My wife was doing some research and came across this site. I'm thankful for a place to find others that know the pain of Clusters.

About Me:

I am in the middle of my third Cluster. My first was in 2003 and lasted about 2 1/2 months. My second was in 2009 and lasted about 3 weeks. I am about 2 weeks in currently. I just had an appointment with a new specialist that is the director of a major Headache clinic in town. He was incredible and loaded me with information. He created a plan for the attacks.

My Attack Plan:
500 mg Magnesium/day
6-9 mg Melatonin at night
4 mg Decadron for 10 days all in A.M.
-Days: 1-3/3 pills
-Days: 4-6/2 pills
-Days: 7-9/1 pill
80 mg Verapamil
-Days: 1-6/ 1x/day
-Days: 7-10 2x/day
-Days: 10 on 3x/day(until 1 month of total control achieved)
O2 Tank for Onset of attack
-10 liters/min for 10 mins.
6mg Sumavel DosePro
-Needle-Free sumatriptan injection

I have taken:
Maxalt: tabs, quick dissolve tabs,
Imitrex: nasal, tabs, needle injector
Variety of other similar drugs

I have used the O2 now a few times with great success. It is not cheap but I found a company that really cut me a deal and made it affordable. I bought all the equipment and can get a new E tank whenever I need it for 15 bucks. They actually miscalculated the number of uses per tank and the actual is about 4.8 uses as opposed to the 12 they told me. I will be getting a call Monday to figure out if they will adjust the price or just bring me two tanks whenever I need them. I keep the equipment and when I'm empty they swap tanks at my doorstep (pretty nice). I have three tanks currently because of their mistake, they offered them and I gladly accepted.

I was in church this morning when an attack started to come on. I had my O2 with me and was able to abort the attack though my body is still incredibly tired. I am amazed that even when the full on attack is aborted that my body reacts so severely. My pain level is extreme when the attack comes on. I can only describe it as the highest point of a 10 on a 10 point scale. I know that most of you (if not all) understand what this is like. I suffer every attack behind my right eye. If I do not catch the attack within the first minutes then it's game over. I have many that last around 2-4 hours. I had one yesterday that lasted 7 1/2 and was at full strength for about 4.

I would love to hear from anyone and everyone. I hope to offer encouragement in any way I can. I have dealt with these before in the most extreme cases. When I was in college in 2003 I was found passed out on the floor of my dorm. I was an RA and the guys on my floor thought I was just tired until hours passed. The last I remember was trying to open my door, I must have fell but I missed the glass table in my room by inches. God has been faithful to carry me through these well named "Suicide Headaches". I cannot imagine life without Him and the support of hundreds of people praying for me. My wife is with me every step and who I can lean on. If you are the spouse of a Cluster sufferer please know that you are valued, even when we may not want you near us or touching us.

Thanks for reading (if you made it this far :) ) and I look forward to many more posts and reading more on the site.

Thanks,

Dault
  :)

Can you crank up the oxygen to 25lpm with a non-rebreather mask?

          Potter

I would love to know. I have a non-rebreather mask but am unsure how it affects the lpm. I have been using the nose tubes but after reading this site, will be switching over. I set the tank flow to 10 lpm and time 10 minutes. I can't imagine that the non-rebreather affects the lpm but I'm new to the O2 and don't claim to know everything about it, just that it works.

Question: does the non-rebreather affect the lpm?

The Non-rebreather mask means you're just breathing pure oxygen not co2.  Crank it up so the bag is full all the time.

       Potter

I did a quick wiki search and this is what I found about the non-rebreather mask. It appears the lpm is not affected, just the concentration of the O2 which is a big deal. It will allow me to get the most out of the O2 and abort the attack as quickly as possible. I'm still open to hearing if the lpm is affected if anyone knows otherwise.

"High flow oxygen delivery

In cases where the patient requires a flow of up to 100% oxygen, a number of devices are available, with the most common being the non-rebreather mask (or reservoir mask), which is similar to the partial rebreathing mask except it has a series of one-way valves preventing exhaled air from returning to the bag. There should be a minimum flow of 10 L/min."

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Thanks Potter. I am switching tubes now and will keep the lpm at 10+. I have a regulator that goes to 15. Appreciate the insight.

Also, I have a deal that I can get new tubing/masks whenever I want. Is there a recommendation on the amount of time to use each?

Thanks,

dault

Crank it up to 15lpm and then whine and get a script for 25lpm+

   Potter

Potter's right. You need to go pedal to the metal on that regulator. Your doc might know a lot of other stuff, but the 10lpm isn't even close.

As a general rule of thumb, more tends to be better with 02. But there are many, like Jimi, who could abort quickly with flow rates as low as 8 LPM. If your abort rates are in the 6-8 or 10 minute range, you're probably fine to keep that flow rate. If they start stretching past that, take Brew and Potter's advice and crank it up! Some had to go above 25 LPM to get any relief!

As with almost everything else about this condition, it varies greatly from person to person, and even cycle to cycle. ;)

Joe

I agree with all of you. I will say my attack plan set out by my doctor is not overpowering. I appreciate that he is giving me a moderate plan with room to grow, not just going all out from the beginning. I have been successful in aborting within the 10 minutes that he prescribed. The 10 lpm is on the script but he did say to crank it wide open, that he wants me taking in a lot of O2 and not just letting it "seep". I have no doubt that he would give me a script for a higher lpm if I simply asked. His doses for the medications, as I'm seeing on this site, are low as well. I am a guy that likes the "natural" scene so keeping medications down is important to me.

Thank you for all of your thoughts. I will let you know how things progress. I now have 4 E tanks in my house with a new regulator. I just snapped the "nipple" off trying to change tubing (it was defective) and the tank would not turn off (also defective). The company was here within 45 minutes...pretty impressive for Super Bowl day here in Pittsburgh and they are 30 minutes away drive time. I have been pleased all around.

Also, I am paying out of pocket for the O2 due to the deal I got and the lack of support from most insurance companies. I appreciate not burning through tanks as it keeps my costs down.

I am also realizing that the sooner I catch it, the less I need to abort. I get significant signs and though the ramp up time is VERY FAST (minutes to full level 10), I keep the O2 on and right next to me in the house. If I'm home, I'm on it right away. I really believe that I would need a much higher dose if I do not catch it right away. I woke up this morning before my normal attack (got up at 5) so that I would be able to jump on it right away instead of be 5-10 minutes in and already have a full on attack.

dault

You may want to look at the following.

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Good luck, Don

I'm with you Dault. A delay of even a couple of minutes substantially increases my abort time. On cycle I have the E-Tank leaning against the bed so when the damned night terrors hit, I'm breathing my first gulp as I roll outta bed and head downstairs to let the wife sleep!

Joe