo
    donfoo Member Posts: 1,771 Member
    getting worse

    Hey guys,

    Now at 16 months post, the neck spasm thing gets worse than before. Until now, it was relatively easy to calm down with some rubbing and stretching. Regular neck stretching and massage did a good job of keeping the frequency of them to a couple a week. Recenrtly, I noticed a thicker muscle running from my shoulder, up along the side of my neck to the base of my neck behind my ear. The spasms get stronger now and it is harder to keep under control. I know it is right where the rads were concentrated as that was the side of the neck nodes. Any new ideas on how to manage this condition?

  • Guzzle
    Guzzle Member Posts: 710
    donfoo said:

    getting worse

    Hey guys,

    Now at 16 months post, the neck spasm thing gets worse than before. Until now, it was relatively easy to calm down with some rubbing and stretching. Regular neck stretching and massage did a good job of keeping the frequency of them to a couple a week. Recenrtly, I noticed a thicker muscle running from my shoulder, up along the side of my neck to the base of my neck behind my ear. The spasms get stronger now and it is harder to keep under control. I know it is right where the rads were concentrated as that was the side of the neck nodes. Any new ideas on how to manage this condition?

    Massage

    Don, I have a massage therapist (30 dollars a pop no happy ending!) who works wonders and will also be getting some on NHS. Works well so far.