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    • StegZac

      Welcome   01/25/2017

      Welcome to the upgraded ClusterBusters forum.  Please make sure that you login either with your email address or your display name (the name that appears next to each of your posts).   If you have any issues, please email help@clusterbusters.org and we'll get it resolved.

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  1. Yesterday
  2. Hey Bearcat, I'll echo the welcome to Clusterbusters and add, welcome to the anti-inflammatory regimen. You're off to a good start. Be sure to start the 12-Day vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days. This is the fastest way to elevate your serum 25(OH)D into the therapeutic range of 80 to 100 ng/mL which is the therapeutic range for episodic and chronic CHers to experience a favorable response to this regimen. I realize that 600,000 IU sounds like a lot of vitamin D3 for people new to vitamin D3 therapy. That said, there are several RCTs where a single oral dose of 600,000 IU, (1.5 mg) of vitamin D3 was given with no adverse reactions and all study participants experienced an average gain in 25(OH)D serum concentration of 60 ng/mL above their starting serum concentration in 3 days. If you've a copy of the latest treatment protocol for this regimen, you should have a copy of the graphic below illustrating the favorable response times by day after starting this regimen. It will give you an idea when to expect this regimen will start working to prevent your CH. As you can see, the majority of CHers starting this regimen respond in the first week after starting this regimen and better than 75% respond within the first two weeks. At this point be sure to take all the supplements listed in the protocol and drink at least 2.5 liters of water a day. Having developed this regimen in October of 2010, I usually suggest that all the supplements be taken with the largest meal of the day to ensure maximum vitamin D3 absorption. However, as it takes roughly six hours for oral vitamin D3 to reach a maximum serum concentration or (Tmax ), It may be beneficial to take the vitamin D3 around 11 AM to noon in order to ensure the vitamin D3 serum concentration is highest and had time to reach target neurons within the trigeminal ganglia in sufficient concentration to have a therapeutic effect during the 7 to 9 PM time frame of your first CH hit of the evening. Over the last year, several CHers who didn't respond to this regimen during the first week found that taking 25 mg of Benadryl (Diphenhydramine HCL) four times a day and 50 mg at bedtime for a week to ten days, experienced a favorable response with a significant reduction in the frequency of their CH from an average of 3 CH per 24 hours down to 3 or 4 CH/week or a complete cessation of CH symptoms. The rationale for taking this first-generation antihistamine centers on its capacity to cross the blood brain barrier to block histamine H1 receptors in neurons within the trigeminal ganglia and the fact that we're constantly exposed to allergens. Although most people say they don't have allergies, they can be subclinical with no outward or obvious symptoms, but they're still there, pumping out enough histamine for CHers to react with onerous CH. Accordingly, if you've not experienced a significant reduction in the frequency, severity or duration of your CH within 4 to 5 days after starting this regimen, it may be helpful to start the week to 10-day course of Benadryl. Again, you're off to a good start in gaining control over your CH. Stick with this regimen and I'm confident you'll be happy you did. Take care and please keep us posted. V/R, Batch
  3. G'afternoon Bearcat I'll add my welcome to the community and sorry you had the need to join the club that nobody wants to belong to!! As CHf has already stated, expand a bit on what you've tried in the past and/or what you're using currently so well have a better idea on what to suggest....to reiterate his comments, your primary objective should be O2 and the D3 regimen!! I'm going to move your thread to the "General" section of the forum where it will get more attention as they tend to get buried and missed here in the files section!! Dallas Denny
  4. Last week
  5. bearcat2011, welcome to the club Like CHFather already said, first you/we have to check your basic fight with the beast in order to give some release to your pain. Following CHFathers tips & suggestions should kick you out of the most severe situations. Important also do you have any help from a Neuro or other medical staff? If so what did they do for you? One important point I always recommend is: Read and read again as much as you can from this side as you will get valuable information not jet know to you. As you already are on the D3 regime you may already have done a lot of reading... Never the less we see people coming in and missing some of the first and eventually important stuff like Verapamil&O2 usage and dosing like CHFather already mentioned. Further more you may already have seen a lot of Information on Supporters like your helping wife. So you should explain your basics more in detail AND read as much you can from this valuable site. Most likely you will find some more relief and even pain free time doing so.
