neck pain: My husband has PSP, for almost... - PSP Association

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neck pain

ncgardener799 profile image
20 Replies

My husband has PSP, for almost 7 years now. His progression has been a slow decline so far, but lately he is complaining of neck and shoulder pain at night when trying to sleep in bed. He is not one to complain of pain so this must be very uncomfortable for him to mention it. During the day when he is sitting up in recliner or moving about the house he does not have much discomfort, but it occurs as soon as he gets into bed at night. I have tried different pillow positions, heating pad, massage, muscle rub medications, and anti inflammatory medications. Heat seems to help, but only slightly. Has anyone tried Botox injections or muscle relaxing medications for this problem?

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ncgardener799
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20 Replies
lesauerbach profile image
lesauerbach

My wife had PSP and also suffered from cervical dystonia, a twisting of the neck muscle. The only treatment that gave her relief was botox. A word of caution: find a doctor who is experienced with this treatment; it took us a couple of tries before we found the right one.

Kasenda profile image
Kasenda

Our GP prescribed Diazepam which does help the neck spasm.

ConcernedEx profile image
ConcernedEx

I’ve heard Botox works. Also, have you tried getting a hospital type bed - one that raises? They have some that also come with massage features. My experienced neck problems and pains and had Fushion surgery …..I don’t suggest doing that AT ALL. The surgeon cut his vocal cords in worrier - causing more damage to his psp soul.

T-val profile image
T-val in reply toConcernedEx

I was about to suggest the same thing. The hospital bed is a godsend for my Mum as she has the pillows raised so not much different to her recliner position.

ConcernedEx profile image
ConcernedEx

Sorry, type error that was supposed to be “cut his vocal cords during surgery”

Richard33 profile image
Richard33 in reply toConcernedEx

If you ever post something there is an option to edit it later if you open your post 😀. (and Fusion surgery! Have we not enough to deal with!)Richard

ConcernedEx profile image
ConcernedEx in reply toRichard33

Excuse me, but I do not understand your reply?

Am I not allowed to post that my experiences with my ex? Is this not a safe place for those who have and/or are caring for patients with PSP?

Richard33 profile image
Richard33 in reply toConcernedEx

Hi, Sorry!!! I have edited my response so it makes more sense. No offence or criticism meant in any way.

ConcernedEx profile image
ConcernedEx in reply toRichard33

Thank you for your apology- accepted.

Atomic55 profile image
Atomic55

My partner has had Botox in hands, arms and chest (to reduce stiffness) not been successful. Tends to be more successful if patient has some mobility and is able to keep movement regular to keep muscles and tendons flexing. My partner limited control if any and needed therapy alongside the Botox but with Covid this wasn’t possible and now he’s lost virtually all movement in his hands.

daddyt profile image
daddyt

I experience some dystonia in the neck that affects my right shoulder and arm. Heat and a little extra Tylenol help me for now. Botox may be the solution for your husband. It works for my right leg and foot.

ncgardener799 profile image
ncgardener799

Thank you everyone for suggestions. His Dr prescribed a muscle relaxer and thankfully last night we both had a good night sleep.

bazooka111 profile image
bazooka111 in reply toncgardener799

Happy to hear!!! ((Hugs))

mjtogether profile image
mjtogether

Baclofen and a massage w/heat helps my husband so far with muscle pain.

am2015 profile image
am2015

I'm sorry but we never used Botox on Mum. We would do massage, a hospital bed and bought a firm memory foam pillow to help. All the best with your husband.

Planthead profile image
Planthead

If you are in the UK, you will have to be referred to a consultant that does it, he could be a parkinsons or Ms specialist. It is effective to begin with, but has very limited use, once the limbs are fully locked. Worth a try as it will under the NHS.

oilman1 profile image
oilman1

I use CBD creme on my wife's neck and it seems to help some.

ladydog255 profile image
ladydog255

My husband has the same problem. He finds a neck brace (one from a drug store works). He might wear it to bed or sitting in his recliner. This might work until you can set up the BOTOX.

Cianodude profile image
Cianodude

Hi my mum has CBD shes waiting for an appointment for botulinum toxins injections and theyve started her on rivotril which is similar to baclofen drug....has anyone used rivotril? She has total spasticity and dystonia in both hands and arms..

MRSYafffle profile image
MRSYafffle

My mum has had similar aches and pains. She has acupuncture and is on codine and paracetamol with ibuprofen gel. This mix is helping at the moment, her anti depressants in the evening are supposed to be helping too.

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