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peacestock
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Yet another newbie
« on: Jan 6th, 2007, 6:28pm » |
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I am new here, but not at all new to cluster headaches. I have been getting them since I was 10 (I am now 36). Been a heck of a long time getting doctors to figure out what was wrong with me.
I am in the middle of another round. At first I can handle them, but by the second month I start to lose any amount of possitive attitude I once had. I usually get them in the summer, so this is a little refreshing (I am being facetious, of course).
I find if I wake up in the morning (regular waking time, that is) with a headache, I will have it for the rest of the day. However, if I wake in the middle of the night, have 10 rounds with Seymore (that's what I call "it") and go back to sleep, I will be fine for the rest of the day. Does anyone else experience this?
Well, this is all I can type for now as the glare from the screen is making Seymore upset. All the flashing little emoticons don't help.
Peacestock
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Guiseppi
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Re: Yet another newbie
« Reply #1 on: Jan 7th, 2007, 12:32pm » |
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Help us to help you out. What meds have you tried for preventatives, abortives? What has and hasn't worked? I use lithium with a 2 week pred taper when my cycle starts up as preventatives, then use oxygen, cafergot and rarely, imitrex injections for the ones that break through. Lots of info on the left for you to read up on. Read carefully as with a lot of the meds HOW you use them is every bit as important as what you use. Welcome to the board I hope you find some relief.
Guiseppi
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swimchica623
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Re: Yet another newbie
« Reply #2 on: Jan 7th, 2007, 12:56pm » |
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Also describe these some more...you said that you will get one in the morning that lasts all day? Read up on everything on the left side of the page and try the quiz...what kind of dr are you seeing?
Nice to meet you. 
Lisa
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Salvelinus
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Re: Yet another newbie
« Reply #3 on: Jan 7th, 2007, 2:56pm » |
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Sounds like you get more than one type of headache. Some of us have the same problem. I can get migraines as well as clusters, rarely at the same time. The clusters are much more intense but shorter, and I can have half a dozen or more overnight. The migraines are milder but can last a day or two, and I can have vomiting with them. I have occasionally had photophobia (lights bother me) with the migraines, and I can sleep during the migraine. Other than these differences, they both pretty much feel like different shades of the same headache, and on the same side of the head.
Hey, I hope these start dieing down for you soon. Stay strong. . . .
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Namaste,
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peacestock
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Re: Yet another newbie
« Reply #4 on: Jan 7th, 2007, 6:58pm » |
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I do get more than one head ache, of that I am sure. I get migraines - the kind that causes headaches, and also the kind with no headache but it looks and feels like I have had a stroke.
I have never tried any meds for my clusters. As noted, they come and go so fast, I just wait them out. I have learned a great deal from this website and now realize I don't have to just suffer through them.
I also have ME (myalgic encephalomyelitis) which is also a neurological disorder that causes memory impairment, fatigue and weak muscles (it's sort of like MS) as well as "bad" kidneys. The bottom line with the kidneys is that I make lots and lots of kidney stones...and let me state for the record that clusters hurt WAY more than kidney stones. I have passed a stone while in the middle of a headache, and there was NO comparison.
Do any of you get the watery eye on one side? I don't and wonder what the statistics are on that. I get the stuffed up nostril on one side. I also get strange smells that I know aren't really there, like smelling sweet perfume or fruity smells.
I would really like to learn more about you all and hope that you will share some of your experiences with me. How do your family members cope with your headaches?
Another question (I have a million of them, but will ask them sparingly): Does anyone else have different sized pupils? My left one (the side Seymore likes best) is always a little bigger than the right. I wonder if that is from Clusters or from my ME.
Thanks for your responses and I look forward to getting more and more familiar with this site.
Peacestock
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Shedz
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Re: Yet another newbie
« Reply #5 on: Jan 7th, 2007, 7:31pm » |
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Hello Peacestock, I get a watery eye during a hit but its a common thing during an attack as is a stuffed up nostril but i've never experienced any sweet smells during a hit. I've never been able to sleep during a hit and don't know of many that can. I've never been able to "wait out" a hit either. I was being prescribed Zomig 5mg rapimelt tablets but the time they take to work was way too long. Since finding this site I've used the information to re-educate my Dr and am now using the Imigran injections which work a treat for me as well as Taurine based energy drinks. Hope this is some help to you. Shedz
Sorry, didn't mean for this post to read so harshly! 
