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Redd
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just pissin and moaning...
« on: Apr 13th, 2004, 7:51pm » |
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Ok…so I’m sitting here. After hiding from my daughter who was home from school sick today so she wouldn’t witness me rocking and trying to crush my skull between my knees, I’ve made it threw another one.
Since I’m scheduled to see the specialist at the neurology dept. tomorrow, I’m trying to go over all of this in my over tired, muddy, confused demon battered brain. Trying to get a sort of “pattern of events” down, so I can accurately discuss this with her. I sit in an attempt to recall all the things that, looking back, I know now were related to this …this demon.
I recall back some 12 years ago, when I was first having what were diagnosed Hormone related migraines while I was pregnant with my daughter. Yes…these were migraines. Wanted the dark, no noise, lay still…last most of two days, and done.
Once my daughter was born they didn’t end however. Sometimes, the Imitrex injections worked sometimes not. As the months passed, I would get “hit” out of the blue sometimes with killers that had me dragging my head on the floor, begging my husband to please just kill me. He’d take the auto injector and hit my inner thigh; all the while I’m thrashing about. I recall he took me to the ER a few times where I was pumped with Demerol, and it still seemed to take forever for the pain to go away, but once it did, I slept…or should I say I was knocked cold.
There was neither rhyme nor reason to these sudden attacks for the next 9 years. They would hit from nowhere…and I thought what I had found was a solution. 3 Arudis KT’s and 4 Tylenol PM’s. I’d pop these…and wait. Pacing the floor, or rocking in the chair, or tossing in my bed.
Then a year ago I started to wake up in the night with this horrendous pain. I had suffered with allergies for many years, and this pain was right there it seemed. Right above the left eye, below it and back into the ear. I’d been using a nasal spray each night before sleep to clear my sinuses for many many years. But I wake up to the left nostril blocked off or dripping profusely, and the upper teeth on that side throbbing from what I assumed was sinus pressure. So…2 Sudafed’s, and 4 more Tylenol Pm’s and again…wait. Head in left hand…box of tissues in my right… rock at the foot on my bed, or pace. Sometimes my teeth would ache and throb so bad I’d be in the bathroom with floss trying desperately to dislodge them, but to no avail. Not enough strength to pull the teeth out. I’d go back to rocking till I felt the pain subside, “thinking” that the PM’s and the Sudafed “finally” kicked in, and crawl back beneath the covers to sleep. Two or three days of this and I’d be fine for a few weeks, and then another two or three days.
Then as any of you who have read my intro know…I started with the 2 am wake up calls nightly with these “sinus attacks”. Waking up I’d be hurting, but not as intense, head to work and eat Tylenol all day there…trying to take away the headaches I was having there, hoping if I had enough in me I’d prevent them. No such luck, but I kept trying.
Well you know where the story goes from there. So as I sit here writing this I ask myself a lot of questions. Things only another clusterhead might be able to answer. Maybe only a neurologist. And maybe only time will tell. Was all the agony I was having before a prelude to this? Has the years prior to this been the set up for a chronic condition? Is this a change in a pattern to tell me I’ll be episodic? Between the two rounds of prednisone, and the verapamil, I’m at 3 Kip 8-9 a day with shadows of a Kip 3-4 in-between most times, but on rare occasion down to a Kip 1-2. Back 2 weeks ago I had a kip 1 evening, and I decided to go sing Karaoke with a few friends, one of whom also has cluster headaches, but not really sever. I had a few beers and wasn’t out all that late, but it didn’t trigger the demon. (Hadn’t been to this site yet to learn that it can for a lot of folks) In fact I actually DIDN’T get the regular wake up call from demon. It waited for another 2 hours to wake me. And it wasn’t as sever as usual. (Now this was the second time I’d been out since these started, and the first time I had alcohol) The time of the wake up call changed with the turning of the clocks, and it’s now about 3-5 am. Starts with a Kip 6…but I’ve stopped trying to get back to sleep. I have my “dance”…I use the powder room quick, grab the blanket off the couch that I wad up into a ball and sit in the hallway. On my knees, I rock forward and back, letting my head hit the floor some dozen times I imagine, then throw my head back into the wall and turn…right to left …BAM…right to left BAM…back and forth between the two distractions…for as little as 30-45 minutes…sometimes for over an hour maybe close to two. Back to bed. The demon wakes me up once more between 6-7 am and it starts over till nearly 8:30 or 9:00 am. Kip 2-3 till 2-3 pm…and it starts all over…but only to a max of Kip 8 so far…sometimes as low as 4 but I’d say average of a 6. Three a day...from the 5 –6 a day I started with on the 8th of March. Seems like progress…but why doesn’t it feel that way? Too new to this maybe….???
