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Everything posted by spiny

  1. Bust, the Energy Drinks make me sick and shaky. I keep coffee in the fridge made by the 'cold brew' method. Namely, you put grounds in the holder that goes in a jug and stick it in the fridge. In 24 hours, you have cold brewed coffee. Just convenient for me. I used to just make extra coffee and keep it cold for a hit. Caffeine alone works well for me and some others as well. If you can enjoy a cup of coffee with no issues, then I would try that. Cold is best for most CHers. Just the cold seems to help at times. Someone once said ' One for drinking and one for rubbing.' They were sa
  2. Your 'share' will help others. Many will read it and relate. Now that you are a member, the closed boards are available. That is where the busting info and posts will normally appear. We keep those boards for members only. When discussing busting, post that question or thread on Theory & Implementation or Share Your Busting Stories. You will get more replies there. Being closed keeps the Bots from accessing that info. The D3 Regimen has helped many either get pain free or at least it slows ramp-up time and lowers the max intensity. It really does help a lot of people and is ju
  3. Well, he may think he is doing it for safety when he does not understand that many CHer's have a tank or three of O2 at any given time, year round. Even Episodic's do not wait for a cycle to hit before getting their O2 in order! They may store them carefully out of sight, but they are at the ready when needed. When you set it up, you check for leaks. You secure it so it won't fall and create a possible hazard. Odd that they will give you meds that can be deadly and that is fine, but O2 tanks are a hazard. I find this to be a bit insulting. Perhaps not intentional, but still insulting. It
  4. Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining. I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening.
  5. Hello Dr. J! I can respond to the temple/cheekbone bit. My CH is a glowing hot railroad nail in my temple. It grows and the pain crawls out of my head and lights up the branches of the trigeminal nerve. Then it bores into my brain and eye. My family sees me rubbing my forehead and the let me know because I am absentmindedly rubbing while talking or watching TV. And that is the end of my evening with uncontrolled CH. They began with one a night at 8pm. Then, weeks later they began to hit at night - right after I fell asleep. As the weeks went by, it worked up to its' peak of four per nigh
  6. Batch, can you explain to me what the Quercetin does? The what and why of it. I have it here and have seen it recommended by some in the viral/medical fields. Thanks!
  7. spiny


    Hi dehabel. When you read the link I suggest that you print out a copy if you can. That way you will know what needs to be prescribed and can show a new doctor. Insurance can be a fight, but that O2 is life saving! CHF - Does your link contain that page? Usually you have that too. The D3 Regimen is several vitamins that you take to hopefully bring down the intensity of your hits and to slow the ramp up down so that you can get to your O2. Many people have gotten Pain Free doing that. Mid cycle? Likely not. Help prevent the next cycle? Yeppers. After such a nice long break, it
  8. This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur
  9. spiny


    The statement above is over the top. Yes, you may post on any thread and you know that. It is polite, if you don't like the thread, to scroll on by and not even bother with it or the OP or the responses. That is also common knowledge. And you and I have discussed this already. More than once. What kind of person continues to attack even when there is no reason? Or expects the board that they joined and benefited from, to now decide how the board should be run to meet their personal needs? None of this is helping any other Clusterhead. NONE. Our goal and function is to help people w
  10. spiny


    Brain, please PM me this info. Light, you too could let me know via PM.
  11. Jteira, agreed! It is a great read!
  12. Have you read this one Pebbles? https://www.inverse.com/article/41733-how-does-lsd-change-your-brain?fbclid=IwAR0GHbDHPB-QZrHiwuudZWz0XNN-CfRiwQgm9dvdmFo07imEe6yV90aJ9WE It was posted by Brandon on FB. I have yet to read it! I really have a lot of reading to catch up on!!! Thanks for the new links!
  13. Thanks for the links Brian and Pebbles! Citizen Science at work. Again. Nice!
  14. That ACE2 receptor. I have read a lot about it recently. And actually have Quercetin on hand due to COVID. This is an interesting find. Did you save the link to their work? You get relief with an O2 concentrator? That is great, because it seldom works for us and O2 in a tank is a lot more expensive. Two thumbs up! It is very nice to read of relief in the community!
  15. Welcome dehabel! What a lovely break you had!! I am sorry to read that it is over now. Barometric Pressure changes and for some, pollen as well, can bring them out to play. I was granted a 10 year hiatus that ended when I moved to the northern part of the state and into the mountains. Went from mild chronic to a normal, this really sucks CHer. With this site, I got it under control and life is pretty normal now. I moved 16 years ago and they come on time, every time if not prevented by me. Vitamin D3 Regimen has been a huge help for me and many others along with other methods that you wil
  16. With the O2 Cluster Mask, you will receive a mask and a tube. The tube is used by those who cannot take the pressure of the mask on their face during a hit. The tube, you stick in your mouth and inhale through your mouth and exhale through your mouth or nose. Just make sure you are inhaling strictly O2 - through the mask or tube. No outside air in at all! Pure O2 is the best way to kill a hit. That is why a concentrator does not work well. It is not pure O2.
  17. spiny


    That is a rolling tally for a certain period. So, if you are not posting very often, you don't get the likes and such that create the tally. Since your posts are well loved, you get a lot of 'likes' and stuff! Heal well, okay? You are having to deal with a lot!
  18. spiny


    Sorry Brain, what do you mean by 'bumped'?
  19. Please study those things before you call them pathetic. You are showing a bit of hard ignorance. Something that works and is legal and inexpensive is pathetic? No. It is a gift to sufferers. You evidently don't know much about the condition members of this board deal with. Lots of horrid pain? Yep, you get that. The fact that different solutions work for different people? You don't seem to grasp that part. Apology accepted. Now, please refrain from slamming other proven methods of treating CH. igdc started a valid thread about the flu and Ch. You have hijacked that thread. Is that
  20. Bee, I have removed the posts containing info not suitable for an open board. Please do not repeat those postings and videos on a General Board thread. If you have CH, we are here to help. If you have an agenda? We aren't interested.
  21. I have not had an issue with Asthma inhalers affecting my CH one way to the other. I still use Albuterol daily too.
  22. spiny


    Hugs Brain!!! Keep up the fight. You definitely know how to do that!!! Love you!
  23. Have the dentist give you medication with NO epinephrine in it!!! That is what will kick off your head. He might balk, but let him know what it can do to you!! My dentist fights me on it, so I only go when out of cycle and take Starbucks with me to drink at the first sign of a hit. ATB!
  24. You most certainly are still family here Seigfried! No need to bail on us.
  25. Well, that sucks Seigfried! Many say that Topamax makes them feel 'dopey'. That seems to be the most common complaint. And I am sure that is dose dependent. It has been nicknamed Dopeymax by some. It does help some CHer's. I was given a script for it years ago. One of the main side effects is weight loss. Being underweight at the time, I declined to take it. With most people at home, I suspect that 'dopey' might not be a problem. I do not recall how much I was to take per day now, sorry! Are you taking the full D3 Regimen or just D3? The full thing is what works for me.
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