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Everything posted by mit12

  1. For me when I get migraines everyday sometime between 1 and 2 weeks I will get a hit with clusters. I have never had a cluster attack with out having migraines first. When I have clusters they are on top of my migraine so after the hit the migraine is still there between the hits. I know the end is coming when the cluster changes sides and is way more intense for usually one long hit that last any where from 1.5 hours to the longest being 3 hours. This ends both the migraines and the clusters for a while. It totally wipes me out mentally.
  2. Sorry for the late response. This is the regulator I use. https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B0069817G8/ref=sr_1_51?gclid=CjwKCAiA_6yfBhBNEiwAkmXy58vLA8apcUX0kTfMIduqxtaXZOjCI_n9M-TEOdVCUz0sD7NuFp3sAhoC-dIQAvD_BwE&hvadid=580937023198&hvdev=t&hvlocphy=9030351&hvnetw=g&hvqmt=e&hvrand=12012740884106048413&hvtargid=kwd-38833742&hydadcr=982_1014986896&keywords=medical+oxygen+regulators&qid=1676443596&sr=8-51&ufe=app_do%3Aamzn1.fos.006c50ae-5d4c-4777-9bc0-4513d670b6bc The bottle time depends on how high flow you use and how long it takes to abort the hits. It has worked well for me.
  3. Great plan, hope you have an awesome vacation!
  4. Follow up. I have been on Nurtec going on 6 months 1 every other day as a preventative. Migraines are about 1/2 as before the Nurtec and only had 1 bout with Clusters. So far I am happy with the results.
  5. You are correct, there is no cure! But you can get some life back with busting and other things people have suggested. I have been where you are and got some relief only to go back. It’s a life long fight and I am thankful for this group of people that have helped me cope with this life.
  6. My go to is 3 to 4 Advil PM followed by a large cup of strong coffee, or an energy drink.
  7. This would be so awesome for the people that suffer with this horrible condition. Magic Mushrooms give me the worst side effects, my body temperature spikes than drops and I get severe buzzing that is almost unbearable. This keeps me from taking them until I am desperate for relief. We have been given the “right to try” for people with a life ending illness, wouldn’t it be great if we could get the right to try for Clusters! I would do BOL-148 in a heartbeat if I could get it.
  8. Suffering from Clusters gives us a first hand understanding of what the term practicing medicine means. Most of us on here have been wrongly diagnosed for years and have been through a hand full of doctors. Best advise I can give is keep pushing on, if your doc does is not willing to work with you find another doc. The fact that you found this site is a huge plus as there are so many great people here that can help you in many ways. As for O2 you can go the way I did and rent an O2 welding tank purchase a regulator from Amazon or Ebay and purchase a mask through Clusterbusters.
  9. I am taking Nurtec every other day as a preventative. It has really slowed down the migraine hits and the clusters have been stopped so far.
  10. So sorry to hear this. Wishing her a full and complete recovery.
  11. I have found that having Clusters teaches us why they say Doctors are “practicing medicine”! Over the last 45+ years I have heard try this and tell me what it does far to many times.
  12. I can take antihistamines for a couple of days only. If I keep taking them they I will get hits. FloNase is the worst it will set of hits after the first use.
  13. I showed my doc the D3 protocol and he has testing my levels. I can not get my D levels up to where it needs to be because of my calcium levels have gotten to high. My doc has me holding steady with 4000 IU of D3 a day.
