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        Cluster Headache Help and Support >> Cluster Headache Specific >> Neck Pain...
        
(Message started by: Jill on Oct 15^th, 2007, 2:58am)

Title: Neck Pain...
Post by Jill on Oct 15^th, 2007, 2:58am

Hi all...

I am hoping that you can help me out with something regarding neck pain with CH.

For the last couple of weeks I have had some neck pain, mostly on the side of the clusters. I thought that I had just slept on it wrong but it hasnt gone way and has actually gotten worse lately.

The pain is hard to explain, not really dull but not too sharp either. Every time I move my neck the wrong way it shoots up pain into my temple and around my eye - like volts of electricity. There is no lump or anything.

Has anyone else experienced neck pain with clusters? Does it make your head feel worse?

Thank you for the help!

Jill

Title: Re: Neck Pain...
Post by Wayne on Oct 15^th, 2007, 5:54am

Hi Jill

Oh yes, for a while, before I was diagnosed, I was absolutely convinced that the headaches I was getting were caused by something wrong with my neck. I even bought a special pillow, did neck excercises etc because my neck was always stiff and achy.
The neck thing though, for me, was and is completely tied in with CH, treating the CH treated the neck too.

Cheers,

Wayne

Title: Re: Neck Pain...
Post by George_J on Oct 15^th, 2007, 10:46am

Yes, Jill. Very common symptom with my CH cycles. Like Wayne, I was convinced for years that the "neck thing" was actually triggering the headaches. I do get a ganglion lump, however.

But when the headaches go, the neck pain goes as well. They're all part of the same thing.

You may find that putting ice wrapped in a wet cloth, or a bag of frozen vegetables on your neck might dial the CH down a notch. It works for me--but you may need to withdraw the cold gradually, by reducing the ice slowly to nothing, and finishing with just a wet cloth. Taking it away all at once can make the headache re-erupt into full bloom.

It's worth a try.

Best wishes,

George

Title: Re: Neck Pain...
Post by Emily on Oct 17^th, 2007, 9:02am

I get it too, but I had also assumed that it's to do with the pacing when the attack hits, or just sleeping awkwardly. I feel like I could do with a really good massage and like my neck and even into my should are tense all the time.

Could this be classed as a shadow? It's around, even when I'm not about to get hit.

Title: Re: Neck Pain...
Post by Jill on Oct 17^th, 2007, 9:16am

Thanks for the replies..

The neck pain has become worse over the last few days and no matter what I try, nothing seems to help much. Icy hot helps some but it burns like crazy.

It is more than just being tense, it is painful and I find that turning my head certain ways causes lightning bolts of pain to be sent to my left eye. It is so strange because I have never really had anything like this before, neck pain yes but not this intense.

I cant tell if that is what is causing the headaches to be worse or vice versa. Either way - it sucks!

on 10/17/07 at 09:02:53, Emily wrote:

Could this be classed as a shadow? It's around, even when I'm not about to get hit.

as to the shadows - I cant say how others classify it but this isnt a shadow for me. Shadows, for me, mirror attacks but are not so severe. They are somewhat painful, mostly like the beast reminding you that he is there. I feel like with shadows I am on guard waiting for it to go full bloom.

Also, I decipher them as that because energy drinks seem to calm them down some where as nothing helps my full blown attacks.

Again, others might classify them differently and this is just me. Hope that it helps.

Jill

Title: Re: Neck Pain...
Post by VinceFromOhio on Oct 19^th, 2007, 2:12am

on 10/15/07 at 02:58:05, Jill wrote:

Every time I move my neck the wrong way it shoots up pain into my temple and around my eye - like volts of electricity.
Jill

Hi Jill,

I get the exact same thing, especially once I'm well into a cycle. In my case, the pain seems to stem from my actual headache ritual, which involves putting pressure on the back of my neck, then turning my head until I hear a crack or pop - which seems to relieve pressure. My neck is understandably sore and sensitive after I've been doing this for a few weeks. I now have a herniated disk located at C-4, which is basically my upper back at the base of my neck. This injury is the direct result of me fighting the beast for so many years.

My advice is - pay attention to what you're doing DURING an attack - that's probably what's causing your neck pain later on, which you're going to notice more during those times when you're not fighting a headache.

