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Everything posted by spiny

  1. Hi Celtic! Welcome to the club! Have you read the blue banner at the top of this page? It will give you a lot of basic info. I would not worry about the O2 usage. The main thing is to have your system optimized with high flow pure O2 at 15 to 25LPM and a non-rebreather mask. The Cluster mask is what most of us use. You have to work at your breathing, not just breathe. As in exhale with force, till you wheeze a bit, then inhale deeply. hold a few seconds and repeat. You can begin this on your way to the O2. With nocturnal hits, you want to get there ASAP too. You will find your own pace and way for each hit. It likely will not be the same for each, so try different paces and when one begins to ease the pain, stick with that method for that hit. May will down a caffeine drink with the O2 or just prior. As in hit the fridge, grab it and go. You can chug as you go. You must stay on about 5 or 10 minutes after all the pain is gone. Otherwise, you risk the hit returning. 'Post' breathing is very important. For daytime hits, do the same. On occasion, you may find that the caffeine is sufficient and O2 is not needed. Pred is a bridging med that you take for a week or 3 and your Verap kicks in for lasting relief. Pred is not a safe drug to take for a long time. It causes your hips and maybe shoulders to lose the ball part of the joint - it dies. Then you need a hip replacement. So, use, but sparingly. Verapamil is one that CHers tend to take very high doses of compared to other patients. As in up to about 960mg/day. Some can't take those levels of it due to low blood pressure. It is great for many when it works. For shadows, use ginger: tea, candy, etc. It kills them. As will caffeine. But caffeine gets tiring. There is a lot more to share, but this will get you going!! ATB !
  2. Many have observed that heavy pollen can bring on or extend a cycle it seems. In addition, many can't take certain odors without getting hit: gasoline, paint products, perfumes. It depends on the CHer. So, I would say yes, there is a good chance that the environment is the a big part of the problem for you currently.
  3. Oh, I'm a girl when it comes to coffee. Leave out the sugar if need be, but I want my cream in there!!
  4. Bosco, I just had my non-CH side spike today. I was a the dermatologists when it happened and it spooked the heck out of me!! What causes it? I don't know. But I have had them before and my son gets them , but no CH. Hopefully that is the end of it! The Equinox is my cycle start time, so yea, I am a bit wigged out. I took caffeine for it. Might not be the best choice for all, but worked for me. ATB!!!
  5. Hey Tony! What did your most recent blood test tell you? With COVID, many have not gotten their 'normal' amount of sun and are suffering from low levels again. Not sure about Finland, but here, many are needing to up the D. We have been hiding a lot and not going on normal vacations and getting that sunshine in addition to our supplements. Perhaps that is what you are experiencing? I have been able to stay at the same level of D, but I do get out in the sun for gardening a good bit. That does help. My cycle is from September 21st to March 21st. Even with a ton of sun exposure! I had my levels tested for many years in August, only to find them at about 60 and my head kicking in to boot. The D3 Regimen was my savior too and it has prevented years of cycles now for me. That is horrid that Child Protection Services are after you!!! Glare...... Batch does have a path to trials here now. Not sure when they will start though. Soon we all hope!!! Hopefully he will join the conversation soon!! Batch? XXX? Hello out there!! Congratulations on your son!! You must be thrilled!!!
  6. I have heard of a few who used them to get to their real O2!!! You can accomplish the same thing with deep breathing and forceful exhale to ditch the CO2 as you hoof it to the real tank.
  7. Yes, getting pain free will make your brain happy. And plenty angry with the ones who were supposed to fix it and failed miserably!! Why? Because they DID NOT LISTEN!! Venting is certainly understood here!! We all get really frustrated with lousy doctors who insist that we have something we don't and refuse to listen to what we are saying. Women in particular face this wall of ignorance. Some fools still think that women can't take pain the way that men can and are just wimps!!! Well, let them pop out a 7 lb'er and say that. Biological clock refers to the natural wake/sleep cycles of our bodies and the hormones released at certain times during that 24 hour cycle. So, you get some that are released when you sleep and some when you are awake. Ergo, the timing of your sleep should be pretty regular to help regulate those hormones. I am so happy to read that the D3 is helping!! It really can be amazing. Just vitamins to get rid of this shite? Yes please! Keep taking it! Have you had your labs yet to see where your D is currently? You might need a bit more to get to home base!!
