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Everything posted by mit12

  1. Thanks guys, I know that as my doc says I have a rare condition. I was wondering if my Migraines were a misdiagnosis and that I might of had light clusters and heavy clusters. But it seams that it is actually migraines with cluster events as the doc has said.
  2. In between your hits does your pain go away or do you still have pain? I have been diagnosed with both migraines and Clusters. I am curious because before my first hit my head hurts like a bad migraine and in between hits my head still hurts like I have a bad migraine.
  3. BoscoPiko I can not take antihistamines they are a sure fire way to piss off the beast. As far as I know I am the only one that has this reaction to them. I might try Ginger. Is it in a pill form or powder?
  4. BoscoPiko, Thank you for the quick response. Yes I am on the D3 program. I hope that this is a short lived change.
  5. As most of you know I suffer from both migraines and Clusters. For the second time in my life things have changed. The first change was when both my migraines and Clusters changed from being behind the left eye to going to behind my right eye. Typically the pain feels like a rod is being pushed through my eye and it comes out behind my ear. For the last few days it has changed to being both eyes! Although the pain is slightly less in each eye it is in both which is not only very painful but scary. They are coming on like clusters meaning they get real bad for a short time and let up to like a migraine behind both eyes for a short time and another hit and so on for most of the day. My question is have any of you heard of this or have had this kind of thing? The beast is forever changing, the fight goes on! Thanks guys for listening, I am looking forward to your comments.
  6. Has anyone ever heard of this before? It’s been 3 weeks and I am still having them almost every day. I am panicking because this is how the beast gets woke up!
  7. Busting with both MM and seads got the clusters to stop. I started the D3 regimen and later added Nurtec every other day to Controll migraine’s and O2. As I have said before controlling my migraines is the key to stopping my clusters. My clusters hit after a string of migraines, never had a cluster without having migraines before.
  8. Great video. I have lived with this for most of my life and some of the things doctors have said to me are truly pitiful. Having this curse makes you understand what the term “ practicing medicine” means. My family understands because they have seen it. When I found this site I was done with life, I went from praying for God to end my life to telling my wife that if busting did not work I was going to get the family together and explain to them that I can not live like this anymore I will be ending my life! It was a dark time. This site and the great people literally saved my life! I still have visits from the beast but because of this site and the people I have learned how to get relief without the constant use of triptans and going down the rabbit hole that they cause. Thanks guys!
  9. Afrin is the only nasal spray that I have found that does not set off Clusters. I have never tried it as an abortive. I have not tried the one you guys are talking about but I will be ordering some soon.
  10. Might be a weird question but I am having back issues and when the doctor asks what is your pain level? It hurts like hell but using a 1 to 10 scale with 10 being a cluster headache its like a 5! So I ask how do you give the doctor pain level for pain? My wife thinks that I am at a 9.
  11. 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.
  12. 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.
  13. Great plan, hope you have an awesome vacation!
  14. 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.
  15. 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.
  16. My go to is 3 to 4 Advil PM followed by a large cup of strong coffee, or an energy drink.
  17. 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.
  18. 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.
  19. 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.
  20. So sorry to hear this. Wishing her a full and complete recovery.
  21. 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.
  22. 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.
  23. 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.
  24. 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!
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