Neck and back of head pain, is this part ... - Cure Parkinson's

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Neck and back of head pain, is this part of pd?

Sedona profile image
17 Replies

Lately I have been suffering severe pain in the back of my head and neck, along with a stiff neck. It began about a month or so ago with a stiff neck, some days severe, whereas I cannot turn my head sideways or up and down, some days more moderate, just a stiff, somewhat painful neck. Recently, the pain now radiates up the back of my head as well, again at times so severe that I feel sick to my stomach or as though I could pass out, whereas other times more of an ache or pressure. At night, if I lay on my back, the pressure hurts the back of my head and wakes me up. When I try to move or sit up, I feel extreme pain or pressure in the back of my head. This is impacting my quality of life more than the pd. My nero says it's probably from the rigidity caused by the pd, should I consult my gp? I don't want to take any more meds, and absolutely no pain or sleeping pills. I am selling my new living room furniture in order to buy something high backed to support my neck. Can this be caused by my pillows? What kind of bed pillows do you all recommend?

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Sedona profile image
Sedona
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17 Replies

There is a parkinsonian symptom known as "coat hanger pain" - if you google "coat hanger pain in parkinson's" (or something similar) you will find a lot of background on it as well as information on what folks find can help.

If, however, you can't identify what you feel with what is being described then do remember that just because you have parkinson's doesn't rule out more conventional causes of your symptoms!

It is sometimes very tempting for all of us or our Drs to plonk every symptom into the parkinson's bucket when, frankly, something routinely found in the non-parkinson's population may be amiss!

If I were you I'd make an appointment with my GP/family doctor just to discuss this... nothing else.. and have him/her focus on a good neck examination including, hopefully, an X-ray. Then if there is no obvious cause of problems, perhaps ask for physiotherapy so that you can be taught some movements that will benefit you.

Good luck!

Blondir profile image
Blondir in reply to

Well done brockie - I think you have just identified what I have been referring to as"back pack discomfort " its not pain as such but it is very wearing - fortunately I have an appointment (rare these days) with my PD Nurse on Monday

honeycombe3 profile image
honeycombe3

What a coincidence!! I've had this sort of pain on & off for years, starting I think from whiplash in an accident in 1987. Over the last 2-3 years I have had repeated amost cyclical bouts of pain from the top of the spine over my head causing pain, tightness, dizziness & nausea (even vomiting on odd occasions). I have described it as my 'gyroscope' not working & I have raised it with my GP, Consultant & PD nurse. They have all come across it in other patients with various diagnoses: labyrinthitis, Meniere's, etc etc.

2 days ago this was bothering me & for some reason I harked back to the accident. What is the first thing medics do in an RTA? They put on a neck collar. I searched for one I had more recently & wore it last night around the house & for part of the night's sleep. BINGO. Pain & soreness gone. Probably only temporarily , none the less - gone.

I wish I'd had this brainwave before i spent a small fortuine on specialist furniture including a Varier 'Gravity' chair (though this is a beautiful obejct on which I have slept whole nights).

I had never heard of 'coathanger effect' but I think it fits my symptoms & the collar is

cheap enough to be worth a try.

cabbagecottage profile image
cabbagecottage in reply to honeycombe3

What srt if collar did u have . We have recently bee given a master neck collar from th Physio .

driller profile image
driller

I also have this problem and had a scan done only to be told I have 3 disc's in my neck that are bad my nero thinks it happen because I fall a lot.

regards

ERIC

bawford profile image
bawford

I too have this. At first thought it was trying to keep my head from wobbling L to .R. Was told 1 ostioprossis, 2 degenerated vertibre, 3 arthritis, and 4 neck muscle spasm. All at base of head. Was put on lowest dosage of colizapine. Nasty stuff if I take two. Missed 2-3 hrs of family visiting at Thanksgiving due to a sudden snoozing act.

fwes profile image
fwes

I fear that I am getting boring, or at least repetitious. There are a lot of posts on Coconut Oil and the success for mollifying PD symptoms that some have experienced (search Coconut Oil or follow the Activities from my Profile). I have not experienced high back pain, although I have had a lot of neck and shoulder stiffness, together with significant low back pain.

I have been freed from the stiffness and have gotten significant pain relief from 2T Coconut Oil at each meal and at bedtime. (If you are thinking of trying CO, please don't start at this does level; it can cause nausea and possible loose bowels if you increase the dose too quickly; probably start at 1t each meal and increase the dose gradually; of course there is no guarantee that it will work for you, but the good news is that it does not have the down-sides of the meds). The reason that I am confident that it helps with my low back pain is that if I get distracted and go more than 6 hours between doses, my first reminder is the return of the low back pain, which goes away about 15 minutes after I take the next dose. I use LouAna Pure CO from Walmart, $6/quart.

