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Everything posted by spiny

  1. 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 bust
  2. 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
  3. 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.
  4. spiny


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


    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.
  6. spiny


    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!
  7. spiny


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


    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.
  9. Welcome! Are you enrolled in the study? We have a great group here and they are happy to help. ATB!
  10. 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.
  11. 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.
  12. 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!
  13. Can you hit an Urgent Care Center? They could diagnosis the ear ache ASAP. Not sure where you are located, sorry.
  14. 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
  15. Oh, I get that Jon. I just find it funny/annoying that that is the answer I get. Of course, being female, I can't even have 'CH' according to some Neuros. Slowly we are dragging them into the 21st century and eyes are opening. It is all good. I went from an easy Chronic to a hard Episodic! Yes, there is a reason, yes there is a cause, yes there is an answer. I just wonder who long it will take for the doctors to get the 'new' news. They seem to lag pretty far behind for the most part. New Neural Pathways are our biggest help currently in my opinion. Mind you, my opinion. And
  16. Hey Moxie! The 'cure' has been often stated as 'aging out' of CH. Guess I will see how big a lie that is when I hit 80!
  17. Just to chime in - you are getting rid of the CO2 and raising the O2 and building up your strength and body too!! Dang good in my book! Carry on and stay healthy and happy d-rock!! It wish I could do that too! I would be in pretty great shape every spring! Thank you for the contribution!
  18. Attacking and demanding attention is not a good way to post. You want input from those who are here a lot, you have had it! State your case and stop whining already. We are open to anything that helps with this hell. And yes, some, including me, have had 10 year remissions only to find that the beast just laid in wait and GREW over that time. I wish you the best and hope that you never get another parasite. Understand that many here have had sinus surgeries and our sinuses reamed out prior to diagnosis. We have had teeth pulled and given up favorite foods looking for relief. We, as
  19. We are here to help! So, I am very glad that you found us. The MRI is to eliminate any other issues in your brain. It is a good thing. Some people present with what seems like Ch, but the MRI finds something else. Not often, but often enough to make it a good thing to get out of the way first thing. Not having a weepy eye is not an indication that you do not have CH. You can also have sweating on that side only or a runny nose from that nostril. As well as the predictable times of your hits. Fun Times is spot on with the caffeine too. Since you know when your hits are coming, you c
  20. Hey, it isn't Christmas yet!! He has a few days. Don't go all straight on me now.
  21. CHF - Could you post the link for the O2 printout?
  22. CHF has a lovely link on the effectiveness of O2 and one you can print out to take to your doctor too. His job is to fight for you! Not blow you off. I would agree with the dropping of the Indo based on your experience with it. It is a drug of elimination! It did not do that, so why take it? You are the second person I know who calls it the dragon! I am the other. On bad days it is the octopus.
  23. Hahaha!! He will be alright in a few minutes though we hope! ROTFL!! I could put out a 'snack' for him.
  24. Okay - I watch LSU games! Just helping them. Go Tigers! I refer to the TV as the Blue Light of Death. Husband does not get it!!
  25. I did !!! I hope that you did too! I will be stealing the 'Gobble till you wobble'! Hahaha
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