lbh

@Bb008 thanks for asking! No I haven’t - still on medication and still in cycle with no end in sight. This has been the longest cycle I’ve ever had. Interesting data point here - I’ve never been so sick with “normal” stuff in my life. I’ve had COVID, strep and the flu this year (little kids…). 3 weeks ago I went to an ENT, who diagnosed me with a pretty significant sinus infection including inflammation in my sphenoid sinus. I’m now trying to treat that, but I don’t know how long it has been there and it’s entirely possible that it’s aggravating my clusters. So, your husband should consider seeing an ENT to see if COVID caused any inflammation in his sinuses. The sphenoid specifically is way back there next to the pituitary gland and hypothalamus, and symptoms of infection include deep seated headache and pain around the eyes. It’s too early to say whether treating this infection is going to end this cycle, but it sure feels good to be doing something more than just waiting. good luck.

Yep. Cycle started just on the tail end of COVID for me and out of season. Still going…7 months later.

I am a side switcher. My first 10 or so years were on the left mostly. But after year 5, my cycles would taper out with pain on the right. Then the cycles would start on the right, rage on the left and finish on the right. Now, 14 years into this madness, they’re almost exclusively on the right. The right hurts less but comes more frequently and lasts longer. Both sides are painful enough to wake me up from sleep and incapacitate me until the attack is gone. So, side switching is a thing for me.

@BustOrNothing I haven’t tried it yet. I’m waiting for some things to settle down in my life before trying it since the magnesium historically makes me so sick. Will update this thread when I have some results. Hopefully in about a month.

Ok….I’ve done a little dr. Google research and ordered magnesium orotate powder, which is supposed to be much easier on the digestion. Will slowly titrate up and report back on how that goes.

Thanks everyone for the responses. @Cpt. Krispywhen you take it without the mag, does it help? Is it helping your current cycle? Would love to hear from @xxxon this.

Hello all. Question re the vitamin d regimen. I’m finally in remission (although still waiting for the Emgality to wash the rest of the way out of my system…..going on now 13 weeks). I’m going to start the Vit D regimen to the fullest of my ability in hopes of aiding in extending remission/tamping down the next cycle. Trouble is that my body does not tolerate any magnesium. I’ve tried a few different formulations, including glycinate, and they all cause GI issues. Is there a version of the regimen without magnesium? If I cut out magnesium, are there other cofactors to adjust? Haven’t started yet; just trying to get the plan nailed down. Thanks for your thoughts.

I’m piping in here as well. I’ve been episodic since 2008 and was very excited when Emgality was approved. I go into cycle every 1-2 years, and while my cycles began as a 6 week period, over time they have lasted months and been difficult to shake (some of that is my fault, as I am generally impatient with verapamil and prednisone due to the side effects, and trying other medications has historically made me sicker). I went into cycle in October 2019 and immediately began Emgality. I took it for 3 months with absolutely no noticeable side effects, and by mid January of 2020 my cycle was gone. I counted that as a victory and was delighted. However, I started shadowing again in July and restarted Emgality. I took it in July, August and September. By mid September I noticed that my digestion had completely stopped and I was gaining weight. By beginning of October, my cycle had started anyway. I stopped the Emgality and have been fighting since October to put this cycle down with prednisone and verapamil. I recognize the Emgality helped me get rid of it last time, but this cycle came unusually fast, had lasted unusually long, and is behaving strangely (side shifting, hits separated by days, odd facial sensations). I attribute all that to the Emgality so am hesitant to take it again. I’m very curious to hear others’ experiences. The docs don’t know anything because the drug is so new. We’re not going to sort this out unless we share it on the forums. thanks

MG - Agreed that hormone levels has something to do with it, certainly in at least some people. This is an interesting set of research by Dr. Rozen - http://www.ncbi.nlm.nih.gov/pubmed/?term=clomiphene+and+rozen+and+%22cluster+headache%22 According to Wikipedia, Clomid does the following in men (off label of course): Clomifene citrate has been found very effective in the treatment of secondary male hypogonadism in many cases.[14] This has shown to be a much more attractive option than testosterone replacement therapy (TRT) in many cases because of the reduced cost and convenience of taking a pill as opposed to testosterone injections or gels.[15] Unlike traditional TRT it also does not shrink the testes and as a result can enhance fertility.[citation needed] Traditional TRT has the risk of inducing a chemical gonadectomy, although with monitoring and low-dose hCG as adjunct, this is usually preventable and reversible.[16] Because clomifene citrate has not been FDA approved for use in males it is prescribed off-label. Due to the fact that Clomifene is now a generic medication in most markets, it is unlikely that a drug company would pursue FDA approval for use in men now because of limited profit incentive, mostly due to the relatively small market potential.[17]However, the single isomer of clomifene, enclomiphene under the brand name Androxal, is currently under phase 3 trials for use in men.[18][19] So maybe this is something we should collectively be mentioning to our doctors.

Well that's incredibly lousy - I'm sorry to hear that. Let me ask you a couple questions. Prior to your 3 1/2 yrs pain free, were you chronic or episodic? Did the cycle start at the time you were supposed to go into cycle or high cycle? Were you feeling like a cycle was ramping up prior to that maintenance dose? Did anything happen in the off period that might have precipitated a cycle? How old was the MM that you used right before the cycle? Was it from the same batch that you had been using for the prior 3 1/2 years (and therefore, was it 3 1/2 years old)? When you do use MM now, do you feel any effects of it? How long has this cycle been going? Have you tried any of the other tryptamines to put the cycle down? The more info you provide, the better job we can do trying to figure out what may have caused it. Thanks.

