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Topic: It's Back --- Sniff (Read 1772 times) |
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Annie
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It's Back --- Sniff
« on: Nov 13th, 2007, 4:55pm » |
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It's Back!!! and I had finally forgotten all about it.
I'm new here although not new to the pain of CHs. My name is Ann and I guess you can say that I have been lucky since I haven't had a episode in well over a year.
I'm a right sider and they rarely last more than a few months (2-4). My husband knows about the headaches (seen it in it's full glory before) but I'm afraid to tell him that they are back again and drag him into the agony of my nightly ritual of pain.
It began again right before Halloween the 31st of Oct after a weekend Halloween party. Must be a trick because this sure isn't a treat. It had been so long that I didn't even notice or recognize the signs that it was back. My right eye began to bother me -- I wrote it off to the fact that I was tired and that perhaps the Halloween makeup was bothering me. I began to get a stiff neck-- and began trying to stretch it, or pop it. My eye got worst and the right side of my nose began to run. I grabbed a roll of toliet tissue and blew and blew thinking I hope I didn't catch anything.
My son's x-girlfriend was with me and we were having a few beers and talking before bed. I didn't want to ruin the party, so I tried the best I could to fake it, saying I'm just getting a headache or maybe a cold. Eventually the pain became too bad so I went to my room to hide and ride out the worst of it.
The next day she told me she had never seen anything like it. I was pulling/clenching my hair, covering/pressing my eye, pushing/smashing on my head with my hands, shaking/twisting my head, all the while I had be thinking I was coving up how bad it was getting. I can't imagine what she would have thought if she had seen the worst of it.
I told myself it must be that I drank too much (although I never get headaches or headaches from drinking) but the next night it was back (same time) around 3:00 in the morning.
I guess I should consider myself lucky that I have had a few nights without it happening, but I wish I knew which nights those were going to be. I find myself waiting up, afraid to go to sleep, the pain is just to much. Finally exhausted I go to bed thinking I can sleep through anything... but I am wrong.
Around an hour or and hour 1/2 later I'm up (disappointed) and heading for a walk, squat on the floor, head in the carpet, head in my hands, head infested with something that appears to want to push out my eyeball and escape and bore it way through my scull and this thing seems to move, it seems to be everywhere.
Unfortunally I have 2 kids in elementary that need to get up and go to school, I can't keep this up, but then again somehow I am. Last night (exhausted) I hoped it would be one of the good nights and went to bed early 11:30, tossed a while, telling myself this would be one of the good nights without an attack. You know what I got? Two episodes during the night, at least they weren't the extreme long lasting ones, but that still isn't really saying much (is it), as I was still rocking on the floor trying to hold my right eyeball in.
I just have to say what a great website this is. I've been lurking here during past episodes but never had the guts to actually join and write. I guess frustration and the inability to talk to friends and family finally got to me. You are all so brave.
THANK YOU ALL
Annie
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Kevin_M
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Re: It's Back --- Sniff
« Reply #1 on: Nov 13th, 2007, 5:14pm » |
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Hi Annie,
With you're being an episodic, alcohol is a big trigger for clusters. First consider that even a beer or two will bring an attack while you are in cycle. Perhaps a cycle was starting but I'm not surprised about happening after a couple beers, if it was in the area of reoccuring.
What treatments have you used in the past? Is there something that works you can quickly be prepared with, a preventative or abortive, both?
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Annette
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Re: It's Back --- Sniff
« Reply #2 on: Nov 13th, 2007, 5:21pm » |
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Hi Ann
Sorry to hear its back.
If you get a lot of night or early morning hits, you might like to try Melatonin at night before bed. It helped many people including my husband. He used to get a hit at 4 am every night but after a couple of weeks on melatonin that stopped.
You can start at 3 mg and building it up slowly. Some people go as high as 15-20 mg, but most is happy with 9 -12 mg.
Also have you got oxygen and a non rebreather mask?
Hope it works for you and wishing you painfree days and nights.
