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Just checking in. - 5 years cluster free after being chronic 8-10 daily and seconds away from ending it all. This site saved my life and I'm grateful. - took 17 tries of MM dosing every 5 days to finally get relief. ( learned about dosing here) -low histamine diet . I literally don't eat any foods with high histamines. Stopped eating meat as well. -stopped drinking alcohol (major trigger) - lost a lot of weight Initially but I have found foods I can eat to maintain a healthy diet -still maintenance dose at least 1-2 times a month. -if my d3 gets low or I don't maintenance dose I feel signs of pain. (Sickness, allergy season) - I realize food is a major trigger so I'm very cautious and eat very limited items which can be very very difficult at times but I'll rather eat blackberries for example then have a cluster any day. other triggers include - smoke of any kind (this sucks because everyone smokes and this includes hookah smoke) - extreme heat overall, the d3 regimen, avoiding histamines, dosing consistently and avoiding triggers have helped me be cluster free. Ironically, MM helped me with bipolar disorder. I stopped taking all of my bipolar meds. They're truly magic. Am I cured, ABSOLUTELY NOT but am I able to live a normal pain free life yes. At times I am very isolated from the world as I fear being triggered which sometimes is difficult but the fact I can be father to my kids is more important . Clusters have taught me to appreciate everything. Truly living between the headaches. I don't take a day for granted and wanted to send hope to anyone who may need it. -

I too have heard of people trying low flow O2 while sleeping with mixed results. I recall one person stating that just a plain CPAP seems to help with night attacks. Combining the 2 is an interesting idea but I can offer no personal experience, nor can I recall anyone trying such a setup. It would seem that using a concentrator AND combining the room air flow from the CPAP wouldn't give the user anywhere close to the pure O2 we recommend for an abort but as a preventative....I guess it could help? The setup would definitely increase the level of O2 per breath verses room air. Perhaps that might make a difference for some? Please update us as to its long-term effectiveness. This is worth watching.

This is what Batch has written about testing: "You will need to see your PCP/GP for lab assays of your serum 25(OH)D3, calcium and PTH. Adjust the vitamin D3 dose to keep the PTH serm concentration between 20 and 14 pg/mL and still keep the calcium serum concentration within its normal reference range to obtain the maximum therapeutic effect. Once at a stable vitamin D3 dose, annual labs are sufficient. It’s important to drink 2.5 liters of water during the 24 hours prior to the blood draw for your labs. Once you’ve established a vitamin D3 maintenance dose that keeps you CH pain-free, an annual set of assays is sufficient." There is more information about why these tests matter at Cluster and Migraine headache treatment protocol - Sept 2023 | VitaminDWiki

I have had ECH for 12 years and each episode seems a new item. Since sleeping seems to bring on the curse, the on and off of high flow 15lpm was making sleep impossible for more than 90 min. This season my PCP recommended to “bleed” oxygen from my concentrator into the cpap that I started using last year. It has water in it, which adds humidity, a good seal on nostrils and lowering flow from 15 down to 8 seems to work for me. Any others out there doing this ?

Y Yes ...get your calcium checked

I recall at least one other report from pretty way back in the day of the successful use of continuous low flow oxygen while sleeping (I'm pretty sure it was with a cannula, to avoid suffocation type risks). With your cpap, you have a different, and also interesting thing going on there. I'm tempted to tag @Racer1_NC on this for any observations, since he is what I would consider a genuine O2 guru.

I am sorry this has happened to you. I very much appreciate your post ! I have been on the D and cofactors for awhile but have only been getting my D levels checked. To be clear I need to get D levels and Calcium levels checked to avoid problems?

the anti-inflammatory vitamin D3 regimen has worked very well for people with chronic and episodic CH (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and "busting" (using psychedelics), when done properly (not with microdoses and generally five days apart, not three or four), has also benefitted many to prevent cycles/attacks and provide an end to episodic cycles or remission from chronic attacks. you don't mention oxygen in your posts, but it is a very effective abortive for chronic and episodic folks, and so is DMT. None of these things (D3, oxygen, or DMT) blocks busting, and there are other CH meds that don't block busting. again -- may you never need any of this information, and may your discovery benefit many others.