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06-10-2010, 02:38 PM   #1
GoJohnnyGo
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Occipital Neuralgia

Basically, it feels like someone has taken a baseball bat to the back of my neck and is now holding me in a headlock.

The epicenter of the pain is in the C5 and C6 vertebrae (base of my neck) pressing on the nerve, radiating upwards into the rear right of my skull and between the eyes, and downwards into the right shoulderblade.

The fusing of my spine is brought about by Ankylosing Spondylitis, an auto-immune Rheumatoid Arthritis associated with Crohn's Disease.

I am barely able to raise my head to look straight up. I can barely swivel my neck side-to-side. I have a perpetual low-grade headache and my eyes are sensitive to light.

I've made appointments to see my physiotherapist and my regular doctor. I'm still on an indeterminate wait list to see a Rheumatologist.

Sorry for kvetching. I know I haven't been around here much lately.
06-10-2010, 04:23 PM   #2
D Bergy
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I have had these same symptoms, but did not realize there was a name attached to it.

My problem was as a direct result of driving a fork lift with my head most often turned backwards to see where I was going. It would hit me on and off unpredictably, quite often even when I had not been driving for a couple of days.

It has been better since I no longer have that particular job, but it does act up on occasion.

I have never had an X-Ray to see if any spinal fusion is going on, but I do not think that is the case. I do think there is damage from the repetitive motion.

I do see a Chiropractor on occasion, and she does adjust the neck area if I have trouble with it. It is hard to tell if it helps as the problem is intermittent.

I only know of two possible treatments for Ankylosing Spondylitis. One is Low Dose Naltrexone. The other is an alternative frequency treatment, and I only know of one anecdotal case of treating for this condition in this way. The claim is that treatment broke up the calcification, and that medical students in Germany witnessed the results of this decalcification.

That is all I know about it. I have never treated for this personally, but given that I already take LDN, I may be treating for it anyway.

Dan
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Last edited by D Bergy; 06-10-2010 at 04:27 PM.
06-10-2010, 05:42 PM   #3
Entchen
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Ouch, you poor thing! I really hope that you can get in to those appointments quickly and that they can help. Take good care.
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06-10-2010, 07:18 PM   #4
GoJohnnyGo
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Dumbass Vice President at work decided last week that all workstations should have the CPUs under the desk instead of on top because "it looks less cluttered." Cables are only so long, which means monitors are pushed back a foot and a half. I have to lean forward to read what's on my monitor, straining my neck.

Needless to say I complained to the Occupational Health and Safety nurse. Hopefully this problem is remedied.

That, and the rainy weather we've been having has not been kind to my arthritis.
06-10-2010, 09:30 PM   #5
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My poor GJG, you sound like you are in alot of discomfort. I have been having neck problems just below the occipital... I have osteoarthritis, and with all the pred and nexium eating the calcium I am worried a tad of osteoporosis. I noticed it just after quading with a helmet on, bouncing around the trails 3 times a day. Going for massage therapy and when I see my GP next month I will ask for an xray.

I hope your company helps you out with the problem at work. Hugs!
06-11-2010, 12:13 AM   #6
GoJohnnyGo
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I have had these same symptoms, but did not realize there was a name attached to it.
It's also called Arnold's Neuralgia. I just hope it doesn't lead to me tilting my head to one side, sticking my bottom lip out and stating "whatchoo talkin' about Willis?"

06-11-2010, 05:52 AM   #7
Tan
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OH GJG you poor thing as if you didn't have enough going on already!! I hope they fix your work station up that is so wrong they shouldn't be allow to change it like that especially if it is causing you pain and issues. Good luck I hope they change it back for you and you can get some relief.
06-11-2010, 02:06 PM   #8
Silvermoon
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It's also called Arnold's Neuralgia. I just hope it doesn't lead to me tilting my head to one side, sticking my bottom lip out and stating "whatchoo talkin' about Willis?"


LMAO!!

But seriously, that does suck. I get aches and pains, but nothing that bad...
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06-11-2010, 02:53 PM   #9
GoJohnnyGo
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Feeling a lot better today.