  8. 'I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.' Agreed, we all need at least one of these!!!! Bosco, we learn to laugh about it over time I think. Sort of laugh or cry? I'll take laugh any day. Let the anger about it out, scream to the heavens and then get on with life. I suspect it teaches us to value good times a lot more than many do and that is a gift to be savored. Fun Times made a great suggestion regarding RC seeds too!!!
  9. I find the denial about hormones confusing! In the 70's, if you had migraines, they would not give you B.C. pills! Why? Because they made the migraines worse. Nor would they mention CH if you were female. I am pretty confident that in the future, if they diagnose correctly, migraines and clusters will be equally split between the sexes. My son and daughter have migraines and I have CH. Which was undiagnosed for decades. Like from age 22 to age 58. At 58, I drug my husband to the Neuro with me so he would shut up about migraines! Once my husband told him 'I am sick of losing my wife at 8 o'clock every night!', he was willing to entertain the thought that I might have CH. They did come like clockwork after all. 'Headaches should not have gender roles…….the beast is bad enough!' AGREED!
  10. The K2 puts the calcium into your bones, not your bloodstream as I understand it. That is where it needs to be. You know, strong bones!!
  11. You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them!
  12. Hi Shaun and welcome. Sorry to read of your new cycle. Please, read and ask questions! The blue banner at the top of the page is a great place to begin. Start a thread and share your CH journey when you are ready. ATB!
  13. I would say you are correct on your question on the Methyl Folate. I do not take it. I would definitely give it a good try. Like a month at least. It will likely be of help. Anytime I feel a shadow, low level pain, I hit the caffeine. Nine pm? Yep and no problem for me to sleep after either. Actually many CHers hit it in the middle of the night to help keep the pain at a more manageable level when they are headed to the O2 and go right back to sleep. So, you might try that when you feel your head ramping up and see if it helps to stop the increase in pain. Kat is using it for her head too, so that speaks to treating 'other' forms of head pain. I hate calling them headaches!! People with migraines use it too. Just get your labs done as stated above. If you have to wait on the labs, begin the vitamins and get tested as soon as possible. ATB!
  14. Tony, please be sure that he is doing his 'post' breathing for five minutes after the pain has stopped! If not, it comes right back for most and we all want to abandon ship when the pain is gone. DON'T!!! It will return with a vengeance! And that ups the number of hits per day! His D levels are quite low! 85nmol/L is about 34 ng/ml. We want it to be above 80ng/ml or 85ng/ml. So, more loading is needed to get there. Yes, I agree that he needs a new D3 test! He also likely needs more D3. On the Melatonin, he can go up to 25mg. I used to go up to 30mg personally. I did not take it all at once, but in two or three doses as I was up with a hit at night. For me, Benadryl is more effective, but I used the heck out of Melatonin for years too. Is he eating 'clean' as they say? No MSG, booze, other stuff that kicks off the CH, right? Some give up chocolate and a lot of foods with a cycle and benefit from it according to them. I can't do booze or MSG. Bacon is still on the menu here. But others delete it during a cycle. Doc has a point too. Hopefully you can check into that bit as well. ATB and thank you for your tireless work for CHers over there!
  15. We are glad that you did too!!! Yes, I suggest the D3 Regimen and loading to begin, due to COVID. Be sure to take the other co-factors with it!! Benadryl helps many of us with CH too. It is the one that passes the brain/blood barrier and so makes you sleepy. Crossing is why it is helpful to us - it can get in there!! And allergies are bad for CH - Histamine. Are you trying some caffeine at the beginning of a hit? What are you currently doing for your CH? O2 is your very best friend now, so I really hope that you get it at home! I would hammer the Neuro for an O2 script at least. If he gives you any grief over it, let him know that it is the BEST abortive out there!! You need it!