  6. bearcat', welcome and, as we say, very sorry you have to be here. Can you tell us what you're currently doing for your CH, and what you've tried in the past? Be as specific as you can (for example, not just "tried verapamil and it didn't help," but how much verapamil, if you remember). The most useless information is "tried everything." Oxygen is your #1 priority, if you don't have it. Are you using the nonpharmaceutical things that can sometimes quickly abort an attack, or at least make it less bad? An energy shot (such as 5-Hour Energy) drunk down quickly at the first sign of an attack helps many/most. For many/most, it doesn't keep them awake if they take it during the night. Something cold to create "brain freeze" can help, too, such as drinking ice water through a straw aimed at the roof of your mouth on the CH side, or even holding a lump of frozen juice concentrate against the roof of your mouth with your tongue. Melatonin at night helps some/many. You could start at about 9 mg and work up to a satisfactory dose. Since many wind up in the 20-plus mg level, you could start higher than 9mg, but it's hard to know how groggy you might feel in the morning. Benadryl multiple times during the day is also suggested. You might be doing that as part of the D3 regimen -- I think Batch recommends something like 25mg three times a day and 50 mg at bedtime. Of course, don't take both Benadryl and melatonin at bedtime. If you're taking verapamil, be sure that you take that at least 8 hours apart from when you take the calcium part of the D3 regimen.
  7. I have been suffering from CH off and on for the past 7 years. I am currently in a phase where I get hit every single night between 7-9 pm, and again at some point during the night(typically around 3 am). They have gotten progressively worse, to the point where I’ll have a slight headache probably 85% of the day. I just started the D3 regimen today, but am looking for anything at this point. I’m becoming desperate, as I have felt my entire mood change throughout the day. I struggle to enjoy time with my kids and wife, because the only thing I think about is when my next CH will hit. Luckily I have been blessed with a wife that is sympathetic and understanding, but it is putting unnecessary stress on her everyday life as well. This is the first time I’ve come across this site, and am hopeful I can find some solutions in this online community. I am absolutely open to any and all suggestions, and if you have any particular questions for me, don’t hesitate to ask. Thanks
  8. THANK YOU, Denny, for taking on that task. If I ever have free time again (maybe early next year), I'd be willing to work on updating the O2 doc and just tidying up the D3 post. As we always say, "If we can help just one person . . . " Maybe instead of a general start-here type post, it could just be "things you can do right now." This might actually have been the original idea Moxie was presenting.
  9. G'mornin folks! Many good points and concerns Chf....AND....I totally understand your frustrations!!! Unfortunately, in my opinion.....and it makes me incredibly sad at times........the passage of time and advances in technology, the advent and popularity of social media and the manner in which it has become an integral part of so many folks fast paced lives, and the inherent fact that social media is such a dynamic platform for a support group versus an "old school" static message board or forum like ours! And it's not just us, our sister site ch.com has suffered the same decline in both newbies and active supporter/posters although I would imagine their active membership is larger than ours as it always has been. I know BobW had hoped that the board upgrade would help drive folks back from social media.....I have made personal plea's toward that goal but they've unfortunately been met by deaf ears for the most part......not bitching or pointing fingers in any way, just stating the facts as I see them....it's just the way of the world we live in today I reckon ya'll!! But, we are still quite relevant in my opinion.......we do still see a few new folks, particularly around the season changes and conference time....we do still see old familiar faces check in from time to time........and many, many folks in the Facebook groups that got to clusterbusters first, and who love clusterbusters and testify about it having saved their lives, post links on a very regular basis to our files!! For the most part though, they're no longer active here and quite possibly have no idea that they're linking to hard to read, corrupted files, full of broken links. So, I've been in contact with BobW and Jeff this week about the files issues and have taken on the task of editing all of the "Busting Files" to remove the place holder corruption from the upgrade and replacing all of the old yabb links to other internal files.........that process will begin in the next few days (gotta go buy a new laptop first).....its not going to be an overnight fix but we're going to attempt to get the issue addressed as soon as possible ya'll!! Along with that, let's continue this conversation here in regards to the thread topic, come up with a concensus outline of what the content needs to be, and I'll submit those ideas to Bob for his input! My heartfelt thanks and appreciation to all ya'll still manning the ship and being here to support those clusterheads who do find their way here! Much love and respect to all! Dallas Denny