Thanks. That's what I'm hoping. If anyone has accidentally busted their way back into cycle, please speak up as I think that would be a really important thing to know.

I'm pretty curious about that last part. How many people have you really seen start a cycle with a preventative bust? My concern is whether dosing at the end of a cycle that is going away on its own to finish it off for good might generate a reoccurrence of the cycle or slapbacks so harsh that you have to start medicating again. Any evidence of that happening, and if so, how prevalent? Thanks.

Thanks. I tried the D3 regimen about 3 years ago and it didn't seem to make much of a difference. Is there a link to the updated regimen with new dosing and cofactors? Might give it another whirl. I've also found that my B12 is very low, although who the hell knows if that has anything to do with anything.

Thanks. I'll try that in the morning. The O2 was enough to get me through 5 day detox. I busted big time on Tuesday night. The slapbacks have been completely unbearable and overtook the oxygen. I can't make it another 5 days. So for the first time in over two years, I'm on prednisone, verapamil, immitrex, ambien and klonpin as needed when I start to lose my shit. I've never successfully busted out of a cycle once it takes hold. I've been quite successful extending remission, but once it settles in I'm screwed. I probably can't appropriately express in writing how angry I am about this throug a keyboard so won't try. At this point there's nothing I can do but wait for the cycle to end while on medication, hope I can sleep, and stay away from solid foods. These times are very dark in my life.

I downloaded the article. If somebody would explain to me how to upload files to the new message board, I'll post it. Thanks.

Thanks. I'll download and post that article if I can figure out how. I was told that the next size up welding tanks - 125 cu3 inches I think - takes a different sized regulator. People going through welding supply should just make sure they ask the question. I can't imagine the frustration of getting home late at night, finally setting up your O2, and finding out then that your regulator doesn't fit. That by itself might cause my head to explode.

Thanks all. For the general public, this is exactly what I did: 1. Bought an 80 cubic inch welding O2 tank from Airgas (www.airgas.com), which is a huge national company with branches all over the place. Refills will be something like $20 per tank. The tank itself was around $240. I can carry it, but a hand truck would be better. Now that I'm trying to manage attacks with it, 80 might be a little small to get through the 5 day detox, but it's a manageable size and should be enough to get you through 2-3 days to a bust, if that's the plan. 2. Bought a standard welding regulator from Harbor Freight (www.harborfreight.com), item number 94846. Matching the regulator with the tank size is important because not all size tanks fit all size regulators. This pair will work. 3. Get a Cluster O2 kit (http://www.clusterheadaches.com/ccp8/)so you have the proper mask. 4. Make sure you have an adjustable wrench big enough to connect the regulator with the tank. I think mine is 1 1/8" and works just fine. 5. For the academics among us, see http://www.ncbi.nlm.nih.gov/pubmed/26566938, just published. Maybe somebody wants to download and post? Maybe I'll download and post... Thanks again for all the help. lbh

Thanks! Lifesavers as always. I do understand what you're describing - it's like a layered conical spiket that you can then jam on the hose attached to the mask. Hopefully I'll be all set up to win the fight tonight and lay off the immitrex/steroids.

Thanks! Does this have the nipple for attaching to the mask, and do I need to buy an adaptor, and can I get it there? There is one of these in my neighborhood. Lucky break

Thanks guys. You are awesome. The link doesn't work to take me to a specific regulator. Can you just give me the part name so I can find it? In other news, the local oxygen supply store won't sell me a regulator because they think it's FDA regulated and I don't have a prescription....FOR THE REGULATOR. That guy is a moron. And an asshole. And dangerous.

Continuing this, I understand that tanks take certain size regulators. My biggest concern here is buying a tank and ordering a regulator only to find that the regulator doesn't fit on the tank. Are they all standard sizes? Or should I be worried that a 25 LPM medical regulator isn't going to fit on a welding tank? I'm hesitant to ask the welding supply store because I'm worried that they'll refuse to sell me the tank if they think the use is medical. Thanks.

Good to know. Thanks.

Excellent, thanks. And there's no concern purchasing from a welding supply company that there may have been some other (and noxious) gas in the tank prior to being used for oxygen?

Hi all - Curious where those of you who own your tanks purchased the tanks and the regulators. Renting is not only expensive but damn near impossible logistically to get them in, out and refilled. Where did you buy? Generally speaking, what's the price range? Thanks very much.

I'd just like to note the importance of giving the Lilly trial a fair shake. The Merck molecule referenced above (Telcagepant) was a receptor antagonist (http://en.wikipedia.org/wiki/Telcagepant), whereas the Lilly molecule subject to the study is an antibody (http://www.arteaus.com/ly2951742.html). I understand that these molecules reduce GCRP in different ways and are metabolized differently in the body. Please read up on the Lilly molecule and review the clinical trial page, which has a listing of the study sites (https://clinicaltrials.gov/ct2/show/NCT02397473?term=NCT02397473&rank=1) The study should be open for recruitment now to those qualified (http://clustertrials.com) I for one am extremely hopeful and am looking forward to continued progress.