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Topic: Shadows and meds and things!!! (Read 1354 times) |
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Elaine
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I have not had but a couple of cluster attacks since the convention. I have had several shadows.
When I was getting hit all the time, I had to be careful for lots of reason when taking my imitrex I could only get so much so I took a thired a shot insteat of a whole. I couldn't aford to waste it. I have been known to take a imitrex for a shadow, I think I took it more out of fear than anything. I now just take over the counter meds at the first sign of a shadow. The last few months I was getting hit that is what I did also.
Sometimes I wonder if a shadow is brought on by fear ! I know if I think about a cluster sometimes I will get a shadow. Then I go for my over the counter drugs or I do nothing and nine times out of ten it never turns into a cluster. Maybe I was doing it wrong when I was getting hit. Maybe the fear made them worst. Anyone have any thought on this?
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Margi
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Re: Shadows and meds and things!!!
« Reply #1 on: Jan 16th, 2003, 4:09pm » |
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That's really interesting, Elaine - you have an excellent point here. I know a lot of folks don't even want to THINK about clusters when they're out of cycle, for fear of jinxing themselves.
Thanks, gal, your post really helps us supporters to understand why you folks don't want to talk about your pain sometimes.
Good post, TS. 
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Re: Shadows and meds and things!!!
« Reply #2 on: Jan 16th, 2003, 5:11pm » |
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Elaine,
I have to watch it on my imitrex also. I use the pills because I get 9 pills in the box verses the 2 shots. I break the 50mg pills in two. That way I get a total of 18, 25mg treatments. The shots with the one-third trick only get you 6.
Because my dose is so slow to kick in (pill). I will take it as soon as I feel anything. Many times, I do believe that I have wasted it or could have rode out a low kip level attack. And for the same reason as you. FEAR
Now I make myself wait until I feel sure that it is going to be worth taking my precious imitrex.
Yes, everyone. I do make my self go threw a little more pain than I would like. Nevertheless, at lest the imitrex will eventually make my headache go away completely. Where if I do not treat it al all I will have what I call left over pain that will last for hours after the actual attack is over.
DougL
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suzy617
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Re: Shadows and meds and things!!!
« Reply #3 on: Jan 16th, 2003, 5:14pm » |
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Hi Elaine,
In my first 3 weeks of my cycle it was only shadows and I only took the inderal, no imitrex and once in awhile just some advils and it was ok. Well until the full blown attack hit then I did the imitrex thing. But I know what your saying about the fear factor cause at the end of my cycle I mostly had the shadows and I did waste the imitrex on alot of them cause I was afraid they were gonna go full blown. The damn beast just loves messing with your head and making you waste way too much precious imitrex.
I hope you continue on your road to being PF.
suzy
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eyes_afire
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Re: Shadows and meds and things!!!
« Reply #4 on: Jan 16th, 2003, 6:25pm » |
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I know what you mean, Elaine. The fear thing is huge. Treating all my shadows would bankrupt me. I've been lucky enough to not have a CH attack for nearly the past 3 months but the shadows and other neurological symptoms have been happening everyday.
I'm afraid that in the past I've had a bit of a psychological dependence on aspirin... first sign of shadow, in goes the aspirin. I can't say that it has ever really helped, but I just feel compelled to try something. At one time I got to the point that my blood test showed slightly irritated liver (probably too much OTC stuff). That was a wakeup call.
I'm now taking huge amounts of water and I THINK it may be decreasing my shadowtimes.
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catlind
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Re: Shadows and meds and things!!!
« Reply #5 on: Jan 16th, 2003, 6:28pm » |
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Elaine,
I can't take imitrex or any other triptans, so when I feel shadows, I'll take two Aleve and hit the O2 for 5 min.
I find if I take an Aleve in the morning and another at night, I can fight most shadows, and they also don't produce rebound headaches. At least that's what I was told by Dr. Haas.
I worry alot about rebounds because for now I have to depend on O2 as my only abortive, and narcotics to take the edge off.