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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jonny
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Re: just pissin and moaning...
« Reply #1 on: Apr 13th, 2004, 8:21pm » |
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A friend that has "Not really severe" CH?
Never knew there was such an animal.
Could that be that your friend has found a prevenitive combo that works and thats what you mean?
...........................................jonny
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Lobster
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Re: just pissin and moaning...
« Reply #2 on: Apr 13th, 2004, 8:26pm » |
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Sooooo... whatcha taking now for these? Something more that that over-the-counter stuff, right?
Wrokk
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HypnoticFreddy
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Re: just pissin and moaning...
« Reply #3 on: Apr 13th, 2004, 8:33pm » |
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Very important before the visit to the Neuro to try your best to write out a sort of diary going back as far back as you can of your headache history.
This is valuable info to share with your doctor instead of fumbling around with dates and stuff when you are there.
-Scott
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Redd
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Re: just pissin and moaning...
« Reply #4 on: Apr 13th, 2004, 8:50pm » |
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[quote author=jonny link=board=general;num=1081884795;start=0#1 date=04/13/04 at 20:21:38]A friend that has "Not really severe" CH?
Never knew there was such an animal.
Could that be that your friend has found a prevenitive combo that works and thats what you mean?
I was just talking to him on teh phone as I read this. From what his doctor told him they are clusters. Just that they never have hit him at higher than a Kip 5. He first thought they were caused by aspartame...from drinking diet soda...because he'd stop drinking it and in a few weeks the headaches would stop. But he always went back to the diet soda after a few months of being HA free. This past summer however he was still off the diet sodas but they came back again anyway, so he decided to go to the doctor. What he takes is clonazapam...but the reasoning he states for this is for sleep, because he works shift work, and has a very active lifestyle and he couldn't seem to get any more sleep at a crack than mayby an hour or two power nap. The meds allow him to sleep longer periods of time, up to 5 or 6 hours, and he says no headaches since October. I gave him the URL for here and told him to read up and see if anything might apply to him. I doubt it. But get this...he's just a friend and wants to learn more about this simply to understand what this is like for ME. Wow...Maybe I need to focus my attentions "elsewhere"?
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Redd
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Re: just pissin and moaning...
« Reply #5 on: Apr 13th, 2004, 8:54pm » |
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on Apr 13th, 2004, 8:26pm, Rock_Lobster wrote:Sooooo... whatcha taking now for these? Something more that that over-the-counter stuff, right?
Wrokk |
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Yes I am on verapamil as a prevent...Almotriptan as an abort (trial...didn't do squat)...after having tried indomethican as the abort. Imipromine at night to try to induce deeper sleep and Lexapro for the anxiety...
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Redd
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Re: just pissin and moaning...
« Reply #6 on: Apr 13th, 2004, 9:00pm » |
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on Apr 13th, 2004, 8:33pm, HypnoticFreddy wrote:Very important before the visit to the Neuro to try your best to write out a sort of diary going back as far back as you can of your headache history.
This is valuable info to share with your doctor instead of fumbling around with dates and stuff when you are there.
-Scott |
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Exactly what I thought...didn't want to forget a thing.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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pubgirl
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Re: just pissin and moaning...
« Reply #7 on: Apr 13th, 2004, 9:03pm » |
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Indomethacin isn't an abortive for CH. It's a treatment for PH or CPH and usually does nothing for CH sufferers.
Your Verapimil doesn't appear to be preventing anything much so I would suggest you see a good neurologist who specialises in headache conditions and get an abortive and preventive regime that works for you
Wendy
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jonny
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Re: just pissin and moaning...
« Reply #8 on: Apr 13th, 2004, 9:27pm » |
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on Apr 13th, 2004, 9:03pm, pubgirl wrote:| Indomethacin isn't an abortive for CH.Wendy |
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Mis-information......what you should have said was "For most people"
Indo aborted my HA every time.
.............................................jonny
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pubgirl
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Re: just pissin and moaning...
