Frightning morning
 

Ok, on my last post I told you's about my getting really stiff in the AM and not being able to move and it being really painful and yadda yadda. Well this morning I couldn't move my head. I had a pain from base of my skull all the way down to my lower back almost to my bum.

It took almost 20 to 25 mns to get control of my head. Scared the daylights out of me. I literally couldn't move my head. I had to move it with my hand. DH was absolutely NO help at all. He'd see my head move and he'd say "see, your heads moving' and Id yell back that's because im moving it with my hand! He did nothing! No comfort, no NOTHING!! As tho Im not going thru enough crap, I got a lump on a log in bed next to me. UUURRRGGGHHHH!!!!!!!

Anybody else experiencing anything even remotely similar to the kind of stiffness Im experiencing? Or am I swimming alone here? Im starting to really fear one morning I'll wake up and the stiffness will be permanent.

:hug:
I am so sorry to hear that the stiffness is getting worse as so.. This incident most definitely sounds very frightening :(

Males (especially the healthy ones) don't seem to see the serious side of things sometimes. Like 'no big deal' type of attitude (man oh man do I wish I could be that way :rolleyes:). I know that feeling and it's frustrating. I can't say that I have experienced this issue.. but hopefully it will start to ease up for you rather than worsen. Always a new normal to adapt to with ms.. it's poop if you ask me.

:hug:

Remotely similar yes. While I haven't experienced the complete inability to move an area, sometimes when I attempt to that area goes into a full on cramp like spasm. It mostly happens in the backs of my legs when it happens and it can draw the heel of the foot partially or all the way right up to my butt. The pain is horrible and I can't straighten it until the stupid thing lets go. It is about the only time that I'm actually yelling out loud. Good thing I live alone...but poor Willy the dog. He doesn't know what to do then.

When my husband was alive he would force it to straighten by literally sitting on it. Also painful but at least it brought releif quicker.

I think of know what you might be going through with that sort of severe spasticity. Do you feel shocky afterward? I always do and it takes a while for the whole body to settle down. Baclofen helps to prevent it from coming back sometimes, but it seems to run in cycles. I'll have that sort of thing going on for several nights before it goes back to the regular jerky type spasms. I've also had similar spasms in the torso during TM and am wondering if you might be having some of that sort of thing due to lesions in the neck. It does sound somewhat like TM.

I'm sorry that your husband doesn't understand that trying to minimize the experience doesn't make it better. At least in my case, when it happens the body is in full 'flight or fight' survival mode and any attempt to have a discussion right then is going to end badly.
The only thing that is required or desired is a way to immediately get that body area out of its predicament. Anything else is just going to bring out the fight.

Have you been given an intrathecal (spinal) Baclofen. That is about the only thing that works for me if the cycle gets going.

With love, Erika

*admin edit*


No not really, but my legs need some time to come around in the AM....

sorry bout this....take care.

^^^This is almost identical to what I go through. Only mine is in my feet mostly and they curl so bad it forms a "c" with the bottom of my foot. My hubby pulls it flat for me and it goes away faster. I can't move it until the spasm goes away. It is terribly painful.

Now it is not my head when that happens but I do have something else I go through that makes me completely understand what you're going through. When you don't know what's causing it for sure or if it's going to get worse it's terrifying. Even knowing what causes mine now when I have a bad attack it is still scary.

I don't know if yours is MS or something else, but I would see if maybe your doctor has anything to say about it.

yes, i would let your dr know about this and have him evaluate it.

Sorry this happened, KL. I'm sure it certainly is frightening. You don't need more stuff!

Nemsmom, I have almost complete remission of the feet curling into C spasms by taking 1000 mg of magnesium per day. There are other things i take too but the mag was the most important and was advised by a neurologist. If I don't take it I will revert to that type of spasm, always.

Neuro is aware of severe stiffness in AM. That's why he wants the baclofen pump inserted asap. Which for me wont be until medicare kicks in. I haven't had any baclofen injections into my spine. NOONE will be injecting anything into my spine while Im awake again. LPs are bad enough. I swore never again. I'll put up with the stiffness and pain until I can have the pump put in. It may sound crazy to a lot of you's but I have never had a good LP. They were both very HORRIBLE experiences for me.

