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Topic: new to board, old to clusters... (Read 313 times) |
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scootman
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new to board, old to clusters...
« on: Sep 20th, 2007, 2:21pm » |
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Hello everyone, as you may have surmised by now, I am brand new to the board, I am not new, however unfortunate, to clusters. I have these since I was an adolescent, maybe before. I am almost 33 years old now and suffer more often than not. For years I thought I had migraines, but I knew something wasn't quite right because the symtoms didn't seem quite right. And the frequency...oh the horror! Finally a friend of mine who is a doctor came home from the Air Force and started his own practice. He specializes in headaches and immediately identified mine as clusters.
I can get these guys everyday for weeks on end and feel lucky if I get a break for a week. Sometimes I do, howwever, go for a few weeks to a month or more without any. Those occures are few and far between. From what I have read on here, my symptoms are not always as bad as some of yours but my frequency seem to be more often than most. Taking a nap during the day is almost always a death sentence for me. I will rarely, if ever, wake up and not have a ha. I guess you could say mine are more chronic than cyclic.
The best treatment I have found so far besdes a trip to the ER is nerve meds such as Xanax, Clonipin or Valuum with Excedrin. It seems to me that the nerve pills, or trquilizers as some refer to them, simply put me to sleep and allow the massive amount of OTC meds to work. Of course, I am waiting for the day when I wake up and my eyes have turned yellow from liver failure. But that hasn't happened yet. I have tried every type of pain medication under the sun and most don't have any effect on the cluster, just the side affects of pain-meds. Some, such as hydrocodone, can actually trigger a cluster for me so I stay as far away from that stuff as possible. My doctor has tried several preventative measures from dietary to high-blood pressure meds (even though I don't usually have high blood pressure) to anti-depressents (although I usually am not depressed).
So, I have given you a touch of my story about clusters. I guess I should add a little about who I am and what I do. My name is Clark Smith and I teach Vocational Computer Engineering at one of our local public schools. I am happily married and have daughters ages 11, 10 and 9. My middle daughter has recently begun to suffer from headaches occasionaly, thus the renew effort to seek out more information and preventative/treatment measures. I feel extremely guilty over her headaches because I realize that they were passed from my mother to me and now to her.
I guess that's about it for me. The rest most of you can figure out on your own if you know anything at all about these headaches. I stay in my cave (bedroom) a lot when I am getting these more frequently than not as I am sure many others do. If anyone has any sugestions that I can take to my doctor please feel free to post away. I have tried Imitrex and received NO relief at all. I didn't do the auto-injectors but I did try the pills for awhile. I have actually tried the water treatment and have had some minor success with it, but not always. I guess I have rambled on enough for now. Thanks in advance for any suggestions.
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Clark Smith
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Guiseppi
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Re: new to board, old to clusters...
« Reply #1 on: Sep 20th, 2007, 2:39pm » |
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Welcome to the board!! If the imitrex pills didn't work you should give the injectors a shot, when all else fails they haven't failed me yet.
Then get thee some oxygen. Get your buddy to prescribe it for you. You have to use it right or your wasting your energy and time. You need to breathe pure oxygen at the first hint that a headache is coming on. You will need a NON REBREATHER MASK at a high flow rate, up to 15 litres per minute. It's essential you breathe pure 02 with no outside air and no rebreathing of your air. For me it will abort a hit in under 10 minutes, usually closer to 6 minutes.
You said you've tried some meds, you're right, oral painkillers are a waste of time and many just make it worse. I'm episodic, male, 47 and weigh about 190. I use 1200 mg a day of lithium when on cycle, it blocks about 80-9-%, oxygen and occasional imitrex shots do the rest.
You also might want to try slamming an energy drink at the first sign of a headache, one containing both caffeine and taurine. many can abort a headache this way.
Welcome to the board, I hope you can find some relief.
Guiseppi
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scootman
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Re: new to board, old to clusters...
« Reply #2 on: Sep 20th, 2007, 2:53pm » |
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Thanks for the suggestions and I will certainly give them a try. Oddly enough I have an oxygen tank with a mask at home that was my mothers and never got returned to the medical supply company when she quit needing it. I guess I will give that a try.
As far as the Imitrex is concerned I will make an appointment next week and talk to my doc about it and see what he thinks. I am not big on needles but anything is better than a cluster that lasts for days on end with little relief.
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Clark Smith
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Ctech
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Re: new to board, old to clusters...
« Reply #3 on: Sep 20th, 2007, 3:50pm » |
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Check out the OUCH website on the left panel, it has some great info.
Also TRY THE 02! I can't tell you enough how great it has worked for me. You said you have some, but make sure you have the correct flow rate and mask or it will be a waste of time...
Welcome to Cluster Ville!
Chris.
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Guiseppi
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Re: new to board, old to clusters...
« Reply #4 on: Sep 20th, 2007, 4:03pm » |
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As far as needles, I'm with you, can't even look when they take my blood or I get woozy! The stat dose looks like a glorified ball point ben, you never actually see the needle. You push it against your butt and push the button.
Guiseppi
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scootman
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Re: new to board, old to clusters...
