Posted By: LAK do you get recurring headaches??? - 02/17/10 03:06 AM
i can't shake my headaches. i think it's due to AS neck pain.

please chime in and let me know if you also suffer from this.

massage helps but the headache comes back.

it's debilitating just like the pain in my spine and shoulder. some days it won't go away. i take 2400 mg of ibuprofen daily (spaced apart in 3 prescription doses) and the pain is still there. it gets better, then gets worse.

Posted By: JamesB Re: do you get recurring headaches??? - 02/17/10 03:58 AM
Hi Lak,
Yes I get them because of my neck. The first thing I do is try to lift up on my head with my hands, just enough to relieve some pressure. (I hope that makes sense). If you respond better to heat than you respond better to cold, then wear high collars whenever possible to keep drafts and cold air off your neck. I prefer to wear a towel or a scarf around my neck instead. I also use over the counter (menthol type) pain patches for my neck and they help with both the neck pains and the headaches. The hotter the better in my case.
I hope I said something here that might help.
Take care,
Posted By: Sue22 Re: do you get recurring headaches??? - 02/17/10 04:13 AM
i've gotten migraines my whole life so i know what triggers those and what they feel like.

but once i developed upper back / shoulder / neck / head muscle spasms, i started to get another type of headache, occipital muscle headaches, and the only way i can keep these headaches under control for me is to keep these muscle spasms under control.

for me that includes ice to the upper back and shoulder, heat to the neck and head. ultrasound to the upper back and neck, muscle relaxants (zanaflex), basically anything that reduces inflammation and muscle spasms.

and when the occipital muscle becomes involved, it also becomes inflamed (as determined by the way it "crunches" over the bone. so i have to get that under control as well. i can't take NSAIDs so i have to just get the muscle spasms to stop, and then the inflammation eventually goes away.

also exercises that rebuild the muscles if i've had significant spasms that weaken the muscles, and help keep them strong so they are less likely to go into spasm.

i also had pretty significant trigger points in my upper back, base of neck, head, and these had to be eliminated to stop the chronic spasming. this was accomplished by a combination of ultrasound at the PT and trigger point injections by a physiatrist (doctor of physical medicine / rehabilitative medicine). i now have a home ultrasound unit that i just love, it works just as well as the ultrasound in the PT's office, i can include a link to the one i bought if you are interested. for me, getting rid of trigger points and keeping them at bay was an important piece of the puzzle. some people can have them pressed / massaged out (trigger point release therapy) but mine just rebound(ed) worse when pressed in this way. but the ultrasound works well short term and the triggerpoint injections (no cortisone!, just a little bit of lidocaine but its really the action of the needle breaking up the trigger point that does the trick) are nothing short of miraculous for me.

also, i don't consume caffeine on a daily basis, thus when i have a headache, a cup of tea (for the caffeine) really does have a positive affect on my headaches. but getting rid of the underlying cause is more important than anything else.

good luck hugss
Posted By: Jaybird Re: do you get recurring headaches??? - 02/17/10 04:51 PM
All day, every day.
Posted By: optimist Re: do you get recurring headaches??? - 02/17/10 05:03 PM
Count me in. LAK, James and Sue, I am so sorry you deal with headaches, they are truly horrible to endure.
I have had migraines for a few years now (it is a whole body disease, not just a headache), but have not found a migraine med which helps. Took a flexeril last night and it did not even help. Not taking NSAIDs because they had a horrific rebound effect when I stopped them, trying to detox.

Shortly after being diagnosed w/AS & fibro, I got a different kind of migraine than before - one with a crunchy neck and muscle spasms (dr (GP) said a huge muscle was in spasm - could that be the occipital muscle you refered to, Sue?) Now I get these 'new' migraines w/the cracking, crunching neck & neck spasms all the time. This current one I have had over a week and I am sick of feeling hungover when I wake up and all day long. The only feedback from my rheumatologist was 'the AS is affecting your neck now'.

Interested in the ultrasound machine, would love that info.
And lidocaine sounds interesting too.
Best wishes for relief asap for all of us!

