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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> The Neck (gland?) Connection
        
(Message started by: deekaph on Jan 14^th, 2004, 4:12am)

Title: The Neck (gland?) Connection
Post by deekaph on Jan 14^th, 2004, 4:12am

I'm new here, so quick introduction: 24/Male suffering on the left side about five or six years, self-diagnosed after long, desperate research as to "what's causing these headaches??" because doctor refuses to diagnose me with anything, simply gives me photocopies of pages with relaxation tips and tells me that it's stress and that I should quit smoking. Episodic with varying duration of cycles which occur at seemingly random times of the year. I've been thinking for a long time that i should actually chart it, but when I'm having an attack nothing else matters and after it's over I'm just bloody glad to be done with it and move on. The only medication I've ever taken for it are T3s and ibuprofen. The Ibuprofen is my bestest friend, and I usually, during a cluster period, take between 10-20 200mg caps a day, usually about five at a time; taking two or three usually aborts an attack if I get them to melt in my stomache quick enough, but often I'll have to take another five at once.
I think I need something designer to deal with it, because the Ibuprofen isn't working as well anymore and I'm afraid of overdosing or whatnot.

ANYWAY... I've done a lot of surfing around trying to find similar simptoms, but have only had rare and brief mentions of it:: for me the pain doesn't center so much around the eye as it does the neck. There is a gland of some sort just back of the corner of the jawbone on the neck. It's right next to the big vein there. During a regression it is almost impossible to even find it; just a deflated little glad. But during an attack, it can swell to become visible to the eye, and I'm deeply compelled to apply pressure and cold. During a severe attack, another "gland" up at the very top of the neck, where it meets the middle-lefthandside of the back of the skull also inflates and seems to squirt pain. Sometimes I'm afraid I'll strangle myself because I'm pushing so hard I know I must be cutting off circulation to my brain, but it helps with the pain.

My eye (left one) droops and waters PROFUSELY, and has even squirted before; sometimes I just stop resisting the attack and allow it to wash over me. "Fear is the mind killer. I have no fear. I will allow it to wash over me; only I shall remain." I am certain that at least a fluid ounce comes out of my eye during these sessions, and the pain is so severe that it fails to even hurt, I simply become detached and numb, though very conscious of what's going on.

And for what it's worth, I nearly died from bacterial meningitis when I was 9months old, and was considered a miracle child, though the doctor had told my parents that I may or may not experience problems later in life due to the severity of my case; this my mother related to me only after I was first able to communicate that it was NOT just a headache, not a migraine, not from smoking cigarettes or pot or drinking alcahol. They can come on from totally "normal" to complete existential devastation in less than five minutes and without warning, last anywhere from 15 minutes to three or so hours, and can disappear just as quickly.

I foolishly went to go see Lord Of the Rings III this weekend, hoping that by having a couple coffees and a half dozen ibuprofen might prevent an attack. The theatre was packed (still!) so we had to sit up front. Less than ten minutes in a massive attack struck me, and lasted most of the movie.

In a word, it sucks, but its consoling to see that I'm not alone after all. Not that I'd wish this pain on anyone, not even my enemies, but since you all DO feel it, I guess its nice because everyone knows that misery loves company.

Sorry for the long post. I've found that writing can sometimes distract me from the pain... I'm just fighting this lingering attack. Cheers

Title: Re: The Neck (gland?) Connection
Post by pubgirl on Jan 14^th, 2004, 4:32am

Deekaph

Someone else will reply in more detail I'm sure but I have a sick kid at home so have to be brief.

You need proper Ch meds if you have CH. That amount of Ibuprofen is terribly bad for you. Honestly!
Also most people here find painkillers semi-useless for CH.

I suggest you have a good read around the site, and do the CH quiz to check that your diagnosis is correct. You will also find details of all the best meds for this evil condition and other stuff about the trigeminal nerve whcih I think is the one giving you pain.

Good luck
Wendy

Title: Re: The Neck (gland?) Connection
Post by pubgirl on Jan 14^th, 2004, 4:35am

Also, quick P.S.

