Occipital Nerve headache??

Discussion in 'Fibromyalgia Main Forum' started by Slangx, Mar 13, 2006.

  1. Slangx

    Slangx New Member

    I almost posted under the thread about Neurological Symptoms...

    But since this is a specific question, I decided to start a new one.

    OK, so: I have FMS. I get migraines. I get muscle spasms. And I get trigger points. I've had headaches since I was 12 years old. (36 now)

    But in the last couple years, I also get this other kind of headache, a really "special" sort of unholy pain, the kind that makes you eat handfuls of pills with utter disregard to possible OD, and pray for either relief or a quick death.

    I want to know if anyone else has THIS kind of headache? Let me describe where the pain comes from:

    It comes from a specific area at the base of my skull, sort of behind the ear. It can be 1 side or the other, there doesn't seem to be any rhyme or reason to the side it happens on.

    This particular pain starts there, then it goes up & over my head, and lands around my eye (on that same side). The area back there is painful to the touch as well - meaning, I can press with a finger on the specific spot the pain is coming from.

    My dr. says that's the Occipital Nerve, and he gives me a shot right there - a nerve block. Xylocaine I think.

    OK, so what I'd like to know is....is that still a "Migraine", or is it totally different (in the true biological sense). Meaning, if it's a completely different type of thing --- not caused by blood vessels like in a migraine, but instead it is an inflamed nerve --- well then, WHY does it happen, WHAT causes it, and HOW do you stop it? (other than going to the dr for a nerve block, because currently there is no other way to stop this pain, I can't treat it myself at home)

    Also, when the pain comes from that spot, I can guarantee there will be nausea too. Every time, and very quick onset too.

    Does anyone else get this, or know what it is?
  2. Slangx

    Slangx New Member

    Oh wow - I'm sure you can understand this...

    ...I was almost afraid I was "imagining" the different type of headache, or something. You know how it is sometimes, with all these different symptoms. You wonder what caused them, why you have them, where they came from, (if they're even real...)

    I was scared nobody else would know what I was talking about. And OMG, it hurts **SO BAD**!

    That's terrible that your dr. "did" it to you! Mine's not that way. In fact, it's the opposite: I suddenly started getting these in addition to muscle spasm headaches and vascular ones (migraine). Oh great - a THIRD kind of headache?? Why??? And my dr. knew what it was, and had the medication right there in the office ready to load up a shot. He happens to be an advocate for FMS.

    It's just so awful that I can't find any other way to break this kind of headache without going in for a shot. And I don't understand why. If it happens on a weekend, I'm sunk.

  3. Cinlou

    Cinlou New Member

    Hi, boy do I get that kind of headache, too. I have finally found a way that got rid of it. I get it only a few times now. I went to my chiroprctor, he adjusted my atlas. I'm telling you the first time he did this I swear my hearing was even better. It has taken awhile for the adjustment to hold. If you try this get a chiro who knows what he is doing, messing with the cervical neck can be dangerous.

    I just am so happy with my chiro, he is great. Maybe you can find a chiro in your area, it is worth a try. Hope you feel better soon.
  4. Hope4Sofia

    Hope4Sofia New Member

    I have a pain as you describe only it STARTS just below my eye and moves back to the base of my neck. It is the absolute worst pain I have ever experienced. It is as you say - any meds I can get without caution - yet they don't seem it help it just has to run it's course.

    I have litteraly walked into many ERs and begged them just to knock me out until it was over but they never do.

    I recently had a trigger point shot in my face where the pain radiates from and it stopped the pain. Who knows for how long.

    For 15 years the pain has been there. It just goes from mildly bad to intensly horrible and back again.

    I also have blocked air passage through the right nostril.

    Does this sound like what you experience?

  5. cosmoo

    cosmoo New Member

    Well I have experienced the same thing exactly. My understanding is along the continum of headaches migrane and occiptial are related. If you do web search using the comcast search engine you will find dozens of very good articles on this very subject. Type in Occipital nerve headache. (google could also come up with some good ones to). I find that a massage from someone else to help release that area and an ice pack applied at the base behind the ear can help.
    If you find any really great remedies do post. I have run out of time for more research for now but I will do likewise if I see something especially good.
    Take care
  6. Sylvasha

    Sylvasha New Member

    I have had these headaches for yeaaaaars. I can keep some food down today & am on this site for the first time in ages. I do go to the chiro. Had the pain for 6 days this time. I never had an injection for it; the thought of going to the Dr.or emerg when I feel this way is out of the question. Unable to get out of bed when its so blinding & debilitating. Years ago I was told it was neuraglia.
    Take care my dear friends.
  7. KateMac329

    KateMac329 New Member

    I get these from time to time and the ONLY proven method that works for me is to get an adjustment from my chiropractor.

    It relieves the pressure and pain and I feel almost human again.

