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ClusterBusters

spiny

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Everything posted by spiny

  1. spiny

    Quercetin! Very effective treatment for me!

    Thanks for the links Brian and Pebbles! Citizen Science at work. Again. Nice!
  2. spiny

    Quercetin! Very effective treatment for me!

    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!
  3. 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 will read about on this board. I have yet to meet a person who actually 'aged out' as they like to call it and I know several over 70 years old. I strongly suggest you check out the D3 Regimen. It can offer great relief and is plain old good for you vitamins. Are you on any meds for yours now? It is suggested to read a bit on here to get the most benefit from the Site. You can key in what you want to look at in the space by the magnifying glass icon at the top right of the page. Were you chronic or episodic? Did you get O2 and do you still have the rig? It can be a big help to slam down an energy drink or shot at the first sign of a hit. I use iced coffee most times. Ask a lot of questions if you want. We encourage that and reading too. You will learn a lot, very quickly. ATB!
  4. spiny

    Smile

    Brain, he is not 'bumping' this thread, he is hijacking it. The junk is deleted now. Smile!
  5. spiny

    Anyone else having this oxygen issue?

    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.
  6. spiny

    BOF

    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!
  7. spiny

    BOF

    Sorry Brain, what do you mean by 'bumped'?
  8. spiny

    Influenza and CH

    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 a help for a person suffering? There are plenty of places that would be quite happy to discuss your one topic. You might try posting there.
  9. spiny

    Influenza and CH

    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.
  10. spiny

    Asthma inhalers

    I have not had an issue with Asthma inhalers affecting my CH one way to the other. I still use Albuterol daily too.
  11. spiny

    BOF

    Hugs Brain!!! Keep up the fight. You definitely know how to do that!!! Love you!
  12. spiny

    Wisdom tooth removal

    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!
  13. You most certainly are still family here Seigfried! No need to bail on us.
  14. 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.
  15. spiny

    Pregnant and new CH episode

    Happy Dance!! That is such great news!
  16. spiny

    Pregnant and new CH episode

    I was allowed Benadryl when I was pregnant. Getting your O2 optimized will be awesome for you most likely. A bit of work to abort, but very much worth the effort! And a great way to go when pregnant. CHF has covered that well, as he is prone to do! ATB and welcome to our community!
  17. Keep up the excellent work Tony!!! <3
  18. spiny

    Hey Batch!!!

    Could you please post the info regarding the Wiki link to your D3 vitamin regimen here? I am covered up at home and want to send it to my Neuros' nurse. The technical stuff should help with non-believers! Many thanks!
  19. Thank you Tony! I look forward to more!!!
  20. Well, that negates my existence! I had 'mild' CH for years in my 20's. On time every time, but never the level of hits I suffered decades later. Take what she offers if you want to take it. Or stick it in a drawer. See the neuro and get the proper attention that you should be receiving now! Hugs!
  21. Here ls a method I used with my Neuro. He always has me seated toward the window light and then does the pupil test. Well, they contract at about the same rate. Two years ago, I turned off his lights and told him to look at my pupils. The CH side does not dilate properly in low light. And it takes quite a while to return to almost normal post cycle. He was giving me a bit of a hard time and wanting to treat for migraines. That changed his mind. The other pupil was huge and the CH one was 1/2 the size of the normal one. 'Oh, you do have Horners!' Ah, yes I do. My eye does not droop because I exercised the muscles to hold it open so much one year that I now have brow wrinkles on that side only and the eyelid is more wide open than the other one! It had gotten so bad that I could not read without killing my neck looking down. So, it became a daily project. He also was running with the normal runny eye, runny nose bit. Well, now I seldom get that, but the CH side of my head sweats profusely during a hit. Try it at home first. If you are still having CH, it should show up that way. It beats me how they just look at contraction and not expansion, but they do. And there is the old Nitroglycerin trick. They use it sublingual for Angina. But, for a CHer, it will bring on a hit. Not a migraine, a cluster. Painful way to go, but provides proof. She needs to rethink or catch up on her CH knowledge!!!!
  22. spiny

    Hey Batch!!!

    Thank you very much!!
  23. spiny

    It's been a while...

    Hello Greeneyes! Long time no see. Verap lowers your blood pressure. Have you checked yours since the increase in medication? It may be getting lower than is comfortable for you. You will adapt to a certain degree, it may be a limiting factor in how much Verap you can take. Low blood pressure makes me tired. My max on Verap was 240mg/day. Being nocturnal, I took mine in the afternoon and twice through the evening and night. It seemed to help with the low energy caused by the low pressure. The Venlafaxine is for depression, anxiety, and panic disorders. And it can have a side affect of tiredness and sleepiness. Also it can cause Serotonin Syndrome when mixed with some drugs. Verap was not listed and surely your doctor is aware of this possibility. Glad that you are in a better place than several years ago!!!
  24. spiny

    dental work triggers cluster?

    Yep. Talk to the doctor doing the anesthesia. I have now done that for three surgeries. They did not use Epi in the mix and I had my mask and 15lpm running and handed to me first thing. Once it was needed right then too! They now have it in my record in two places and I like that. They may make an odd face when you tell them to NOT give you any pain meds, just O2 please. Not what they expect to hear at all.
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