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Bohm

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  1. @regarain28 So according to Batch, what you are ultimately trying to achieve is getting your D3 above 80ng/ml or until you find more relief. It's important to get the levels checked. You can request the test through your doctor and you can also order testing kits online. You want to keep an eye on your calcium levels and keep them below 10 or so. The amount of D3 is going to be different for different people. It's great news about the drop in number and severity. I would say keep loading until you find some relief but get those levels checked.
  2. I just want to add that I hope this vitamin D revelation can eventually help researchers understand the pathology of Cluster Headache better in the future. Preliminary evidence suggests that vitamin D may have an impact on inflammatory mechanisms. The link between vitamin D deficiency and severe Covid symptoms is currently being investigated and some of the initial findings show a correlation between the inflammatory response to fighting an infection and the anti-inflammatory reset mechanism that occurs afterwards. Vitamin D may have an effect on T cells in this process. According to Dr. Mark Burish, whom many of us are familiar with, “based on previous research, vitamin D seems to block CGRP, a pain-signaling molecule that is commonly found in migraines and cluster headache, so we see a lot of promise with it.” I'm in good health outside of my Clusters and I had a nasty case of Covid. In bed for 17 days. I also had very low Vitamin D levels. Batch has also covered this in the past, but inflammation appears to be a major factor in CH. When I first busted at the beginning of this cycle, the slap backs were really bad. I've been on the Vitamin D regimen now for the last couple of months and just busted again on Saturday for the first time since July and the slap backs were minimal. I'm only speculating but can't help but wonder if there is a correlation. It could be I'm toward the end of the cycle so the slap backs weren't as severe but I can't help but wonder if there is a link. I don't think low vitamin D is the primary factor behind the etiology of CH but I think it's one more piece of the puzzle.
  3. @regarain28 I would say about 5 days in to the 140000 loading dose I started to feel real relief. It's important to do the cofactors too but you don't have to load on them, just the D3.
  4. Spiny, that's the regimen I followed. I was up to 140000 for a week. After a week, the clusters basically went away. The cycle was still there and I could feel what I can describe as a pin in my left cheek (left side this cycle) that told me there was a cluster underneath there. So the usual times of day I would normally get the cluster, I would feel that pin in my cheek. (Still do). When I dropped down to a maintenance dose of 10000/day, the clusters came back but at a Kip 1-3. I have settled in at 15000/day and it seems to be working pretty well. A couple of bad days here and there but mostly ok. So the D3 and cofactor regimen is a real thing and I think for many people, it can greatly increase their quality of life. Last time I checked after loading, my blood serum D3 was about 69. Even after a massive loading and calcium was in the normal. So I must have had drastically low levels before. So we have to play with the dose. I think everyone is a bit different.
  5. @BoscoPiko, When I started the D3 regimen many years ago for the first time, the magnesium was not friendly with my stomach. I spend an inordinate amount of time in the john. Batch recommends magnesium chloride, glycinate, oxide, citrate or malate but they are all just binders for magnesium. I understand that different binders may affect how well it's absorbed into the blood stream. Different types of magnesium binders have reportedly slightly different effects and some work as a strong laxative. I read that magnesium taurate seems to be well tolerated with digestion so that's what I went with. It's essentially magnesium with a taurine binder. I'm convinced the taurine that is in energy drinks such as 5 hour and redbull has some kind of effect on clusters and so that's another reason I went with it.
  6. Yup. The eye twitching started for me 4 or 5 years ago. I also use Magnesium Taurate as it seems to be easier on my stomach and it appears to make a difference. No eye tremors this cycle.
  7. Folks, Treating cluster headaches is just throwing darts for most of us. There aren't many double blind studies out there that have done much for us. There hasn't been the money or the interest for proper study of this condition. So we are left to our own advocacy and experimentation. I'm in the middle of a 5 month cycle. Batch's regimen has made a huge difference for me this time around. The loading piece was the key. I'm still in the cycle, it hasn't ended. But it's doing something. It's dropped the severity down to a Kipp 1 or 2 and that is cause for friggen celebration. And sometimes, that's all we can ask for. Maybe it won't work the next round, but I'm thankful for this round. And that is what is so valuable about Clusterbusters and this forum in particular. On a number of other forums I've been on, you aren't allowed to discuss alternate treatments or you get flagged. Which is ridiculous. We are all experimenting, trying our best to heal our suffering when so many of us have essentially given up on "traditional or accepted" treatments. With a disease like this, you've got to do whatever it takes. Thank God for Bob. Thank God for Batch. Thanks for everyone that refuses to give up or give in to cynicism and nihilism. I'm in my 40th year of this shit and if it wasn't for other clusterheads sharing their experimentation, successes and failures, I probably would have given up a long time ago and just checked out of this life. So, blessings to all who are willing to keep trying whatever.
  8. After 40 years of episodic clusters, its the O2 that has been the most consistent for me. My understanding is that concentrators dont provide 100 percent oxygen which is why the tanks with the cluster non rebreather are so important. Mild clusters can respond to as little as 6 liters per minute of 100 percent O2 if you are running low. But the nasty ones need the high flow. Always keep an E tank in your car during a cycle.
  9. On another note, how often should we be doing blood panels during the regimen? Obviously baseline and then like 30 days in. But what about after that? It would be a struggle for my insurance to grant me too many I think. I can order the at home 25 OH D for about 50 bucks but that won't include calcium levels which is obviously a really important one. If I'm doing this year round, what is reasonable?
  10. Has anyone experienced difficulty getting O2 lately because of the rise in hospitalizations due to the pandemic? My provider Apria usually gives me as many E cylinders as I ask for but now they are limiting the amount requested. I was told I could request up to 10 but they only delivered 4. It took a lot of pleading to get 5 more delivered. Makes me a bit nervous. It's nothing to go through a tank a day and sometimes up to 2 a day. Might have to request an M tank. Wasn't anticipating anxiety over O2 supply. This is Colorado where we still have plenty of ICU beds. Wondering what the rest of the rest of the country and other parts of the world are reporting.
  11. I'm absolutely blown away by this video. I watched it all the way through and while a lot of it was beyond my understanding of biochemistry, I understood enough to get excited about trying the regimen again. I did try the regimen about 6 years ago and while I believe it helped back then, I did not load up on D3 in the beginning and started well into my cluster cycle. It sounds like the loading is the pivotal piece I may have been missing. So, I'm 10 weeks into my current cycle (a particularly nasty one) and I am going to try preloading at the recommended levels and report back to this thread in a couple of weeks. Thanks Craig and Batch for this really well put together source of information and explanation. Incredible detail. I run one of the cluster support groups for clusterbusters and I am going to tell all my folks to watch this.
  12. I was pleasantly surprised to see the conference coming to Denver this year. I will be there. First timer. I have lived in Denver for 25 years and have had cluster headaches for over 35 years and I've never thought that altitude makes them worse. Just stay away from Pikes Peak.
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