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New Long time CH sufferer (Read 3655 times)
Scott
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Lakeland, FL
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New Long time CH sufferer
Aug 26th, 2008 at 10:28am
 
Hello fellow Ch survivors.  New here and realizing that even though it feels like I am the only victim of the beast, I'm not.  After all, you'll likely never see someone walking aroun WalMart with a CH.  (I had this happen to me once in Target)

My name is Scott.  I am 42, and I l live in Lakeland, FL.  I moved here 5 years ago from MA.  (Yes, major Red Sox/Patriots fan).  I have a wife, Rachel, and a son, Jason, who left a week ago to begin his journey in college.  

I have delt with CH for some 15 plus years.  I do not believe there is a medication I have not tried.  My CH are always on the same side during a "season", but can change sides when a new season begins.  The ones I experience during a left side season are far worse than a right side season.  They are not on a typical cycle according to the calendar, and I have had seasons last from a month to 9 months, and my PF periods last as long as 2 years.  I am curently in a left side cycle.  

The one thing that changed for me this time is the lingering effects afterward, and the legnth.  While most are good for an hour of torture, every few days I am getting ones that last much longer.   For years I knew if I had one, it was going to last 42 minutes and would be over.  I would come out with almost a euphoric feeling.  

I wonder if anyone else had any of the following in their history; I did have a bout with menengitis as a child, and my mother was epileptic.

I can truly relate to those of you who suffer from this condition.  While it's awful to have, and I would be happy to know nobody did, there is some comfort in knowing there are others dealing with the same beast.  

I've never used a message board.  Be patient as I figure out how to use this.  Certainly I could never tolerate the light from the monitor during these attacks.  But I welcome any thoughts, information or advice.  
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SHB
 
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Guiseppi
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Re: New Long time CH sufferer
Reply #1 - Aug 26th, 2008 at 10:48am
 
I'm a couple years older then you, my youngest just graduated from college, I'm a west coaster, (I kinda like the Red Sox because they regularly beat the Yankees, whom I hate), and I hate the Patriots!!! Other then that, welcome to the board! Smiley

I know you mentioned you tried everything, when you get a chance, give us a run down of what you are currently using, how you're using it and it's relative effectiveness. You've got several thousand CH sufferers on the board, at least one of us will have a suggestion that may help you. Then again you may throw a pearl at us that'll be usefull to someone.

Sorry to hear you're in cycle, hoping you catch a short go and a long remission to follow!

Guiseppi
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Scott
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Lakeland, FL
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Re: New Long time CH sufferer
Reply #2 - Aug 26th, 2008 at 11:14am
 
Oh my goodness.  Let's see... Verapamil, O2, depakote, every OTC med, Imitrex, Wellbutrin, prednisone, morphine ((in ER, by IV) doesn't stop the CH, but makes me not care that I have one)), so many others, but I can't think of all of them right now. 

Because I've been out of work for some time, I'm not taking anything now that you can't buy OTC.  Oxygen was slightly helpful, but since many attacks occur during the night, it was useless, and ultimately I was cut off, even thoughmy insurance did pay for it. 

When I get one during the day, my only warning is that I get very quiet.  I don't talk, nor do i wish to be spoken to.  At that point I know I have about 5 minutes to get to total darkness.  I often dry heave, get the stuffy nose, and cough.  There is no relief once the switch has been turned on.  I am a smoker, never been a drinker.  I've been told that the trigger can happen up to 6 weeks before the actual season begins.  I will sometimes lose control of my breathing, though getting control can bring a calmer sense.  And yes,death is a welcome alternative to some of these attacks. 

I've watched everything from what I eat to what I do, and while I can't find the trigger, I avoid cheese like the plague when in season.  That will make a typical headache last much longer, at least for me.
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Chad
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Re: New Long time CH sufferer
Reply #3 - Aug 26th, 2008 at 11:52am
 
Avoid smoking and all tobacco for that matter during a cycle.  That was my biggest trigger of them all even over alcohol.  I'm not saying it's your trigger, but it was mine.
Since I have quit, my total amount of CH have reduced per day and my cycles have reduced by about 4 weeks since they're usually clockwork.   Try mushrooms at the beginning or during a cycle.  Read this site Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Wishing you PF days ahead.
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Em
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Re: New Long time CH sufferer
Reply #4 - Aug 26th, 2008 at 12:10pm
 
Hello and welcome to the board.

For relief, some folks find that cold or heat helps. Personally, I use ice packs on my face and head.

Also, lots use energy drinks with caffeine and taurine in or coffee (as strong as you can take it) as soon as the hit starts and that can help.

I'm sorry you haven't found that magic bullet yet. However, there are plenty here who are more experienced than me who'll be able to provide further advice than what I've given.

Good luck.

