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Everything posted by mit12

  1. Pebblesthecorgi I agree with you and I hope that we get some progress. My point was that our system the pharmacies does not sell cures, they sell stuff that manages symptoms. The pharmacy had to cry when I found MM and seeds because I no longer use any prescription meds for headaches any more. Thats thousands and thousands of dollars a year they no longer get, not to mention I am not seeing my headache specialist at the co pay of $80 per visit. Again thank you Clusterbusters you guys are the best!
  2. Can you soak them in orange juice? Or will the orange juice kill the LSA?
  3. The only thing that worries me about research and making it legal is cost. 1 Zomig is $30 and they do not stop attacks from happening. I am afraid to think what the cost of a drug that only needs to be taken 3 times and when ever you need a maintenance dose!
  4. If you go to Airgas watch out for the $11 Hazmat charge. It is a BS charge. Call them up and tell them that you refuse to pay a Hazmat charge for a O2 bottle that is in your possession! They will try and tell you that it is a standard charge, ask for the number to their reagional manager. They will wave the charge. Only down side is they will put that charge on every month, so you will have to refrence the phone conversation and deduct the $11 dollars from your payment. Note a 80cf O2 tank is about $200 The 60cf or 100cf tanks are within about $20 plus or minus. If they ask what you are using it for tell them welding.
  5. There is a little difference between blowing out without the mask. You must remember that unless you get a mask with an exhale port as big as the opening of your mouth there will be always a difference.
  6. John2000 I think you have a defective valve in your mask. I have the Clusterbusters mask and there is no problem breathing out.
  7. I have migrains also so at the first sign of a headache I take 4 Advil PM with a energy drink. This works most of the times for my migraines. It seems that the more I control the migtaines without meds the better my CH responds to MM or Seeds. Keep trying different things until you find something that helps.
  8. I do not know how to answer this other than saying that if you can get your hits under control it will get much better. I have a little black soft sided ice chest that I kept my rescue meds in. If I forgot to grab that bag when I left the house I was in a complete panic. This has almost completely gone away now that Iave been able to be 99% CH free for the past year. I still take the bag with me but I have only used it 2 times over the past year compaired to 3 to 5 days a week with hits. Good luck John2000
  9. Mike99 For me a sinus infection will cause me to have hits. I believe it is because of the sleep pattern interuptions. Then again gitting sick will cause me to get hits also.
  10. Make sure you do the MM busting properly. You need to get off certain meds. On this web site you can find a list of meds that you need to stop taking before the bustling process starts.
  11. I have been broken up a lot. I have crushed my acetabulum broke my back, seperated my shoulders one incident, broke collar bones, broke ribs, torn ligaments to name a few. I have passed kidney stones a couple of times. I can tell you that none of those listed come close to the pain of CH!
  12. For me, migraine start out with a dull headache about a 4 behind my right eye and it seems to be connected to the base of my skul at the neck. When I have Cluster events along with a migraine it goes from a dull pain to feeling like someone has pushed a rod through my eye and it comes out behind my ear at the bottom about 2 inches back at a 10+. This will continue for 1 1/2 hour to 3 hours normally with a 30 minute break with just the migraine remaining and another one will hit. The silver lining is when I get a migraine with cluster events they usualley do not go for days. Because of this strangeness of my condition it took over 20 years for my doctor to make a diagnosis of cluster headache.
  13. I suffer from both. For me a Migraine is a pain that just stays there and you want to be still as possable in a dark room with no sound. They last for hours or days at a time. A cluster headache is one that hits hard and you can not sit still because you are trying everything in your power to take away or divert the pain. In my case the hits last 1 1/2 hours to 3 hours although I had one that lasted 5 hours with about a 30 minute break inbetween hits. Don't get me wrong a migraine hurts but the pain difference between a Migraine and a Cluster Headache is being real uncomfortable and something that hurts more than anything you ever experienced.
  14. This used to happen to me every time until I decided to take a maintence dose of MM or seeds the day before my vacation. So far I have been able to travel to a destination spend a week and fly back without a hit.
  15. Zgreek I use Airgas for my rental of O2. They will try and slap on an $11 a month hazmat charge, when you get the first bill call them and tell them you refuse to pay a hazmat charge for a O2 bottle that is in your possession. They will tell you it is their policy. Ask for their regional managers phone number. They will remove the charge. When you pay the next bills reference that phone call and date and just pay the rental cost. They do this all the time even though it is not needed, it is just a way they squeeze $11 out of people that will not challenge their billing.
  16. I have low T. Getting my levels back to normal did not make a difference with my Ch headaches. It is weird that every time I go in for my shot I get a migraine.
  17. Mike, I do not know if there is a correct breathing technique that is perfect for everyone, I think you should experiment with different techniques until you find what works best for you. I have found that taking fast deep breaths exhaling hard for about 1 minute with my regulator set at 25lpm then I reduce the regulator to 10lpm and take a deep breath and hold it until the bag fills exhale hard and repeat untl the hit has passed is what works best for me. I use the clusterbusters non rebreather mask. Good luck.
  18. Sounds like you have the same tyoe of problem I have. After 20 plus years of my Doc of treating my headaches as migraines it turns out that I have migraines with cluster events during the attack. What happens with me is during a migraine I will get a CH that last between 1 1/2 to 3 hours long with 1/2 hour breaks in between CH events. Oxygen and MM and seeds have been a life saver for me.
  19. What ever you do make sure you have plenty of maintence doses. After my first bust every thing was going so good I got comfortable and paid the price.
  20. I have short term memory issues caused from multiple concussions, so I can not speak for others. In saying that I have noticed that after a CH my short term memory is much worse. The good thing is it seems to go back to my normal in a few days.
  21. Treelove2, There are some great people on this site and it looks like we gained another one.
  22. I do maintence doses when I start getting shadows. My best advice is to make sure you read the Playing well together to make sure you are detoxed for 5 days before you start the busting process and continue without taking any pharma during the process.
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