The intrathecal injections are not as bad or as likely to cause the same problems as a spinal tap because they aren't removing CSF. Although the proceedure is the same, once they have drawn out a little CSF to make sure that they are in, they use the same syringe/needle, with a bit of the CSF in it to inject the Baclofen.

I've never had a reaction to the intrathecal injections like one gets with the spinal tap. The only problem I've ever had was too much muscle relaxation following the injection. Until that happened, I hadn't realized how much I rely on the spasticity to get around. When the Baclofen injection decreased the spasticity too much, the legs were too weak to support my body weight for a few hours.

The other alternative if you do choose to have it, (and you will need to have it as a test before they will put in a pump), is to see if they will allow a radiologist to do it under fluoroscope (A form of X-ray).

For certain, if you've had problems with the spinal taps and require another one, ask for them to do it this way because then they can see exactly where they are placing the needle; so no chance of a "bad poke".

With love, Erika

you gave aperfect description of ADult or Spasmodic Torticollis. Essentially the neck/head doesn't move for a while (like when sleeping) and some muscles go into an intence spasm.

Making it move gently can relieve(some people can be also be low in magnesium, sodium etc which can cause spasms). Heat and gentle forced but sustained movement seem to work best, as does adjusting your sleeping position. Stress, overworking the shoulders &/or neck or not moving during sleep {or all above} can easily lead to torticollis.

Mine was relieved greatly by buying new pillows and fixing my electrolyte levels (they were out of wack). Every time I slept on my new & expensive "memory foam" pillow I would wake up to intense pain and a stuck head. Turns out the new pillows made me sleep more still - and it made my tired old body move very little at night - thus the neck would go into spasm overnight.

Whatever your issue- it is no fun, to say the least! Good luck and relief soon!!

Jane- thank you for that info!
ANN

so sorry you are going through that. compounded by an oblivious partner can only make it more frightening as you feel alone. I only wake up with hand/feet cramps. literally have to uncurl my fists and manually straighten out my feet. good times. I hope you get some relief very soon.

Jprinz, its funny you mention memory foam pillow, because that's what I sleep on. Actually, I have to sleep on 2 pillows and this little stuffed doggie that has pretty much lost most of his stuffing. I have to start my sleep in the fetal position and I wake up straight as a board. The memory foam is the only pillow I actually can get comfy on. The regular ones hurt my neck. All I know is my MS is getting worse and Im just getting alittle more scared each day.

Speaking of memory foam, I once tried one of those mattresses which are made of that.
I lasted two hours before the intense pain drove me back to my old bed. I guess it's the way Jprinz described it with the memory foam pillow. One does not move much on those things, relaxing into a fixed position, and the reaction of cramping up can be awful. I had them remove the mattress the next morning, had to pay 10% of the mattress cost, but there was no way I could ever sleep on that. This was long ago.

KittyLady, please try some magnesium pills to see if that helps. My potassium tends to take a dive, too, if I don't use 20 MEQ potassium pills a day. I regulate salt carefully, as Jprinz suggests is needed, to get about 1500 mg a day, not too much and not too little.
Since you don't get the baclofen pump for a while, it might help to try some other remedies.

I had NO reaction to the spinal tap years ago. I could not feel it. I am wondering if I am numb in that area, or if the great neurologist was so good at doing this that I couldn't feel it. He was a brilliant man, the one who told me to take magnesium when I could not tolerate Baclofen. Baclofen made me run into walls--one pill and through with that. Zanaflex made my muscles too weak to walk, released too much spasticity. Maybe I needed a smaller dose, but the magnesium relieved enough spasm and jerks so that I didn't try drugs again, except for the small Klonopin dose. I might add that I also take calcium, but always at a slightly lower amount than the magnesium, and for me that is also necessary.
It scares me how close I live to being a jerking spastic monster. What if I can't get magnesium pills some time. I'll be nothing like I am now. I will need intense sedation.

I guess all of this and all of our variables just goes to show that MS is not for sissies :wink:

Second me for being someone who spent good $ something new that turned out to be absolutely no good for my MS.

Like many of us KIttyLady, you may have to do a lot of trial and error to find what works best for your MS.