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naka425
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Re: It's Back --- Sniff
« Reply #3 on: Nov 13th, 2007, 5:24pm » |
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My heart goes out to you Ann. I'm also new to this site but not new to the CH.
With all the info on this site and all the encouragement and suggestions from everyone, I hope you find some relief.
Have you made an appt with your doctor?
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rolo65
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Go to the Doc and get a script for Oxygen, and make room for the tank farm.  Please read the O2 info on the left link menu. Oxygen is the best abortive out there if you use it right.  O2 can turn a K10 into a K6 when it's really bad. 
Get to a Neurologist preferably at a headache clinic.
Pain free wishes coming your way! 
Rolo.
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| « Last Edit: Nov 13th, 2007, 5:35pm by rolo65 » |
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Annie
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Re: It's Back --- Sniff
« Reply #5 on: Nov 13th, 2007, 5:56pm » |
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Hi Kevin
I've been doing it all wrong. Since this episode hit, I've been drinking more at night. Mostly because I'm trying to ease the stress and my anxiety over the fear of the next attack and hopefully just pass out and sleep through it.
You're right it isn't working for me. I'm kind of a sip- swallow, sip- swallow long distance drinker LOL. In 4 hours I can sip my way through 4 beers, 5 if I push myself.
Are you saying that drinking during the time I'm having my string of CH's will make it worst, possible last longer or be more intense? Is it possible that I drank too much on Halloween (I had alcohol which I don't drink) and that might have triggered this new set of CH's.
I haven't used any methods in the past but just suffer with them, I thought the beer was working.
Good thing I finally opened up, I have much to learn.
Annie
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Kevin_M
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Re: It's Back --- Sniff
« Reply #6 on: Nov 13th, 2007, 6:10pm » |
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Quote:| I haven't used any methods in the past but just suffer with them, I thought the beer was working. |
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Ok then, just as a start, beer drinking is a big culprit in bringing on a hit for episodics. It's not going to help and they may occur more often because of it, as in each time you drink.
This is a start of a cycle, the hits can be terribly bad, consider to read all the information that is posted to this thread. Ask questions, but in some way a need to look for answers in the helpful replies is most likely down the road, being prepared is better, clusters will interfere with responsibilities, as well as be painful to a unwanted extent.
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| « Last Edit: Nov 13th, 2007, 6:13pm by Kevin_M » |
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Guiseppi
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Re: It's Back --- Sniff
« Reply #7 on: Nov 13th, 2007, 6:11pm » |
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Damn child, you've been doing it with no help? OUCH!!! We aren't going to let you do that anymore. Get yourself to a doctor armed with a whole lot of information so you can start to manage these things. Damn, 2 little kids too............ 
1: You are episodic like me, so we need to get you on a prevent while you are on cycle. I use lithium at 1200 mg a day as my prevent. I'm male, 190 pounds, 47 years old for dosage comparisons. A prevent lessens the number of hits and their relative intensity. Other popular prevents are verapamil..(at doses higher then most GP's are comfy with) and topomax.
2: NO ALCOHOL WHILE IN CYCLE!!! For many, including me, that's how we test to see if our cycle is over. Drink a beer and see if we get hit. While in cycle even small amounts of alcohol will trigger an attack for me.
3: Get yourself an abortive. Riding these things "naked" is simply unacceptable!!!!! Your first line abortive should be oxygen. I can abort a headache in less then 10 mnutes, often times closer to six, using only oxygen. Imitrex injectable is great but it's expensive. many have found they can abort by chugging an energy drink at the onset, Monster, Rock Star, any containing the combo of caffeine and taurine.
Please get to a competent neuro. There is too much help available to have to combine being a mommy with riding these danged things.
We are here to make sure you get the help you need! Welcome to the nutty farm.
Guiseppi
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Annie
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Re: It's Back --- Sniff
« Reply #8 on: Nov 13th, 2007, 6:33pm » |
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Annette & Rolo
Thanks for the info, I'll read it. I suppose if oxygen works wonders I'm in big trouble since beside the beer no-no, I smoke like a fiend.
Rolo what does this mean? "Go to the Doc and get a script for Oxygen, and make room for the tank farm."