Em
xx

PS - Some triggers of mine are strong smells, alcohol and painkillers (aspirin, paracetamol). You may want to keep an eye out for these too just in case.
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Guiseppi
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Re: New Long time CH sufferer
Reply #5 - Aug 26th, 2008 at 12:26pm
 
Since you suffer from the night time terrors, go to your local pharmacy, whole foods or vitamin store, I think even wal mart carries it, and get some melatonin. It's a cheap, over the counter med that aids in sleeping. Start at 3-6 mg before you go to sleep, and slowly increase the doseage. Some people go as high as 12-15 mg to get relief. Many have found they can avoid the night time attacks using this. Makes it a little tougher to get up in the morning but a few strong cups of coffee will kick you back up.

Emily has a good point about the energy drinks. Monster, Rock Star, any containing caffeine and at least 1000 mg of Taurine. Many find they can abort or at least substantially reduce a hit by chugging one at the first sign of an attack. Linda keeps open cans in the fridge while she is on cycle. They go flat and are easier to chug fast, you really want to get em in you fast.

If you have access to welding oxygen, it's exactly the same as the medical oxygen, PM Jonny, he'll show you how to rig a tank. (don't tell the welding people you are using it for medical reasons!) Oxygen is proving the magic bullet for many but it has to be used correctly or it's useless. It must be started as soon as you sense tha attack is starting. You need to get ONLY PURE 02 to your lungs, no outside air, no exhaled air. This requires a non re breather or "cluster" mask, with a high flow regulator, at least 15 LPM. Many have decided 02 didn;t work beacuse they were using nasal canulas, rebreather masks, low flow rates etc.

Stick around, there is no reason to just ride these damned things out, they hurt too much.

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Karl
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Re: New Long time CH sufferer
Reply #6 - Aug 26th, 2008 at 12:51pm
 
i don't have alot of sound advice for you guissepe and others are far more eloquent when it comes to things to try and weapons to have on hand when it strikes.
I have had these for six years now and just lately have i began to assemble my magic cocktail.
the one thing that has helped me the most is the new found support from my lovely wife. that combined with this site, o2,rnergy drinks/coffee.and imitrex, ice, .
i have a very methodic routine. and i know it may change just as this beast does with time. but I have support of a doctor,wife,and ch.com.
welcome and let me know if i can help.
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thebbz
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Re: New Long time CH sufferer
Reply #7 - Aug 26th, 2008 at 12:56pm
 
caffeine and 02.
all the best
welcome  and houdy
thebb
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Scott
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Re: New Long time CH sufferer
Reply #8 - Aug 26th, 2008 at 2:01pm
 
I didn't expect so many resp =onses so quickly.  By all means, keep em coming, and a huge THANK YOU   Smiley
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SHB
 
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Guiseppi
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Re: New Long time CH sufferer
Reply #9 - Aug 26th, 2008 at 2:05pm
 
Sorry pal, you're family now, you're stuck with us! Wink

Guiseppi
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ninja mom
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Re: New Long time CH sufferer
Reply #10 - Aug 26th, 2008 at 5:21pm
 
Scott,
Welcome home!  Hope you get the chance to meet another clusterhead in person-it will change your life.  Sounds like you've been through the treatment drill, sometimes we have to go backwards, a medication may work for a cycle, not work the next cycle, then work again at a latter date. 

Stick around, ask questions ... you may want to start a headache diary if you haven't already Hopefully someone can give us a link to that....I just got hit with my 4th CH today-all over 8's.  not all brain cells functioning yet...

PFDAN y'all
kathy
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Scott
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Re: New Long time CH sufferer
Reply #11 - Aug 26th, 2008 at 8:10pm
 
Thank you all again.  I can't help thinking how many of us came to the web seeking solutions, and only found other sufferers.  People who do not experience what we do, or live with someone who does, do not understand the severity of our plight.  What we are missing, and I have not read everything here, is a preventative treatment that actually works.  Many of you have treatments for once we get our signs, but is there someone out there working toward a cure? 

I have to share this. About 3 years ago I was in a long season, and applied for disability (SS).  It was denied, because the condition does not last for a year consecutively.  They claim the condition does not interfere with my ability to work.  Anyone agree with that?

I'll try some of your suggestions, and I hope to get more.  I've already gone and purchased melatonin, and looked at the energy drinks, but having an allergy to Niacin, that did not seem like a viable alternative. 