The Aleve (I buy the generic naproxen sodium - much cheaper) really seems to help if it's not a CH or just a small shadow. If it turns out to be a kip level that is too high it at least gives me a little (very little) lead time to get my O2 into me as fast as possible.
Just my 2 cents worth
Cat
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Re: Shadows and meds and things!!!
« Reply #6 on: Jan 19th, 2003, 8:08pm » |
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Elaine,
Before the introduction of preventatives to my daily regimen of meds, I had to use the imitrex exclusively. Although it did prove expensive, Most of the cost for that has been picked up by our insurance ( I considder myself to be very lucky in this case).
Anyway, the "fear factor" I believe can play a huge role. I believe it is so with all illnesses, to a point. My Oxygen was a big gamer this past cycle, I was able to determine the difference between "shadows" and regular tension headaches. If the oxygen aborted the shadow ( minimized its intensity at minimum ) then I didn't worry so much about a full attack because I could prepare for it to a degree (if it came at all). If not , then I would take steps to eliminate a "regular" HA. this method worked for me ALMOST 100% accurately. There are always exceptions to the rule, of course, and I was no different.
FEAR has played a larger role in my "sleep-dep" problem. since I knew they mostly came at night I constantly worried about it. The day time attacks have always been sudden for me. And of course there are those days when nothing helps and you just gotta tough it out somehow.
Cerebus
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Re: Shadows and meds and things!!!
« Reply #7 on: Jan 19th, 2003, 9:24pm » |
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Fear is so much a player........i know i've been guilty of suffering a neurotic irrational anticipation of attacks. Guilty. Go for the abortive at the slightest provocation. Can't say whether or not the shadows result directly from that anxiety/fear factor.... not much help am I? LOL. We'll get it right one day!!!!!!!!!
But..............I gotta wonder why those damn maxalt wrappers are so DIFFICULT to get at quick............that really PISSES ME OFF! 
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The mad viking
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Re: Shadows and meds and things!!!
« Reply #8 on: Jan 20th, 2003, 2:14pm » |
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Hi Elaine my friend
I believe very strongly that the fear of getting hit can very well be a trigger itself.as my doc says here.Svenn just use all the trex that you need.even my last cardiologist tell me that in writing,and thats STRANGE or?
Most of those shadows that you are talking about , i manage with oxygene.
I`m still using 1X 120mg verapamil retard daily for the heartcondition.
Only shadows since my heartattack,so my life is playing rock`roll here ;D ;D ;D ;D
Wish you the very best
Svenn
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Mark C
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Re: Shadows and meds and things!!!
« Reply #9 on: Jan 20th, 2003, 2:36pm » |
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Thanks for the topic Elaine,
I have been having some shadows for the last of couple of days. I have not had a head blaster since around November, after one of the longest and worst cycles ever. One good thing about the last cycle, I found this place! 
I can be messing around, minding my own business and get hit with a shadow.....not a big one mind you, just enough to let me know it's knocking. Like today. Fear is an understatement, terror is more like it. Historically my cycles are much father apart so I am not sure the last cycle was ever really over. It was just wishfull (positive?) thinking on my part. If this pattern continues I should be in full swing in a week or two. I have an appointment the 28th for the neuro and I fully intend on leaving with a script for o2. I said that the last time and got Topamax instead, rat poison. I have plenty of abortive due to stockpiling during and after the last attack. My main concern, as it has been for years, is to find a preventive that works for me. Having been going to the same Neuro for 10 years there ain't much left to try. Strangely enough Verapmill has never been tried. I have some pretty bad stomach problems which compounds the problem. It seems like most of the preventives cause some GI distress.
Does fear cause shadows......not for me......the opposite is true, I think. Hell I am not sure of much of anything anymore, just I hate these fucking headaches and I love you people.
PFDAN's,
Mark
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fubar
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Re: Shadows and meds and things!!!