You can get a perscription for oxygen, you mean a oxygen tank? Is that it.
I'll try anything that will work.
I always wanted to get to the doctor so he could see me in full blown CH form. But how do you get to the doctor when I wouldn't dare attempt to drive during one and the doctors around here make you wait for an hour even if you have an appointment.
The last tiime I went to the doctor (8-9 yrs ago), he told me the first thing they usually say to a lady when you tell them you have severe headaches... it's a migrane. The meds were as useful as chewing on chock.
Perhaps you're right, I do need to go back, perhaps the doctors have learned more or at least heard about cluster headache since then. I need to be stronger (which I wasn't) and tell them the symtoms in full blown agonizing glory and not let them make me feel that I'm overreacting.
My head is giving birth to a monster, and it's going to break out of my scull somewhere, can't I at least get an epidural doc?
Thanks for all of your encouragement, I'm becoming stronger, I can feel it, I can beat this fiend down again.
Annie
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voc417
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Re: It's Back --- Sniff
« Reply #10 on: Nov 13th, 2007, 6:57pm » |
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Hi Annie, alcohol is horrible for cluster headaches. Having a beer will usually put me down in about 10 minutes. Read the water x 3 on the left. That has been helping me, although I've named my toilet Selina because of all my frequent trips to her (is it bad that my toilet is female?) Anyway I hope you can knock the beast back. Good luck.
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Kevin_M
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Re: It's Back --- Sniff
« Reply #11 on: Nov 13th, 2007, 7:02pm » |
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on Nov 13th, 2007, 6:33pm, Annie wrote:| I always wanted to get to the doctor so he could see me in full blown CH form. But how do you get to the doctor when I wouldn't dare attempt to drive during one and the doctors around here make you wait for an hour even if you have an appointment. |
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It is good to keep a log of every cluster hit until you see the doctor, to give him what you've been going through, including the time, duration, pain level from 1-10. There are other things you can add, location of pain.
Since you've yet to have any treatment for clusters, he will need to identify and diagnose clusters first. A referral to a neuro, as previously mentioned can be a next step.
Welcome Annie.
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CostaRicaKris
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Re: It's Back --- Sniff
« Reply #12 on: Nov 14th, 2007, 1:22am » |
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Hi Annie,
Given your introduction, sounds like you were in remission and the CH came back?? That's what happened to me - I was HA free for about four years then WHAM! Here we go again!
For me, I know it wasn't alcohol that triggered a new cycle, it may have been the season change combined with stress (who knows) but alcohol can definitely trigger a hit when you are in cycle.
You are not alone! I can’t tell you how many nights I’ve had like the one you described on Oct 31st. I used to get hit every nigh at 9pm like clockwork before I know I had CH and often I’d be out with friends or worse at work and I remember what it was like trying to pretend I was okay, telling them I was just a bad headache. They have no idea do they…
Welcome Annie, sorry you have to be here. See a doctor - Sounds like CH to me, not migraine, but I’m not a doctor. Stock up on energy drinks with caffeine and Taurine ( I like sugar free Rock Star)
PF Wishes
Kris
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CostaRicaKris
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Re: It's Back --- Sniff
« Reply #13 on: Nov 14th, 2007, 1:24am » |
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BTW... I felt the same way about telling my hubby the HA were back, but you need to tell him.
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Annie
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Re: It's Back --- Sniff
« Reply #14 on: Nov 14th, 2007, 3:04am » |
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To Everyone,
I'm doing it again, not the CH... but afraid... just afriad to dose off. It's almost one in the morning, last night had maybe 3 and 1/2 hours max sleep because of the headaches. I no longer feel like I'm funtioning at full speed, mentally I'm dragging, due to the loss of sleep each night.
Kevin- I've never kept a diary, how do you do it? I'm so exhausted. I do notice the time I awake in the night because I have to walk downstairs but after it fades enough that I can get back into my bed to lay down, checking the time is the last thing on my mind. Lately I've been staying up until I just can't stand it anymore around 2:30, or 3:00 then I awake with the headache. I just remember 4:00 or 4:15ish on the downstairs clock.