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| « Last Edit: Jan 7th, 2007, 8:02pm by Shedz » |
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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TonyG1
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on Jan 7th, 2007, 6:58pm, peacestock wrote: I also get strange smells that I know aren't really there, like smelling sweet perfume or fruity smells.
Another question (I have a million of them, but will ask them sparingly): Does anyone else have different sized pupils? My left one (the side Seymore likes best) is always a little bigger than the right. I wonder if that is from Clusters or from my ME.
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Hi Peacestock -- Welcome to the board, sorry you have to suffer -- I too get strange smells while in cycle ... my sense of smell goes to an extreme and I can smell things I normally wouldn't notice. For me this is specific to the cycle not a particular hit. I kinda use this as one of my warning signs when a cycle is about to come on.
My cluster side always has a larger pupil when I'm in an attack. It is pretty much normal otherwise. I get the watering of the eye and I too have waited out many, many hits before I was diagnosed and knew what I was dealing with ... does wonders for one's pain threshold 
Again welcome and I wish you pain free days ahead !!
Tony
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Salvelinus
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Re: Yet another newbie
« Reply #7 on: Jan 7th, 2007, 9:52pm » |
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on Jan 7th, 2007, 6:58pm, peacestock wrote:| ...and let me state for the record that clusters hurt WAY more than kidney stones. I have passed a stone while in the middle of a headache, and there was NO comparison. |
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I hear you there . . . the nurse checking me into the ER couldn't believe I wasn't at a "10." My stones never went above an "8." CH definitely gives you a new point of reference on pain . . .
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Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
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peacestock
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Re: Yet another newbie
« Reply #8 on: Jan 7th, 2007, 10:23pm » |
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I like the Kip scale in the context of clusters, but I really resent it when the nurses ask me to "rate your pain on a scale of one to ten". I first have to explain to them that I have passed close to a hundred kidney stones, have cluster headaches and have given birth a few times. My "6" might be someone else's "9". Or my "10" could be someone else's "3".
I know that logically they understand this, but it's the ambiguity that drives me crazy. I wish there was a pain ring, like those mood rings, that would change colour to show the level of pain a person is in. Then again, that whole idea isn't perfect either.
Oh well, I guess they will just have to continue asking me to "rate" my pain. Maybe one day I should just stomp on their foot and say "It hurts like THIS!". (smirk)
Or maybe just poke them in the eye. 
Peacestock
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Salvelinus
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Re: Yet another newbie
« Reply #9 on: Jan 8th, 2007, 9:41pm » |
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Hehehehe . . .
I know what you mean about the scale. The trouble is, everyone has a different definition of "pain," "ache," "soreness," etc. And everyone has different experiences and imaginations. So how do you put it all together in a simple, useable way, and know whether what you are doing is helping to decrease someone's pain? Until we find the answer, the 0-10 scale is all we've got.
BTW, I'm a physical therapist, and I ask that question A LOT! But I do agree with you--I've wanted to give some a boot to the head after the 10th "Rate your pain when you [fill in activity]" question . . .
What really illustrates the point we are making is this: at least once a week I'll ask someone their pain level, and they look at me with a big smile and say "a 10." To myself, I say "Bull$hit," but to them I explain that a 10 means that you need to go to the ER. They almost invariably say "Oh, I don't need to go to the ER." I ask them what level their pain is, then. You can guess what their answer is.
"It's a 9."
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| « Last Edit: Jan 8th, 2007, 9:42pm by Salvelinus » |
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Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
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artonio7
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Re: Yet another newbie
« Reply #10 on: Jan 9th, 2007, 12:32am » |
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on Jan 7th, 2007, 10:23pm, peacestock wrote:I like the Kip scale in the context of clusters, but I really resent it when the nurses ask me to "rate your pain on a scale of one to ten". I first have to explain to them that I have passed close to a hundred kidney stones, have cluster headaches and have given birth a few times. My "6" might be someone else's "9". Or my "10" could be someone else's "3".