Did you know that there is now an OUCH Canada for supporting Canadian Ch sufferers?

There is a thread about it on the General board and also further links to OUCH on the left where you will find the other things I referred to above. Not sure that the OUCH Canada link has been set up there yet though, I'm sure someone will post it here for you if not.

let us know how you get on

Wendy

Title: Re: The Neck (gland?) Connection
Post by t_h_b on Jan 14^th, 2004, 5:59am

Yeah, pubgirl's right--you need to follow the label directions on the Ibuprophen or you could fry your liver.

Title: Re: The Neck (gland?) Connection
Post by floridian on Jan 14^th, 2004, 8:29am

During a cluster headache, it is normal to see watering of the eye, drooping of the eyelid, and pain that travels down the nerves into the neck and/or jaw. This "referred pain" can tense up muscles, and could conceivably stimulate different glands. There are also a lot of inflammitory chemicals circulating when clusters hit. I haven't heard about this type of swelling in clusters, but it wouldn't surprise me.

As pubgirl said, you need to get diagnosed. If your doctor won't refer you to a headache specialist, get a new doctor. If you have symptoms like a cluster headache, you don't need general advice on relaxation. You need a thorough exam to confirm if you have clusters, and to rule out other conditions that could cause similar symptoms.

Bacterial meningitis as a kid? Maybe that could have set you up for what you have now, but it is unlikely that anyone can say for certain. Brain trauma increases the risk of risk of depression and other conditions - its not unreasonable to think that damage to the hypothalamus or blood-brain barrier years ago could be part of cluster headaches today. But we don't really know. My advice: focus on the diagnosis first, and if you have clusters, search for something more effective than T3 or ibuprofen.

Title: Re: The Neck (gland?) Connection
Post by Paigelle on Jan 14^th, 2004, 9:05am

Oh my goodness the amount of ibuprofen you are taking is going to eat your stomach up!! It also can cause visual problems!

Title: Re: The Neck (gland?) Connection
Post by LSUnut on Jan 14^th, 2004, 3:07pm

Neck pain and swelling of what appears to be a gland at the base of the neck (usually on the cluster side) has been reported here in the past. I, myself get the same pain and swelling and like you, find pressure and a hot or cold compress seem to help. I pace the floor holding a bag of frozen vegetables on my neck lol [smiley=laugh.gif]. As for the ibuprofen, in the time it takes for it to really get into your system the episode is likely coming to an end and the doses you report can be extremely toxic. The triptans (imitrex, zomig, amerge, etc) are undoubtedly the fastest acting abortives, besides oxygen. There are many resources and posts available here that will help inform you. Most people like the imitrex injections, but I find the orally dissolving zomig tablets work well for me when I have to resort to that. My neuro did a spinal tap on me to test for meningitis after he had diagnosed my clusters and found nothing. I'm afraid I can't help there, but it is well documented that survivors of meningitis are often left with long-standing or permanent effects. The best advice any of us can give you is the same mantra repeated here over and over, collect all the info you can from here and other sites, print it out, and then find an up-to-speed neuro and show him/her your findings. I'm sure someone here may even be able to suggest a doc in your area. Good luck, PFDAN. ;)

Title: Re: The Neck (gland?) Connection
Post by gutternuts on Jan 14^th, 2004, 7:32pm

Hi, just wanted to add a little footnote to the "read everything, then get a new doc...

although the read everything is truly the most important thing.. the second is the treatment.

personally, my local doc told me ... and i quote "It's all in your head". this is a general practictioner close to my home, which beleive it or not is also a behaviour modification doctor. Hence his belief that any chronic or reoccuring pain is situted in your thoughts, etc, etc...

poo hicky.

using the research here, and elsewhere, i drew together a plan of attack. I didnt have weeks / month to wait for a good neuro, or even a pain doc to open up w/in a reasonable driving distance of me. my doctor, thought well of the routine cat-scan, steroids, pain killers, etc, etc... go from there.