« Reply #9 on: Apr 13th, 2004, 9:33pm » |
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Sorry, you're right, too simplistic a reply Jonny.
I thought that for most people the use of Indomethacin was used as a rule out of CPH/PH not as an effective CH drug, also that it can't be used for long even when it does work for CH (which I thought was very rare) therefore other treatments were much more advisable if CH is the definite diagnosis.
Hence me saying it wasn't a CH abortive. Better would have been saying that it is not the CH abortive most doctors would advise.
W
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| « Last Edit: Apr 13th, 2004, 9:35pm by pubgirl » |
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bobkip
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Re: just pissin and moaning...
« Reply #10 on: Apr 13th, 2004, 10:35pm » |
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Redd,
Tried oxygen? If not, why not? If so, did you do it right? Best of luck at the doc.
Kip
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Redd
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Re: just pissin and moaning...
« Reply #11 on: Apr 13th, 2004, 10:54pm » |
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on Apr 13th, 2004, 10:35pm, bobkip wrote:Redd,
Tried oxygen? If not, why not? If so, did you do it right? Best of luck at the doc.
Kip |
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Right now I've been working with a fairly well informed Family Practitioner. I see a specialist in the neuro dept tomorrow. But as far as the 02 goes...I have no insurance. I was laid off just after this diagnosis, and because we haven't been able to get on top of these yet, he won't allow me to seek new work, or to commute the 40 miles back to my old employer who was willing to offer me a lesser position in the company due to the fear of my getting "hit" while driving, as well as the dizzyness and balance troubles I was having with the indomethican during that med trial. (They have since filled that other lesser position). So because I am unable at this point to look for work, I can't get Un Empl. benifits, so I'm pretty well living off my tax refund. These either need to end soon, or get under control or I'm going to end up broke. What meds I'm on now are mostly samples hes able to give me, and the cheaper ones I pay for out of pocket. 02 is way to costly for me at this point...so I guess I try all other options first.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Jimi
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Re: just pissin and moaning...
« Reply #12 on: Apr 13th, 2004, 11:08pm » |
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Compared to Imitrex injections or any triptans for that matter, 02 is much cheaper. I used to pay $65 per month for the large tank and regulator from the local medical supply house. $65 well spent I might add. I would have 5-6 per day and it would knock it in 10 minutes everytime. Good luck tomorrow. Verapimil did not work for me very well but it does for many. You may need to up the daily dose.
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Redd
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Re: just pissin and moaning...
« Reply #13 on: Apr 13th, 2004, 11:14pm » |
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on Apr 13th, 2004, 11:08pm, Jimi wrote:| Compared to Imitrex injections or any triptans for that matter, 02 is much cheaper. I used to pay $65 per month for the large tank and regulator from the local medical supply house. $65 well spent I might add. I would have 5-6 per day and it would knock it in 10 minutes everytime. Good luck tomorrow. Verapimil did not work for me very well but it does for many. You may need to up the daily dose. |
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I'm sure I will have to up ther verap, but I do have to be careful and do it under doc's watchful eye as my BP runs low to start with. We just increased it yesterday, so we'll see how my pressure fairs.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Melissa
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Re: just pissin and moaning...
« Reply #14 on: Apr 13th, 2004, 11:36pm » |
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Redd... First of all, hello! Second of all, what is the name of the neuro you're going to see tomorrow? By the way, I'm from Stevens Point (born and raised), but now live in Galloway (out past Rosholt). My neuro is Dr. Michele Klasinski, who's in the doctors park behind Cooper Motors, and she is a wonderful neuro. Anyhow, if at some point you'd like to talk, or meet, drop me a PM, ok? I'll help you out anyway I can!
Take care,
 mel
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CPM
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Re: just pissin and moaning...
« Reply #15 on: Apr 13th, 2004, 11:50pm » |
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I feel for you. It took me years to finally try out O2 and it definately turned out to be a blessing for me. Since you have frequent and even continoues attacks, maybe a visit to your local fire station may be worthwhile. They may just let you suck on O2 for 10-15 minutes. Just be sure to get it 100%. If done right, and if it helps, there is always a cost effective way to get it - just follow the threads about O2. I'm in remission now for hopefully a few years. But man, (girl), I so wish you and all other CH's could share my painless remission. Hopefully you will soon.
Regards, Pete
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