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Cluster Headache Help and Support >> Getting to Know Ya >> Are These CH's? (Back of Head Pain / Not Eye Pain) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1285471527 Message started by Endy on Sep 25th, 2010 at 11:25pm |
Title: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Endy on Sep 25th, 2010 at 11:25pm
Hi All! I'm new to this forum (so glad I found it) and am in the middle of my 3rd bout with what I *think* are cluster headaches in the last 3 years. First time was July 2007... followed by March 2009... and here now September 2010. I just dealt w/ it the first time, and went to the dr the 2nd time, where he said my symptoms were much more typical of CH's than Migranes. Current symptoms are identical.
Anyway, my biggest question is if CH's can primarily hit you in the back of the head, as most of what I'm reading relates to the eye. My symptoms... (I'm female in my early 30's - I know these affect men more than women, but I'm in the right age group) - unilateral (left side) headaches - the whole left side of my head/face/heck hurts, but usually starts at the back of the skull, radiates down the back of my neck and top of my head, then down in front to my forehead and down the side of my face - the WORST point is consistently either the back of my skull, or crown (towards the back/bottom vs top, though) of my head - literally feels like a throbbing ice pick repeatedly trying to stab it's way out of my skull (from the inside out) - when I do have these cluster periods, the worst points are like clockwork around 3am (give or take an hour) and can last for several hours with the intense throbbing / stabbing pain - beyond the worst point, I wonder if what I have are "shadows" (hadn't heard that before) - but basically a dull throbbing ache throughout the left side of my head (again, worst at the back of my head and neck, but can sometimes be on my forehead/face too) - sometimes think I can consider it an almost burning sensation (not like being burned to the skin or heat, but... it's hard to explain!) - On one hand, I like a hot shower over my head if I'm having the lesser pain, but if in the stabbing pain attack, I like an ice pack. Not that either helps much, but anyway... In July 2007, I just dealt with it (excruciating as it was) and tried all the different OTC's (Advil, Tylenol, Aleve, Excedrin) - Excedrin worked the best but think I ended up w/ rebound headaches. It finally went away - I want to say it was at least several weeks if not a month or two. In March 2009, I knew I couldn't go through it again, so went to the dr (was a good week or two before I could even get an appointment if I remember correctly). He gave me Prednisone and Fioricet. Also lasted several weeks to a month or two (I really wish I kept a log!) This time in September 2010, he just called in an Rx for a Prednisone Pak and no pain pills. The last time it was a bottle of Prednisone w/ 2/day for 2 days, 1/day for 2 days, etc down to 1/2pill for 2 days. This time it's a packet w/ 6 days (5mg) the first being 2 before breakfast, 1 after lunch, 1 after dinner, 2 before bed... tapering down to just 1 pill on the last day (taking for 6 days - today's day 2 of the pills). This time around I started the headaches as the bad left side headache last Sunday, but not the stabbing pain type. Mostly constant... then Tuesday night (Wed AM) had the stabbing through my skull sensation at the clockwork 3am. Had that 3 nights in a row... It consistently wakes me up in the 2-4am time range, and I finally manage to get back to a restless sleep after a few hours. Still have the whole left sided headache (with much lesser throbbing, but throbbing nonetheless) until mid-morning, and it gets down to a mild tolerable headache during the day. Seems to start to pick up again in the evenings (still tolerable) and then I'm jolted out of a sleep - rinse, repeat. Oh, when it's a strong headache during the day which sometimes happens (almost, but not quite as bad as the middle of the night full stabbing pain, but close enough) if I turn my head suddenly (sideways or up/down) then you feel a stronger jolt of pain (comparable to the middle of the night type). Anyway, last night was the first night after starting Prednisone, and I've just had the more dull ache (no party, but not the BAAD ones), so it might be working. Will see what happens tonight... Anyway so sorry for the novel, but I'd love to hear your opinions if this sounds like Cluster Headaches? I have not had any type of tests, just the Dr in 2009 hearing my symptoms and giving me an Rx. He said if the Prednisone doesn't work this time, he will need to see me (which I hope includes a CT scan or MRI or something more than talking). Thanks in advance!!! Endy |
Title: Re: Newbie - CH back of head (not eye)? Post by black on Sep 26th, 2010 at 3:38am
is the most pain around the area of the affected eye?
sorry for asking just a bit confused. pf wishes |
Title: Re: Newbie - CH back of head (not eye)? Post by Endy on Sep 26th, 2010 at 7:23am
Sorry for any confusion! What I meant was that I DON'T have the eye pain (if I do, it's minimal in comparison to the back of my head, which is the worst spot). I think last time I did have some watering of the left eye, but not this time.
That's my biggest question of whether the Dr is right about these being CH's because for the most part, I lack the eye part of the symptoms... It's focused on the back of my head, instead. (whole left side of head/face/neck hurt at times, but it's the back of my head that gets the clockwork stabbing pains). |
Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Endy on Sep 26th, 2010 at 9:28am
Hi Ginger, Thanks for the links - I will check those out.
I've only seen my GP so far, and even then he only saw me in the office and talked (no testing, etc.) Will see if he can get me a referral to a Neuro. |
Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Endy on Sep 26th, 2010 at 8:17pm
Thanks for all the info, Bob! So, I'm guessing that the eye pain is a major factor with CH's, and since mine focus on the back of my head, the GP was not correct? I've been reading a lot, and this seems most consistent, but still have yet to find anything that covers exactly what I'm going through.
(Avoided the piercing head pain again last night, btw - headache on the left side all day, but tolerable) ETA that I've taken the cluster quiz, and got 1 yes on #'s 1-8, and 3.5 yes's on #'s 9-16 (the last one - laying down makes it worse so I sit up, walk or pace sometimes - no thrashing/banging/screaming) Also, on the KIP scale, when I'm in one of these "phases" it's on average around a 3 or 4 fairly constant (sometimes down to a 1 or 2 for a bit). Many times will escalate to a 7 or 8 (I mean the middle of the night clockwork attacks feels to me like a 9 comparing it to childbirth - but I don't do the screaming and all, so guess it's 7 or 8 on this scale). |
Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by wimsey1 on Sep 27th, 2010 at 8:15am
It also sounds as if you may need some tests to rule out other possible causes. lance
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Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Endy on Sep 27th, 2010 at 10:11am
Thanks! Yeah - you can't help but think the worst! Having quite a bit of a headache today - not the wake up stabbing type, but overall throbbing on the left. Obv the predinsone isn't working (well, only a little) - I'm weaning off it now, will be done on Wed, and it seems like the headaches are getting worse. Will be a dr appt in my near future I believe...
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Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Guiseppi on Sep 27th, 2010 at 11:15am
If you're almost done with prednisone, and they're starting to come back strong, get the doctor's appointment now. When I do a pred taper, with nothing else on board, when I come off of the prednisone, I get CREAMED. Don't mean to be an alarmist but that is a common experience with people on the board. Use Bob's post and find a good headache specialist neuro. With all you got going on it's your best bet for a rapid diagnosis and effective treatment regimen.
Joe |
Title: Re: Are These CH's? (Back of Head Pain / Not Eye Pain) Post by Endy on Sep 27th, 2010 at 11:32am
Thank you Guiseppi - that is good to know! I was going to wait out the rest of the treatment before calling, so I can at least tell him I tried. But I hate for the middle of the night attacks to come back. And right now is no picnic (worst daytime headache of this particular cycle yet).
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