i took this into my own hands, brought the research to back it, showed him, and went from him prescribing a narcotic pain killer (and had a prescription for steroids at hand), to a preventative w/some good odds of it working. first attempt after researching what i've been givin in the past (some damn tapering steroid which never worked), these pain killers to numb the mind... all garbage.. I asked and was given a scrip for, in my case, verapamil and an anti-inflamatory. luck me my first guess quelled the beast long enough for me to kick his ass with an illegal substance. (hopefuly for good too)

i guess what i am trying to say is this. Even if your doc is not "up to speed" there is enough information here for you to make a damn good guess at what might work for you. down to the starting dosage, etc, etc and enough information regarding that drug to get an ok we'll try it from most any doctor.

so maybe waiting in line for a doc in canada isnt your idea of fun... go there packin some information, make it worth your while, and get the meds you need to quell your pain.

Good luck. keep us posted

'g'

(PF for 14 days)

Title: Re: The Neck (gland?) Connection
Post by clarkma7 on Jan 14^th, 2004, 11:31pm

Hi

I to suffer with neck pain left side base of skull. The pain in this area increases when I am in a cycle but never goes away. As mentioned by others the large amount of Ibuprofen is not good for you and there are a number of drugs out there which help, I have tried most of them and the best abortive result come from oxygen 10 ltrs per min and imigran , sumatriptan, Imitrex which ever you wish to call it injections. I use the oxygen for home and the injections when I am out and about. I also take verapamil this seems to help by reducing somewhat the frequency of attacks and their ferocity. We are all-different and would suggest consultation with a doctor first before trying any of these. I myself had to be quit forceful with my doctor to get the medication I wanted, as his knowledge of C.H was limited and he was only concerned with the cost. Hope you find something which suit you soon.

Title: Re: The Neck (gland?) Connection
Post by deekaph on Jan 15^th, 2004, 2:23am

Thanks for all the thoughts guys. I'd already decided upon posting the message to see my doctor again today, and told him straight up what I had concluded must be happening and why. To my "luck", if you can call it that, I had an attack while I was in there, so he got to see for himself. He agrees that its probably CH and wants to get a neurologist to second the diagnosis before we try anything hardcore. In the meantime he's prescribed Prednisone on a theraputic basis for the next week, 50mg doses. I remember my wife taking this stuff when she was pregnant for the pups that she developed. But it seems to work .. thus far. The attack ended almost as soon as I had my prescription in hand, and I haven't had another all day. I even drank two beers to see if I could prevoke an attack - you know, poke at the angry dog to see if his chain will hold - but so far so good.

I've also heard about people developing a dependancy on Prednisone after taking it for too long, so even if it works great, it can't become a permanent thing.

At any rate, thanks for all the concern guys. My stomache was starting to hurt from all the pills and I was still holding out, even after five or so years, for the off-chance that each attack might be my last. *sigh*

Its also really comforting to hear that I'm not entirely alone in the neck thingy. I've been alone with this for so long that most of the people in my life don't even know I have it, I've become so adept at just plowing through it all. Hopefully we can find some kind of permanent relief from pain.

Oh, and today I started keeping my very own headache diary. Joy. More paper in my life.

(PF for 9hrs)

Title: Re: The Neck (gland?) Connection
Post by pubgirl on Jan 15^th, 2004, 4:27am

Hi again Deekaph

Prednisolone is a short term treatment used to break cycles or buy 'pain holidays' or to break a cycle while waiting for Verapimil to kick in for longer term prevention
You must have the dosage carefully controlled and then be tapered off it. It would be worth checking the exact time on this but if my memory serves me right, it is only 2/3 weeks you should take it for.

Wendy

Title: Re: The Neck (gland?) Connection
Post by taraann on Jan 15^th, 2004, 9:00pm

Something "interesting" I wanted to add to this neck talk. My new doc (headache specialist) told me he was taught in school that CH was maybe caused by your coradid(not a clue on the spelling) artery in your neck (the one on the side where u feel your pulse) something bout it not working correctly I dunno. But he said he doesn't beleive that's what causes CH and doesnt know at all. Just wanted to see if anyone else heard anything like that?

BTW welcome to the boat deekph! Great advice you got from everyone!