« Reply #10 on: Jan 20th, 2003, 2:36pm » |
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Elaine,
What a great topic. I had this conversation with my neuro two weeks ago. My question was very much the same as yours... basically, am I bringing these attacks on by thinking about them. We had a long, interesting conversation about that.
He tried to tell me that there is no possibility that you could trigger a cluster merely by thinking about it. He went on to explain that our rhythmic cycles are controlled by our hypothalamus, a mysteriously wonderful time keeper and regulation system.
Then he tried to draw an analogy... he said the hypothalamus is such a mystery, we don't know how it works at all. But, a lot of people can go to sleep knowing they have to wake up at 4am for a flight. Mysteriously, they wake up right as the alarm clock is about to go off... what could possibly give you that kind of control over your sleep.
My answer to him was that this very mystery is what makes me think there must be some connection between anticipation of an attack and the actual attack. In my analogy, you set your internal alarm clock. You don't know how or why, but you wake up on time. How did this happen? You obviously managed to affect the timing mechanism (the hypothalamus) somehow.
I think there must be a connection. The more fear I have, the more attacks I have. The more attacks I have, the more fear I have. Tell me those aren't related. I believe we have much more control over our bodies than we know about. I just wish I knew how to control these attacks... that would be progress.
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Elaine
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Re: Shadows and meds and things!!!
« Reply #11 on: Jan 20th, 2003, 3:00pm » |
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I am think fear has something to do with us getting hit harder at times. Kind of a trigger.
I know I been PF for almost 4 months with only a couple of break throghs and I have loved it. I am starting to have shadows again with pain along my right nose and pressure on that eye. I do have that fear that hits me Along with the shadow.
I will tell you what I use to do and what I do now it works. I use nose strips at night when I go to bed. It helps me breath better and it keeps me from getting stopped up. I also take a drimmine tablet before I go to bed. If I get a shadow I take migraine Edcerine(sp)
If its night time I take Tylonal PM! I treat the systoms, stuff nose/runny nose the pressure. I have even gone as far as sleeping with a ice pack if I feel a shadow at bed time. I don't know for sure if I am warting them off or if its not time for me to get hit. But I am going to keep on cause so far he has kept his distance. I am ready with my imitrex and if he shows up I will take him down
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ave
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Re: Shadows and meds and things!!!
« Reply #12 on: Jan 20th, 2003, 3:02pm » |
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Excellent subject.
A few remarks. The cart could be before the horse as well... Lots of people report episodes "being brought on by irregular sleepong." Which may very well be.
But I often get irregular sleeping patterns (wishing to sleep less and needing less) before an episode. So which was first? Or is there a common cause?
I have found myself thinking fearfully of a new attack, and getting the onset of one.
But might it not have been the tiny signs that an attack is on its way, before it makes itself felt, that caused the fear?
And not the fear that caused the attack?
It could swing either way. Yes we do need much more research.
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Elaine
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Re: Shadows and meds and things!!!
« Reply #13 on: Jan 20th, 2003, 3:36pm » |
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You could also be right Ave. Its so hard to tell. I agree with you alot about the sleep pattern. In the last year I have gone to bed at the same time and gotten up at the same time that seem to of made a difference. This last two week my sleep pattern has changed some I want to sleep more but what sleep I get is interrupted with nightmares I dream a lot before a attack.
what ever the cause I am still fighting the shadows with over the counter drugs and nose strips and ice. It seems to work so I will keep on it. Anyone else got any ideas here? I am now that you brought up the sleep patteren I am going back to getting up and going to bed at the same time.
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fubar
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Re: Shadows and meds and things!!!
« Reply #14 on: Jan 20th, 2003, 3:44pm » |
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I think my doctor was right in a pure sense, that you can't cause CH by thinking about them. You either have it or you don't, and if you don't, you aren't going to get it merely by thinking about them.
On the other hand...
I think those of us who have had them for a long time, those of us who have experienced the unreasonable and unholy pain levels develop anxiety and fear of oncoming attacks. It is my theory that this anxiety and fear leads to worse attacks and possibly more frequent attacks.
