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spiny

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Everything posted by spiny

  1. So happy that you are in a much better place. May your bust be a huge success! I wonder if the meds were messing with the D3 Regimen? It would be amazing if this non-pharma aid were to work for you now. Let us know if you see the magnolias!
  2. Hey Vipul. I had sinus surgery in the 90's for sinusitis and deviated septum. I was having constant sinus infections. Post surgery, it would bleed with the slightest increase in pressure due exercise or heat. I had to wear a mask in welding class to avoid bleeding on my work. It would gush very quickly. At that time, I was in full remission. The bleeding continued for about 10 years post op. So, the sinuses are opaque. It was suggested by my primary care doctor to have repeat surgery many years later. That was not going to happen. It can be a rough surgery and recovery is longer than one would
  3. Very interesting. So, you have just one of the new patches? I wonder how much is actually in the dose? Thanks for enrolling and furthering study on this!!!! We all benefit when anyone volunteers to further knowledge!
  4. Yes you should if you have not had a scan done yet! Usually a patient gets one with their diagnosis in the US. For CH, it should come back as 'Nothing found' basically. It is to rule out 'other' stuff being the issue and causing the CH like symptoms. Have you looked into the D3 Regimen yet Vipul?
  5. Wow! Congratulations! Looks like you bent the right ear to get the mess fixed.
  6. I don't recall if it was 2 weeks pf or a month in the old stats. Anyway. If it was a month, they changed it to two weeks. And vice versa.
  7. I can say that I understand dumping it all. That is the only way to find out if it is truly helping or not! Personally, I would go back on the D3 Regimen. Just because it is good for you and does not interfere with other stuff to my knowledge. It is wonderful that you feel better minus that stuff, isn't it? Best of luck this weekend!!!
  8. I once saw a sign in the back window of a van. It said 'If you can read this, you are in sniper range.'!!!! No, pistol range dufus. I'm about 30' behind you to read your sign and you are showing a disturbing lack of ballistic knowledge displaying it that way.
  9. Thankfully the medicos are learning that CH affects women about as often as men. Many women were labeled as having migraines when actually they had CH. And then they are prescribed a Triptan in pill form, which is pretty useless for CH. Takes too long to kick in. Your move and the return of CH has reported by many. I had the same thing happen 16 - 17 years ago. I had been PF for 10 years! It is disgusting when it happens. With no O2 at the moment and you being in Ohio, you could truck it outside in the cold and do your deep breathing and forced exhale there. It should provide some r
  10. Caffeine does not trigger CH. From my personal experience and the people here. It is a very effective aid in moderating or aborting a hit for CHers'.
  11. Sucks for sure Steve! The D3 Regimen should help a lot! Have you had blood labs done to see where you D is now? Is it low? You can start the regimen and use loading even if you do not yet have the lab report. It has helped soooo many Ch'ers in many ways! Triptans can cause more hits. It is one of those 'double edged' swords unfortunately. And only two shots per 24 hours allowed.
  12. I don't have the answers either, sorry! Perhaps I can get a friend with a message to see if they have more info for us Fun Times. As I recall lithium has a looooong taper too. You have to be pretty easy with it.
  13. Fun Times, Please read Playing Well Together in the Clusterbuster Files. It has been pushed over to page three. It will give you some needed info on the Lithium! It can be some nasty stuff.
  14. Try GoodRx for the script. It should lower the cost.Be aware that you are limited as to how many you can use in 24 hours. You can split the injections too. O2?
  15. Dana, I am mostly pain free thanks to the D3 Regimen! It is awesome that vitamins can do what opioids cannot.
  16. I so wish that you could ditch the migraine like the CH!!! Many have and it breaks my heart that it does not help you in that respect!
  17. I had a ten year break! Then they returned. Different and worse unfortunately. Finding CB was a lifesaver for me. Now, I have not had a full cycle for years. Rogue hits? Yes. Mostly due to weather or altitude changes. Or surgery where epinephrine was used in the anesthesia. I am sorry that yours have returned as well. But very happy that you found us!
  18. To put your mind at ease and cover all bases, you can ask your neuro for an MRI if it has been a few years. You have had an MRI, correct? They are usually done when you are diagnosed. Most likely, it is nothing to worry about. But I would encourage you to get a new scan. It will put your mind at ease, confirm that there is not another issue to deal with and let you know that the pain is actually the end of your current cycle acting weird. My post pain or whatever you want to call it is the Trigeminal Nerve branch over the eyebrow. It will still light up at 'hit' time, but not progre
  19. spiny

    Vitamine D3

    You will find all the info on the D3 Regimen on page one of this thread. Read through it and start your own thread to draw more responses. The links there are very helpful and Batch is a saint with this info. He will respond to a pm if you send hi one.
  20. Jost, I sucked the cutting tip on our welding setup with a wet wash cloth over the tip the whole first cycle I knew about O2! Just dialed the regulator to the flow that I needed at the moment. Only turn on the O2 not the Acetyline. It worked great till I got my Clustermask and my own tanks in the house. If you rent a tank, then you have to have it filled by the company. If you buy it, you can have any welding O2 supplier fill it. The dog sure misses those trips since I got setup in the house!!
  21. Venting is a good thing! Especially when you were treated so rottenly! Not unusual though. It is very infuriating to be put in a position of fighting for a non-destructive med when they will happily pay for one that can be destructive! Sounds stupid, no? The best of luck with Airgas! Hopefully someone who has fought this battle and won will help us out here. I just went with a welding set up.
  22. We miss you Tony!!!!! It is good to see a post from you. I hope that you can return on a regular basis too. I have watched your FB group grow over the years. You have done a tremendous job helping CHer's with your site.
  23. Please do explore the O2 and read and use the proper method for it to kill the hit. Yes, it is w.o.r.k. You have to get the bad stuff out by doing a crunch when you exhale and then inhale deeply, hold it a bit, then exhale with force - like a crunch when exercising! Your breath should hiss at the end like when you do a breathing test. And stay on for about 5 minutes after the hit is gone. Just lower the flow rate to match your normal breathing pattern. It really is a lifesaver! That video hurt to watch. So many days like that in my history. Your O2 should be your best friend!!
  24. So happy that you are getting relief Siegfried! Keep us posted please. All info is important for the group.
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