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Amphs

The people here are awesome.

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Guess I'll get cozy. Went to a doc, he listened to my issues and said "yep sounds like clusters,  take imitrex for the headache and tramadol for the pain."

No CT scan, no MRI. But I guess his series of questions rules out brain bleeding? I dunno.

Anyhoo I'm supposed to go back in a week if I still have them. I haven't had one since Sunday night, but Sunday night was bad, really really bad. I know I don't have to explain these to people here, but these headaches are new to me and these are new levels and types of pain I am not used too.

It seemed to keep getting worse until Sunday night, but since then I haven't had one. So 2 full days with no headache, which was an amazing relief.

I am still concerned I'm not out of the water. While I didn't have them the past 2 days,  I did have a tightening in my left jaw. This tightening is kind of like a trigger or a warning sign that a headache in imminent for me, but the past 2 days they didn't turn into headaches, or mild ones if any. The tightening of the jaw doesn't hurt too bad so that's tolerable as long as it doesn't explode.

I am also worried because 1/2 the week I am days and 1/2 the week I am nights. Sunday through Wednesday I wake up during the day so I can spend time with my family and do stuff during living hours. Thursday through Sunday morning, I switch to nights so I can work 7pm-7am, and sleep 9am-4pm. So my week completely flip flops midweek. I've been doing this for 3 years.

My headaches only triggered on days where I was at work, awake during nights. I've read the area of the brain affected during these headaches is the area that controls sleep cycle and circadian rhythm, and if so, I can see some correlation between my weird hours and my headaches.

I suppose I'll find out tonight. I take a long afternoon nap on Wednesdays to switch to night hours. If I recall, it was after this nap last week I first started noticing these headaches. I guess we'll see.

Oh and one more note, the community here is absolutely awesome. Really I appreciate this forum a lot.

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take imitrex for the headache and tramadol for the pain
  Imitrex injections, I hope -- not pills.  And tramadol probably won't touch the pain. Plus, what does that mean? -- the trex, if its injectable, will probably end the pain.  And the tramadol won't act fast enough to get to the pain in any event.   

Amphs, I'm sorry; I'd have to go back and re-read your thread to get all the nuance here, but doggone it, YOU NEED OXYGEN, and it's the first thing any doctor should prescribe.  Trex and whatever else they give you are not healthy for you in the long run. O2 is a safer abortive, and highly effective.

Gotta ask -- have you tried an energy shot/drink yet?

It's very, very good that you've been PF (pain free) these last few days.  Maybe you are out of the woods.  But you are not getting great medical advice, as far as I can see.

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Amphs,

It seems to be a sadistic pain thing that sorta binds us CH'ers together. ;)

CH patterns can change day to day, week to week or even cycle to cycle.  Sorry to tell ya that.  We all can value a few days of being pain free though.  :)

On the sleep cycle thing.  You might not be affected by sleep cycle changes, but the majority of us are.  Particularly switching between day / night sleep.  For those of us on a normal sleep pattern, something as simple as a short nap in the day is a serious no-no.  You might want to play it by ear for a bit, but changing to a regular shift might be in your best interest at some point.

PFW,

J

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CHFather I got imitrex in pill form. As far as trying an energy shot, next time I have one I will, but I've been in the clear the past 3 days so I haven't had a chance to try it out.

Hurtsmyhead: I only just started getting them last week so I'm still trying to figure out the triggers. I usually take a 4-5hr nap on Wednesdays to switch to nights, so I will see how I am doing after that nap.

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Hey Amphs

I went back and read this thread from the start.

I'll say again that I am not a doctor and that this is not a diagnosis.

I do have some questions and comments for you.

I am confused as to whether the headaches spread to your jaw OR is jaw pain a warning sign that you are about to have a headache. Can you clarify?

