Ilya K Posted October 17, 2019 Share Posted October 17, 2019 Hey Everyone, I'm pretty new to the community - started getting clusters last year, early September. And as all of you, thought they were sinus-related or something else so I had an MRI and CT scan, and everything came back normal. Last year my cycle started and ended earlier. This year it came back around September 22nd. So I started off by seeing my PC doctor. I happened to get my 25 (OH) D tested and it was 23.6 ng/ml. After that I went to see a few neurologists, some thought it was a migraine but most thought it was cluster headaches due to the cyclical nature of the headaches, the location of the pain, and the fact that it was unilateral 95% of the time. I did further research and started reading about the side-effects of CGRPS, Verapamil and other preventative measures and realized those were not for me. I was also placed on a 5 day steroid course which reduced the severity of the attacks and the frequency, but nonetheless they are still happening. My research further lead me to try the D3 loading regimen, with the approval of a few doctors of course. And this is what I have done so far: 10/8/19 - 10/14/19: I did 10k IUs of the D3 along with all the cofactors 10/15/19: I did 20k IUs of the D3 along with all the cofactors 10/16/19: 50k IUs along with all the cofactors 10/17/19: 20k IUs along with all the cofactors I know that this isn't exactly how the loading schedule should be done, but I was scared of taking everything at once so fast. Lately I have been doing the 20k IUs/day and I have been feeling a bit nauseated and dehydrated, so my questions are: How can I reduce this nauseating and dehydrated feeling? Why are the cofactors all necessary even during maintenance periods? Has anyone tried going off of them to any success? Are they purely for absorption? If someone could get Batch involved, he has been a lifesaver thus far and his input would be invaluable. Vitamins taken are: Kirkland Multimitamin, Pure D3 (5000 IU), Magnesium Calcium & Zinc from Walgreen, and a fish oil supplement from Trader Joes Best, Ilya Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted October 17, 2019 Share Posted October 17, 2019 Personally I found the fish oil to generate nausea. The volume of pills may be contributing to the nausea as well rather than the specific substance. Try dividing the doses instead of taking all at once to see what you might be sensitive to. I would defer to Batch for final suggestions as this is his baby. 1 Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 17, 2019 Author Share Posted October 17, 2019 31 minutes ago, Pebblesthecorgi said: Personally I found the fish oil to generate nausea. The volume of pills may be contributing to the nausea as well rather than the specific substance. Try dividing the doses instead of taking all at once to see what you might be sensitive to. I would defer to Batch for final suggestions as this is his baby. Good to know, I may give that a shot. What did you do to mitigate the nausea with the fish oil? Also I should mention I have allergies, but have been doing the immunotherapy shots for over a year so I don’t know if those are a factor. I’ve read Batch’s responses about taking Benadryl to prevent the histamine reaction. Does he need to be tagged or something to respond? Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted October 17, 2019 Share Posted October 17, 2019 I dont take the fish oil, Just D3 and Vik K part. I do use benadryl 50 mg at night. I imagine Batch gets pounded with questions and comments. The summary of his protocol is available as a pinned post. The fish oil can cause some reflux so taking it with some food may help. Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 Where is the pinned post? Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 18, 2019 Share Posted October 18, 2019 8 hours ago, Ilya K said: Does [Batch] need to be tagged or something to respond? Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you. The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people 1 Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 28 minutes ago, CHfather said: Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you. The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people Just tried sending him a PM to the error message "Batch can not receive messages". Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 18, 2019 Share Posted October 18, 2019 Hmmm. I also just sent him a message, but didn't receive that error message. I'll PM you his email address. I hope you will reach him -- and I hope he's okay. Quote Link to comment Share on other sites More sharing options...
