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ClusterBusters

spiny

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Everything posted by spiny

  1. 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!
  2. spiny

    15 year remission?

    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!
  3. spiny

    Weak background pain after end of cycle?

    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 progress. This can continue for a few weeks if the cycle was bad. It is also the first sign of a cycle starting. Like Fun Times mentioned, do you have O2 for your hits or do you just use triptans and verap?
  4. 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.
  5. spiny

    Prescription Frustrations - long rant

    What sized tank do you have Kat?
  6. spiny

    Prescription Frustrations - long rant

    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!!
  7. spiny

    Prescription Frustrations - long rant

    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.
  8. spiny

    It's been a long time

    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.
  9. 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!!
  10. spiny

    Indomethacin is doing something

    So happy that you are getting relief Siegfried! Keep us posted please. All info is important for the group.
  11. spiny

    HI

    Yes, Verap works for many and very well for some. Others have it work for a while, only to fail in the long run. It is a first line med for CH. It lowers blood pressure, so that can be a limiting factor. What is your BP? I took it for over a year and it worked great. Then I went off on the advice of my dentist. When I tried to go back, the 240mg I took per day did nothing. And my BP went down to 80/60 when resting. That prohibited an increase, so I ditched it. If it is not working, why take it? If you can take a high enough does, it usually works. You can find a lot of info on busting in the closed boards. Many will not join in on the 'open' boards - the ones you see listed before logging in are the open boards. And the bots can access them. Read the New Users Banner at the top of the page for a lot of info on the site. O2 is the best abortive, but it must be used correctly and at a flow rate of 15 to 25 lpm. Used incorrectly, there is little to no benefit. Doctors generally just prescribe and do not know how you need to use it for relief. Read the O2 page. It should be your best friend. I also suggest the D3 Regimen. It has been a lifesaver for many of us! Have you been given a run of Indomethacin? There is a CH look-a-like that responds very well to that while CH does not. I bring it up because you are having up to 12 hits a day. How long do they last? ATB and Welcome!
  12. spiny

    Sumatriptan where has this been all my life

    Welcome 20yYL! Triptans can be a life saver. They can be really bad too. Normally, you do not take more than 2 6mg in 24 hours! You can split the dose though. Type something like 'splitting triptans' into the search bar and you will get several threads to look at. Where is your pure O2 from a tank? That should be your first line of defense! No bad side effects and it works quickly. Like triptans, it does not prevent the next one. But O2 won't destroy your body either and that is a definite plus! And narcotics really don't help with CH! You can take a lot and it will not help most, if not any patient! I was having a scope, under sedation and OUT when I got a hit. They had to give general to finish the scope! Talk about shocked docs, they were! They did have the O2 for me and I killed it as soon as I woke up.
  13. Hey xBoss! Sorry that you are back in CH torture again. What happened? Any idea what is up? Bad weather around you too? This sucks. I am so sorry.
  14. spiny

    Taurine

    Ouch! I just realized that it is 7:20!!
  15. spiny

    Taurine

    Make a strong cup of coffee and take just before you expect the hit. That is another thing to try. I make mine in advance and put it in the fridge to get nice and cold - iced coffee, but strong.
  16. spiny

    Taurine

    They have great flavors Brain! Currently running on the new coconut/pineapple flavor here. It is very lightly flavored compared to the Mango or Pom mix!
  17. spiny

    Taurine

    I really hope it works as well for you as it does for me Kat!!!! Being 'Red Bull' sick is the pits.
  18. spiny

    Taurine

    I take just caffeine. Either in capsule form or V8 Energy. I have also used cold coffee prepped earlier for the occasion. They work for me. The energy drinks and shots make me feel sick to my stomach. They literally don't stay down. So, I was very happy to find that the V8 version does not upset my stomach. No taurine in them. So, for me, it does not matter that there is no taurine.
  19. spiny

    New to the group

    Welcome! Are you enrolled in the study? We have a great group here and they are happy to help. ATB!
  20. spiny

    Ending cycle

    The weather change will bring on what I call 'rogue' hits. Falling barometric pressure brings them on for me. But it is not a cycle beginning for me - just a rogue hit. Are you grabbing some caffeine when you get a hit? Drinking it down before you hit the O2 can really help with aborting one. Just slam one down fast as you head for the O2! And I second CHF's mention of a low tank being an issue at times. It seems like you just can't get enough for a full abort on occasion when the tank is low on O2.
  21. spiny

    Our fearless leader has a new title!!

    That is the best news of 2020!!! Bob is a saint when it comes to CH. And our Fantastic Leader. Congrats to Bob, Eileen, and Ainslee! All great people in our midst.
  22. I hope that you found the 'cause' for you. 'Cure' is a bad word to use though. Too many have tried several methods of exercise and while it helps, it is not a 'cure'. Actually, most CHers' shy away from any stated 'cure' they read. And for good reason. CH can morph and will morph over time. You may get 2 years PF status only to have it return - again and again. Several members have been very shocked when they have a ten year remission and it still comes back. It is a very rude awakening. Stay PF and be happy. I am glad that you found something that works for you!
  23. spiny

    They’re back...

    Can you hit an Urgent Care Center? They could diagnosis the ear ache ASAP. Not sure where you are located, sorry.
  24. spiny

    They’re back...

    The scalp sensitivity is something I had to deal with one cycle. That was before I got a Neuro. It lasted six months. It made shampooing and brushing my hair an awful experience. Ear pain? Yes, can be the CH too. But with difficulty swallowing, I would have that checked out if possible. Mainly because it hurt to swallow and that is often a sign of an ear infection. It could be CH trigeminal nerve pain or it could be an infection. Best to rule out an infection quickly. But, with the scalp pain too, I would suspect the CH. Just be safe and have it checked out while you wait for your Neuro appointment. BTW - it really sucks that the CH is back now!!! Glare......
  25. spiny

    Prednisone weigh your benefits vs risks

    All drugs have good and bad sides that need to be weighed by the doctor and patient. Pred has many good uses, but is not meant for the 'long' haul. Like all drugs, some can take it and some cannot. Some can take 10mg dose and others no more than 5mg due to the feelings of being having downed about 5 cups of coffee for breakfast! I followed the link and it goes to a non-secure page where you need to search for the article. At that point, I backed out. I wish the link was securely available to read. The NIH may have something safe to peruse.
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