Has anyone who has been struggling through PMR for many years ever had significantly annoying pain in the neck and lower area of the skull ?
I'm trying to find out if this is PMR related or is it a separate issue caused by another neurological problem. Apparently, the main symptom of occipital neuralgia is chronic headache and the pain is commonly localized in the back, the neck and around the lower area of the head.
My rheumatologist says it is a PMR symptom and my neurologist says it is occipital neuralgia !! so - what does one do ?
Anyone run into this ?
Dave
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Dave7707
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Hello. A few questions to kick off. How long have you had it? Is it there all the time? It can also be a symptom of GCA so have you had any investigations? What dose of Pred are you on?
I am a ‘Brit’ who lives in California and have been on this blog ever since PMR my arrived almost 6 years ago. Starting at 20 mg. Prednisone, after about 6 months, my rheumatologist recommended taking Methotrexate (MTX) for approx.3 years. It certainly helped to reduce the activity of my immune system which typically is overactive in PMR conditions. Also my C-reactive protein and Erythrocyte Sedimentation Rate have dropped significantly – actually below the normal levels and have maintained these low levels for the last 4 years. GCA was definitely ruled out.
Before I commenced MTX, I was having large flares that seemed to reduce with MTX taken (weekly) at the same time as my daily prednisone dose, I had less flare and much less intensity of the flares that had occurred. I think that these DMARDs seem to ‘dampen’ down the underlying disease process rather than simply treating symptoms. I remember that it took a while (1-3 months) before the MTX seemed to become active.
I didn’t seem to have had any side effects with MTX – however, I distinctively noticed more fatigue and a bit more pain as the end of the MTX week arrived and improvements in these issues after taking my weekly MTX dose. I think that MTX definitely assisted me in maintaining my very slow prednisone taper program (thanks Eileen!!) with less pain and I reduced to 4mg Pred.
After 3 years of MTX, reducing on a very slow increment to 5 mg. and keeping prednisone at 4mg without any reduction while I did the MTX reduction. My rheumatologist informed me that 5 mg. or less of MTX basically has no influence on the system; therefore cease the MTX- which I did.
Since Oct. 2017 I have had minor flares and slow up & downs with prednisone from 4½ -6 mg.- not more than 10% per change (0.5 mg.).
Getting tired of the consistent discomfort and constant fatigue in this range, I was accepted into a research program in UCLA Medical for PMR patients to try the effects of Gabapentin starting last Feb. at 100mg Gabapentin – slowly to 300 mg. This had little or no effect and so I “crept” out of it 3 months later.
Now my latest concern is the apparent Occipital neuralgia that I referenced in my earlier blog. All your responses are very interesting and helpful and actually make me feel a bit better knowing that others have had the same miseries !
Blearyeyed really hits the spot with information that relates to some of my issues.
"Also my C-reactive protein and Erythrocyte Sedimentation Rate have dropped significantly – actually below the normal levels ..."
What - to negative levels? No, not trying to be clever, just that the "normal range" doctors quote at you for ESR are levels found in a large population, typically 10,000 or so, and range from 1 to 20 for healthy males. They aren't the range each patient can have without a problem , each person has their own personal normal which shouldn't vary more than a few points unless there is inflammation of some sort that is causing the raised rate..
Wonder why they didn't start by asking a load of PMR patients - plenty on the forums who have been put on gabapentin and it did not a lot!!!!
Me too. I have exactly what you describe. My doc thinks it’s polymyalgia related. I don’t know what to think. It feels like severe cramp and acts like cramp. I see my doc in just under 2 weeks and we will discuss. I could let you know.
I have been treated for Occipital and Trigeminal Neuralgia for over ten years , it has some similarities to the GCA symptoms but the pain in the head is in slightly different locations , and can come on very suddenly from enviromental triggers . You can go from a 2 to a 10 in a matter of seconds then the pain takes a few hours , a few days or a few weeks of slowly decreasing levels to return to a 2 again.