Posted By: optimist Re: do you get recurring headaches??? - 02/17/10 05:04 PM
Jay best wishes for relief from the headaches to you too. Posted my msg before I saw yours appear.
Posted By: astrid21zna9 Re: do you get recurring headaches??? - 02/17/10 05:58 PM
I get them but I don't know if it is from the meds or the pain? It is very hard to get rid of the headache when I do get one. Hope you feel better.
Much love
Posted By: mcm Re: do you get recurring headaches??? - 02/17/10 10:05 PM
I get them - sometimes it seems to stem from my neck, usually right sided, and others are in my eye (once again right sided), the eye one got me diagnosed with migraine, but i think its arthritis related - inflammation, inflammation, inflammation...
Midrid for migraines helped a little-it was prescription but i think its going otc, I no longer take it tho. I like the icy hot neck patches (they're more cool than hot - the menthol thing also mentioned) and the Heat things for the neck, do alot of ice packs too. When it hurts so bad i'm sick i usually take alot of children's benadryl and go to bed.
Posted By: Sue22 Re: do you get recurring headaches??? - 02/17/10 11:40 PM
hi lisa,

don't worry about me too much, yes, migraines, any headache i suppose, can be truly horrible, but i've been lucky to be able to recognize my triggers and find ways of relieving them. i've also been lucky that caffeine works so well for my migraines, as well as, if not better than any other "drug" i've tried, though must say, never found the need for the heavy duty migraine drugs. the only migraines that i just have to "wait out" are hormonal, thank goodness hormones fluctuate and within a few days, even these migraines pass.

the occipital muscle is a muscle in the back of the head and when its in spasm, i get the headaches. however, muscles all seem to spasm together, so if my upper back is spasming, then the neck will, and if the neck does, then the occipital muscle does. its one great big party! so i try to find the original culprit best i can. not surprised at the rheumatologist's comments, but physiatrists specialize in helping people overcome these sorts of issues. and PT can be quite useful as well. maybe seek out a physiatrist (notice not psychiatrist, but physiatrist....most people have never heard of them, i wouldn't have except for the fact that my first PT sent me to one and i fell in love with her, bestest doctor i ever had!....but like any field of medicine, the knowledge of the doctor can vary, right now i'm going to one who's advice is "if you have to lose your career due to your health, so be it.", needless to say, i'm going back to my old one who felt this new one could help me more and the only reason i tried her, but the old one did help more than i think she realized and at least she cared and was motivated to get me out of pain and functioning whenever i'd flare.)

anyway, its the physiatrist's who do the trigger point injections with the lidocaine, but that's only if you have active trigger points to inject. pain docs are also often trained in this technique.

as for the ultrasound machine. here is mine and i heart it:

i did a lot of research on it to make sure i was getting something as close to what they use in PT as possible. the energy output is the same. the only difference is pulsed vs continuous, but that seems to be ok. you can search on here for me talking about home ultrasound machines for more info. louise on here who is a PT helped me decide on the right one.

hope you get some relief soon as well,
Posted By: MollyC1i Re: do you get recurring headaches??? - 02/18/10 12:01 AM
Another 'nod' from over this way. Occipital pain, crunching, crepitas. Pain on the right side of head, been with me several days. Even took an antiinflammatory today - to calm feet as well as head. Worked. Nexen, but don't think you can get Nexen in USA or UK. But can get here in France. Love my Celebrex, but C'brex gives me LPRG/GERD - mind you, think that is exactly what Nexen has started to do to me as well as... Wretched this evening. Blasted AS stinks. Can't even take an antiinflammatory now...sheesh.
Posted By: stevec Re: do you get recurring headaches??? - 02/18/10 03:32 AM
Wonderful explanation Sue since I'd think my headaches are very similar.

Massage and triggerpoint acupncture have helped me immensely. I have a TENS machine at home but never thought to get home ultrasound or try trigger point injections.

Posted By: Irish Re: do you get recurring headaches??? - 02/18/10 01:03 PM
Yup, I'm plagued with headaches too. And I have the 'crunching ' neck (sounds like a box of broken biscuits laugh2 )I really thought I was alone in that one, so good to know I'm not...well, not good exactly wink
Posted By: LAK Re: do you get recurring headaches??? - 02/20/10 01:10 AM
yes. it's good to know that that we're not alone. headaches actually rule my life, every day.

some days i can't even think, it hurts so bad.

i'll try those suggestions about pain patches and heat.

