Neck shaking...

[rogeriopaguilar]

Hi people. The last few weeks my head started shaking in a violent way, even when I lay down. When I sit or stand the problem continues but not as violent as when I am in bed. I bought a cervical collar because of neck weakness but with this head shaking I can't use it because the contractions force the muscle against the collar and I feel a lot of pain. I can't do other things like look at computer screens or watch tv while I am at bed. I asked DaveJ of alstdi about medications that could help and he mentioned some sodium modulators. I was already trying lamotrigine with no success. I tried rivotril with a little benefit. Tizanidine and bacoflen does not work. I was looking for options and they say that for cervical dystonia they use botox to control the muscle spasms in the neck. Has anybody used it? Is it safe for this case? If not I would like to know if there is another medication that can relieve these violent muscle jerks. I don't know if this kind of movement occurs because of als or if it is another thing like some kind of dystonia, but I believe it is caused by als even if it is indirectly. In the other forum they said it is clonus and there is nothing I can do about it.

PS: I know I should ask the neuro but he and apparently all of them around here is on vacation now and I doubt they would have an answer for this. I went to the first aid section of the hospital and had no answer other than taking tramal which is for pain and not for this so obviously it didn't work so I preferred to ask on the forums.

Thank you.
Rogério

 

[Atsugi]

You doubt your neurologists would have an answer. But you think you can get an answer from non-medical people on the Internet who can't see you or test you. That's foolish. Spend some time looking for a doctor.

 

[lgelb]

If Rivotril (clonzepam) helped a bit, there are other benzos to try or you could titrate the dose up. You might also reconsider the angle of your bed (the head) and what kind of pillow you are using, as you may be straining weak muscles when you lie down and so they may be going into spasm. Try to support your neck fully, taking the curve of your upper spine into account. Heat and massage may help as well, and mild stretching since I believe you still have voluntary head movement. Perhaps there is a physio you can consult for an evaluation of what regimen might help.

Many neurological diseases have spasms as a symptom so I'm not sure why you think the neuros there can't help, but any use of botox for this indication would have to be in the hands of an experienced practitioner in any case, as it has risks.

 

[affected]

My Chris didn't have clonus of the neck but he did of the jaw and the legs. I'm sorry to hear you are experiencing this!

With Chris's legs it was triggered by position and it sounds like your neck could be similar as you have problems in bed.

I would also look at positioning and support in bed as suggested. Do you have a partner or primary CALS? Do you have a hospital bed? I'm going to have to imagine you do for the following.

Firstly I would try getting comfortable in bed and having a range of pillows on hand. There are a few types of neck pillows you can get, there are all sizes of wedges, but even a rolled towel may work. When the clonus starts, have your CALS reposition your head slightly and use pillows, wedge or rolled towel to see if there is a position that supports your head better and stops the clonus. Take photos of yourself in a good position as it can help the next day to reproduce it.

When I would put Chris in bed I went through quite a routine of working methodically around his body to ensure I had all parts of him aligned, and supported with pillows of various types and the angles of the hospital bed just right.

It would be very difficult to work all of this out alone as your CALS may need to firmly hold your head and change position slightly a little at a time til a good place is located and the clonus stops or settles.

I hope this helps but I agree you need an OT to come to your home and assess this. I would be trying out as much as I could on massage, ROM and positioning before going down a botox type path. I think an OT is far more specialised to help in this situation than a neurologist. Our specialist relies heavily on the expertise of the OT's in the area and the speech pathologists. That's why we have specialities and need a team to manage ALS.

I can only try to imagine though how difficult it is to deal with clonus in the neck as repositioning arms or legs is fairly simple.

Please update us on how you go as these kinds of little details of care are so important to help share out with other PALS and CALS.

 

[rogeriopaguilar]

Thank you. I dont have a hospital bed nor a cals yet. I am still fuctional despite being weak.I tried everything but nothing worked.Doctor toldvI can put bottox but it can be bad because the disease is attacking forst my neck and shoulder muscles. He said I will not live much because it is primary in my bulbar region. I will go for bottox anyway. At least my head will be more confortable on the final period of my life.

Rogério

 

[affected]

I'm just a little confused.