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Welcome peacestock. I'm sad that you need to be here.
Recently when asked to describe my tens. I tell them to close their eyes and visualize placing their extended thumb on a brick. Then I ask them to visualize someone hitting it as hard as they can with a hammer, repeatedly for 45 minutes.
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rogerw
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Re: Yet another newbie
« Reply #11 on: Jan 9th, 2007, 5:20pm » |
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About the eye question.....my Doctor did tell me that he can see the damage that the CH's have caused my right eye....and ironically he did also tell me that he had some 430 headache patients and out of the 430 only 9 were CH patients and all 9 including myself had hazel colored eyes. Any connection with any of you on this?
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Best wishes
Roger
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peacestock
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Re: Yet another newbie
« Reply #12 on: Jan 9th, 2007, 6:52pm » |
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That's pretty freaky as I do have hazel coloured eyes and also have "damage" to my eye. I don't have any specific info about what is wrong with my eye; something about vessels or nerves not being "right".
I haven't seen any material on the eye thing.
Peacestock
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Salvelinus
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Re: Yet another newbie
« Reply #13 on: Jan 9th, 2007, 7:07pm » |
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on Jan 9th, 2007, 12:32am, artonio7 wrote:
Recently when asked to describe my tens. I tell them to close their eyes and visualize placing their extended thumb on a brick. Then I ask them to visualize someone hitting it as hard as they can with a hammer, repeatedly for 45 minutes.
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Good visual.
When I'm at a 10, I cannot walk, crawl, or get up or down. I cannot talk other than moaning/crying--I'm past the screaming stage. I'm not even sure which way is up. My universe is pain--nothing else really exists to any extent.
I once had a 10 in the office. It came on too quickly for me to hide, less than a minute. I ended up on the floor in front of my desk, with people coming and going. I remember trying to get under the desk to hide, but I just couln't make anything work, and I wasn't sure where the desk was. That is a 10 for me.
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Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
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pubgirl
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Re: Yet another newbie
« Reply #14 on: Jan 10th, 2007, 6:38pm » |
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on Jan 7th, 2007, 6:58pm, peacestock wrote:I do get more than one head ache, of that I am sure. I get migraines - the kind that causes headaches, and also the kind with no headache but it looks and feels like I have had a stroke.
I have never tried any meds for my clusters. As noted, they come and go so fast, I just wait them out.
Peacestock |
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Could you explain what you meant by the "stroke" comment? I am not being nosy, there is a reason for the question.
Also, if you wait them out, how long do they last?
Wendy
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peacestock
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Re: Yet another newbie
« Reply #15 on: Jan 10th, 2007, 11:53pm » |
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Wendy,
This cycle they have only been lasting about 20 minutes are are about a K7. I have been very fortunate this time round...so far.
The migraines that are like a stroke - they have the aura, like other migraines, so I know it's coming on. I can feel this tingling up my left arm (migraines favour my left side as well). It starts with my fingers, then hand, up the arm, until it gets to my face, then tongue. The tingling is followed by paralysis and my face actually droops like I have had a stroke.
By the time it reaches my face, I start to lose cognitive ability. I can't think of my name, where I live, what day it is, or just names for things. I have been rushed to ER twice with this, and both times was told that it was a migraine (CT and MRI tests were done). In time the numbness and tingling stop, face stops drooping and I can remember my name.
I have had this happen about a dozen times and I hate it every time. It's not painful at all, but it's one of the scariest things I have gone through.
Do you get something like this?
Peacestock
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pubgirl
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Re: Yet another newbie
« Reply #16 on: Jan 12th, 2007, 3:17am » |
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No peacestock, I don't get it and any paralysis symptoms with any headache should be taken really very seriously indeed.
(Please see my post on your Medications thread as I am quite concerned)
I would also be concerned that if you have all day headaches and all your shorter attacks are 20 minutes long, combined with the other symptoms you describe that your CH diagnosis looks suspect.