My guess is we are particularly tuned in to any twinge or slight stab of pain in the head, and that triggers a whole avalanche of events in our heads. Sometimes this results in a full-on CH attack that you may not have had if you weren't so damn paranoid about it hitting. That's my theory, anyway. I'm not trying to say the attack is imaginary, just that you may unconsciously be triggering the attack by worrying about the attack.
For instance... take a few other things... like a yawn. If you see someone yawn, you suddenly need to yawn. Did your body need to yawn? No. Are you tired? No. Why did you yawn? It was practically involuntary, but it was a real yawn... or was it? Who can say?
Another (somewhat gross example). Sometimes you need to crap... sometimes you don't. Ah, but I bet even if you don't, you can sit on the toilet and probably pinch a loaf if you wanted to. Now, you are not exactly in direct control of your intestines, but they respond to subtle 'suggestions' from you. When you sit on the toilet, you start mentally preparing yourself for the job, and low and behold, it happens. How did that happen?
My point is, you are in control of WAY more than you know. In fact, it has been shown that people can control their heart rate, brain waves, and many things that don't seem to have classic control mechanisms.
Why not for CH? It seems to me that we must be in some control of this and just not be tuned into the mechanism or reality of it all. This would be such a cool subject to research.
-Fu
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Hunny
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Re: Shadows and meds and things!!!
« Reply #15 on: Jan 20th, 2003, 5:26pm » |
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This is a really interesting discussion. It's gotten me to thinking... scary huh?
I have noticed over the last couple of years that I will have ch when I am stressed. I may not even be thinking about the headache - I may be stessed about it being Christmas and I have 25 people coming for dinner or I'm working on a project that has a deadline. I've noticed it enough that when I feel myself getting stressed I'll calm down, take a break and try to ease up.
So, does ANY kind of anxiety bring on the beast? Is it just anxiety about the ch or does anyone else notice they get headaches when they are anxious about anything.
I also have trouble sleeping the week before the headaches come. I go to sleep at the regular time but about 3 am I'll wake up, feel rested and wide awake and start my day. i don't get unusually tired during the day and then go to sleep at the regular time that night. The doctor brushed this off as hormones but now I wonder...
This is the best place ever. You'll never know how much help all of you have given me. All these things I've wondered about for so long are making sense now. Thank you !!! 
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domm
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Re: Shadows and meds and things!!!
« Reply #16 on: Jan 20th, 2003, 6:46pm » |
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Like Hunny, I've been thinking on this one (hey, I smell smoke...) anyway, there comes a point in my cycle where I can tell it's going to break soon. That point is when I'm not afraid anymore. More like resigned to having to endure it for a few more weeks. (mind you, I've only had three cycles, but this "mid point" seems to be common) I was there on this cycle when I started Verapamil. I got PO'd and determined to try the preventatives. Then as I started the Verap, I felt resigned to finish it up and then I'd have my remission.
The fear plays heavily on me during the first part of the cycle, but as I take action to stop / break / prevent the pain, the fear ebbs and is replaced with resignation.
My sleep is irregular all the time. Cycle or not. I wake several times during the night for no apparent reason, and I usually hit the sack at the same time every night and wake at seven every day (whether I want to or not). My back says "get out of bed or I'm going to hurt you".
PFDANs to you all and keep pressing for answers. I think you're on to something with this one. We need someone to find out what the hell the hypothalmus does.
domm
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Re: Shadows and meds and things!!!
