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Kevin
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Dazed & confused..
« on: Jan 11th, 2008, 7:19pm » |
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Hello fellow CH'ers. I have visited this board in the past reading up on what you all are saying, trying to better understand CH's and am always amazed at you all (your insight and passion towards helping each other). Which leads to my question. Brief summary of me -
Name is Kevin, married with 3 kids, 38 yrs old. I was diagnosed with CH in 10th grade. I have had them off and on since (no more than one batch a year). Usually fall-spring for a month or so. Always 1 severe one a night for an hourish-NEVER during the day. Then a couple of bouts ago I started to try to fight back. For the first bout or so tried O2. Limited success. Seemed good early in the cycle, but lost it's effectiveness 1/2 way through. Then I tried Imitrex. WOW-wonderdrug (I thought). Question-Ever since I have started fighting this, my headaches have morphed into a bigger beast. Now at night as I fight them, they last ALL night. Imitrex stops them as a last resort, but when I take Imitrex, it opens up the day to an attack and I have got rebound headaches (I think). I tried a couple of nights ago to go back to taking it for the hour, but that didn't work. Another all-nighter. Am I better off trying to get back to taking it to try to mold them back to being regular? Or do these morph on their own. Do you all think that by fighting them, I am the one causing them to be worse/longer? I am SO confused and tired.. Went to the Doc yesterday morning, had one right there in her office (my first daytime one this cycle). She prescribed Depakote, along with my O2 and I think she called in Imitrex. I appreciate any feedback, your opionions/feedback are appreciated beyond comprehension.
Thanks-Kevin
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Kevin_M
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Re: Dazed & confused..
« Reply #1 on: Jan 11th, 2008, 9:34pm » |
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on Jan 11th, 2008, 7:19pm, Kevin wrote:| I started to try to fight back. For the first bout or so tried O2. Limited success. Seemed good early in the cycle, but lost it's effectiveness 1/2 way through. |
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Let us know how you used the oxygen. Do you have a high-flow regulator that goes to 15Lpm and a non-rebreather mask? Stay on it for 10 minutes breathing JUST 100% oxygen, only breathing in emptying the reservior bag. This should help with a big majority of the hits.
Quote:| Then I tried Imitrex. WOW-wonderdrug (I thought). Question-Ever since I have started fighting this, my headaches have morphed into a bigger beast. |
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How many are you using per night and day? Aborting all hits only with Imitrex may change things to more frequent.
Quote:| Now at night as I fight them, they last ALL night. |
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Do you mean they come back every two hours? Or does it simply not go away, subsides and picks up again. A long hit can possibly run into another after fighting one a long time.
Quote:| Imitrex stops them as a last resort, but when I take Imitrex, it opens up the day to an attack and I have got rebound headaches (I think). |
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Happening during the day can be common, though while sleeping seems a most suseptible time.
Quote:| She prescribed Depakote, along with my O2 and I think she called in Imitrex. |
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She is attempting a preventive medication, which is great, to prevent them from occuring. If this is your first preventive med, the results can vary, I took a few and I believe Depakote was one but that didn't work for me, until I found one that helped. Preventatives can take up to two weeks to become effective, finding out by then it may not work can be probable, too.
A referral to a headache specialist, neurologist, can be a very good step for preventive help.
Use the oxygen and let us know how you are using it, there are ways that are more effective. It can help many times and lessen the Imitrex usage, but a preventative is very important.
Welcome.
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Kevin
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Re: Dazed & confused..
« Reply #2 on: Jan 12th, 2008, 1:35am » |
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I volunteer as an EMT-B/Firefighter. I use a non-rebreather @ 15L. Thankfully I have access to O2. I have spent quite a bit of time this week laying on a cot in an ambulance  On the Imitrex, I try to wait as long as I can (no more than 1 a day). The are coming now all night from 3s to 10s one after another. I have already had 3 tonight (2 aborted with O2) one still nagging but not off the charts. When I get rid of one and fall asleep, there is one in waiting. I got all 3 tonight without even going to sleep. 2 weeks to become effective..... What did you find that works for you? THANKS
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Kevin_M
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Re: Dazed & confused..
« Reply #3 on: Jan 12th, 2008, 7:40am » |
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on Jan 12th, 2008, 1:35am, Kevin wrote:| When I get rid of one and fall asleep, there is one in waiting. I got all 3 tonight without even going to sleep. 2 weeks to become effective..... What did you find that works for you? |
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Has happened to me, had to go to the Imitrex, also. It seems the lack of sleep and stress compounds things.
Try staying on the oxygen longer each time, or try the Imitrex earlier one night to see if it can hold off the others following, to see if that gives different results, using the oxygen for the hits thereafter, they may be more abortable.
Went through a period of consecutive repeat hits with oxygen, tough to abort sometimes. Honestly, at the time I let my doctor know, gave him feedback as to my situation and stress, we increased the preventative again and was able to get the situation under control and was able to decrease in time, stress decreased helpfully, too.