    It is actually better than sex the relief you get when you feel that pressure release!!!!!

    **Sorry for saying that above but that is how awesome it feels!!!


  8. Slangx

    Slangx New Member

    Kate, yes - pressure! That's also part of it. Adjustments help release that pressure. Inside that pressure, it's a burning sensation too.

    My dr is a DO, and I go in every 2 weeks. My neck & shoulders are so very very tense that he often either 1) can't get it to move, or 2) moves it, but with a considerable amount of pain for me. And I always go in with anti-inflammatories and muscle relaxers already on board. I'd never dare attempt getting adjusted without those in my system already.

    Ice scares me. I think I've been told that for nerves, you want ice not heat. For muscles, you want heat not ice.

    But if I use ice, I can pretty much guarantee to give myself a migraine (if you think about it, the ice will constrict the blood vessles, then you remove the ice and the blood vessels will expand...there ya go, instant migraine).

    So I won't use ice for this occipital nerve thing, even though I'm told to.

    Going to the dr this afternoon, I will ask how to control the occip. headache myself at home. I pray there's a way.


  9. Hope4Sofia

    Hope4Sofia New Member

    But I've used it one my feet during the headaches. It seems to distract the pain ever so slightly. I haven't tried it on my neck but have used a cool rag.

    I have tried massage during an episode and OMG it got SO MUCH WORSE! My general rule during those episodes is don't talk to me or touch me. No light or noise or HEAT which makes is oh so bad!

    My epsisodes can go for 4-8 weeks! I get them in about 6hr spurts then they let up with just a dull pain for a few hours then hit again.

    They are worse when I lay down, in heat, and in sunlight.

    When I got the trigger point shot I wasn't in a full-blown episode but felt one was starting. It stopped it for me - first time ever.

  10. Slangx

    Slangx New Member

    Yes, for me, touching that occipital area (mastoid area, behind the ear, base of skull) sends me through the roof - as if the pain could actually get any worse, but it does if you press that spot.

    But mine begins there, then travels up & over my head to my eye. Mine doesn't begin in the eye.

    I wonder if yours begins in the eye, is it still the same thing? Well, the word "occipital" does refer to the eye, right? So maybe it can still be the same thing even if it starts at the other end.

    ? I don't know. It just hurts worse than childbirth, and my Imitrex shot does not work for this.

  11. Hope4Sofia

    Hope4Sofia New Member

    I have tried imitrex, fioricet, caffergot, and others that I can't remember. Of course there's also vicodin, motrin to the point of throwing up blood, etc. Nothing really seems to touch it does it.?

    The shot I got this time was more to block the nerve. That seems to have helped a lot. He gave one shot in the face and one at the base of my skull. He didn't use the heavy steroid stuff though.

    I think it is the same thing because the base of my skull is very tight and agitated all the time and the pain is very connected. Sometimes it goes down my neck to my shoulder and more. It can just be soo intense.

    There was a time when docs tried to say they were cluster headaches. Have you ever heard that term?

  12. shelbo

    shelbo New Member

    it is the worst pain ever...I cannot talk, focus on anything, want to be sick...jsut want the ground to swallow me up..I have not found anything that helps...how frequently do you have them? Shelbo
  13. Slangx

    Slangx New Member

    Yes, I've certainly heard of cluster headaches but I don't think that's what this is (I can't recall the criteria offhand, for cluster diagnosis, but I've read it before & decided this isn't the same thing).

    The other question of how long I've had this...

    Well, headaches - both tension & migraine, since I was a kid. They worsened as I got older. They worsened after an injury from being rear-ended. And FMS set in.

    I only started getting this occipital thing in the last year or 2. It took several times of it before I decided it was definitely different from a migraine. Except that it IS 1-sided, and my migraines are usually not 1-sided, they're usually frontal, throbbing, & very sharp. This pain is also very sharp and causes nausea, but it's still definitely different from a migraine.

    The nerve blocks (base of skull) help right away. But come on, if it's a weekend, we can't go in for a nerve block. In fact, there are lots of times you can't just drop what you're doing & run off to the drs office (sometimes you can't get there because you can't drive yourself, other times they're simply booked up).

    So I am on a quest to find a SELF treatment for that kind of headache. For migraines, I give myself Imitrex shots. They don't work for this though. Presumably because this is an affected nerve, and migraine is not nerves, it's blood vessels.

    Is that pretty much what you guys think?

  14. Hope4Sofia

    Hope4Sofia New Member

    They aren't cluster headaches. Clusters are usually in middle-aged alcholic men. That didn't seem to fit. They also are not one sided as - as you said - these are definitely one-sided!

    I can usually feel the pain worsening. But the intense pain can come on very quickly.