« Reply #17 on: Jan 20th, 2003, 9:35pm » |
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Hi all....generally I dont get the shadows that most get for more than a minute or 2 prior to the onslaught of an attack......I do know after all these years that when I do get fear in me or become anxious, then the attacks are generally more rapid and intense........The issue of going to sleep is irrelevant but it is absolutely essential that I awaken at the same time every day wether I'm in cycle or not. When the wake up times start to change I can allmost be assured that a cycle is starting. It's ok if I go back to sleep but I must get up for at least a short time....Long ago when I used meds I found myself doing them just in case and that was silly for me because they didnt work anyways even for a CH...........Like Fu says I think we are way more in control of how things affect us than we know and I think that goes both ways better or worse. Way way back I couldnt imagine not trying to take something for the pain. Now I take nothing except ephedrine and I get the same results as when I took everything, that result is still pain....Margi,.When out of cycle I go into a huge denial process about my CH as if I never had them and that makes it much easier to deal with and relieve any possibility of fear or anxiety and that too may be why I dont suffer shadows as well.... It's also way critical to keep stress levels high for me and the reason may be to avoid those fear issues.... I was hoping you guys allready had all the answers I only know what I do. Thats why you see so many I's in my posts........ Really I do learn so much here. The commonalities are incredible. The theorizing and discovery is what keeps me here......mj
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catlind
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Re: Shadows and meds and things!!!
« Reply #18 on: Jan 21st, 2003, 11:39am » |
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Fubar, I think I have to disagree with your doctor completely on the idea of either you have them or you don't, that you can't think one into existence.
When I am getting shadows, if I can stay distracted, I can take an aleve and avoid it by making sure I don't dwell on it, but I can also go the other way. I can take a small kip and turn it into an 8 without much effort by thinking the "oh god here it comes, I can't get away from it". Maybe it's the panic or fear and anxiety, I don't know. I can't control the cycles, i.e. I know I get hit in July - Oct and end Nov - Feb. I can't make those cycles change times, although I've noticed that if I concsiously remind myself on a continuous basis, that I'm at cycles end, I can make the CH's nothing more than shadows. I would imagine it has alot to do with Charlies technique. However I still can't stop the end of cycle "I'm going out with a hell of a bang" CH's. They seem to always hit hard.
Some classic examples of control and non control. I can say to my hubby, it's noon isn't it? without looking at a clock because I'm starting a CH. Other times I don't get hit, look at the clock and see it's 12:30 and start a shadow. Chicken or egg?
Since this is such a misunderstood condition, and we know very little about it, I would say it's hard to classify anything about it with certainty other than the pure pain.
The brain (hypothalamus included) still holds many many mysteries. I for one have cerebral spinal fluid in the sella turcica (the bony structure that protects the pituitary gland and hypothalamus) and the fluid squashes the gland. They don't know if that's the cause or if the "empty sella syndrome" has set off the hypothalamus to trigger the CH's.
I can control my dreams, and spend very little time in REM sleep...does that have an influence? There are sooooooooooo many variables and none of us has the exact same pattern or triggers other than pure pain.
Okay, I'm done rambling now. I've tried hard to find anything at all that would be the cause, or the trigger or the common denominator, but I have yet to see it in EVERY sufferer.
Cat
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Re: Shadows and meds and things!!!
« Reply #19 on: Jan 21st, 2003, 12:55pm » |
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Hi Elaine...I know Wes is out of a cycle at the moment but he does have the occasional shadow...sometimes on the opposite side to the one he normally gets hit...he says that he also tries really hard not to think about it.... 
One thing he has discovered is that whether in or out of cycle he cannot eat chinese food...in a cycle it will bring out the beast out of cycle it will bring on the shadows...
Fu..
on Jan 20th, 2003, 3:44pm, fubar wrote:Another (somewhat gross example). Sometimes you need to crap... sometimes you don't. Ah, but I bet even if you don't, you can sit on the toilet and probably pinch a loaf if you wanted to. Now, you are not exactly in direct control of your intestines, but they respond to subtle 'suggestions' from you. When you sit on the toilet, you start mentally preparing yourself for the job, and low and behold, it happens. How did that happen?
-Fu
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Tried it and hey presto....you were right...LOL 
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Re: Shadows and meds and things!!!
