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Showing content with the highest reputation on 01/08/2020 in all areas

  1. As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true. Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about. Psilo will be an official "med" within a few years, you can bet on it. The D3 regimen, which is supplements but not "meds," has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic. Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted. As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer. I think you might be in a situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle. This also doesn't make sense, at least to my way of thinking. Chronic is chronic. If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). Prednisolone is what prednisone is metabolized to by the liver. The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense. It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack. Many people use sugar-free versions of energy drinks with good effects. But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.) I have to wonder whether your O2 system is optimized. Do you have a flow rate of up to 25 litres per minute? Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH). Is it O2 from a cylinder or tank (not from a "concentrator")? Are you breathing deep, holding, and then expelling all the air you can from your lungs? Fully effective O2 is the key to better treatment of your condition, in my opinion. Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects. You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you. I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.
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  2. I don’t think it was the emgality, and since almost nobody is having this problem. I am inclined to say that I was not eating healthier. I will try the d3 again since it was helping me sleep. Once my stomach feels better, I will give it another try splitting the vitamins in the morning, afternoon and evening. I don’t want to give up on it because emgality is expensive and I still feel the headaches there while on emgality only. I will keep y’all posted.
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  3. @Banjer Taylor welcome to the forum! I too just recently joined in july. I was very fortunate to obtain oxygen pretty early on. It was very challenging. Not so much to get the script, but to find a place that actually provides the tanks. I got the proper mask from cluster02kit and it works very well. I’m still learning the proper breathing techniques and everything. I got on the D3 regimen a month after I started feeling terrible. I still get a lot of shaddow pain and I’m sure the D3 has helped tons. I take extra fish oil to help with the depression. My next step is to try busting with mm. I would read up on that if I were you. I would absolutely put all your focus on getting that oxygen. It’s imperative to abort the attacks. You’ll hear back from more experienced members soon. @Batch has all the answers for the D3 regimen. take care Kat
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