I hope you feel better.
Best Always, Vince

Title: Re: Neck Pain...
Post by lexi919 on Oct 19^th, 2007, 3:27am

my thing is a bag of ice on the back of the neck, one on my left temple and i usually fall asleep with it so the whole thing of a headache erupting again does not happen.

Title: Re: Neck Pain...
Post by horsegirl on Oct 19^th, 2007, 7:57pm

I have had these ha 's for 30 years, and realized twice , including my last cycle , that a week or so before my cycle started I had a very painful stiff neck, untill I got on this website I didn't think it could be related , now I'm not so sure. My cycle starts after it goes away though. always with my ha Ive had neck tension though. What concerns me is this sharp pain you get when you turn your head, that sounds like a pinched nerve , or blood flow to your artery in your neck disrupted, I don't know . no doctor, but I would go to one asap and check, good luck , eve

Title: Re: Neck Pain...
Post by Linda_Howell on Oct 19^th, 2007, 8:12pm

Never had problems with my neck, but you said this to me in one of your nasty pm's recently so I am suggesting that maybe this can help your neck problem.

Quote:

the narcotics help!

just trying to help is all. ;;D

Title: Re: Neck Pain...
Post by Jill on Oct 20^th, 2007, 1:57am

on 10/19/07 at 20:12:56, Linda_Howell wrote:

just trying to help is all. ;;D

Yeah Linda,

I am sure that you are trying to help. ::)

Why did you start this publically and why would you call that PM nasty? Trying to start drama? [smiley=huh.gif]

I am not going to defend myself or get into anything with you, if you have a problem with me than PM me. And dont try to call me out or say things that arent true in public. That is not cool - though I probably should have expected it from you.

Oh well. Sorry to the rest of you.

Jill

Title: Re: Neck Pain...
Post by sldrswyfe on Oct 20^th, 2007, 8:51am

Dearest Jill,

Many of us have neck problems. It's clearly decribed in medical documentation in the study of clusterheadache symptoms, etc. Even my shoulder blade aches at times. I mentioned this to Dr's a few times..then when I was fortunate enough to find all of this information, I see it's part of this condition.

After all you have been through...all of the surgeries, all of the daily suffering, Im sorry you are now experiencing this. It's terrifying when something is "out of the norm"...as it's bad enough to deal with the "norm".

This is no joke. All of the twists and turns. All of the terrible meds with horrible side effects. Many of us have been through so much...are so tired. Some of us have not had the support nor resources we desperately needed.

I love you Jill...you hang on. I will call you today. Sherri

Title: Re: Neck Pain...
Post by Mikella on Oct 20^th, 2007, 12:52pm

Hi Jill,

Here is part of my experience with neck problems:

My first "episode" was when I was in grade 6.. so, I was 11 or 12. My neck totally seized up and was extremely painful. I went to various people to try to get some movement back.. I had ultrasound done, massage, blahblah. It ran it's course and I thought maybe it wouldn't happen again. This was the beginning of my "bad spot" in my neck. (The base of my skull on the right side).

So, not long after (few months), in grade 7.. the problems began again. This is around when I became chronic (CH). I also had a host of other health problems, and I read something interesting that CH has to do with a part in the brain that is affected that controls GETTING illnesses.. like I had chicken pox, scarlet fever, strep throat 8 times, ear infections, SINUS infection after SINUS infection (many were actual infections and many were not, I now know!), "eye infections", etcetc. We attributed the neck problems to my scoliosis (I wore a full back brace 23 hours a day for two years)........ I was "eased" into the chronic head and neck pain, and it didn't seem all that unusual to me, it was just part of my life... although very debilitating.

So............................. we thought I had MAJOR sinus problems causing this face & head & neck pain. JUST as you described, I would move my neck, and it would send shooting pain into my "sinuses" ;) (now I know it's just the trigeminal nerve).. quite painful as you know. I had bulges that would pop up in different areas around my neck, but always my "bad spot".. I had therapists tell me they wouldn't touch my neck again until I had x-rays to find out what was going on, because there was something so "funky" going on around the vertebrae in my neck.. now I guess I know it has to do with the ganglion issues...

Funny how everything makes sense, right?