Title: Re: The Neck (gland?) Connection
Post by pubgirl on Jan 15^th, 2004, 9:03pm

Problem with the carotid artery 'not working properly'?

That's a new one on me. Wouldn't that cause brain damage?

Wendy

Title: Re: The Neck (gland?) Connection
Post by Reecy on Jan 16^th, 2004, 12:44pm

You are describing exactly what happens to me. I get the neck pain and bulge just before a hit. Then after a hit, I am tender for a very long time. During a particularly long cycle, I can't even be touched in that area. Just at the base of the cranium. I feel like that place is going to burst during the hit also. Wow! I didn't think there was anyone else out there who experienced it.

Title: Re: The Neck (gland?) Connection
Post by Medlengough on Jan 18^th, 2004, 1:32am

The Oculo Sympathetic Nerve originates in the Hypothalamus, then follows the spinal cord down to circa C7/C8. It then exits and follows the Carotid artery all the way into the eye, where it can, as a Sympathetic Nerve, refer visceral neck pain to the eye. This can be anything from surgical clips in the neck from surgery, scar tissue pressure, carotid dilation, fibromuscular dysplasia of the carotid, carotid dissection, carotid anyeurism, cyst formation along the carotid, etc. etc.
The pain and tenderness in the carotid artery area itself is called Carotidynia ( similar to Ice Cream Headache).
I've seen over 200 doctors, probably 20 Neurologists.
They all understand the Biology, but because it isn't their wife, husband, son , daughter, etc. experiencing the excruciating pain every second of their life, they just don't want to get involved. I'm so psychic that I take along witnesses to my appointments now, just so they can confirm the Doctor's answers that I had predicted. After about two years they all sound the same, some even "word for word" as if they've all rehearsed it.
They all agree to the validity of the assessment, but all have reasons to pass me on to some one else. As I mentioned, I can predict their excuses. My last appointment with any doctor is in 3 days and I plan it to be my last. I just can't stand the disappointment any more. Even my "supporter" has given up on the system since he accompanied to my last three doctors appointments. We went to a doctor who performed a miracle on his mother, he had so much respect for him and so much hope. My "supporter" is a nurse, and when he realized this doctor was telling me lies (as excuses) he hung his head to the floor. The doctor couldn't even make eye contact with him. It was the same with the next two doctors we saw that he believed in. They lied to him, they make excuses, they just want to send you on to get rid of you. My "supporter lost all hope then. He's been in bed in a dark room sleeping almost ever since. He knows the truth now. You can know what's wrong with you, but if you aren't a doctor or surgeon,or maybe a millionare, you're just out of luck.
The last doc I saw, "my good doc", I mentioned to him that
we'll never get anyone to do the surgery, so If anyone's going to help me, It'll have to be me. Since he got me into med school and knows I've done surgery, all he said was "Be Careful." I guess he knows how the system works. He's not afraid to talk about medicinal illegal drugs that are legal in some states or the Oregon law. I just don't have the money or energy to pursue these routes.
If I ever live long enough to go to a specialized place, I like the National Institute of Neurological Disorders, Bethesda, Maryland. Has anyone ever had any luck there???
I only have the energy to try one more time and only enough spirit and heart left that if I hear the same old "schtick" again, I'm sure it will kill me.
Anyone been to NINDS?
Medlengough

Title: Re: The Neck (gland?) Connection
Post by jonny on Jan 18^th, 2004, 3:46am

http://tinyurl.com/wxjd

Title: Re: The Neck (gland?) Connection
Post by taraann on Jan 18^th, 2004, 9:58am

Welcome to the boat Medlengough and I'm so sorry you've had such a crappy time with doctors. What have u been on in the past? Have you tried Oxygen? I have finally seemed to have found a "real" doc (at a headache clinic bout an hour and a half away from me) that knows what he's talking about and didn't send me on to someone else......BTDT too. Even went to pain management with hugely high hopes a few months back and was told they "couldn't help" me. I know that dissapointment/crushed hopes feeling you are talking about IT SUCKS! Don't give up, you are your own best advocate and might find the right doc at the nxt appt or even 3 docs from now but hang in there keep looking and DONT GIVE UP!