« Reply #5 on: Sep 20th, 2007, 4:16pm » |
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Thanks Chris, for the suggestions. I will certainly give the o2 a try. I will try anything once if there is even the slimmest chance that it will abort the current cluster.
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Clark Smith
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DennisM1045
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Re: new to board, old to clusters...
« Reply #6 on: Sep 20th, 2007, 4:58pm » |
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Hi Clark! Welcome to your new home. It's about time you got here 
What Guiseppi said! Listen to him. He knows what he's talking about.
I haven't found a preventative that works for me yet but I'm not done looking. There are lots of options out there.
Get yourself over to to the OUCH site and join the brotherhood while you are there. There is lots of good info to help you educate yourself. http://www.ouch-us.org Your friend might be good but you will always be your best advocate.
Anyway, read, read, read and ask all the questions you want. You are now in the hands of the most supportive group of people I've ever been around.
-Dennis-
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Barry_T_Coles
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Re: new to board, old to clusters...
« Reply #7 on: Sep 20th, 2007, 7:04pm » |
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Welcome Scoot 
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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Rosybabe
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Re: new to board, old to clusters...
« Reply #8 on: Sep 20th, 2007, 7:43pm » |
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Welcome HOME Clark!!
Glad you found us!!
The finest already gave you good information. 
Wishing you lots and lots of pain free time!!
Rosy.
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scootman
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Re: new to board, old to clusters...
« Reply #9 on: Sep 20th, 2007, 10:16pm » |
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Thanks everyone for the warm welcome and the great advice. I have been in a cycle now since last Saturday. Saturday night was the worse. Sunday and Monday were not bad but last night was pretty rough and it has been a pretty rough day today, although not terriblly bad...yet. I have no meds at the current time because I simply can't keep them! I never seem to have enough of anything. I can't even keep tylenol in the house. I know it does no good (usually) to take them but I do anyway on the off chance that I might get some relief. I don't know what to suggest to my doctor. We tried depakote last time and it didn't get me out of the cycle or seem to help prevent the next cycle.
I just wish there was something that would help. I don't care if it knocks me out. I would rather be comfortable and asleep than in excruciating pain.
Mine are almost always on the right side, nehind my right eye and in my forehead along my hairline. Sometimes they actually hurt in the very top of my head. Mine seem to be a little different than most because I sometimes have symptoms of other types of headaches such as migrraines and tension headaches but most of the symptoms and the frequency of them seem to point to clusters. I had never even heard of clusters and always thought I was habing migraines but I didn''t have the sensitivity to light and sound or the nasuea associated with them. The ha I have right now is in the very top of my head and isn't excruciating like last night or Saturday night but I have had it almost all day and it will not respond to any of my usual tricks to relieve pain.
Really HOT water followed by something really cold sometimes helps. My doctor says this is because when you do this the hot helps to open the blood vessels and the cold stimulates the flow so the increased blood flow in the affected area sometimes experiences some relief. Not always, not even usually, just sometimes. I am going to go to a medical supply store this weekend to get a different oxygen mask because the one I have here is a rebreather and from what I understand through the reading on this site is that I want one that is not a rebreather.
Anyway, I am rambling again.
Again thank you all for your very warm welcome. Misery loves company and now I know that I am in good company.
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Clark Smith
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DennisM1045
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Re: new to board, old to clusters...
« Reply #10 on: Sep 21st, 2007, 9:41am » |
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If you are taking everything in sight to "just get some relief" you are likely suffering from rebound headaches. These come from overmedication even with over the counter meds like Tylenol and Excedrine Migraine. Be careful.
On the O2 front, there is really good info on what mask you need and how they funciton and how to use them here: http://www.ouch-us.org/medications/oxygen/o2links.htm.
Read everything! When used properly 100% O2 can be your best friend
Good luck...
-Dennis-
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scootman
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Re: new to board, old to clusters...
« Reply #11 on: Sep 21st, 2007, 10:17am » |
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Thanks Dennis, I appreciate the info. I may have made it sound a little worse than it is as far as the meds I take. I won't really take everything in sight. I am too paranoid about addiction to do that. The first time I picked up a cigarette I was hooked and as I grew older I began to understand that I do have a bit of an addictive personality. I won't take any prescription meds unless they are prescribed to ME. Not even if it is prescribed to my wife. I will only take OTC in the recommended dosages, which is why they are generally usesless but sometimes will help a little. It's just that I seem to have to take meds so often when in a cycle that it scares me.
Hopefuly the o2 will help and I will be able to get some relief and solve my paranoia about meds. Is it possible to overdo the o2? Is there a such thing as too much oxygen? That is another question that I need to have answered or I will worry about.
I used to drink socially but I don't even do that anymore because alcohol is often a trigger for me. If I drink a couple of beers with my buddies when we are fishing then I am almost begging for a CH to come on. Besides, beer makes me sleepy and I know I will have a ch when I wake up. It's almost unavoidable.
Thanks again for the info. I am going to print some info off from the link you provided and take it with me so that I know I get the right kind of mask tomorrow.
Good luck to everyone. I will let you know how well the oxygen works for me in a few days or so. I am really excited about trying this out.
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Clark Smith
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