I admit that this sounds implausible. I delayed trying it for 3 months myself. The current evidence is that CO has provided relief for several PWP's and has also provided little relief for some others, albeit mostly at very low doses. We are conducting a systematic data collection (Non-clinical Trial) to see if we can establish anecdotal statistical evidence regarding the efficacy of CO for PWP.

Good Luck!

PS 5 doctors have observed and acknowledged the benefits that I have gotten from CO.

6780 profile image
6780 in reply to fwes

thanks for co tip and source to get it. c

JOSANA profile image
JOSANA

I acquired that same pain that you describe. Let's compare notes. I had two cervical fusions on my neck. One in 1984 Anterior Fusion; and a posterior fusion in 1990. the Doctors are attributing that to my pain. BUT they can't find anything. I even had a Rhizotomy with no luck. One thing that I can say that is real. I had a huge stressor, existing condition and moved to the mountains at the same time. Had to get on oxygen. Blood pressure problems. The pain on my head and neck causes me to throw up. I have lost30 pounds in the past month or so. (For me that is good). I have a plan. Where do you live. What State.

Sedona profile image
Sedona in reply to JOSANA

Though my neck pain has improved greatly now that I sit in a recliner that supports my head, once in a while I have a reoccurance. I believe it's from straining my neck when I am trying to sit up in bed. I know it sounds weird, but I can't sit up on my own and in trying to get out of bed, I try to pull myself up by my blankets. I still get the pain in the back of my head at night, but find it hard to roll over on my side, so usually just prop my pillows up and sleep sitting up when it occurs or just say to heck with trying to sleep and get up. I rarely sleep for more than 4 hours anyways. Not sure I could function without coffee!

judam9 profile image
judam9

hi sedona, i have had the same problem with my neck. it was very painful to move my head in any direction. and my doctor noticed it . and he sent me to a physical therapist to loosen up my neck and not have the pain. and every morning i do the exercise for the neck. no exceptions. and now i can move my head in any direction. God bless the therapist, and the neurologist. i don't know the reason, but it probably was arthritis . we aren't getting younger.

sniper82 profile image
sniper82

Hi. I have never been diagnosed with anything but I tried to google constant pain in the back of my head and neck. And as I read through your story and the stories of others I'd just like to ask if any of you have joint pains attach to this head and neck pain? I feel constant joint pains on my wrists and ankles as much as I get the pain on my neck. When ever I get the neck pain I can feel my eyes are getting heavy and I feel tired during those days. Today it hurts a little and tomorrow it would be gone for a few days. I've only noticed these pains a little more when my joint pains got worse than all the other times I felt it. I also from time to time feel pain in the surrounding areas of my heart. Almost as if it's a heart attack but it isn't(it's not that painful but nun the less I get them). The all mentioned pain isn't really that painful just slight uncomfortable and sometimes worse then other days. I don't feel sick other than those pains so I'm just wondering if someone out there has the same symptoms?

Ninasabrina profile image
Ninasabrina in reply to sniper82

Hi.im having the same.and doc has diagnosed me with a neck facet pain syndrome.mayb u want to check further on that.

6780 profile image
6780

it could be pd posture with forward head. this puts a strain on the neck.

strength camp on youtube has 4 easy neck exercises which are good for posture at the least and might provide relief over time.

cabbagecottage profile image
cabbagecottage

Will you all try outusing a soft neck support collar . They are Kayla few pounds through the site PHYSIO ROOM .

It's not a complete cure but does take the weight off the dropped head .

Its cervical dystonia . Same in fingers wrists . Ankles lots of places

henten21 profile image
henten21

I've had the same symptoms, believe I need a new mattress as well as another kind of pillows. I'm 59 yrs. young and symptoms could be from whiplash,but thank God I'm drugs free. I can relate to everyone's comment and I will be trying the neck collar. Thanks.

billiards profile image
billiards

Billiards, i also have neck pain too. Actually the PD was first diagnosed as spondalyties . But on the advice of the Dr. saw a neuro and was confirmed PD, and since 2010 I am under PD treatment. the pain in my case is when i am looking down into the cell phone and on waking up in the morning but disappears by sitting on a chair and meditating.

regards

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