But I'm thinking the time doesn't have anything to do with it, as last night I went to bed earlier, and they still came and woke me soon after falling asleep, then woke me up again. I'm so afraid to sleep.
I'm still drinking (beer); but its only been today since I've learned not to and right now routine is what I seem to do, perhaps my body is used to it. I guess it's a case of trying to self medicate to relax and go to sleep. So far no signs yet and I just wish I knew earlier if tonight was going to be a good night.
OK here is the kicker, I have the ability to go back to sleep during the day (lucky me). But I am still too afraid..so I don't. The past is coming back and I know that I will disrupt the internal clock. I would rather have them at night then let my children see them. They don't remember them.
I'm recalling that they seem to have a peak then taper off and I've only just begun... it is going to get worst. I remember that they will begin to hit at different times (probaby due to my irregular sleep schedule). There will be days with more than one. They will begin to hit when I'm awake too. I don't remember it ever happening around the Fall holidays, I don't want it to spoil Christmas, I could just cry.
Wish me luck tonight.
xoxoxo to my fellow clusterheads and those who love them.
Annie
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Kevin_M
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Re: It's Back --- Sniff
« Reply #15 on: Nov 15th, 2007, 7:30am » |
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on Nov 14th, 2007, 3:04am, Annie wrote:| I've never kept a diary, how do you do it? |
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The one I had used also included what medications taken, pain level when taken, how long to relief. Since you're not yet under a doctor's care, there are many formats online, just google headache diary a whole page of options come up.
Quote:| they still came and woke me soon after falling asleep, then woke me up again. |
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That could be something you write in, an hour or so after falling asleep, that would help to describe.
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| « Last Edit: Nov 15th, 2007, 7:31am by Kevin_M » |
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Annie
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Re: It's Back --- Sniff
« Reply #16 on: Nov 15th, 2007, 12:10pm » |
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Hi everyone,
I've started my diary and am discovering what a good thing it is. I always thought I was keeping good mental notes but the days get jumbled and so do the times.
I've discovered they hit closer to 2 hours after going to bed and not at 4:00 am, as if 4:00 is some kind of magic number.
Last night Wed. I finally armed myself with a red bull (I'm hoping it will work for me) but it turned out to be a good night... I didn't wake up.
Is it after you drink the red bull that you will notice the effect or do you notice it just sipping on it. I'm wondering how fast I need to get it into my system. This sounds like such a silly question but I'm wondering if I have to up my game and become a chugger.
I have noticed that my headaches come in waves, that is they hit one night BAM-extreme long lasting over an hour, then Bam, then Medium-not as long, eventually such as Tuesday only 15-20 minutes after I woke up it was over and I only used one hanky and my eye didn't close. Then I get a break (no headache). Then BAM it starts all over again. I'm thinking that the break last 2 days if that is so tonight will also be painfree, but I can't be sure yet as I'm still relieing on my memory. This diary is sure going to come in handy.
This beer thing has me stumped, the miller lite I'm drinking doesn't seem to have any affect on the severity on the headache or trigger it, perhaps I drink to slow. I'm considering going out and buying a different brand such as an ale or lager and swig a few down quickly and see what happens. I can't believe I'm using myself as my own guinee pig and thinking about doing this on a night that I believe will be painfree.
If I get the guts to do this I'll let you know how it turns out.
Thanks for all of your help, I'm not better yet but I sure feel stronger and better about myself. You guys are my silver lineing.
Annie
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vietvet2tours
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Re: It's Back --- Sniff
« Reply #17 on: Nov 15th, 2007, 12:59pm » |
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Maybe alcohol is too much a part of your life.
Potter
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Guiseppi
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Re: It's Back --- Sniff
« Reply #18 on: Nov 15th, 2007, 1:45pm » |
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The Red Bull needs to be chugged, the faster you get your system absorbing it the better. Many leave them open in the fridge so they go flat and you don't have to fight the bubbles!!!!