You say that once your headache starts the pain comes in waves lasting anywhere from 1,1/2hrs - 4hrs. You also mentioned having pain spikes that last from 1 - 2 minutes during these episodes. This sounds more like Hemicrania Continua. HC responds really well to treatment with Indomethacin which, by the way, is ALSO used to treat sexual headaches. How many separate headaches/episode? How many episodes/day? Is there any pattern of these episodes occurring at/around the same time every day? For example I had a CH wake me up from deep sleep 4 days in a row at exactly 3:34am every time.

You say you have no eye pain/tearing and no stuffed/runny nostril on your left side during your episodes. This tends to be much more common to CH than jaw pain. If you haven't already, check this site, clusterheadaches.com or the web for surveys/criteria for CH.

I am not saying that you don't have CH. It's just that headache conditions like CH, SUNCT, PH,HC etc. are difficult to diagnose. In less than a year I was misdiagnosed by a neurologist and told by my doctor (who had little/no knowledge of CH or how to treat it) that he couldn't write me a prescription for oxygen.

Just trying to help

Take care

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I agree 100% with Pete M about the possibility that you have been inaccurately diagnosed.  Particularly since your doctor's prescription was so off-base (imitrex pills offer very little help for CH; tramadol will do next to nothing; no O2; no verapamil . . .), I don't trust his diagnosis, either. 

Of course, you wouldn't want to take my word about what the correct prescription is, and your doctor surely won't. So just look up any reputable website and it will be there loud and clear. Here's the Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706

Misdiagnosis is very common with headaches. In my view, I would not accept either what you have been prescribed (making it through a few more attacks before you can go back and say "Please give me the right stuff" is no way to live), nor the accuracy of the diagnosis.  Maybe they'll go away and stay away, and it will have been just some freakish thing,  If not, in my opinion you really have to keep advocating for yourself.

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Pete M: My jaw seems to be more of a warning sign that things are going to happen headache wise. It is hard to tell how many separate headaches there are in a span, they all kinda mesh together and I haven't had very many headaches to get good conclusive data on that.

They seemed to have remit, but I feel on edge, like if I drank a few drinks or did something counter productive for these headaches, I would kick a cycle off again. All in all I had a span of 5 days, with 1-3 headaches per day. The headaches would start with a tightening of the jaw. The pain during them doesn't feel like my eyeball hurts, but definitely my left head, cheek, temple, mainly top jaw, jaw hinge area hurts. These waves of headaches would last 4-6 hours each day.

Edit: by "mainly top jaw" I mean "more my top jaw and less my bottom" opposed to "the pain is mainly centralized in my top jaw." The pain was the most intense in the cheek and head.

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Amphs,

Sounds like what you're experiencing are what some call 'shadows'.  There's a very wide range of descriptions.  From a very dull headache, to an awkward feeling, to pain in odd places in, on or around your head.

My shadows feel like a CH, but only in the decimal of pain level (like .5).

J

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Amphs,

There are some who get their main pain in their temple. Me being one. Head in a tightening vice with a railroad spike being pressed into my head. Then the explosion and rapid ramp-up that goes wild. Yes, they do get to to eye stabbing stage as well, but they did not start out that way.

I also get jaw or upper teeth pain as a warning shadow. It can last a few minutes to all day.

My temple feels like it is bursting or swelling first. At that first sign, I down caffeine, cold and fast. If that does not stop it, it is O2 time and quickly.

Rotating shifts are very hard on all of your body and misery for CH. But, jobs are hard to find!!!

Mine come in waves: Hit, O2, PF. If I lie down, it starts all over in 15 minutes. Untreated, they last exactly 2.25 hours and I can expect 4 every night. Treated with caffeine and O2 I can grab about an hour in the recliner before the next hit.

I sleep partially reclined in a recliner to get any rest. It helps a lot not to lie down fully.

You do need a good diagnosis. But, I do not find your symptoms that out of the ordinary. If your sleep schedule were more normal, I think you might find a better pattern to your hits. But with your rotating schedule, your internal clock is constantly challenged.

I hope your Nuero gets a scan ordered to rule out other bad stuff and you get to try Indo.

ATB

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