I also want to support others, so if someone can clue me in on the whole message board thing I'd appreciate it.  Also is there a chat room for us out there?  Thanks. PFDAN to all.  Scott
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tuck
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Re: New Long time CH sufferer
Reply #12 - Aug 26th, 2008 at 9:46pm
 
Scott, welcome dude !!!! I am fairly new here also, but have been a CH sufferer since i was 18,, I am 42 now. I am a lefty, I share many of the same symptoms you have described, as I know most of us here do. I also would get the dry heaves, ( i think we are pretty unique in that category, but DEFINATELY NOT the only two.) The others have given you GREAT info, as they ALWAYS do, and will continue to do in the future. Its amazing how the folks here "bring you right in". its because we ALL UNDERSTAND!!!!!!!!!!!! I cant add much except I too had tryed oxygen years ago with zero effect, only to find out on this site that I was using it WRONG. now I swear by it!!!!!! The best advice I can give, is the advice I always give,,,, read, read, then read some more, then read EVEN MORE on this site and the links provided!!!!!the more you read, the more you learn. and that my friend , is how we "fight the beast".  with knowledge!!!!  and ALL of us here are winning! and now you are too!!!!!!!!!!!!  Tuck
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cancer shmancer,, i get cluster headaches!
 
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Batch
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Re: New Long time CH sufferer
Reply #13 - Aug 26th, 2008 at 9:57pm
 
Hey Scott,

Welcome back aboard.  We all know getting nailed by the beast at night is a bummer.  The pain gets a head start before you wake up enough to realize what's happening and you end up in a tail chase that at best, results in a second place finish in most cases.  Traditional oxygen therapy prescribed by most PCPs and neurologists at 7 to 9 liters/minute is useless above a kip-4 or Kip-5 at start of therapy under these conditions.  Even a flow rate of 15 liters/minute prescribed by forward thinking neurologists will be largely ineffective in aborting cluster headache attacks and stopping the pain at Kip-7 or above at start of oxygen therapy.  

This information is based on over a year's worth of data collected on hundreds of aborts to determine the effectiveness of oxygen therapy as an abortive.  For example, the pain of an average cluster headache attack increases in intensity by at least one Kip-Level after start of oxygen therapy and prior to the abort at flow rates of 15 liters/minute and above.  At lower flow rates it can easily increase by two Kip-levels.  

There's also a direct correlation between the Kip-Level of pain and time to abort.  In short, the higher the Kip-Level during the oxygen therapy, the longer it will take for this therapy to effectively abort the cluster headache attack.  What's even more interesting is there's an equal but opposite correlation between flow rate and time to abort, meaning the higher the oxygen flow rate, the shorter the time to abort.

Much of the ineffectiveness of oxygen therapy is due to a reduced respiration rate and the higher effectiveness is due to an increased respiration rate.  I know this might sound confusing, but when you use a non-rebreather oxygen mask, your respiration rate is restricted to the flow rate of the oxygen regulator.  For example, at a flow rate of 7 to 9 liters/minute, your respiration rate will be 10 to 15 at best depending on the tidal volume of oxygen inhaled with each breath.  That makes oxygen therapy at lower flow rates only effective for attacks at Kip-4 to Kip-5 during the therapy, and even then, the time to abort will be lengthy.  

This is due to a build up of CO2 caused by the restricted lung ventilation. As the pain increases so does the level of our physical activity.  At Kip-7 to Kip-8, most of us are dancing the Tarantella or Cha Cha, and above that we're running into walls or banging our heads on the floor.  This level of physical activity generates even more CO2, but the restricted ventilation of the lungs makes expelling this excess CO2 impossible so CO2 levels rise even more.

The bad news is an elevated CO2 level in the arterial bloodstream above normal (hypercapnia) serves as a powerful vasodilator.  As cluster headache attacks are associated with a rapid dilation of the arteries in and around the trigeminal nerve, that actually makes the cluster headache attack worse as it can completely negate the beneficial effects of vasoconstriction provided by elevated levels of oxygen (hyperoxia).

The good news is that higher oxygen flow rates at 25 liters/minute and above support progressively higher respiration rates and the higher rates reduce excess levels of CO2 in the arterial bloodstream below normal. In simple terms, this is called hyperventilation and it results in a temporary condition called respiratory alkalosis/hypocapnia that serves as a powerful vasoconstrictor.

If you've followed me so far, you've figured like I and others have, that a good non-rebreather mask and an oxygen regulator capable at least 25 liters/minute makes aborting cluster headache attacks a lot easier and far more effective than flow rates of 15 liters/minute or lower.

Take care, and please shoot me a PM if you have any questions.

V/R, Batch
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thebbz
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Re: New Long time CH sufferer
Reply #14 - Aug 27th, 2008 at 11:56am
 
Here's a link to the chatroom
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No one is home right now.
all the best
thebb
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Mrs Wo
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Re: New Long time CH sufferer
Reply #15 - Aug 27th, 2008 at 2:45pm
 
Hi Scott,

Glad you are here, sorry you are finding it hard to find relief.

Red Bulls, most of us here slam one down at the onset of an attack and it works wonders.  No prescription needed!   Smiley

All the best to you!  There is so much information and advice here, you may find what works for you, at least for a while. 

Welcome Home!
Kathleen
Wichita, Kansas
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