BTW read read and read somemore, lots of ideas, hints, tips, and advice here!

Title: Re: The Neck (gland?) Connection
Post by deekaph on Jan 23^rd, 2004, 2:24am

Thanks for all the encouragement you guys. Last night was a rough one indeed... my doc cut my prednisone dose to 25mg because I was missing sleep, and at the stroke of midnight, onset. Took the other 25mg, but didn't work; maybe made it worse. Paced around and stomped feet for a bit before I called up my mom and had her drive me to the hospital at 2am. Oxygen didn't really help except make me less agitated; they kept telling me to sit down and wait, I was begging for drugs. "Do you think I learned how to make just half my face cry in acting classes or something? If this is my sad half does the other look too happy to be here at two in the morning!?" 10mg of maxeran and some deep soothing breaths didn't kill the beast, but made it tolerable enough that I didn't want to commit acts of violence upon myself.

Talked to my doc again today; he gave me a handful of imitrex to act as an abortive the next time that monster awakes. Neurologist can't see me until 9 March.

PF since I fell asleep at 5am. Here's hoping. I have another thought but I'll start a new thread for that. Thanks again guys, great having you.

Title: Re: The Neck (gland?) Connection
Post by t_h_b on Jan 23^rd, 2004, 7:13am

Deekaph, mabye you could try Imitrex injections as an abortive? That and O2 are the first-line abortives.

Maybe you could get an Rx for verapamil, too. That's one of the first line preventatives.

Also you could try melatonin and you should consider the fungal solution.

It is possible to find proper medication but you have to stop being in denial. (I went through something similar.)

Also, it seems that no matter how knowledgeable of an MD you can find, you still need to be able to guide your own treatment, so you must educate yourself.

Good luck.

Title: Re: The Neck (gland?) Connection
Post by violet on Jan 23^rd, 2004, 12:22pm

My new doc (headache specialist) told me he was taught in school that CH was maybe caused by your coradid(not a clue on the spelling) artery in your neck (the one on the side where u feel your pulse) something bout it not working correctly I dunno.

I have spasms in my carotid, it has been documented on MRI's . I was having one when I was having an MRI. How's that for luck?
Vi

Title: Re: The Neck (gland?) Connection
Post by deekaph on Jan 23^rd, 2004, 8:31pm

Yeah I was thinking that if I ever am able to get in for an MRI I could induce an attack - "just give me a beer and ten minutes guys and I'll show you what a cluster attack looks like on MRI" :)

Title: Re: The Neck (gland?) Connection
Post by Prense on Jan 23^rd, 2004, 9:55pm

on 01/23/04 at 12:22:52, violet wrote:

I was having one when I was having an MRI.

How the hell do you lie still through an attack???

Title: Re: The Neck (gland?) Connection
Post by henzey on Jan 24^th, 2004, 6:10pm

Hey Deekaph: Welcome to a great place to get help. I sure hate that you can't get to a good doctor until March 9th....your episode will probably (if you are lucky) be gone by then. That used to happen to me until I finally found a good headache doc who sees me pretty fast. Even though Topamax did not work well for me, you might want to suggest that as an option....it does have its own side effects though and you really do need to be careful and not start out taking like 15 mg a day and then work up from there. Verapamil also can be a good option unless you have low blood pressure. Both of these are preventatives...whereas the Imitrex and a good snort of oxygen are the best aborters once you have an attack. One big issue for someone your age is alcohol consumption.....I just love a good drink, but I cannot have one when I am having clusters. Will bring on a monster attack for sure. So, you may need to lay off the alchol until you haven't had an attack for at least a week or so....which can be a real bummer.