  14. My story about triptans goes like this. My doctor gave me a prescription for imatrex back when it first came out I used it a few times and had no success at all as a mater of fact it made the headache worse. Next was Zomig ZMT and Nasal spray these worked and my insurance was covering 72 for 3 a month supily plus my doctor would give me hand fulls of samples every month. When I found this site I was using all 72 of the zomig that my insurance was giving me and most of the ones my doctor gave me also. I was having hits almost daily and was ready to end it all. The great people on this site turned me on to trying MM which was against my way of thinking but it was a last ditch effort. Well thank god the busting, O2, D3 program and getting off of triptans saved me. Now I only use triptans while on vacation as a last resort so that my condition does not ruin my wife’s vacation also. If I had to use triptans when I get home I get off of the triptans cold turkey. So to summarize before triptans I was getting 3 or 4 headaches a month when triptans reached 72 plus doses in 3 months I was at almost every day like clock work 3:00 pm hit driving home with one eye shut and sitting in a dark room rocking back and forth until sometime late in the night or early morning. My migraines never stopped and I was getting CH attacks occasionally until I started using Nurtec every other day. This has stopped the migraines almost 100% and I have not had one CH since starting this treatment. I am a little different than most as I have never had a CH without having migraines for multiple days in a row. Now that Nurtec has stopped the migraines the beast has been dormant. I hope that telling my story can help someone from going down the rabbit hole that I went down. This story has a happy ending but it was so close to ending in the worst place imaginable. Thanks guys!
  15. I have never had a massage set off a CH attack but they almost always set off a migraine within 24 hours.
  16. Annett, triptans are both a blessing and a curse, they work great but cause rebound headaches. I would suggest trying to figure out something else to controll the headaches and only use triptans for emergencies. I know this is easier said than done, I have been suffering with these for the last 40 plus years.
  17. A little bit about my situation with Clusters and Migraines. I have a very unique situation in that I have never had a cluster without not first having a migraines for multiple days in a row. Through busting I got the Clusters to calm down a bunch but the migraines seemed to keep coming back. I have always felt that if I could get controll of my migraines my Clusters would stop. Well on January 5th my doc had me try Nurtec taking 1 every other day. They seemed to calm down my migraines from 3 to 5 a week on the average sometimes more down to about 1 every 7 to 10 days through January. February is down to 1 every other week. The greatest thing is I have been 100% cluster free since started Nurtec. I hope that this continues to work as in the past everything that has worked stopped over time. last thing is insurance. This stuff is ridiculously expensive. When I went to the pharmacy with the prescription my insurance would only give me 16 for a three month supply wih. $20 co-pay. I called my Insurance and told them that my doctor wants me to take one every other day and the 3 month supply was not enough. They told me that if doctor wrote the prescription to say 1 tab every other day they would cover it as a preventative medication not an abortive medication with a $90 co-pay
  18. I know when my cycle is over when it switches sides for the last hit. It is way more intense and last longer.
  19. When you say salt for migraines, what is the protocol? I get cravings when I get migraines, they are salty foods chips, pretzels. Cheese is another and chocolate to name a few. All these make the headache worse once the headache starts so I am curious about how this works.
  20. These Clusters are a weird animal, what works for some don’t work for others. For example, Immitrex does not work for me as a matter of fact it makes the hit worse. Zomig nasal spray is by the best abortive med I have ever used. The problem is it gives me rebound headaches. Next best is Zomig ZMT. Maxalt MLT only works some of the time. The key is taking these as soon as you get any sign of a hit. I have talked about the rabbit hole that triptans lead me into, at one time I was going through 72 Zomig in 3 months getting hits 3 to 5 days a week. Things just kept getting worse with the triptans. I was at the end of my rope when I found this site and you guys saved my life. Now days I only use triptans when on vacation so that I do not ruin the trip for my wife. After the vacation I have to quit triptans cold turkey and take the hits until they stop. O2 helps. If it works for you use it, just keep in mind that it may make things way worse. Keep notes. Sorry for the run on reply.
  21. Flying is bad but I find that flights with layovers are the worst, I almost always ends up getting hits. For me its zomig. I try not to use triptans except for vacations this is the only way I have found to keep from ruining trips and vacations for my wife. I hate this condition we have been lucky enough to be born with! Can’t win the lottery but sure as hell can win a condition that only effects .01% of the population!
  22. mit12


    Another 3 weeks and it seems like I get 1 migraine every 2 weeks or so. Completely CH free since I started Nurtec. I have always thought that if I could get controll of the migraines the clusters would stop. I sure hope this continues.
  23. The title of the original post is glasses to treat CH.
  24. I don’t know about different color glasses but my doc told me to get polarized sun glasses way back in the 90s.
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