mit12

Words put to the life we live. Well done Denny.

I can not begin to put into words what it is like to experience clusters. Your poem is amazing.

CHfather, You are one of those special people that I talk about on this site. I was one of those people that said O2 did not work for me, it was you that encouraged me to try it again with the high flow and proper mask. Your encouragement has changed my life. Thank you my friend.

Siegfried, Because I suffer from both Migraines and CH it took 10 years for my doctor to diagnose me with CH. All my symptoms were migraine symptoms. It wan not intil I went to an appointment and my doctor noticed that I was sweating a little and he asked me what was wrong. I told him that I had a kidney stones. He asked me how I could drive and function with kidney stones and I told him that they are nothing compared to my headaches. He started treating me for CH and I went from headaches 3 to 5 days a week to 1 or 2 per week. My abort of choise has always been Zomig. My insurance at the time would give me 72 for a three month period. I would runout before the new prescription would renew. Long story short, my headaches were craving Zomig and if I did not take it I was in a consistent migraine cycle and wold get CH events also. I was at my wits end when I found Cluster Busters. I asked about busting, O2 and had to try something because I could not live like that any longer. I stopped taking Diltiazem Zomig and Percodan for 5 days and started the busting process. It saved my life! Now days I only take Zomig when I am somewhere that will not allow me to use O2 or if I am not having much luck with O2. life is good now! I can go a few days or even weeks pain free. I know most of my triggers and the ones I can avoid i do and the others I deal with. This site and its great people have helped me more than words can say.

Scubasteb, One thing to remember, do not use any lubricant on an oxygen fitting.

For the fishermen, I am going on a deep sea fishing trip. Any of you CH heads have any issues with the patch?

Thanks Bob. It makes a little more sense now. I thought that I was having some strange migraines because they hurt in the exact same place came at the same time of day but did not hurt as bad. Spiny, I have been on the D3 program for a while now and I tend to agree. Thanks for the replies.

Is there such thing as one person having CH with lower level of pain? I have been diagnosed with both CH and Migraine. But both headaches hurt in the same place just at way different levels. The ones I call CH feel like someone putting a rod through my eye and it comes out the back of my neck just below my skull. And the ones that I call Migraines hurt the same area just way less painful.

CHfather, just the typical hi desert storms which cause havoc. This O2 thing only happened the last two CH attacks. I hope it is just a weird thing that goes away.

The last two CH attacks I have hit the O2 and aborted the attack only to have it hit harder in about 1 hour. Whin I hit the O2 again it does nor stop the attack. Is this common or is it rare? All I know is it makes for a brutal day.

Zomig nasal spray was a life saver for me. My insurance used to give me 36 for 3 month supily and my doc would give me a hand full every visit. Be careful as your headaches will start depending on the Zomig and you will end up having attacks all the time. I had to stop taking it and suffer through until the cycle pased. Now I try not to use it unless I can not stop the attack with Oxygen.

CHfather, well said. I could not imagine watching someone I love go through the pain I feel during an attack. Think you for all you do for all of us.

I have sleep apnea and before I got a CPAP machine my CH was way worse. My oxygen levels would fall dangerously low during sleep which would set off CH. I could fall asleep standing up before getting a CPAP. Keep your sleep study appointment and good luck.

Thanks guys.

ThatHurtsmyhead, that is what I am talking about. Spiny looking at pictures it appears that this has been a slow process and has been this way for a few years according to pictures. I just noticed it because of the bifocals. I thought that my glasses were made uneven. Thanks for the replys.

Spiny, it is the complete eye. Weird thing is i got bifocals and noticed that the reading level was off from side to side. I looked at the glasses and they were the same. I looked in the mirror and it is the eye. It is not a lot but it is noticeable. Does not cause any problems. I guess the strain of having CH over 40 years has taken its tole.

I get Clusters on my right side and have noticed that my right eye is a little lower than my left eye. I have looked at pictures from when I was younger and my eyes look to be the same hight. Has any of you noticed this?

Batch, Thanks for the information very informative. I just checked how long it takes for my O2 bag to fill using 8 Lpm. It takes 11 seconds. The huffing method works for me but it takes much longer. Is 11 seconds of holding the O2 in dangerous to me? I do not want to be giving bad advice.

Clusterb, Try different breating methods. I turn my regulator to 25lpm and breath deep and hard for a couple of minutes, i turn the regulator down to 10 and take a deep breath and hold it until the bag fills exhale hard and repete. I have found that holding the O2 in longer makes it work better/faster for me. I do not think that there is a "one way works for all" way to breath O2. Good luck.

Zomig nasal spary works great but if I use it more than 3 times in a row I will get rebounds. I suggest using O2 and get away from Triptans as much as possable.

Snowflake, i suffered for over 30 years with the beast. Busted with MM and I went from existing to living. There are a lot of good and knowledgeable people on this site that can help you change your life. Keep an open mind and ask questions. Good luck!

Looks great!

Be careful with prednisone, if used to long it can cause bone issues.

John I only have 2 instant triggers. Perfumes and Champagne. All others happen between 15 and 30 minutes after I eat them, Shrimp being the worst.

Anyone ever felt the effects of MM the day after? I took a maintenance dose yesterday 1 1/2 grams my normal. Today I have flashes of the same sensation that I get durning a dose.