Title: Re: The Neck (gland?) Connection
Post by shaumar on Jan 24^th, 2004, 8:49pm

Hi there, we are pretty much clluster virigins, my husband has had clusters for about 2 years, they are so typical, ya know 9:00 or 12:00 at night, actually we had no idea what was going on, we self diagnosed, which is what you have to do these days. We find that the doctor's just say "Yes, I guess you do have clusters" thank you very much... I do have an anger thing attached to all of this, pretty much the lack of care. My husband acutally woke up one day with a permanent Horners (we did not know what it was), his eye doctor said it was Horners, great, most diagonist syndormes with Horners the diagonsis is lung or thoat cancer, at the time I was reallly relived that it was not cancer (which I stiill am ) but this Horners thing is unbellievable........I soooooooo feel for anyone that acutally has to go through"it".......never mind the CH
We are right now chiecking out Pseuoephdrine, it's wierd he feels better after having a tablet, anyways, talk back, luv to hear from ya.......Shaumar.....

Title: Re: The Neck (gland?) Connection
Post by brad267 on Jan 24^th, 2004, 8:55pm

I saw a show, where a guy could self-induce migraines by over-excercise.. Then they raced him into an MRI machine to take pictures...... (They saw a wave of something go from the back of the head to the front, but irrelevant....)

The doctors mentioned that they had to extrapolate and guess what CH sufferers go through, because there was no way they'd even ask one of us to stil still in that machine during an attack....

I know I couldn't -- Not even for the good of science...

Brad

Title: Re: The Neck (gland?) Connection
Post by Stevieray on Jan 25^th, 2004, 2:22am

Here's my 2 cents worth. Imitrex...for me it is the nasal spray, works in under 10 minutes, pills take 30-45 min. I was told that injections wern't available any more but the Ns is just as fast,is pain free, is easily portable, and is sooo easy to use and you won't get rolled by junkies thinking it is something else. O2... doesn't work for me, is not very portable can be expensive , at least for medical grade O2. I used to be an ambulance attendant and we used O2 to ease patients anxiety for many different scenarios, so I understand how it can help for CH sufferers. As for the neck pain, I get that too, feels like I have a major muscle spasm in my neck/shoulder. As for layig down with a Ch, some times I do and some times I pace, oddly enough daytime CH is when I pace and Night time CH is when I need to lay down in a dark room. Every person is different so I suppose that their pain, responses and treatments would be different. I wish there was a magic bullet for every one but after reading here I guess there isn't, at least not yet. Th first time I had CHs 10 years ago, I wasn't offered Imitrex although a co-worker who suffered with migrains used it. My MD never even offered it. This time with a new MD it was the first thing offered. Abort the pain first then try for a peventative next. Verap and Lithium did it for me. 12 days PF now.

Title: Re: The Neck (gland?) Connection
Post by 357Mag on Jan 25^th, 2004, 6:54am

I can tell you from personal experience, you NEVER want to be in a MRI/CAT scan machine when a CH hits.

Oddly enough, last years cycle hit me about 5 minutes into an half-hour long scan session of the head. They had my head clamped in frame to hold it in position and loaded me in the tube. The tests are loud but never bother me.

Out of no where BAM! My left eye felt like it shot out and hit the top of the tube. Of course I couldn't move or I would screw up the test so i just laid there and let the tears roll down my face.

The tech would ask periodically how I was doing and I managed to get out a faint 'o...ok'. Drove myself home and collapsed from utter exhaustion.

Peace,
-dan

Title: Re: The Neck (gland?) Connection
Post by ave on Jan 25^th, 2004, 7:39am

StevieRay, I must take issue with some of the things you say here.

O2 to take away sufferers' anxiety!!!! Is that what you think O2 does for cluster sufferers?
If you tried it, did yiou try the 10-12 or even 15 lpm valve setting?> Did you use a non-rebreathable mask?

If so and it didn't work, you are one of the group of folks it doesn't work for, okay. But DON'T try to say that it is only for relieving anxiety. You are doing us O2-suckers a great wrong.

Also, you must be one of a very, very small minority group who are able to lie still when the beast strikes.
Most of us MUST move. It is one of the diagnostic points.

Sure you're not having migraines as well, back to back so to speak?

Title: Re: The Neck (gland?) Connection
Post by Chuffy on Feb 13^th, 2004, 6:19pm

My pain centres in my neck also. I kind of get a lump (that is part of my spine) that when massaged affects the pain, see my post in the Osteopath thread also.
Also at the top of my neck is another point that seems to be a pain centre.