kat_92 Posted October 18, 2019 Share Posted October 18, 2019 I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck! 1 Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 10 hours ago, kat_92 said: I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck! Awesome - thanks for the tip. I'll try it today. Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 Ilya the vitamins will be a big help. As you know, your D is in the trash and really needs to come up! And I share the Equinox date with you! Many start a cycle at that time of year. Sucks, but at least you have an idea of when it is coming and can prepare to battle if needed! Let us know how breaking them up worked for you! Oh, are you using 'burpless' fish oil? I could not stand the other one. Going 'burpless' helped me a lot. I'll see if I can reach Batch too. Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 20 minutes ago, spiny said: Ilya the vitamins will be a big help. As you know, your D is in the trash and really needs to come up! And I share the Equinox date with you! Many start a cycle at that time of year. Sucks, but at least you have an idea of when it is coming and can prepare to battle if needed! Let us know how breaking them up worked for you! Oh, are you using 'burpless' fish oil? I could not stand the other one. Going 'burpless' helped me a lot. I'll see if I can reach Batch too. Thank you Spiny, and no I am not using the ‘burpless’ one. I think I may actually be getting nauseous from the multivitamin, so it’s going to be a little bit of trial and error to figure that out. Today, I took 10000IUs of the D3, Magnesium and the multivitamin with breakfast and only had about 10 mins of nausea. Going to take the rest with dinner and see if the fish oil is the culprit. Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 Sounds like a good plan you have. I have had and read of people having a reaction to the fillers in some meds. Like a name brand will have Y fillers and the generic will have X fillers. So, some people can take one and not the other. So, you might consider a different multi. Just a thought if changing the fish oil does not solve the issue. Are you taking the Benadryl? Batch is indeed not getting PM's at this point. Not sure why. But, he is very devoted to helping all and will show up when he is available. He never has let anyone down who PMed him to my knowledge. But at the moment that is not an available route to follow. We will wait to see if CHF's mail got to Batch. Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 6 minutes ago, spiny said: Sounds like a good plan you have. I have had and read of people having a reaction to the fillers in some meds. Like a name brand will have Y fillers and the generic will have X fillers. So, some people can take one and not the other. So, you might consider a different multi. Just a thought if changing the fish oil does not solve the issue. Are you taking the Benadryl? Batch is indeed not getting PM's at this point. Not sure why. But, he is very devoted to helping all and will show up when he is available. He never has let anyone down who PMed him to my knowledge. But at the moment that is not an available route to follow. We will wait to see if CHF's mail got to Batch. Appreciate the quick feedback. Are all multivitamins created equal? Meaning if I buy a different brand or a gummy will it have everything necessary that the Kirkland one does? Any regarding the Benadryl - do you think it's necessary if I'm not having any of my allergy symptoms? I've been on the allergy shots for over a year so I don't know if that's contributing or not. Also is it normal to feel a sensation in my nostril sometimes throughout the day? Like it feels tingly or just abnormal. Is that still part of the trigeminal nerve maybe? Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 Yes, it is. If you look it up, that nerve covers half your face and 1/4 of your head. That includes everything on your face and those teeth and sinuses. It even includes the hair on your head in my experience. Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 18, 2019 Share Posted October 18, 2019 38 minutes ago, spiny said: We will wait to see if CHF's mail got to Batch. Actually, my PM got to him! Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 Excellent CHF. Not working on the board for me either! Did he get an email or PM from here? I'll pm our wonderful IT wizard about it. Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 Batch does suggest separating the Calcium from the Verap if you are taking it. Offset to prevent issues as stated. And that is the likely reason for using K2, not K! You copied this from the site Batch has? Can you post the link to that? Thanks Brain!!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 18, 2019 Share Posted October 18, 2019 5 minutes ago, spiny said: Did he get an email or PM from here? Yes, from here. And he responded by PM to me here. I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts. (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin. A very old-time TV reference.) 3 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 I loved that show!!! I did not remember his characters name. Good catch!! How about My Favorite Martian? Remember that one? 1 Quote Link to comment Share on other sites More sharing options...
Into Light Posted October 18, 2019 Share Posted October 18, 2019 Ah for the days when i was almost innocent and life was broadcast in b&w. Remember the “off-the-air” bars? Quote Link to comment Share on other sites More sharing options...
spiny Posted October 18, 2019 Share Posted October 18, 2019 And the Target Bulls Eye? Seems like the remaining one used a peacock. Yes, I used to sit and stare at the symbols on Saturday morning waiting for the cartoons to begin! Here's a bad one. I also remember waiting at night for programming to start! We watched one that panned in thru a keyhole. That was pre Mickey Mouse Club days for sure! It began programming about 6pm I think. And went off about 10pm. Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 2 hours ago, CHfather said: Yes, from here. And he responded by PM to me here. I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts. (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin. A very old-time TV reference.) Haha - yeah, I am Russian, so that would be why the names are so similar Quote Link to comment Share on other sites More sharing options...
Ilya K Posted October 18, 2019 Author Share Posted October 18, 2019 Hey Guys, Typically how long till the Vitamin regimen busts the cycle? I have been on it for almost 10 days (granted at the beginning I did not take as much D3 just to see how my body would react). The pain is a pretty consistent 2 throughout the day, getting to at most maybe a 3 around 11. Is this normal? It's like I'm always aware of the area near my right eye and eyebrow. P.S. It doesn't seem like I've ever had clusters at night and sometime they vary time-wise. Also - people describe them as the worst pain humanly possible - I don't think mine have ever gotten to that extent. I'm worried it may be something else, but the symptoms align with clusters. The fact that the headache isn't year-round, is unilateral (95% of the time), and it focused around the right sinus/right eye area. MRI & CT also came back negative. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted October 18, 2019 Share Posted October 18, 2019 the pain will vary from one to another we all tolerate pain different so the fact that you do not think yours are as bad does not mean they are not clusters. Just hope that they never get that bad. After I started busting and got on the D3 my pain levels dropped and the length they last is shorter but they are still clusters and still fun to deal with. Quote Link to comment Share on other sites More sharing options...
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