Posted By: tiredofpain Re: do you get recurring headaches??? - 02/20/10 01:22 AM
Sure do LAK, wicked stabbing pains behind the eyes are just about the worst I find. Other, more standard migraine type stuff with aversions to light, sound or movement, a band of pain around the hat-brim area and waves of intense pain and light that can knock you off your feet (or the feeling that someone has managed to place their fist into the back of your skull).

On Valentine's Day (another St. booted to the curb along with my personal favourite, St. Christopher) I went out during one of these episodes (usually, I'd go straight to bed) to get my wife and daughter some stuff for Valentine's Day. They were up-island for a good part of the day and if I hadn't gotten flowers and chocolates, etc. before they came home, I would have to endure the repercussions for years to come. The taxi driver kept asking me if I was alright because of the way I held my head (trying to apply pressure to both temples with one hand) and moaning in pain constantly.

When the girls got home, I didn't hear any negative comments...that's how I know I've done real good. So I suppose it was worth it in the end?

Short answer is YES.

Posted By: barngoddess84 Re: do you get recurring headaches??? - 02/20/10 03:55 AM
yes, usually late in the day. They were really really bad my senior year of high school, after I cracked c2 and c3 . . . the headaches were the reason I didn't finish high school. Took over a year to figure it out (everyone was treating me for migraines and hormone problems). Now they're not nearly that bad, but if I get my neck out of whack I can have the recurring knock-out headaches for weeks at a time.
They suck.
In me at least, they are definitely neck-related. I'm told Fibro causes headaches as well. ?
Posted By: Tinkerbell Re: do you get recurring headaches??? - 02/20/10 12:53 PM
Hello LAK

I am chiming in to say that yes I had awful headaches and neck pain for about 6 months prior to my AS flaring up again a few weeks ago. I didn't make the connection between the headaches and neckpain being a symptom of AS (DOH!) as I am forever carrying my kids about and blamed that!

I too found massage gave temporary relief but it wasn't until I got my familiar AS symptoms back that I realised what was going on. Since going on NSD again the headaches have disappeared - so I'm sure it's was the AS and not anything else.

Before this I tried anti-inflammatory tablets from the pharmacy and like you they gave temporary relief but were not a solution.

Hope you find a way to sort your headaches out - it's not fun is it?
Posted By: Tinkerbell Re: do you get recurring headaches??? - 02/20/10 01:00 PM
Hello Bridget
I agree with you - if I do anything silly to my neck - the headaches are never far behind. Sometimes it's not until the pain of the headaches has lifted a bit that I even realise that it's my neck that's the problem!
Posted By: LAK Re: do you get recurring headaches??? - 02/23/10 10:59 PM
THANKS ALL for great replies..

headaches are more than just annoying as you all know. you wake up with it, you go to bed with it, you even wake up in the middle of the night and it's still there.

as if we don't have enough pain to deal with everywhere else in our body.. just not fair.

you are all so supportive and kind. having someone understand is the best medicine of all.

Posted By: Inanna Re: do you get recurring headaches??? - 02/24/10 02:18 PM
Hi Leslie, just wanted to give you a hug. hugss

Warm hugs,
Posted By: LAK Re: do you get recurring headaches??? - 02/25/10 01:09 AM
hi kat:

thanks sweetie. i needed that. somedays i throw my hands in the air and say, "what did i do in my prior life to deserve this?"

then going on kickas makes it so much better because i'm not alone.

Posted By: Deborah Re: do you get recurring headaches??? - 02/25/10 05:01 AM
Hi Lak,
If I drink coffee every day for about a week and then stop it I will get a headache. It happens every time and I keep drinking coffee and then stopping and everytime bang I get a headache. You would think I would learn and just stop but no I keep on doing it. Not sure if this could be your problem but it is just a thought?

Posted By: tiredofpain Re: do you get recurring headaches??? - 02/25/10 06:00 AM
Hey Debbie, yours sounds like a case of your body punishing you for denying it the luscious black ambrosia. Perhaps quitting quitting would help?

Just another fan of the bean juice,