  16. Hi Ganuchi and welcome. I cannot personally answer your question, as I have not had COVID. How long are your hits normally? Are you chronic or episodic? Did the O2 help? Are you still in pain now? It just seems like a really long headache! And likely a personal high in CH for you! Not good.
  17. Venting is most certainly allowed and very well understood here! Only having part of the picture is distressing I am sure. Lack of answers makes me crazy! This is why the units it was measured in are important:The two most commonly reported units of measurement are ng/mL and nmol/L, where 1 ng/mL = 2.496 nmol/L. As you can see, if using nmol/L, the number is 2.5 times as high as if you used ng/ml. Mg/ml is NOT used for this. It is nanograms. So, I am wondering if the units are wrong? Does your copy of your lab work show the unit measure? This is super frustrating. I do not find the D that you are getting in the ampules listed for US consumption, so you are elsewhere? I think that in the UK, it has to be prescription. I had gall bladder surgery about 3 years ago now. It has caused me no issues with the regimen. I am a bit careful not to eat fatty food often, but I have had no issues to date. And my D3 lab came back with a 2 point difference! That is all. My other numbers have not changed. So, ticking along just fine minus the thing! I really hope that you do just as well too. That had to be rough with the surgery and infection too! I hope your recovery goes smoothly! I suggest that you get or look at your hard copy of your lab work. If she is correct and it is that high and measured in ng/ml, you do need to lower it. If another unit, I doubt it. How is your head?
  18. I hope that you find the relief that many of us have found with this regimen!!
  19. Let us know Kat! MSG is a problem for some.
  20. To me, it sounds like you are getting shadows from the booze. And just shadows! If it were me, I would think that the busts had worked, but my biggest trigger was still active. And to me, it sounds like your busts are keeping you out of hell right now, but another one or two may be needed to be able to drink. If it is the 'normal' time for your cycle, then upping your D3 is a very good idea. A bit of a buffer is great way to go! Sorry that you got the 'news' on aging out, but happy that you are getting relief!!
  21. Don't short yourself! You know a ton about CH, if that is what you are referring to. I too read 'stuff' and tend to take it at face value. I suppose that is because we have to trust the 'experts' to some degree because, well, they are the experts! Unless it is important to me personally, then I research a lot of papers. You do the same likely. Then you spot the misses and inaccuracy of many of the papers out there!!! The more you know, the more you see that they don't know. I agree. He left out a lot! He had not experienced it likely, nor researched it. It seems mostly that he was recounting his experience, not the community experience. So, not well researched in my book. But, exposure is good.
  22. 12 days of loading and you were up to 112ng/ml. So, at that point you could reduce it to 10,000/day for maintenance. You would not continue at the 50k/day dose. Were you taking the Benadryl with it? That can make a big difference for some. Intestinal distress would drive me to drop them too!!!
  23. Thanks Denny!! I will have to watch the remainder later, but what I have seen is terrific! Thanks to Craig and Batch!!! We needed this.
  24. Thanks. I agree, He seems rather empty of knowledge to a great degree. Mentions D3, but has he tried it? O2. No mention. It is nice to have a article out there though, so I am grateful.
  25. Hi Cromestar! I just wanted to be sure that you are taking the co-factors with the D3. They are very important and you need the lot for it to work well. You need the K2, Omega Three, calcium, etc. that go with it. Can you fill us in which ones you are taking? Pepcid is for excess stomach acid. It is given here for reducing the acid release when eating that causes some people pain. So, anti-acid, not antihistamine. Perhaps one of the other meds given is prone to causing tummy issues? It is over the counter here now. As is Benadryl. It is disturbing to see all the people who are suffering post Covid!!!
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