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mit12

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Everything posted by mit12

  1. Over 30 years of having real bad Migraines so I thought. Went to the doc and he asked why I was sweating and looking uncomfortable? I told him I am dealing with kidney stones. He asked me how kidney stones feel compared to my headaches? I told him they are a piece of cake. That is when he started treating me for CH and it was the first relief I had. Being misdiagnosed is unfortunately common. You have found the right place, there are a lot of great people on this site that can and will help you.
  2. Coolestnurse, When I get CH attacks they last at least 3 hours and have had them last for 5 hours. The time between hits is usually with about 1/2 hour. The most hits I have ever had in a day was 4, typically I only get 3 hits a day.
  3. Brandylynn, These Clusters are a strange beast. yes I feel the same way as you, it seems that anything you take all the time will stop working. I use triptans on occasion, but I try not to use them unless I am someware that I can not use oxygen or if I have to be someware real quick. For me triptans cause me to have more cycles if I use them more than one day.
  4. Dmlonghorn, sorry you need to be here but glad to have you. For me sound is not a trigger. But being started especially when sleeping can be a trigger. There are some great people on this site that can and will help you. Good luck.
  5. Markk, You have a similar situation that I have. Before I retired every time I was looking forward to going somewhere or doing something special I would get hit with clusters. I would also get clusters when the stress of work went away. The only way I was able to keep working was that 99% of my cluster attacks started with a Migraine at 3:00pm and with in 1 1/2 hour the clusters would start. This happened 3 to 5 days a week every week over 30 years. Thank god I found this site and thank god you found this site. There are a lot of great people in this Community that can and will help you. They have saved my life. Please look into the busting process and Oxygen.
  6. CH is a strange beast. Back in 96 i got devorced and for some reason I was CH and migraine free for one year. One complete year without a headache. Well they came back and have been back since.
  7. Just finished a 25 1/2 hour migraine and had tinnitus all the way through, the headache is gone but the tinnitus is still going.
  8. Merry Christmas and a happy new year to all my cluster buddys and their families. May we all have some pain free time with our loved ones.
  9. Before busting I was 3 to 5 days a week and I knew that I had a couple days relief comming after a monster hit, one that is all you can handle plus a little bit more.
  10. mit12

    CPAP users

    For years when the season changes my CH starts acting up especially during winter months. I found out that the cold air being pumped into my nose from the CPAP was causing a real problem for me. I was waking up with headaches and for me almost all headaches will bring the beast out. If any of you are having issues like this you might try a heated hose and preheating the water before bed. It has made a big difference for me.
  11. There are no complaints here. You guys have been and are doing a fantastic job. Happy Holidays.
  12. Words put to the life we live. Well done Denny.
  13. I can not begin to put into words what it is like to experience clusters. Your poem is amazing.
  14. 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.
  15. 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.
  16. Scubasteb, One thing to remember, do not use any lubricant on an oxygen fitting.
  17. For the fishermen, I am going on a deep sea fishing trip. Any of you CH heads have any issues with the patch?
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
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