You have a diagnosis of 'probable' ALS and you haven't really given us any details of how and when this was made after all your time of symptoms and clean EMG's.

You were diagnosed 2 months ago and you are talking of doing botox injections (which are usually something people resort to after many less drastic treatments/therapies) for the final period of your life?

Would you mind maybe bringing us up to speed a little?

Surely a hospital bed, positioning, massage etc would be first in line? I'm not at all sure what you mean by you don't have a CALS yet. Truly I'm not trying to be difficult, I've just read back through all your history here and am very confused. A CALS is the person who cares for you, usually a spouse, family member or very close friend. (they are not a paid person)

I try to offer a lot of support here, but without understanding just where you are at, it's hard for me to reply with useful ideas.

 

[rogeriopaguilar]

Well, technically my cals would be my mother, but she is in denial. She is christian and think pray will cure me. I can do most things by myself so i dont need help with many things yet. I dont have an hospital bed. Look, i live in a third world country. Everything you take for granted is really difficult to get here. We dont havr als centers except for one in sao paulo but it is difficult to go there. My emg had fasciculations but dodn't test the bulbar region which where I am having problems now. I will probably can do another in 4 months (third world medical care is terrible) but clinically i am losing strength. I try to post questions here or in another forum because it is really difficult to get a consult with neurologists around here.

Rogério

 

[scaredwifetx]

Rogerio, I am so sorry that you are unable to get proper medical care where you live. I hope you can find some of the answers you need here. I do wonder if the doctor can give you Botox shots and all the other prescriptions you have tried, why you are unable to get a prescription for a bed the elevates. Maybe you can use a few pillows and try different positions until you find one that will ease the shaking and you need to talk to your doctor as soon as possible.

 

[lgelb]

Rogerio, you live in the province where the ALS center is (and from what I see of their research, justifiably well-regarded). Why can't you go? But it does not appear you have been diagnosed, so what possibilities are still on the table? Who has told you that "clinically, you are losing strength?" You have been here for over a year, but say that you still function independently, so it's hard to believe that you are now a rapid progressor just because you are "bulbar," but I think before you were self-reporting limb onset?

Please clarify, as perhaps this thread belongs back in the DIHALS forum.

Best,
Laurie

 

[rogeriopaguilar]

I don't know what to say. The doctor who diagnosed me is from this organization but is on vacation. Maybe my diagnosis is not correct? I really hope so. I will try to up the dose of clonazepan and see what happens. When all this started I had cramps and twitches everywhere and weakness in my arms. At that time nothing in bulbar region. The weakness is still in my arms and then this thing started in my neck. I went to the hospital to get some medication and the general practitioner said this about bulbar symptoms and shortening of life because of that.
It is not that I cannot go to the center that exists here. Now they are on vacation and in normal days it will took on average 4 months to get an appointment there. But thats ok. Thanks you all for the help.

 

[lgelb]

Well, your neck muscles are still part of "limb onset" -- when we say bulbar, we mean throat, tongue, jaw, face and you do not seem to have problems eating, breathing, speaking, swallowing? So I would not consider that you are in your final year just because you have neck weakness. It is very common in all forms of ALS and can last a long time.

But if there is a therapy dept. or association that can help you get a hospital bed, it would be good to start the process (normally, doctors only sign off on such an order; other staff get it underway) and we have given other suggestions about positioning that should help also. One that I forgot was something called a "Embrace sleep collar" that is available on azn. It is black, soft in front and does not have padding in back so if you have spasms it would not be as hard on the back of your neck. Or you could turn it the other way.

 

[affected]

I would think that if you have been diagnosed and are under the care of your local ALS clinic, which Laurie describes as well-regarded, then if you had a need such as neck care or anything ALS related you would be given an appointment. The four month wait would be for a new referral.

I agree that you are not describing bulbar issues when you talk of weak neck muscles.

I hope you can get some relief soon and understand we have to ask lots of questions back in order to help you.

 

[rogeriopaguilar]

I put an ice pack behind my neck when I lay down. After a few moments the spasms became less severe. It is not a solution but at least I am able to sleep now. Thank you all for the help.

Rogério