« Reply #20 on: Jan 22nd, 2003, 3:11pm » |
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Hi Elaine,
I seem to shadow a lot when I go to work. Sometimes before work or getting ready to go, or on the way. Must be some anxiety associated with this or worry about getting one at work. However, while I keep busy at work, I've rarely had a full blown one. Perhaps the distraction of working keeps the anxiety and worry from increasing. As a result, I may tend to overreact and use meds, because I CERTAINLY don't want to get one at work.
Kevin M
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ozzman
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Re: Shadows and meds and things!!!
« Reply #21 on: Jan 22nd, 2003, 3:51pm » |
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I agree with Fu,
Anxiety has something to do with it. If I fight the beast more often than not it will quickly progress to a kip 8,9 or 10. If I just go with it, then it doesn't progress. This of course (the fighting or going along) only with my trusty weapon of choice, Imitrex. I have noticed that with Verapamil (a blood pressure medication) I am more calmed, I don't have anxiety and the CHs don't go beyond a 7. When you are stressed, your blood pressure goes up. So it makes sense that by thinking, stressing over it, fearing it, you WILL get it.
Don't get me wrong, I don't think you can cure it by relaxation or not stressing over it. But you can certainly diminish the pain.
Ozzy
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Elaine
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Re: Shadows and meds and things!!!
« Reply #22 on: Jan 22nd, 2003, 4:11pm » |
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Ozzy,
I try to take my mind off the pain, when I hurt. When the kids were little I would get them to sing to me. I would try to keep my mind on the song they were singing. I have counted backwards from a 100 over and over out loud. I do what ever it takes to get my mind off the pain and on to something else. Now some one signing or listening to Music is different than people bugging you and asking you questions such as what can I get for you, that makes you have to think and you can't think when in pain with a cluster.
I think most people find that when they relax they get hit, but I think how we react once we get hit has a lot to do with how bad it gets.
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StanTheMan
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Re: Shadows and meds and things!!!
« Reply #23 on: Jan 22nd, 2003, 4:43pm » |
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Excellent discussion folks, and Elaine -- thank you for bringing it up!
I'm presently out of cycle, but about 2 weeks ago, I was having some "mini-shadows" (for lack of a better term). Not even what I would call pain -- just some pressure behind the eye.
But MAN -- talk about getting freaked out!! I spent untold hours worrying, had a rough night sleeping, and the little "blips" of pressure continued off and on for several days. Finally, after much prayer and thought, I came to the conclusion that I simply must ingore it and forge ahead as best I can.
Fortunately, nothing significant materialized from this, but it really got me thinking about the mental battle we face -- in cycle and out.
Anyway, just some thoughts.
PFDAN.
StanTheMan
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ozzman
New Board Old Timer
We who are not as others -- Chaos A.D. --Sepultura
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Posts: 299
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Re: Shadows and meds and things!!!
« Reply #24 on: Jan 22nd, 2003, 7:32pm » |
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Elaine,
It's so cool that your kids would sing to you while visited by "the bastard". Mine mostly cry and scream!
Well to be fair my 2 year old the very few times she has seen me ( I usually hide) she says"Daddy, head booboo hurt?" and then she strokes my hair and gives me a big kiss on my forehead. My 2 month old, somehow he manages to be crying at the wrong times.
Speaking of stress, my wife made me realize that my last few cycles have coincided (?) with the birth of our kids and one other time when I was extremely stressed out from work. In all three cases I dealt with lack of sleep preceeding the cycles. Also I remember when I was in college the cycles would hit in the winter during or after finals (lack of sleep + stress). Maybe there is something to it.
As far as shadows, every single cycle and I mean ]every cycle I have not recognized the shadows and the symptoms. I always dismiss them as just "sinus pain". I didn't realize how dumb that was until I told a friend at work who has sinus problems: "Have you tried cold water over the side that hurts, particularly over the eye?" It was after I said those words that it hit me, duh! It is a cluster cycle you dumbass!
Also sometimesI have a drink (alcohol) I get a mild CH (now I know) but it usually goes away with OTC medicines. I'm going to try to keep better records of my HA..
Ozzy 
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