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@Kimbers Welcome to the community and thanks for being an advocate for your hubby!! We love our supporters! While a prednisone taper usually does stop the hits, it's primary use is as a bridging med to allow other Frontline clusterhead meds like verapamil or lithium to build to a therapeutic level in your system....however, it doesn't abort the cycle for most folks so the hits will likely return after the taper unless he's lucky and has a very short cycle. Since he's so new there's no guessing how long his cycle will last and cycles tend to morph over the years anyway for most of us.....mine are pretty consistently around 20 weeks followed by an 18 mo remission. How else are his clusters being treated? Two primary things for ya'll to educate yourselves on and put into place are high flow O2 and the anti inflammatory vitamin D3 regimen......O2 will abort individual hits while the D3 regimen will either decrease the intensity and number of hits or it can completely abort the cycle for many, many folks! You can find files on both in the Clusterbusters Files section. Dallas Denny

@Bejeeber Thank you so much for that part about getting his life back! Def a question that’s been on my mind a lot!! I’ve read a lot of the forum posts and have seen you both posting and responding quite a bit! Thank you for helping so much! It means a lot to me, my husband and I’m sure a lot of others on this thread!

@Dallas Denny Thank you! That’s what I was afraid of, he is not on any preventive meds, but the dr did say that the next step is verapamil. I have him currently taking D3 and magnesium and was going to add in all the others mentioned in the regimen I found on here after he finished the prednisone. I suppose I’ll start the full regimen now though. He gives me a hard time taking pills so I didn’t want to overwhelm him lol. We have the high flow oxygen but he says it doesn’t help and he doesn’t like it. I think it’s more that he doesn’t like it. He’s rather stubborn. We also have sumatriptan injections but haven’t needed to use them yet since the prednisone is working. Should I call his dr and ask for the verapamil Rx? Is there any way to know if he is episodic or chronic? Or is it a wait and see kinda thing? He def started with these headaches in the beginning of August, but had a hard time describing them and how they felt for a while so I’ve been wondering if they started before august as I can remember certain traits he exhibits while he’s having them happening before then. This is very overwhelming lol

Hi Kimbers! I have to agree that as exceptionally unfortunate as it is for anyone to experience CH, it is decidedly fortunate for your husband to have had it diagnosed and addressed relatively early, and that you are helping him. Speaking of fortunate, I see Dallas Denny posted while I was writing this - you just got advice from a true RINGER there - I know I've listened very closely to what DD has had to say for over a decade now, and have always taken great stock in it. I can confirm a lot of us are quite familiar with prednisone tapers. I really hate to confirm this part, but yes after the taper down, the attacks can come back. They have always come back after a pred burst for me, but occasionally it will actually break the cycle for someone, so there's that ray of hope. Meantime good on you for not sitting on laurels - it is indeed time (IMO) to be doing this research, and pulling together a mighty arsenal for fighting back and potentially killing off the beast (one cycle at a time). Dallas Denny isn't kidding around about the the D3 regimen as a preventive, O2 as an abortive, and if he had mentioned busting as a powerful preventive, he wouldn't have been kidding around about that either! You hadn't asked yet if some of us really do find significant relief and get our lives back. The answer is yes.

Not exactly close but it may be worth it if possible. She works out of polyclinique center-ville in montreal, likely one of the top headache neuros in Canada, has a few papers etc. She was my neuro in Calgary, before she decided to return home to be closer to family. Elizabeth Leroux MD, FRCPC

Personally, when my cycle is over, it takes a while to relax and return to 'me' fully. It just does not happen right away sometimes. MM's are great for the CH as well as PTSD and mood. So, if you bust with MM, you are in an inherently better place. Caveat - most are as there is always someone who had a different result out there somewhere. Perhaps you are still having PTSD from the cycle? You are just out of it and likely not fully back up to speed from what you are saying. As for antidepressants, I have only ever taken one -Welbutrin. And only for three months at that. So, I am not comfortable recommending any of them. I was put on one in my 20's that has since been removed from the market. So, no help there. I will ask you why you stopped the D3 Regimen? Out of cycle and don't need it now? Most take it year round for the benefits. It does more than just cut short or stop a cycle. But if you aren't on it, it can't stop the next cycle. I find it a very cheap type of insurance against a cycle and keeping my mood better too. Prevent the cycle and you prevent any depression that comes with it. So, why NOT stay on it? Did you have issues with it? ATB A-Z. Sorry to know that you are in a funk, but very happy for you that the cycle is ended and ended early to boot!

Hi Everyone! I've been sifting through theses forums looking for help and answers and I must say...I'm so thankful for all of you sharing your stories and questions! It's been a HUGE help! My husband was diagnosed with clusters almost 9 weeks ago, he is currently in cycle (we hope he's not chronic, but don't know yet). this is his very first episode and from what I've gathered we are very blessed to have found the right drs so quickly that gave him the right diagnosis and sent us to the right places. He is currently on a prednisone taper (very high dose), and his CH is gone but he is still having shadows a good majority of the day ( he says they are more annoying then painful). I'm concerned that this might mean he is NOT coming out of the cycle and that once the prednisone is done, they will come back. anyone have experience with this same thing?

@Bejeeber You beat me that time jeebster! Lol!

@Kimbers Very important to do all of the cofactors as they all work together and the K2 is needed to move the calcium from the large amount of D3 to prevent kidney stones.....I know it's a bunch of pills but it works great at controlling clusters.....is he doing the loading dose protocol? The guy that originated the regimen is a longtime member here and can help you adjust the regimen as needed for maximum efficacy! His screen name is xxx and you can message him directly with questions if need be. Next, tell us about hubby's O2 set up......it's often not prescribed as needed for it to be effective....should be administered at 15 lpm minimum via a non rebreather mask. Lastly, no way to know about episodic vs chronic at this stage of the game....we call it "dancin with the Beast"..lmao......chronic is defined now as having no more than 30 pf days in a years time. I know folks that were chronic from the git go and I know some that have gone from episodic to chronic AND vice versa!! The good news is the vast majority of the folks I know are episodic! DD

Amen.