Guiseppi
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Annie
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Re: It's Back --- Sniff
« Reply #19 on: Nov 15th, 2007, 5:23pm » |
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Thanks Guiseppi for the info regarding the Red Bull, I've never had one and didn't even know they were fizzy. I also went out today and bought a Monster JAVA, I've never had one of those either but I looked on the ingrediates and it also had Tourine in it, has anyone ever tried that?
I'm sorry Veitvet that I'm giving out the impression that alcohol is such a big part of my life; its just that I've only found out that it could be a factor and may have set off this new string of headaches. So I'm very interested in how my body reacts, to acohol, to red bull, to food, to sleep... whatever may be happening to me.
I've just turned 47 and my husband and I rarely go out, perhaps 2 times a month to diner and that is a good month and we might have a beer or 2 during dinner. However on Halloween we dressed up in costumes and went out to a Halloween party at a bar with some friends. Although Halloween is our anniversary we never go out we are always treat or treating with our children. My son's X girlfriend was there and had just turned 21 so she wanted to try different drinks so I foolishly drank with her trying several mixed drinks (something I don't do, ok maybe in my 20's). In fact I have no idea what kind of alcohol was in those crazy named drinks. I was having a great time, it was nice to be out talking to people and dancing, until I got home and WHAM I was attacked and I hadn't even gone to bed... I was awake. Since then they have been back but only striking after I go to sleep.
Since I have never kept a diary, I can't recall what had caused my last episode or the one's before that. Now I see the benifits to keeping a diary, since when I am free of these HA's I tend to put it all behind me and go on with my life. I can't even tell you how long it will continue except that if felt like forever, which may in reality only have been a month and a half and not the 2-4 months I was thinking in earily post. I wish I knew.
I guess I'm trying to play catch up and put as much information into my new diary as I can - learn as much as I can. So next time it happens I can better understand myself. My first attack happened when I was 39 (8 yrs ago) and there has been more since then and that's all I can tell you... except I know it's back, it's the same pain, and I wish it would just go away again.
I did go out today and buy some lager beer (I don't drink it) I bought it only to test myself and not because I am looking forward to gussiling two beers quickly for a buzz (I don't gussle beer either). I'm just trying to work up my courage to do it.
Sorry but I guess I have been all over the place in my letters and should work harder on making more sense, but I'm just so tired.
Talk to you later, and thanks for the help.
Annie
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Guiseppi
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Re: It's Back --- Sniff
« Reply #20 on: Nov 15th, 2007, 5:57pm » |
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I can save you some work.....there doesn't seem to be anything specifically that "starts" a cycle. I enjoy my beer and whiskeys off cycle and never have a problem. It is only when I am already "on" cycle that triggers become an issue. After 30 years I've just accepted the beast will come and go as he pleases.
Guiseppi
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GrandPotentate
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Re: It's Back --- Sniff
« Reply #21 on: Nov 15th, 2007, 10:59pm » |
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Annie, I denied for years that beer was an issue, but have since switched to water while in cycle. Ditto for Chinese food. As you browse through other threads, you'll probably find comments about doing the beer test and Chinese food test to see if the cycle is really over. I've got PF months to make up for lost time.
Trigger don't cause hits - we're going to get them regardless. but they seem to screw up out mental clocks and make them more frequent.
Find a doc specifically who is willing to work with you on this. Even a guy like me went through the migraine misdiagnosis and mismedication. Get yourself a good listener.
When I didn't have O2, I did a lot of walking. My wife knew a cycle was on because I was making laps around the house. If the night is good, take laps around the block. Get the blood moving, get the breathing up a bit.
Read up on oxygen. It doesn't work for everyone, but it made a HUGE difference for me. HUGE.
Do your best to establish a rigid monastic schedule while in cycle. Regular go to bed time, regular get-up time, regular meal time. Your internal clock is messed up, but regular days can help to get things under control a bit better.
Keep in touch with the folks on this site. They are pulling for ya!
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RichardN
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Re: It's Back --- Sniff
« Reply #22 on: Nov 16th, 2007, 12:21am » |
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Hi Annie and Welcome
Another vote for 02 here. I can't take Imitrex (high cholesterol and some arterie blockage), so 02 is my only abortive . . . can usually kill the beast in minutes if used early-on in the attack.
