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Newbie here (Read 670 times)
TheChadd
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Newbie here
Sep 25th, 2012 at 12:59am
 
Hi I am new here but have been suffering from cluster headaches for over 20 years. Fortunately I have had three or four 3-5 year intermissions so hopefully that will continue. I have tried oxygen as a treatment but it doesn't seem to help. I usually take a VERY HOT microwaveable heating pad to the left side of my head to get relaxed enough to sleep and take 800 mg of ibuprofen. I try to breathe in through my mouth and out through my nose. Cold air in through my nose seems to  inflict more pain. When I wake up my head and eye is sore but at least I can walk around and do things as normal until the next day or whenever the next comes. I am still learning as to what kicks my attacks out for a couple years. One time it just stopped coincidentally (I think) after seeing a dentist. One time I took the standard tapering prednisone 60-3, 50-3, 40-3, 30-3, 20-3, 10-3 and that seemed to work and that is what I am doing now. I am on my 2nd day of 20 mg tomorrow and I have had a few days here and there without a headache but for the most part every night I end up with one.
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Batch
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Control The Beast With
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Re: Newbie here
Reply #1 - Sep 25th, 2012 at 2:24am
 
Hey Chadd,

Welcome aboard CH.com.  You've come to the right place.  Lots of long time cluster headache sufferers (CH'ers) around with first hand experience dealing with the cluster headache disorder who will be more than happy to walk you through some of the better methods of handling this disorder

I'll start with oxygen therapy... It's usually the most effective abortive for the majority of CH'ers...  if the flow rate is high enough and you start early before the pain builds to the point where you're just along for the ride. 

By a high enough oxygen flow rate... we're talking 25 liters/minute.  That's usually the minimum flow rate that supports hyperventilation. 

Most of the old hands who use oxygen therapy for fast aborts... crank the oxygen flow rate up to 40 liters/minute until they get the beast under control with no pain...  then throttle back to a comfortable flow rate and relax for a few more minutes.

Flow rates this high make for greater efficacy and significantly shorter abort times...  like an average of 7 minutes...  or less if you catch it early enough.

Click in the oxygen info link on the left.  There's lots of tried and true information about oxygen therapy well worth reading.

The breathing technique you use during oxygen therapy is important...  The best and most effective breathing technique involves breathing at forced vital capacity tidal volumes.

This entails a breathing procedure and technique where you stand to give your diaphragm a full range of motion, open your mouth and drop your jaw like saying the word "Haw" as you exhale and inhale. 

Exhale forcibly and when it feels like your lungs are empty, do an abdominal crunch like you do during sit-ups.  Hold the abdominal and chest squeeze until you hear your exhaled breath make a wheezing sound for a couple seconds then inhale rapidly until the lungs are completely full then repeat.

This breathing technique requires an O2PTIMASK™ kit with a 3 liter reservoir bag...  You can order one at the CH.com store link at the left for $27.50...  A disposable NRB mask with a 1-liter reservoir bag will be useless at higher flow rates...  you'll collapse the bag before you fill your lungs...

This procedure and breathing technique will squeeze out an additional half to full liter of breath each time you exhale, hence the term "Forced Vital Capacity." 

As end tidal flow of breath leaving the lungs also contains the highest CO2 concentrations, using this breathing technique will pump CO2 out of your circulatory system through the lungs much faster than your body generates it through normal metabolism.  If you're using this breathing technique properly, you'll be hyperventilating like a big dog...

Using this procedure and breathing technique with 100% oxygen is also hard work and yes, you will get tired.  We all do when aborting cluster headaches with higher oxygen flow rates.

However, once you learn that you can make the pain go away very rapidly and reliably using this procedure and breathing technique, you'll find this method of oxygen therapy well worth the effort.

Take care and again...  Welcome aboard.

V/R, Batch 
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Guiseppi
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Re: Newbie here
Reply #2 - Sep 25th, 2012 at 9:11am
 
Welcome to the board Chad. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. For a very small percentage of CH'ers, prednisone will actually break a cycle. Never worked for me but sounds like that has done it for you in the past.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work, it's the link Batch referred to above.

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Batch posted just before me, his posts are long and somewhat technical, read them any ways! Grin The man knows of what he speaks.


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post " Anti-Inflammatory Regimen and Survey” It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Watch the OTC meds especially the ibuprofen, typically worthless for the CH pain, hazardous to your internal organs, and there is a substantial risk of rebound attacks.

Nothing beats a headache specialist neurologist. There are just too many different headache types that GP and even most garden variety neuros are clueless about.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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« Last Edit: Sep 25th, 2012 at 9:13am by Guiseppi »  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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