Emails are not displayed to members for privacy reasons. You can pm each other to exchange information!!

Dear CHfather, Thank you for your message and all your advice. Yes, I've looked at the list of recommended doctors but I thought people here may have newer information/recommendations. I will definitely check the facebook groups and the information about using welding oxygen but I hope I can find a doctor who can prescribe O2 and treat me too. Again, thanks for your support and I'm grateful that this community exists.

sorry that you feel that way and i really think that there is something that when you are in a cycle you are not in PTSD but ATSD (acute trauma)...it's happening in real time to you and there is nothing post about it. It does take me a few weeks post cycle (mine go on 3-5 months every 3 years) to feel like myself , mostly because you have been under attack and there is a real need to get out from under the shock of it. Therapy is something that works for me to discuss those feelings as your friends can't understand it. and whether its busting or a short treatment of a mild sleep/anti depressant like a trazodone or meditation its about letting yourself heal and recovery and being kind to yourself after the trauma wishing you good feelings

Bosco, 'A systematic review conducted by Ho et al. found that there is substantial evidence to support the targeting of the pterygopalatine ganglion via pterygopalatine ganglion blockade, radiofrequency ablation, or neurostimulation for the treatment of cluster headaches.' That has been stated as long as I have been researching - the last 17 years! They have cut nerves, etc, through the years. Additionally what I found was that it worked much better for SUNCT than CH. Yes, they did say that. But at the end, they said that further study is needed with trials. Having nerves burned or cut is not at the top of the list for treating CH. Not anywhere close either. Most papers will tell you that it is used as a 'last resort' and has a fair to good chance of not working, but leaving you with a mess to deal with in addition to CH. Some companies have come out with mechanical stimulators that work for some CHers by targeting nerves. The reviews are very mixed. Don't read so much that it scares you!!

Yep. Politics is off limits here as we have members on all sides of any political discussion. Stirring that pot is not helpful for anyone. Treatment info and discussion is great. New info is great, just no politics please. Thanks all.

I can’t post what I wanted to, but this is relevant to the topic of sodium valproate. I hope you all find utility in all of this. Emerging Subspecialties in Neurology: Headache Medicine https://n.neurology.org/content/88/13/e122

Treatment of Cluster Headache: The American Headache Society Evidenced Based Guidelines https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12866 That should keep you active. All sources/journals are credible, and open access. It’s not complex, all of you know far more than me. Translation-if I get it, you will plow through it. Basic.

Apparently I misinterpreted prior people’s comments, common issue given a debilitating axis II that causes emotional dysregulation. Anyway, I have not received any emails from the bigwigs and assume that this is Kosher. Since most are in the loop, I will take a back seat, and provide you with some relevant research that may assist with said thread. Note: most of these had small sample sizes: as all of you know, a good sample size is often conducive to reliability. The statistical method is not often disclosed, and thus I cannot say whether or not they salami sliced, and cherry picked the conclusions. Also unknown is if this was meta analysis, regression analysis, double blind. But, you guys know this as much as I do (not rocket science). Last disclosure: these aren’t from say JAMA, Science, NEJM, the like. JMO, all can have subjectivity, and with such a small population to trial, take what you can get-presumptuously. Like you guys, you probably can skim this in 5, get a rough idea of it. The credibility of sources seems substantiated, without bias. I believe, or assume, all of you understand how to check credibility of sources. Onward, all of these journals are Gold Open Access, or Green Open Access DOI, and I would NEVER UNDER ANY CIRCUMSTANCE subject ClusterBusters to anything illicit. Incontrovertibly this is a public forum, stored on a non ram disc drive. I’m not going to subject myself or a 501c3 to something stupid. These are free, in non Academia speak (that is all that you need to be concerned with). I will start with this one: The First-Line cluster headache Medication verapamil alters the circadian period and elicits sex specific sleep changes in mice. https://www.tandfonline.com/doi/full/10.1080/07420528.2021.1892127 Verapamil for Cluster Headache. Clinical Pharmacology and Possible Mode of Action. https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/j.1526-4610.2008.01298.x Pharmacotherapy for Cluster Headache https://link.springer.com/article/10.1007/s40263-019-00696-2 Beta-Blockers for Migraine Prevention: a Review Article (It’s in the Ballpark) https://link.springer.com/article/10.1007%2Fs11940-019-0556-3 What the heck, it’s in the same ballpark and probably can help: https://link.springer.com/article/10.1007%2Fs11916-014-0413-8 Last one-IMPORTANT Pathogenesis of Chronic cluster headache and bouts: role of tryptamine, arginine metabolism and a1 agonists (New findings about the pathophysiology and therapy of cluster headaches). https://link.springer.com/content/pdf/10.1007/s10072-017-2862-4.pdf Happy reading. It’s all elementary, should all be basic for you guys. Science was never my interest: I mean I understand it, but not of my particular interest (well, primary interest). All of you probably have more background in cell/molecular biology, neurobiology, neurochemistry, and physics, prolly math as well. Ask and I will try to deliver. So much is now by pay. And I mean one journal article (DOI) can set you back $40-it piles up fast. You know this already I will just shut up. Peace.

I don't think it's off limits just I got a little political once and just got told not 2. So I was just putting it out there for ya that's al

I have the Bejeebiheebies if that helps any.

Cluster busters wants posts to stay cluster related... yes I know what you say is relevant. Please email me I will check for you