I was a heavy drinker when I came here 2/02 and had been for several years, which is why I didn't even think of alchohol as having anything to do with the attacks. I'm a "head trauma" CHer, and my attacks started 1/01 after I nailed my noggin. I would have an attack in the bar, down a couple of Goodies powders (and thought they helped because most of the attacks lasted 20-45 min . . .was just eating up my stomach lining) and when finally the "whoosh, it's gone" occured, "DAMN! . . . give me a beer". When I got here, I was having 6-8 attacks per day and sometimes 3-5 per night, Kip 5-9 . . . I was a basket case. This place gave me a name for the pain and the info/ammo/support to get my life back.
Ya wanna give your doc a little idea of what you go through? Slam down a couple of beers or shots of brandy 15 or 20 min before your next appointment . . . if you have much of a wait, it might be shortened if you have a full-blown attack in the waiting room.
I still go to bars, but they all keep Busch NA (non-alchoholic) . . . you might want to try it if you're a habitual drinker . . . (and even with those, I limit myself to two)
I am a firm believer in water therapy (see "water X 3" . . . link on left. Personally convinced it's helped reduce the frequency/intensity of attacks.
Look for other triggers . . . exhaust fumes, perfumes, various chemical odors.
Regarding keeping your journal . . . remember to use the Kip scale to rate your attacks . . . and take a copy of it (the Kip scale) to your doctor . . . it's quite descriptive of what we go through and (in my mind anyway) more helpful than the normal, "on a scale of zero to ten, zero being no pain and ten being the worst pain you ever felt, how would you rate your pain" . . . . which is wildly open to interpretation.
Again . . .GET SOME OXYGEN! It works for 60-70% of us to abort most attacks.
Be Safe, PFDANs
Richard
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Annie
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Re: It's Back --- Sniff
« Reply #23 on: Nov 16th, 2007, 1:33am » |
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Hi Everyone,
Up again, still afraid to sleep.
I wanted to reply to CostoRicaCriss that I have told my husband that they are back again... he's not happy.
He thinks I'm having a Brain Anurisum (SP???). You know one that recures every so often, sticks around till you can stand it no longer, then vanishes as suddenly as it came. To be forgotten until the next time.
I told him I want to go to the eye doctor first, seems like I've done this in the past, but I am getting older and recently it is becoming difficult to read up close. But the real reason is something else.
Since this began and this time I decided to become more aware of what is going on, I checked on something. My druppy red right eye, the one that felt as if it was going to be pushed out of my socket. I pulled open the upper lid to see what is going on and besides the overly red coloring, I noticed a bump. The bump is bright white against all that red in my eye and it is close to the eyeball between the nose and the eyeball. I can't believe I'm telling this to you guys.
I'm wondering if anyone else has had or even noticed this, in the past I've never looked at my eye. But I do think that since it is there and I have discovered that it is still there when I'm not having an attack that someone should look at it.
Also I wanted to know.. What are shadows, are they the signs that you get during the day that it is coming?
I did do the beer test around 6:00 and had some interesting results starting 5 minutes after drinking another brand of beer. I'll let you know tomorrow, I took notes, but I'm so tired I'm going to try to sleep though the night.
Have a Good Night All,
Annie
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ski2k
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Re: It's Back --- Sniff
« Reply #24 on: Nov 16th, 2007, 12:28pm » |
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Hey there, Annie.
Shadows are what we call that frist initial sign that a headache is coming... usually a little "tug" or pressure behind the eye. Sometimes it will turn into a full blown CH, other times it just stays a shadow- threatening to turn into a headache at any time. For me, that's probably the scariest part of having CH. When the full blown pain hits, you KNOW what it is. But when you get a lingering shadow, you just never know. The anticipation is hell for me! I guess another way to describe a shadow, is a VERY light cluster headache. It's still in the same area as the as the full blown version, it just never gets very painful. More irritating than painful, really.
Hope this helps!!
Adam
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Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
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