    I don't know of a good SELF-help trick. I've been working on that forever. I have treated myslelf with cold dark room - usually bathroom. I sometimes do the hot and cold trick with ice water in a bin and hot water in the tub for my feet (but I DON'T get in the bath as that would be VERY bad). It seems to distract the pain.

    I also got my dr to give me his personal number so that if it hits on a weekend I can call him and he agreed to meet me if he can to do the shot.

    I wish I had better tricks. Sorry.

    Just Know you are not alone in this. Until now I never knew anyone who experienced this pain.

  15. Slangx

    Slangx New Member

    Oh yes, they come on FAST!

    I had one this past weekend, and the one before that was the week before, on a Thursday. I was sitting at work talking to 2 other colleagues, when all of a sudden it hit. They could see the transformation in me, too.

    Within 10-15 minutes (max) I went from being just fine, to agonizing pain, on the floor, & didn't even know if I could drive home. There was no stopping it - I took 2 soma and a 40 mg oxycontin the minute I felt it (and you can really feel it increasing in pain, as the minutes pass). But those had zero effect.

    So I left work, stumbled into my dr's office sobbing, but he wasn't in yet & it would be 2 hours before he'd be there that day. So I went home & ate goodness-knows-how-many pills, curled up on the bed, rocking, nauseated (Tigan for that), praying for relief. Or at the very least, to just pass out.

    I finally went to the ER on Sunday to beg them to break it. They didn't get it, they didn't have a clue what I was trying to tell them. I had to drive myself that day, so I couldn't have a Demerol shot like I do sometimes (and that works). So they sent me away with 10 vicodin. I hate to say this, but I took 2, then another, with 3 or 4 soma and another oxycontin. That finally broke it (after I woke up).

    But for cryin out loud, it had been since THURSDAY a.m., and this was SUNDAY! What else can a person do, living in that kind of pain for days??

  16. Hope4Sofia

    Hope4Sofia New Member

    I so know that pain. They don't get it at the ER. I have begged them to knock me out and they laugh like I'm joking. During bad episodes I have thought I would rather just die. And, in my experience they are repetitive or cyclic.

    After you've had them a few times you can tell when it's going to get bad real fast. For me it is the most depressing moment - a panic feeling.

    I hope your docs can help you break the cycle.

  17. Slangx

    Slangx New Member

    I'm leaving for my dr app't in about 1/2 hour. I'll get online tomorrow & let you know what he says.

    Thanks - I'm so glad to know I'm not alone, but sorry there are others experiencing this.

  18. Slangx

    Slangx New Member

    OK, I asked my doc yesterday, what can be done about an Occipital Nerve Headache if I cannot get to his office to get a nerve block.

    He said, you need to get in here & get a nerve block.

    *sigh* Well no crap! I said - but what if I CAN'T get here? Like if it's Saturday?

    He said then come in on Monday for the shot.

    OK, but what can I do in the meantime??? He said there's really nothing you can do once this kind of headache already has you. You've got to block that nerve until it settles down. Adjustments - ie, get your neck cracked - will take the pressure off that nerve. He said if I'm getting this kind of headache more often, then I should come in for my adjustment more often - don't let it get that bad between times.

    He said since you can't stop it after it starts, you need to work on preventing it. Massage, for example, to keep those neck muscles from pulling everything outta whack, thus upsetting that nerve.

    And for me, since I have a TENS unit at home, he wants me to start using it every night. Place 1 electrode under the hurt spot and the other electrode above the hurt spot (like, vertically along that muscle on the side of your neck). And do NOT try to wear the thing & walk around while it's on. You're just working against it if you do that. You need to lie down so that muscle doesn't have to work to hold your head up, so the TENS unit can do it's job.

    If anyone else finds out more, please share!
  19. Slangx

    Slangx New Member

    But I'm glad you came & found this thread, at least now you have a name for the kind of headache you are experiencing. Because what I found is, this hurts as bad as a migraine, but migraine meds don't touch it (because it's not a 'migraine').

    I figured it out because my dr. knew exactly what it was. He'd been treating me for migraines for a couple years, dx my FM, has seen me in the midst of my migraine (barfing in his office even, and my normally low BP was up to something like 180/100 during that).

    He's also run dozens of tests to check for different things (blood sugar, thyroid, cholesterol, etc). btw - my thyroid is fine, but blood sugar & chol. are high; we'll re-check in 3 months. He's sent me for spine xrays, and brain MRI.

    And...when I got *this* kind of headache, he knew it was the occipital nerve & gave me the shot in the back of the head for it.

    My trigger points are also in my shoulders & neck, like yours. Do you get much relief from trigger point injections? I've found that a TPI might help the pain in that area (like in the trapezius), but if the pain radiates & causes a headache, the TPI doesn't really go that far to help the headache.

  20. Hope4Sofia

    Hope4Sofia New Member

    Bumping for newbie

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