Back to my previously scheduled pain and suffering, already in progress.
06-11-2010, 03:20 PM   #10
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glad it had eased off somewhat now, GJG... had to laugh at your Willis reference

and i agree that the work station issue has to be put right for you - they could find themselves with a big compensation claim if you can prove the additional stress on your posture has caused pain & exacerbation of your neck condition...
06-11-2010, 03:42 PM   #11
D Bergy
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One thing that does help my neck pain is a small bag of some kind of dried beans that you put in the microwave to heat it up.

I put this on the back of my neck and it loosens up the muscles and gives pretty good relief. Cheap and fairly effective. I tend to carry stress in my shoulders and neck. This tightens up these muscles and can bring on the problem.

Dan

Last edited by D Bergy; 06-11-2010 at 03:46 PM.
06-11-2010, 04:33 PM   #12
GoJohnnyGo
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Yeah, I've been doing the ice/heat packs all week, plus using my portable TENS unit.

Have gotten some mobility back and the swelling/headache is gone.
06-17-2010, 01:59 AM   #13
GoJohnnyGo
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Heh.

Issue came up at a staff meeting. Supervisor was sort of snotty about accommodating GoJohnnyGo (designated office sick guy whiner) as an exception when everyone else said they had the same problem. Democracy prevails. LOL.
06-17-2010, 02:28 AM   #14
Entchen
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Um, if everyone else has the same problem then everyone should be accommodated.

That's pathetic.
06-17-2010, 01:11 PM   #15
D Bergy
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We have an office with 15 employees, and I am happy to get anything they want to make there work more comfortable. I really do not understand why this is such a big deal with some companies. A person should be able to do there work without discomfort, or ergonomic stress.

W even have a massage chair for anyone who needs it.

Dan
06-17-2010, 05:52 PM   #16
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In the workplace where my husband works, the company bends over backwards to keep the employees happy. Turnovers cost alot of money, easier to spend a few bucks to keep them happy, for instance $300.00 leather boots to keep the moisture out, and insoles so their feet dont hurt from standing and climbing all day. Their most important motto is "family first", can't buy that one.
06-17-2010, 06:01 PM   #17
GoJohnnyGo
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Sorry, I guess I wasn't clear earlier. The company relented because the entire staff had issues with the workstation ergonomics.
06-17-2010, 06:02 PM   #18
Entchen
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Oh, okay, that's good.
04-02-2011, 03:20 AM   #19
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I was a bus driver, in UK. The job was becoming a nightmare because of speed ramps, could be crossing as many as 350 a day in a vehicle that doesnt cope very well. I reckoned about 25000 a year.
Started with problem with headaches, about 10 years ago, then a dull ache right at the top of the neck which was treated by physio. Then I had a minor car bump, whiplash, return of the headaches/dull ache, and then muscle spasms whilst bus driving, culminating in a massive muscle spasm affecting my neck, back and both shoulders. It felt like a carpet knife slicing through my body. Havent worked since. The symptoms were widespread, incredible and VERY sensitive.
MRI scan shows multilevel disc degeneration, esp CT joint area, but there is another problem that doesnt show up on xray, C1.2.3 area which has now been diagnosed as Occipital Neuralgia. I understand that it is simply inflammation and pressure on the nerves/soft tissue which is continually aggravated by natural movement of the head.A vicious circle which is difficult to diagnose, treat, and break.
It feels like there is a golfball lodged in there, and that my entire head and face is being squashed in a vice and is going to burst.
Im on Pregabalin which definately helps, and having physio, pulsed radiofrequency, laser, and wheatbags/ice treatment all helping. I tried wearing a neck brace to limit the aggravation but the rest of the neck started stiffening up. No good for me. Its going to be a long and hard road, but all the web I have come accross say that with careful management, there is no reason that a full recovery should not be possible, assuming no permanent nerve damage.
This is my own experience, I hope it may help others suffering from this terrible curse or suggest possible options. Ask your Doctor first.
04-02-2011, 10:26 AM   #20
Astra
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Hiya Desperate
and welcome

