This Is MS Multiple Sclerosis Community: Knowledge & Support

I have had an occasional symptom for 15 odd years now but it's recently returned very strongly. Just wondering if any of you MS'ers also have it?

My actual head & neck goes numb at night - I usually wake up with this symptom. It sometimes includes my arm or arms and hands too. Once I move a bit, massage my neck and move my arms, then a gradual "trickling" feeling occurs in the numb bit and the feeling gradually returns. There is no change in temperature in the numb area, just a total lack of feeling.

I have noticed that this symptom occurs before a relapse. It also happens when I change pillow-height. Recently I used two newer pillows at it's happened a few nights in a row so I'm going back to the single old pillow, and hopefully it will go.

I am also wondering, with all the CCSVI talk in the air, is it somehow related to this?
Does anyone else get this peculiar symptom?
I have asked my neuro in the past but he dismissed it as not MS, but it happens during times of MS activity..........

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

I get an instant shot of pain and tightness in my neck, back of my head, and I can sometimes feel it creeping to my face. Like from my neck it'll move around to my ears and then to my cheeks and I can feel the tightness in my mouth. Makes me want to grind my teeth but I resist.

I can also make it feel better with a quick massage and by stretching my neck and turning my head from side to side a few times. I haven't mentioned this to my neuro but mine comes in goes pretty quickly. About 10 minutes of tightness and then it starts to fade away.

I am probably zero help but I just wanted to share my experience. Hopefully it'll go away when you switch back to the one pillow.

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October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

hey WW...
sorry you're having that morning numbness stuff! Since you asked, in CCSVI the jugular veins are blocked. When we lie down at night, the jugulars take the blood back to the heart. If they are blocked, they can't do that and pressure and reflux can build. When we're upright, the vertebral veins help the jugulars. Lots of folks wake up to find themselves numb or in a relapse. In CCSVI, this is because reflux builds up over night. Once you're upright, the circulation tries to correct.

Something to try...If you can put some hard cover books/boards under the head of your bed to raise in a few inches, see if that helps. Keep the one pillow, but raise the head of the bed (like the inclined bed therapy) This was suggested to us by a cardio doc before Jeff had his surgery.

Hope something helps!
feel better,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I get 2 things at night that I don't get during the day: dead numb arms (as if I have been laying on them even though I haven't been) and mild tremors. Both these symptoms manage to wake me up during the night. I also get the last 2 fingers on each hand go completely numb at night.

LR--Are you very active physically? Do you exercise and get the blood really moving? For a time now with attention on the blood flow (veins especially), I have wondered if MS patients have a slower rate of flow which then allows any substance in the blood (I'm thinking "insulin" of course) to be in contact with the vessel walls for a longer period of time.

Perhaps the "push factor" from the heart or the "massage factor" of the smooth muscles is not enough to move the blood at the proper speed; perhaps the muscles in your fingers, hands, arms simply are not getting enough oxygen.

Although every magazine article I have read on the subject says a person should not exercise immediately before going to bed, maybe you could try exercising for a week and see if it makes a difference. Just a thought.

I don't do much exercise no (I have just bought an eliptical machine so should be starting on that soon) I can try and do some exercise at night. My heartrate is also very very slow between 45-60 bpm despite me being very unfit! I think we talked about this before but I have been diagnosed with high levels of insulin and my blood sugars were not being manged efficently, I was going from high blood sugars to hypoglycemic attacks. That has all stopped now thankfully plus I am eating more protein and less carbs to stabilise it further. I also take spirulina which helps.

Thanks for your reply LC

I mentioned it before, my wife (RRMS) when feels slight numbness in her fingers and exercises it completely disappears in few minutes and at least for 2-3 hours!
She is training with vibro machine usualy early at night and this prooves that CSVI theory (note the absence of first "C" cause it may be not congenital) has something to do with MS!

The first "C" in CCSVI is for "Chronic" (not congenital).

NHE

You are absolutely right NHE, I confuse it with a topic where somebody ask if CCSVI is congenital or not, Cheer posted prof. Zamboni findings where people in Italy with CSVI 20 years ago have currently MS!

Thanks for the replies.
I used a lower pillow last night and there was less numbness. Higher pillows = more numbness.
I am going to explore how to raise the mattress 15cm, it's worth a try.

Loveactually - this is not so much a sudden thing like your shot of pain (could that be Lhermitte's sign, perhaps?) but a gradual thing while asleep. Interesting that massage also helps work it out for you, just like the numbness for me.

Cheer I will try to raise the mattress. I suppose I was just curious that the use of two higher pillows caused the numbness to happen, whereas lying flat did not so much.....perhaps my neck is out of alignment at night and when the pressure builds up of reflux blood it puts pressure on nerves and that's the numbness - if it were circulatory numbness there would be a temperature difference, but there isin't when the numbness is in my arms and hands.

LR1234 - yes that's it exactly, totally dead numb arms and fingers for me too - along with a numb head and neck. It has to be the weirdest feeling.

Lynda - your exercise idea is a good one. I was walking a lot (for me!) up to about 3 weeks ago but had to stop because we all got a virus. I will start my evening walks again.

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.