The Occipital Neuralgia causes some pain through the jaw , sometimes including a feeling of throbbing tooth ache in the back teeth.
It also causes pain deep in the ears like a gnawing earache .
The pain in the back of the head feels numb with mild throbbing and can make you feel Nausea.
It feels more like a swollen bruised pain around the lobes at the base of the skull , this numb , swollen pain travels down the centre of the neck and the centre top of the back .
It can also affect the back of the skull upto the ears .
It does not have the sharp intensity of migraine like pain or temporal cluster headaches but last for days after being triggered and is usually present as a numb ache when no trigger occurs.
The intensity of the pain changes very rapidly from the triggers , as do the lightening pains across the cheek and temples and through the eyes from the TN , again unlike the pretty steady growing , gnawing pain that I had with GCA .
Although it can be felt in the temples it affects the jaw and the back of the skull more , if it does cause headaches the type of headache is more like that on having the flu and centred around the sinus.
Unless the Neuralgia causes inflammation in the ears and jaw from being left untreated for a long time , it usually doesn't make a noticeable difference to your inflammatory markers on blood tests.
It can cause blurred vision , brain fog , dizziness , stiffness or crunching in the neck , pain on chewing and sensitivity to light and sound.
It is not surprising that people get GCA and Occipital Neuralgia confused if someone is already suffering PMR , unless you have suffered both , the description of the symptoms for both on a health sheet read the same.
ON and TN do not improve with steroids in the way GCA/ PMR does unless via injection and often not for long .
Long term neurological drugs like Pregbalin , Garbepentin , Carbamezapine , Tramadol and Paracetamol are prescribed . Sometimes Botox or anaesthetic injections are used directly into the skull area.
This is why , very much like if you suffer from Fibromyalgia , the pain can remain , or intensify if it isn't being investigated and treated separately when suffering from GCA or PMR when on Pred .
THIS! I have small cell vasculitis and I thought these symptoms were med or disease related. Then diagnosed with migraines, but no one sided head pain. Just sinus pain. Teeth, EAR, jaw, back of neck, down my muscle near spine. I thought I was going blind and deaf. I am not. It just feels like it. Migraine meds not helping yet. I will bring this up when I have ct scan on sinuses tomorrow. Thank you! I am so desperate for relief. Bless your heart! Glad others are out there!
I have pain in that area that I put down to poor posture at the computer during my career. I have quite significant Cervical Spondylosis. I have been troubled by horrible pain from it during my 3. 8 years with PMR and I agree, it is one of those pains you just can’t escape from, like toothache. I do get concerned from time to time about GCA that I understand, can cause pain at the back of the skull and that is the one that needs urgent action.
Occipital neuralgia can be caused by the vasculitis in GCA (GCA likes the occipital area of the brain as a home) and in that case the pain is likely to be fairly constant - Bee's descriptions are so good I won't add.
If it is accompanied by any other symptoms of PMR/GCA then the rheumy is justified in considering it to be related to "his" diagnosis - and the average neuro probably isn't very good at rheumatology!!!
But as Snazzy says, what's it like? What dose of pred? Does it improve with more pred?
And metho does not replace pred if you have a usual form of PMR - you still need enough pred, just, if you are lucky, it may be rather less. But it could be only 1 or 2mg
I had occipital headache as one of my initial PMR symptoms. It was actually more painful than the usual PMR symptoms I had. Fortunately, it went away quickly once I was on prednisone, and though I sometimes get a milder version, has mostly stayed away ever since. I’ve had PMR almost 3 years and currently take 6.5 mg.
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No, not trying to be clever, just that the "normal range" doctors quote at you for ESR are levels found in a large population, typically 10,000 or so, and range from 1 to 20 for healthy males. They aren't the range each patient can have without a problem , each person has their own personal normal which shouldn't vary more than a few points unless there is inflammation of some sort that is causing the raised rate..
Aching shoulders, upper arms and neck
Worse tinnitus and some head pain
Neuralgia and GCA
Has anyone had Occiptal Neuralgia that doctor thought might be GCA and treated it as such?