I've got this Arnold's too, and it has been reduced dramatically with 25mg Amitriptyline.
I have also had some sessions with an osteopath, expensive but worth it.
This neuralgia is the pits! Like GJG said it's like a baseball bat being whacked on the back of your head. Sometimes I feel like my eyeball is being sucked out with a Hoover!
Ask your doc about Amitriptyline, it also has some effect on the bowels by reducing spasms if you're a Crohnie too?
xxx
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04-02-2011, 04:44 PM   #21
UKDESPERATE
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Hi Joan and thanks for the comments. Not too far away either!
How did yours start, and have you come across anyone in the medical profession that knows anything about this or has some experience treating it? Ive seen 6 consultants, and two pain management clinics and they have all said its very rare to be injured up there, or nothing on xray, or its referred pain from lower down. The last one started treating me for acute migraine. the moment I came off the pregabalin, POW!!!! My GP has had me down for sinusitis, eyestrain, panic attacks,stress. I was on amitriptyline a long time ago, if I remember I had a lot of side effects, Citalopram too. But my GP was no expert in prescribing or managing. A big learning curve for us both. Maybe Ill ask about them again. Many thanks.
Yes I started with these awful headaches, a feeling like the whole front of my face is going to explode about ten years ago, but it was only after the massive muscle spasm I had, leaving my neck bad, did a connection between the two manifest itself. It starts with a dull ache in the forehead which spreads all over the temples, cheeks etc and feels as if someone is trying to push my eyeballs out from behind. Ive also experienced sharp stabbing pains, throbbing, eye disturbances and a feeling like ive downed two bottles of red wine! The only guaranteed relief is to lie down.
04-03-2011, 08:17 AM   #22
Astra
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Hiya Desperate

Yeah, not so far from me!
You really do sound desperate! You're in a lot of pain and this needs to be investigated. One of my symptoms is feeling like I've been scalped, scalp pain is very common with occipital neuralgia.
I went to an osteopath, it was him who diagnosed Arnold's straight away. I don't know how it happened, but I did have a neck injury years ago in work, I work with autistic kids and one of them 'got me'. Another reason is having your head down for long periods of time, like when you're on a laptop looking down.
I had 4 sessions with the osteopath, the effect was immediate, it consists of manipulation and realignment, movement and mobility. He discovered that one arm was longer than the other and that I was over compensating by hunching up my shoulder and arm to relieve the pain. He realigned it, dunno how but he did! He showed me exercises to do, such as pushing my chin in and keeping straight, posture is important, keeping your head up all the time helps, especially when sitting.
I've also seen a chiropractor but wasn't happy with his consult. That was years ago tho.
I believe the amitriptyline has helped, in helping me to sleep at least!
Hope you find some relief, check out an osteopath, worth it
xxx
04-06-2011, 01:09 PM   #23
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Glad I read this thread. I had the C4-C5 fused several years ago for pain etc.

Now I'm having recurring pain/weakness in head, neck, shoulders, arms and hands (both sides). MRI and x-rays weren't "clear enough" for neurosurgeon so am having a myelogram done 5/26/11 with CT scan at the same time, then the nerve conduction study on the 27th. Hope is shows something definnitive and they can fix it as I pretty much can't stand the pain any longer.
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04-08-2011, 01:13 PM   #24
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Hi joan,
Thanks again for your comments, very interesting. I do get some scalp tenderness, esp when wasing hair, but not like you describe. Ive no doubt that everyone has their own unique version of this curse, and their own relief too, Im seeing a physio at the moment, and having pulsed radiofrequency treatment and some mobilisation, she has found my C1,2,3 very tight and this is probably increasing pressure on the nerves. Will bear the osteopath in mind, seen just about everyone else. LOL.
I used to do a lot of swimming and intend to get back after a break of about 10 years, as soon as I can. Im hoping that htis will help keep me supple.
Take care. Paul.
04-08-2011, 01:30 PM   #25
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Good Luck Paul!
Swimming should be good, I can only swim to the bottom and back, lol
And anyway it won't do me neck any good, I swim with my head and chin up so I don't get me hair wet!
xxx
04-08-2011, 01:36 PM   #26
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Hi karen
Gosh it does sound like youre in a weary way. Its something Im trying to avoid, is to have the doctors poke around. Im lucky in that I hope to make a return to swimming, and keep everything mobile and supple as well as maybe loosing a wee bit of weight.
Hope everything goes OK for you in 6 weeks.
Paul.
04-12-2011, 03:24 PM   #27
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Thanks Paul, I know it will. It has to be better than what I have been going thru.