  10. The following link to a post I made in 2012, should help explain how and why a baking soda tonic helps prevent CH. Seltzer Water and the Baking Soda Tonic both produce the same bicarbonate ion, HCO3- per the following chemical formulas, but that's where the similarity ends. Seltzer Water has a pH between 3 and 4 due to the carbonic acid formed when CO2 is dissolved in water under pressure. A solution of sodium bicarbonate (Baking Soda Tonic) has a pH of 9.3 making it far more alkaline. In fact, the carbonate concentration of the baking soda tonic is 100 times that of the carbonic acid making it more effective in elevating a low systemic pH and in the process, preventing CH. Seltzer Water (Carbonic Acid) has the chemical formula CO2 + H2O <-> H2CO3 <-> H+ HCO3- Baking Soda Tonic (Sodium Bicarbonate) has the chemical formula NaHCO3 <-> Na+ HCO3- http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1025/#1025 In case you're wondering... I majored in Chemistry... Take care, V/R, Batch
  11. I've given this a lot of thought, since I am going to have to be winding down the time I spend here. My first thought has been that there have been several "start here" documents in the past, but they don't get traction, for what I think have been three main reasons. The first was that they weren't posted prominently enough for people to actually know they were there, and reading them certainly wasn't required. The second (or maybe the first) reason was that they were not, in my view, very inviting. For example, although I'm a huge admirer of Bob, the "Big Pocket Guide" starts with many pages of stuff that is important but isn't why people came here (patient registry, clinical trials, devices ...), and it's just so darn big. The third (or maybe the first) reason is that I think people come here mostly with either a specific question in mind, or hoping for personalized advice about their situation. I don't think they're likely to look at a "start here" document and just feel satisfied. And there's so much specific advice that needs to be given that putting it into a "start here" wouldn't really help all that much. In my view, what would be most valuable would be to have a series of thorough, readable, and up-to-date documents on the major topics -- for example, O2, D3, busting, meds, and non-med abortive and preventive strategies -- maybe with some very brief overhead description. What's now in the CB files is pretty crappy. For one thing, the shift to the new system messed up the formatting of existing documents enough (at least on my computer) that they are now hard to read. For another, the information is old. I wrote the O2 document, and it needs a serious upgrade. Some of the busting advice is way out of date. I hate to even refer people to the D3 file because it's now so hard to follow. Then there are potentially very valuable files, such as Goadsby's article about pharma treatments for CH, that are tucked away in other corners of the board, at the home page. If I was going to have a "start here" related to meds, it would be just to point people to Goadsby's simple and clear discussion. A few months ago, there was a pretty big flow of new people to the board. Surprise, surprise, it was right around the autumnal equinox. Most of the time, except for what seem to be peak CH seasons, there aren't that many new people arriving. (At least, that's the way it seems to me.) To me, the big question is whether there are really enough committed people here to help with both the small flows and the big flows, and how long those people will be around. It's easy to name the handful of heroes, starting with spiny, who are here through thick and thin. And it's easy to name others who make very valuable contributions but more sporadically. It's even easier to name the scores of people who have been here, been helpful a few times or many times, and moved on. Maybe it's time for CB to think a little about why that is, and how this board will remain strong in the years to come.
  12. DD, I thought that might be the case. I'll see about fleshing my initial idea out a bit more and then ask for more people to contribute.
  13. This is way old but somewhat comforting. I’m episodic and am going on my 7th PF day after 35 day cycle. I noticed the tinnitus towards the last week or so of my cycle, only occasionally, but it seems to be getting worse since the clusters stopped. It’s almost constant throughout the day.
  14. Click Here
  15. Earlier
  16. Hi MG! Great idea but there is one small issue! One of our duties as moderators is to keep content referring directly to busting and busting substances moved to the secure sections of the forum!! Bob's Pocket guide is pinned in the "Busting Files" for that same reason! Perhaps delete that last paragraph and install a link to the pocket guide in its place! DD
  17. Thanks for the feedback Jandrews. I think a lot of people are like that, especially if they aren't familiar with online forums. I'm an IT Consultant, and use forums all the time, so didn't struggle. But if you don't it can be daunting. A post like this might also help reduce the newbie repeat questions. We are always happy to answer such questions, they aren't a bad thing. But a bit of knowledge when you come to the site would be a good thing for everyone, me thinks. At the very least, it'll provide an idea of where to start and what to ask. MG
  18. This would be a good idea. I'm about 1 month new to the site and thankful for Chfather, Spiney, Batch and a few others who got me a lot of information pretty fast. But I could have helped myself a little better if I had read the files. I didn't go into the files because I didn't have any idea what to look for. I did browse the general boards before posting though.
  19. Ummm...Alan...we all have the type of clusterheadache that relates to the trigeminal nerve...mine is right side. The point being?
