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shaktima
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Why is it.....?
« on: Nov 24th, 2005, 12:23am »
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That before a cluster of headaches hit (which I am in now) I can always tell one is coming because I literally CANNOT sleep no matter how tired I am!  Then, of course, when I do finally fall asleep, the BEAST comes to visit during an especially "deep sleep," usually of which, I am dreaming.  For a moment, I am still asleep and thinking, "oh no, there it is again". EXACTLY AT 2:00 AM! EVERY SINGLE NIGHT!  I am in tears.  I usually get up, get the Maxalt, the ice pack, rock and roll til it gets quiet enough that I can go back to bed and sleep and then have to work the whole next day.  I am getting more exhausted by the day, no sleep, intense pain!  This is a nightmare from hell!  I noticed am getting even worse ones since I started taking an amino acid, named L-theanine (was told it would help me to sleep) Well it does that.................................
 
 
until the beast comes to visit!  Could it be that this herb could be triggering my clusterS?  If so, I would rather not sleep and have NO pain.  I know that this herb does work on brain chemicals, serotonin, GABA (whatever that is) to help you relax.  What is it?  I just should never ever relax and then I will be fine?  I have suffered these for over 10 years now.....and I usually get them at season changes.  Although they are lessening a bit in intensity over the years, it still sucks to wake up every night at 2:00 am with excruciating pain.  Some days, I wish I could just die, even though I know that is just the pain talking.  
 
I have not been on this board for a few years, as I find that also focusing too much on these beasts sometimes seems to "invite" them in and that scares me to death, but it sure is comforting to talk to other people who share the same kind of dilemma. Thanks for listening.
Hopefully cluster-free tonight and sound asleep at 2:00 am!
Cathy Undecided
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Re: Why is it.....?
« Reply #1 on: Nov 24th, 2005, 9:19am »
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From what I can see, L-theanine is used primarily for mood enhancement and relaxation.  Here are some links I found with Google that explain the substance:
 
http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/lth_0296.s html
 
http://brain.web-us.com/l-theanine_anxiety_reducer.htm
 
Here is the notification the manufacturers sent to the FDA, saying it's use is to "Support relaxation and reduce irritability and low mood states"
 
http://www.fda.gov/ohrms/dockets/dailys/04/apr04/040204/97s-0162-let1348 9-vol112.pdf
 
Since the L-Theanine seems to make the hits worse, you might try talking to your doctor about switching to Melatonin.  Many people here use it either alone or with Benadryl to help them sleep better with fewer night time attacks.  As with everything else it doesn't work for everyone.  The dosage that seems to work for the people who swear by it is between 6mg and 9mg.  It can take several days to a week to start working for you.
 
Always check for interactions with the meds you are taking.  It would appear to be too new for Drugdigest.com and RxList.com to have information on it yet.  Try  checking with your pharmacist.
« Last Edit: Nov 24th, 2005, 9:39am by Gator » IP Logged
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Re: Why is it.....?
« Reply #2 on: Nov 24th, 2005, 9:21am »
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Hi Cathy.  I'm so sorry you are going through so much pain and sleeplessness right now.  As to the L-theanine, I don't know much about that particular supplement.  Many sufferers here find some sleep help with melatonin or even benedryl.  If you do a search on melatonin, I'm certain that you can find many threads talking about using it to help sleep.  But your 2:00 am wakeups sound pretty typical.  You didn't mention what, if any, other meds you are on for your headaches.  Read as much as you can on this site for med help, including the link on oxygen (on the left).  O2 is used quite successfully by many people here, but it needs to be administered correctly to abort headaches quickly.  Since it has been a while since you have been to this board, you can find a wealth of info to help you and your doctor come up with some relief for you.   Pain free wishes to you.
Pat
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Jasmyn
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Re: Why is it.....?
« Reply #3 on: Nov 24th, 2005, 2:54pm »
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Hi Cathy.
 
Like Pat said, there are a wealth of new information on medication and alternative therapies that have shown great results for us clusterheads.
 
Read and read more.
 
As for relaxing, most of us will swear by it to stay stressed.
 
Wishing you some sleep and PF times.
 
Jas
« Last Edit: Nov 24th, 2005, 2:56pm by Jasmyn » IP Logged

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Re: Why is it.....?
« Reply #4 on: Nov 26th, 2005, 7:22am »
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Sounds like you're hitting the REM sleep and that's when you're getting hit. Melatonin is working wonders for a lot of us in preventing this. You might try that. But don't expect it to work on the first dose. It takes a little while (a couple of weeks) to get in your system. But it's great to sleep....
 
The exhaustion is the worst part of the episodic hits. When I was episodic, I could make it thru the first month, but about half way thru the second month I usually ended up in the hospital for DHE-45 IV to break the cycle because I was too exhausted to even move.  
 
After going Chronic, (several years later) I've finally learned to accept that I'm going to get hit and build a life around the hits. I keep O2 handy and my meds within reach (don't leave home without them). I've been on Melatonin for years and try to sleep at night so I don't have the exhaustion during the day and it works out pretty well.  
 
It's not how I'd have chosen to live, but it's the only life I have so I'm making lemonade (ok, so it took a lot of years to accept that). Just keep trying until you find something that works for you.  
 
Hugs BD
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