It got so bad one year (a couple years ago) to the point where I was in bed, incapacitated for weeks. The pain was on my left (I'm usually a right-sider).. the whole right side of my face, skull, neck, shoulder, back.. Needlesstosay, I've experienced excruciating pain due to CH, but this was by far my most mindblowingly painful experience....... I hope I never feel pain like that again in my life. It was severe to the point where I was vomiting, TOTALLY out of it.. Muscle relaxants did nothing... Finally, just this past year I was given ANTI-INFLAMMATORIES ((bingo!!!)) instead of muscle relaxants.. and.. we had success........ Success, meaning, they atleast had an affect on me.

Jeez, I didn't mean to write this much. This is new to me, and I find it just helps to write so I can put more things together each time I talk about it. And who knows, hopefully it will help you too! That is half of the goal :)

SO, my point for writing this: Your experience is NOT unusual. It is totally related to the CH. I'd recommend anti-inflammatories, I'd guarantee you you'd get relief ;) Just beware, if they prescribe you indomethacin, have them prescribe the SUPPOSITORIES (even if you haven't used them before, I PROMISE it's ok! I can help you through it hehe It's just fine) because it will bypass your stomach.... if you take it orally, it is incredibly hard on your stomach, I tried that and had a hell of a time..... had to stop (common).

From how it sounds, your pain isn't TOO bad in your neck right now (correct me if I'm wrong), so I think it would be a good idea to try to decrease it now instead of letting it get worse.

Best of luck sweetie, I hope atleast some of this helped.

PF wishes
Hugs,
Kella

Title: Re: Neck Pain...
Post by vietvet2tours on Oct 20^th, 2007, 12:56pm

on 10/20/07 at 12:52:28, Mikella wrote:

What a crock of shit.

Title: Re: Neck Pain...
Post by Mikella on Oct 20^th, 2007, 1:43pm

Excuse me?

Title: Re: Neck Pain...
Post by Jill on Oct 20^th, 2007, 1:48pm

Hey Kella,

How are you? Thank you for writing a nice post in response to mine and sharing your story. I am sorry that you also have chronic CH.

I have, unfortunately, tried anti-inflammatories for the headaches and they have done nothing. For the first few days of the neck pain, four aspirin helped but now they do nothing. It is like eating candy. Have they helped your headaches or just the neck pain?

I have also been on Indomethacin and that reaked havoc on my stomach and did absolutely nothing for my headaches. From what I understand, this is a great med for trigenial neuralgia (sorry dont know how to spell that) which is similar to CH but much shorter in duration - like seconds long. I could be wrong though.

Anyways, thank you for your post. My neck is doing slightly better, comes like the headaches - good days and bad days. Like all chronics.

I am sorry what you have been through, it sounds like alot. CH is hard to deal with, stay strong.

Oh and ignore people who write things like ''crock of shit.'' It was good that you posted and I appreciate your help.

Thanks
Jill

Title: Re: Neck Pain...
Post by Mikella on Oct 20^th, 2007, 2:11pm

Hi again ;)

I've never had luck with aspirin, it's not strong enough. And I've been on indomethacin PILLS with the same result as you (major stomach issues!)..... but I really urge you to try the suppositories (that way it bypasses your stomach alltogether).. or even celebrex.

Hope this helps,
Talk soon <3

Kella

Edit - Just to clarify, the anti-inflammatories help improve my neck pain, not so much my head pain.. but it helps with the pain that travels from your neck to your face when you move.

Title: Re: Neck Pain...
Post by Wayne on Oct 20^th, 2007, 10:02pm

on 10/19/07 at 20:12:56, Linda_Howell wrote:

Never had problems with my neck, but you said this to me in one of your nasty pm's recently so I am suggesting that maybe this can help your neck problem.

just trying to help is all. ;;D

Linda, I remember a newbie being severely shat out for bringing a PM into the public forum. Not Cool!

Title: Re: Neck Pain...
Post by neiselee on Oct 28^th, 2007, 3:50pm

I get it with mine sometimes to the point that I can't turn my head. If you can find a neurologist that does "trigger point" injections. They work wonders.

Title: Re: Neck Pain...
Post by kyitb on Oct 28^th, 2007, 9:14pm

I blame my neck, shoulder and back pain on ch. Only reason i've come to this conclusion is that I have tendency to will the pain away by contracting my upper body muscles over and over again. Back when I was productive member of society I visited a massage therapist 2x a month and that helped me. I never had shouls pains though my never got that bad. I do get weird lumps sometime. Upper body constantly tight nothing mroe thus far. Thought i'd throw in my 2 cents ...