Who diagnosed you? Were they a headache expert?
Also, do you get pain in the back of your head at all?
Wendy
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| « Last Edit: Jan 12th, 2007, 3:50am by pubgirl » |
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freddefeo
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Re: Yet another newbie - important!!!!!
« Reply #17 on: Jan 12th, 2007, 4:38am » |
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peacestock,
what you described is exactly what happened to my last year. while shopping my face dropped, top lip swelled, i couldn't think straight, talk or anything, i was swetting and did not have my witts about me.
the dr i met after a brief stay at the hospital said i had migrainal seizures. has anyone every said that to you before?
my problem was people thought i was crazy because at the hospital no symproms were present. i had the go to the store and ask the store clerk to meet my dr to make them beleive me.
this hasn't happened since. - but this time around my clusters are worst than ever and now on the right side.
by the way after the episode with my face ( happened on the right side) my clusters were all on the left side?
make sure you find a dr who takes the time to double check everything.
i was afraid i had a TIA (mini stroke)
good luck
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this is new to me - but i didn't know where else to turn to. any help i will teasure!!!!
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pubgirl
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Re: Yet another newbie
« Reply #18 on: Jan 12th, 2007, 4:58am » |
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Can I just stress here that one sided FACIAL dropping and even paralysis is a relatively common symptom with CH (called Horner's syndrome)
This should be checked out by a neuro but hemiparesis of other parts of the body is NOT usual and can be a sign of other conditions, so even more crucially should be checked out as I stated on Peacestock's Medications thread. This is important if you are taking or planning to take triptans or vaso-constricting drugs as there are a couple of specific conditions where the use of these drugs could kill.
I will paste it again here if needed?
Wendy
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freddefeo
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Re: Yet another newbie
« Reply #19 on: Jan 12th, 2007, 5:06am » |
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thanks
i read your other posting.
neuro dr's seem to only ask me to touch my fingers together then hand me another pill presrip.
if they were around when i'm on the floor or stuffing my head in the corner of the couch they might get the idea. they seem to just give you an answer - weather or not it's right i've had no clue - it just finally took this time- as severe as they gotten to finally look into it myself. i'm just afraid if my face does it again in front of a client ( i'm in sales) it will be an uncomfortable situation.
i have been reading everything i can since about 2am when i wokeup from my last blast, i don't want to go back asleep again.
thanks for the info
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this is new to me - but i didn't know where else to turn to. any help i will teasure!!!!
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JeffB
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Re: Yet another newbie
« Reply #20 on: Jan 12th, 2007, 4:39pm » |
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on Jan 9th, 2007, 12:32am, artonio7 wrote:
Welcome peacestock. I'm sad that you need to be here.
Recently when asked to describe my tens. I tell them to close their eyes and visualize placing their extended thumb on a brick. Then I ask them to visualize someone hitting it as hard as they can with a hammer, repeatedly for 45 minutes.
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LMAO!!!!!
Do you have clusterthumbaches?????
I first described it as someone force a hot railroad spike into your eye while Mark McGuire hits the side of your head at full force with a baseball bat for about 45 minutes or so.
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peacestock
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Re: Yet another newbie
« Reply #21 on: Jan 12th, 2007, 9:42pm » |
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Wendy,
I didn't start a peacestock's medication thread, so I am not sure where else to look for your messages.
Yes, I have heard to term migraine seizure, but I was told that it's no big deal and wouldn't kill me. It was brushed off.
I was diagnosed with CH about 10 years ago by a neurologist. I took the diagnosis, but never went back. Then recently I asked my GP to confirm the diagnosis, based on the clinical information I gave him and he agreed that it was CH.
2 years ago when I had CH, they would last a lot longer, like an hour and a half, and they were way worse. This time isn't as bad. I do get migraines that last a couple days, but those aren't as bad as the CH.
I 100% agree with you. I gotta get myself to a neurologist. Something isn't quite right.
Peacestock
P.S. Feel free to e-mail me as I don't always check here. I tend to forget which threads I have posted on! Laugh.
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