  20. Another follow up: I have the type of cluster headache that relates to the trigeminal nerve (left side).
  21. Hi wonderful people. I was wondering if we should have a pinned post in the General Board section called something like 'Start Here'. This post wouldn't replace the posts in ClusterBuster Files, but be a light introduction, with links to those posts, and others, with more detail. Here's a draft of what I have in mind. First off, don't lose hope. Cluster Headaches are not unstoppable. It takes patience, some trial and error, and research. But it is possible. The wonderful people on this site are here to help. Combined, we have years upon years of experience and knowledge. Feel free to tell us your story and ask questions, and we will do our best to help. To start with, we recommend you scan through this post, follow the links when you are able, and then introduce yourself to the community and ask anything you need to know. What can I do to reduce my Cluster Attacks? - Use oxygen, energy drinks, coffee (etc.) to abort an attack as it's happening. (with a link to more details) - Start on the Anti-inflammatory Regimen to reduce and prevent attacks. (link to more details) - Start a headache diary, and record when you have headaches, how painful they are, etc. - Use the headache diary to try and identify possible triggers (alcohol is a popular one affecting about 50% of cluster sufferers). Avoid triggers at all cost. Next steps - Information on commonly prescribed medicines, how effective they are, side affects, etc. - Other options. You know, that sort of thing. What do you think? MG
  22. Thanks for the information. Maybe there is something about fizz that helps.
  23. Hey Dan, You can download a copy of the anti-inflammatory regimen CH preventative treatment protocol with vitamin D3 at the following link. Just paste it in your browser. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It would help if you could see your PCP for a lab test of your serum 25(OH)D and discuss this regimen before starting it. That way you're both singing from the same sheet music when the lab results come back. However, as nearly all CHers in cycle have a low serum 25(OH)D concentration and it looks like obtaining this lab test will take more than a few days, I would start it as soon as I picked up the needed supplements. You can always get this lab test and others listed in this treatment protocol 30 days after starting this regimen. If you have any questions or problems, sing out... Take care and please keep us posted. V/R, Batch
  24. Hey Dan and welcome. It sounds like a new cycle may indeed be starting. My cycles would start with one hit per day and move up over the next several days.I strongly suggest that you read about and start the D3 Regimen. Vitamins you take daily. It is an anti-inflammatory regimen for CHer's that has really helped a lot of people. Easy to do and it will kick in usually by about two weeks.It can be found in the Clusterbuster Files section of the board. The beast can change. You may find that most of your hits are nocturnal now. Do you have your abortives ready? Energy shots or some form of caffeine? Do you have O2? It seems to be time to marshal your materials to fight the beast. And if you plan to bust, now would be a great time to start. You are med free, correct?
  25. Hi guys, Two years ago I experienced my first cycle of CHs. The cycle lasted around 8-10 weeks, typically involving 3-5 headaches a day. On only one occasion did I experience an attack during the night (fortunately) which I remember being the most excruciating attack. I began to take a nasal spray of sumatriptan which offered partial relief, and around 8 weeks into the cycle I managed to procure some LSD, and began to experiment with the dosage. Shortly afterwards, my cycle appeared to fade away, although I'm not sure if it came to a natural end or if the LSD aborted it. Two years have passed without any symptoms, until this week. Two nights ago, I woke up in familiar and excruciating pain - the attack lasted around an hour and I was able to sleep again after. Tonight, I've been woken up again around the same time - this attack has been more intense. Am I right in assuming this is the start of a new cycle? So far I've only experienced these two attacks, both during the night, both very similar. I know episodes can be unpredictable, but I've been thrown off by the fact that it's only been one attack per night (as opposed to my previous cycle of 3-5 per day, with only one isolated attack in the night). Any insight from longer term sufferers would be appreciated. Solidarity with all of your poor souls. Dan
  26. Thank you for this.
  27. Alank', there's the full vitamin d3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Incidentally, there was a fellow here who recommended a mix of baking soda, water, and lime juice as an abortive. Said he thinks it works for him. I don't know whether I'm right that water + baking soda = something fizzy (not necessarily carbonated). Your initial post just made me think of this.
  28. As a follow-up post, I also take vitamins: in morning, 1000 mcg methylcobalamin B-12 and 200 mg high absorption chelated magnesium (every other day to reduce impact on gut); at lunch, 5000 IU vit D3 and a multivitamin for people over age 65; at night before bed, 5 mg melatonin (slow release). I've been taking these for about three years. Do folks take other vitamins to prevent or lessen cluster headaches?
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