Since you are starting Depakote, she may want you to stick with it to give it a chance. I didn't care for the side effects or its effectiveness. Verapamil finally gave results.
Perhaps energy drinks with taurine and caffeine during the day may help. I like Tab that has been brought back again. Icepaks may help cope at night too when while trying to get one to subside.
Keep in touch
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tessistired
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Re: Dazed & confused..
« Reply #4 on: Jan 12th, 2008, 8:32am » |
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Hi there Kevin. Welcome to the family!!
So glad you found us but sorry it had to be under these circumstances and that you are suffering. There is so much to be learned here and the people here are wonderful!!
As Kevin_M asked you...share as much as you can and like too so we can help you as best as we can...we are family here and want to support you and be there for you!
So read up and good luck to you. You are not alone!!!!!!!!!
Many Blessings to you and yours!
PAIN FREE DAYS AND NIGHTS ALWAYS!!
Tess
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Bob_Johnson
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Re: Dazed & confused..
« Reply #5 on: Jan 12th, 2008, 10:50am » |
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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The second link is a good tool to use as a discussion guide with the doc. The firs link is a site to explore in depth. Much good information; operated by a headache doc in the Chicago area.
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DennisM1045
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Re: Dazed & confused..
« Reply #6 on: Jan 12th, 2008, 1:54pm » |
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Hi Kevin,
Sorry you are getting slammed like this. As to your original question: Am I causing my cycles to get worse by fighting? I doubt it. This beast morphs all the time. Don't stop fighting.
A lot of folks can't keep the beast away with O2 alone. That's where the Tauriene in energy drinks comes in handy. I usually double up and slam an energy drink and then get on the O2. This way once I've knocked him down he typically stays down.
Only if this combination fails do I kill him with an Imitrex injection. Energy Drinks can keep you from sleeping too so you want be aware of that possibility.
I hope you get a break soon. Oh yea, welcome to the family 
-Dennis-
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| « Last Edit: Jan 12th, 2008, 1:54pm by DennisM1045 » |
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sleeponhold
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Re: Dazed & confused..
« Reply #7 on: Jan 13th, 2008, 12:55am » |
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Hang in there! Sorry to hear the Imitrex isn't working so well. It's my gold. I hope that O2 works - I haven't had a dr. give it to me, yet. I've been on Depakote for years, but don't let anyone try to BS you. It takes 4-6 weeks for your body to adjust to it and see results. Plus it may not be the correct dose right away. Be patient. If it makes you nauseous, take it with a cup of milk or some bread. Depakote helps me, in any case. Good luck!
Really, really try the Red Bull. It's helped me control things during the day like nothing ever has! If I can catch one coming, I'll slam 2-3 cans (ice cold) then start doing jumping jacks, dancing, run around the block. I one-time killed a killer one coming on with 8 cans. Sure, I was up all night - but my apartment got really clean! lol I try not to drink to much caff. after 8 or 9 pm, too, so it doesn't disrupt my sleep.
SLEEP: I know. Yeah, right! Do your best to get on a "normal sleep cycle." That means between 10-12 at night and waking around 6-9 am, whatever you usually need. CH is directly tied the body's clock and it's very important to reset your clock when it gets off whack during attacks like this. Even if you're not asleep during those time periods, it's important to only stay in bed during those time periods because that's what your body wants and needs. Ultimately, your sleep will adjust and follow. And whatever you do, DO NOT TAKE NAPS!! You're only encouraging trouble.
Have you tried magnesium supplements? That also works quite well for me for maintenance and has, in some cases, completely stopped CH cycles for me. Heads up, though, you might spend a lot of time on the, um, toilet. But it's better than a headache!! 
Someone recommended an ice pack for your head during an attack. That helps me too. I also stick my head in the sink under the cold water. Or I'll get in a cold shower, then get out and shiver in the cold.
I hope you find some relief soon!!
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Kevin
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Re: Dazed & confused..
« Reply #8 on: Jan 13th, 2008, 5:14pm » |
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Thanks everyone for your feedback!! It helps finding people with real world experience with all of the drugs and stuff the Dr's are prescribing. I think alot of the time, the Dr's are looking to sites like this to educate themselves (mine is)..
Kevin
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Kevin_M
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Re: Dazed & confused..
« Reply #9 on: Jan 13th, 2008, 6:10pm » |
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It's preferable not to have to take any drugs but the pain is so immense something has to be done in some sort of short order.
With clusters if you've got it, it's going to happen. Prevention is best, but keeping abortives handy are a necessity to help with extreme turmoil, keep jobs, sleep and have a life, it's tricky. Sufferers and supporter's help and sharing keeps reliance on doctor's knowledge not the only game in town. We got a town here, too. 
on Jan 11th, 2008, 7:19pm, Kevin wrote:| Then a couple of bouts ago I started to try to fight back. |
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THAT'S the mark! Keep it up, it's tough, somebody's always here for you.
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| « Last Edit: Jan 13th, 2008, 6:11pm by Kevin_M » |
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