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Topic: Hi everyone (Read 230 times) |
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kevinmsimpson
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Sorry to meet you under these circumstances. Got my first clusters (and thankfully diagnosis) about six years ago. For me, I think my clusters are triggered by long bouts of stress.
I've been in remission about six years but felt them start up again about a month ago. Was hoping it would pass but the past week confirmed they are back.
I've been under a large amount of stress for the past few months (divorce, job) and had a full blown attack today.
I wish everyone a permanent remission sometime soon. Noone should have to experience this. Thanks for listening. It's easier to talk to people who can relate. As you know, most people can't (at least at first)
Again, thanks.
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Guiseppi
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Re: Hi everyone
« Reply #1 on: Oct 9th, 2006, 6:27pm » |
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Welcome to the board, and I agree, great place to talk to people, crappy reason for being here! You'll find people are really nosey here so I'll be the first to ask what your medication regimen is. I'm always looking for something else that works in case mine stop working! Give us a quick run down of what does and doesn't work for you, then please make yourself at home and stay awhile! Hope you find help and a few friends here.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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LeLimey
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OUCH-US - Less "ME" and more "WE"
 
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Re: Hi everyone
« Reply #2 on: Oct 9th, 2006, 6:58pm » |
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Hi Kevin,
Lets see what we can do to help you, give us a resume of what you've tried to date. I'm sorry you have to be here, I can promise though that we'll move heaven and earth to help you.
Looking forward to hearing more from you 
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Richr8
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It's all about today...
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Re: Hi everyone
« Reply #3 on: Oct 9th, 2006, 7:25pm » |
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Hi Kevin,
Sorry it had to be here, but glad to meet you. I'd give my teeth for a remission like that ,but oh how it must feel on the return. Anyway, you've got us to lean on, and as Helen says, tell us where you've been, and we'll tell you where to go.
There is lots of great info here to read and learn from, and perhaps you can teach us a thing or two.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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kevinmsimpson
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Re: Hi everyone
« Reply #4 on: Oct 9th, 2006, 8:02pm » |
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First instance I thought it was a sudden toothache. Dentist confirmed it wasn't and suggested I see MD.
HMO practioner (who I never met) suggested Trigenimal Neuraglia (sic) and ordered MRI. MRI came back negative.
HMO Primary Care Physician (again, never met before) said no way TN since he only saw one case and it was his mother. Left his office pissed because he wouldn't listen to me.
After two weeks of bad bouts of cluster, walked into Mass. General Hospital and demanded to see neurologist. Nice neuroligist agreed to see me and reviewed MRI. He diagnosed CH. Put me on Tegretol (sic) but warned monthly blood work would be needed due to it being a steroid.
Tegretol was no help and I knew myself that I was under a lot of stress and assumed it was the cause.
As you can tell, I'm not a fan of the medical field or pharmaceuticals. As a friend of mine says, if the natives in Africa don't need it (i.e. Viagra, Flonase, etc.) then we shouldn't and I agree with his take.
After a few more weeks the CH's decreased to the point that they stopped. Many friends and family had a hard time understanding diagnosis. I did some research on the internet a the time and agreed with CH diagnosis.
Right now I deal with headaches by meditating (if you call it that). It works most times but my recent bout has been short in duration. Six years ago, it was two hour epic battles a few times a day.
I'll continue with my relaxing when things get tough but after today I really needed to vent to someone who could relate. I hoped they would never return but so much for wishing.
I wish you all a speedy recovery. Thanks for listening.
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LeLimey
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Re: Hi everyone
« Reply #5 on: Oct 9th, 2006, 8:39pm » |
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There are several non med approaches that may interest you Kevin,
Oxygen, Red Bull or generic equivalents, strong coffee. All of these are vaso constrictors. In a hit the blood vessels on the affected side of your head swell by up to 20x their normal size. The only thing that reduces the pain (abortives) are things which reduce that swelling. In the meds world these would be triptan drugs. O2 needs to be breathed through a non rebreather mask at 15 lpm and you need to get on it asap. Its my personal favourite abortive.
Red bull and equivalents taste like.. well I'll keep it clean and say something vile!  If you chug a can as fast as you can as soon as you feel the pain coming on it can help. As can strong coffee. Caffeine is a vaso constrictor. Red bull also contains taurine which increases the effect of the caffeine like a turbo boost.
Ice or heat are also very effective.
In terms of preventatives you might want to look into Kudzu on the meds board and www.clusterbusters.com
Ask any questions you like, you've got a lot of reading ahead of you but rest assured, we will help you through this
Helen
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Guiseppi
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Re: Hi everyone
« Reply #6 on: Oct 9th, 2006, 9:13pm » |
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My vote is also for oxygen as your first line of defense. Almost no side affects and if started in the first 3-5 minutes, for me, it will abort 90% of them. I'm a little different then most as I have to take cafergot when I start the oxygen or the headache comes right back as soon as the oxygen stops. Many find just the oxygen alone does it. As previously mentioned, it HAS TO BE AT A HIGH FLOW, 15LPM, AND A NON RE BREATHER MASK. Used incorrectly it doesn't work at all and people have given up hope on it. Best of luck to you, wishing you a short cycle and a LONG remission!
Guiseppi
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Linda_Howell
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Re: Hi everyone
« Reply #7 on: Oct 9th, 2006, 9:29pm » |
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Also Kevin you may want to try this.
Quote:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Tata
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Hi Kevin-
My bouts seem to occur after prolonged periods of stress, too. Mine seem to hit when things calm down for a while--then I get slammed by them. My dad was just let out of the hospital and is dying of renal failure and congestive heart failure. My mom had a quintuple heart by-pass less than a year ago and all of the by-passes have since failed. We've had a virus or germ in our house that has kept at least one out of the six of us in our family sick since August. And now these clusters.
I usually have a couple warning signs a couple of weeks before they hit. First I'll get an unbelievable tension headache in the back of my neck that travels up the back of my head like a vise. Nothing can take it away, and it lasts for most of the day--pretty bad, but I can still function. Then I usually have a lot of twitching in my eye and upper lip--just a small muscle or nerve jumping that lets me know what's coming. This time was different, though--the twitching started the day before the first cluster and I don't know if I had the tension HA or not because I had the flu and felt achy and cruddy anyway. Try to hang in there and definitely try Oxygen if you're like me and like to avoid meds as much as possible. Good luck
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