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.

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 ). 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.

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