It all started with what is know as "triger finger" on the left ring finger, which, if you ask me, was a pretty good party trick. It has now progressed to "I can't close my left hand and it hurts like hell!". So anything they find will be good.

I have gone the route of PT, massage, etc. All makes me feel good for a day or two then the pain/weakness is back in full force. So thought it was time I just took care of it permanently.

HMMMM....permanently......gives pause for thought as I have this same area operated on twice before. But every 10 years may be as permanent as I get with this Crohn's and its corresponding extraintestinal stuff that goes along with it.
04-12-2011, 09:18 PM   #28
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I have a number of patients with neuropathic pain. The first-line medication I use is Gabapentin. If that fails, you can try Lyrica (Pregabalin). Also Flexeril (Cyclobenzaprine). Amitriptyline can help if you can tolerate the side effects. If you have both arthritis and neuropathic pain, the best medication is Methadone. I know the latter sounds a little scary, but it acts on both opioid and NMDA receptors.

Dr. S (spouse of a Crohn's sufferer)
04-13-2011, 03:04 AM   #29
UKDESPERATE
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Thanks Dr S,
My problems really started about 10-12 years ago with a real problem with headaches, not the normal type, but exploding head syndrome!! eye, facial and forehead pain, throbbing, stabbing and a feeling like the head was in a vice and going to burst. Much investigation revealed no real cause and no medication seemed to work. They had stabs at sinuses, panic attacks, eyestrain and finally stress. In 2005 I started with a little discomfort right at the top of the neck, and had some physio, very effective. But the niggle slowly came back. Then in 2008, a minor car accident, whiplash, 3 months later the start of the eye disturbances, then 7 months later a protective muscle spasm whilst driving a bus with rough suspension over a route with hundreds of speed ramps, followed 4 months later by a massive muscle spasm under the same circumstances affecting neck, shoulders and right down my back. MRI scan revealed multilevel disc degenaration with some pressure on the nerves around the CT joint area but nothing showed up at the top of the neck. But at this stage, a link between the headaches and the top of the neck became clear, when one was bad...... The common factor seemed to be anything to do with leaning forwards or looking down. All my hobbies, gardening, DIY, bus+car restoration,even working on the PC. I was a bus driver, and of course one is leaning forwards over the steering wheel, and I have posted a clip BUS DRIVERS AND SPEED RAMPS on Youtube to show what we were being subject to. It was becoming clear that it was the speedramps that were the real cause of all this and I have just officially been diagnosed as Occipital Neuralgia. very rare over here apparently.
Over the last 3 years, I have seen 6 consultants all of whom have failed to diagnose...Nothing on xray....its very rare to sustain injury here.....its referred pain and so on.
Nothing shows on xray so it has to be irritation and aggravation of the nerves C2 ish. I have had much treatment in the last 3 years including guided injections, occipital injections, various physio and medications. Although pregabalin takes the edge off this, it doesnt get to the heart of the problem. My physio did another assessment and has just started doing mobilisation, firstly at C2ish level, and is now working downwards. And hey guess what, I am finally getting some relief. So presumably I hadnt totally recovered from the massive mussive muscle spasm and the stiffness was causing that little extra pressure on C2. Remove the stiffness...
I wonder if this could be of help to some of your ON patients???.
Greatfully and hopefully,
Yours, Paul.
04-13-2011, 03:09 AM   #30
UKDESPERATE
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Incidentally, in 2005 the physio was I believe Pulsed radiofrquency and Laser.
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