Hi everyone again. I was a member of this board somewhere around 2000ish for a few years. I learned a lot and met a lot of great people. I was diagnosed in 1997 with ch's. when I was 19. I was a chronic suffer with no type of cycle breaks for years. With o2 tanks by the bed along with high amount of verapamil and imitrex, nothing worked. I was seeing a good Dr. those yrs who did everything to help. They disappeared around 2009 completely. I'm now 38 and they have returned in full force. They made their way back slowly over about a two month span. The last month they have been horrible. I've had two particular attacks that were full blow leaving me screaming in pain. This past Friday I had another that lasted appx 45 min. This is where I need help. Since the one on Friday...I've been left with a headache that has been constant. It's not an attack type ch. but is in the area. The pain is somewhat tolerable. Others it knocks me down. This has been going on since Friday. I don't remember having lingering effects from that attack. What is going on? Was hoping u guys may school me. I've got back on the board after 7yrs reading a lot. I'm not too familiar with some of the new "lingo" ex vd3 and acronyms. Lol. Anyway was hoping maybe someone cud explain. I've been back and forth to the Nero. We're starting back where I left off with the meds from before. When I went back for my 1st appt a few weeks ago...he told me it had been so long that my file was in the attic. Wasn't even in there new system. Anyway I'm grateful for any help or advise from u guys. This was a very depressing part of my life for many years. Looks like I'm back.  I sure didn't miss any of it.  :'(

Sorry you had to look us up again, Ouch, but here we are. Large as life, not quite so smelly, and happy to help if we possibly can.

The good news is there's been some real advances in the management of this dread disease starting especially with Oxygen. People are now using it at 15-25 litres a minute, through a special mask, and getting terrific results.

There's also a vitamin regime which is showing fantastic results for most who use it and ways of splitting your Immitrex shots so you get two for the price of one.

Do you know about chugging down a Red Bull drink at the first hint of a hit? Horrible stuff, but many here reckon it's liquid gold!

Only better days ahead, mate, so try to hold that smile,

Brian down under.

Ouch,

Sorry to hear you're back dancing with the Beast!  Brian is right. Lots of new stuff happening.

I am chronic for a number of years and the constant dull pain you refer to are called "shadows". They are, as you say, tolerable, but irritating. Nonetheless, far better than screaming in agony every day.

Read up on the D3 regimen on the following link.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Concentrate on Part 2. It will give you loads to discuss with your Neurologist. 80% of those of us using it are having significant benefits.

It is important that you do discuss thus with your Doctor.

Ask as many questions here as you need at any time of day.

We're always here.

Look at the tab on the top left of your page entitled "Oxygen Info". It will give you all the current info that Brian refers to.

Go out and buy half a dozen Red Bull (or similar energy drinks) and always have them to hand. They need to be consumed at the first sign of a hit and knocked back as fast as possible. The sudden rush of Caffeine and Taurine into the blood is believed to be capable of heading off an attack.

Speaking for myself, they sonetimes work, but not always.

Depression is a high risk with Cluster Headache, as you know, but with the information and support you will get here, we hope to be help you avoid that "Beast" as well.

Keep in touch.

Peter.

To quote Dr. Brian McGeeney from the Clusterbusters conference a year ago, "If you are wondering if your preventative is working, it isn't."

If you are going back to the same meds that didn't do you any good last time, why? Peter gave you the link to the Vit D3 regimen, which is effective for over 84% of those who have tried it. (Verap, which is the pharmaceutical with the best track record is between 25 and 40% effective.)

Another thing for you to look into is 5 MeO DALT.  I'm copy/pasting an article by Mitch Post giving you the FAQ's of the subject. Email me if you have further questions on the matter, and I'll get you in touch with someone who has more answers than I. All I can say about it is it took this 15+ yr refractory chronic and gave me 61 weeks of 99% PF time.

  Mitch Post November 18, 2014 · Edited What is 5-MeO-DALT, and why should you care? The short version is that 5-MeO-DALT is a fairly new option for cluster headache patients who are comfortable self-administering treatments. It is a simple tryptamine that acts on serotonin receptors in the brain. When used carefully, 5-MeO-DALT is extremely safe and is proving to be very effective for some cluster headache patients. Now, the FAQs: Q: Who invented this cluster headache treatment? A: Nobody invented it as a cluster headache treatment at all. The “recipe” was devised by Alexander Shulgin in 2004, and later synthesized by a chemist. It became a relatively obscure “research chemical” used rarely as a recreational drug. More on that later. I stumbled upon 5-MeO-DALT because I was looking for a molecule that had some of the good properties of the things we know, like psilocybin and LSA (stopping my cluster headaches) without the bad properties (psychedelic trips, nausea, jail time). Q: How does it work? A: 5-MeO-DALT is a serotonergic. It works by engaging our serotonin receptors and sending a signal to our brains. The whole mechanism of exactly how this stops cluster headaches is still a mystery, but there are two key components: affinity and signaling. Affinity is how well a molecule “sticks” to the right receptors, and signaling is the actual message that it sends to our brains. 5-MeO-DALT has a higher affinity than psilocybin for the 5HT2A receptor, and it seems to send the right signal. Q: What makes it better? A: I’m not willing to say that it’s “better” than other alternative treatments, but I will point out the advantages. One advantage is dosage control. When you take 15mg of 5-MeO-DALT, you are getting 15mg of 5-MeO-DALT. By comparison, when you take an extraction of rivea corymbosa seeds, you are getting an unknown amount of LSA along with hundreds of other chemicals, some of them volatile. When you take 1g of mushrooms, you are getting an unknown amount of psilocybin along with hundreds of other chemicals, some of them volatile. Why is this important? Imagine listening to your favorite song. Now imagine listening to your favorite song while vacuuming, the dog is barking, a baby is crying, and someone is ringing your doorbell. Same song? Not really. Every chemical you put in your body has a ripple effect. 5-MeO-DALT is a single molecule that does one thing. Secondly, the side effects are almost non-existent. Many of us avoid using tryptamines over fears of a “trip”. With a normal dose of 15mg of 5-MeO-DALT, most people notice absolutely no side effects at all. It has an extremely short half-life, so even if the user feels some effects (cold and sleepy are the two most common), it is out of your system in two hours. Finally, it is very user-friendly. Accurate dosing of 5-MeO-DALT requires only a decent milligram scale and some empty gel capsules. For those of us who don’t have the patience to grow anything or do our own extractions, it’s a simple option. Q: How is this stuff used for cluster headaches? A: The consensus right now is 15mg every five days. For episodics, this should be repeated until you are certain the cycle has stopped. For chronics, this can be tricky. I recommend taking it every five days until full relief is attained, then gradually spacing out the doses. Frankly, some chronics are quite content taking a dose every five days no matter what. With its low cost and minimal side effects, that’s not a problem. One question that always comes up: Doesn’t “more” mean “better”? Absolutely not. With this treatment option, we need to break the old paradigm of “trip out like it’s a Phish concert” to get relief. This is about a consistent dosage and schedule. If psilocybin and seeds are a hand grenade, this is
a laser. If you feel the need to increase the dosage, I suggest cutting the time between doses to three or four days, not increasing the 15mg dose. Q: How do I get this stuff? A: One of the biggest challenges right now is that 5-MeO-DALT is available only on the “research chemical” market. This means it is sold alongside some particularly nasty stuff, and occasionally by vendors that aren’t the most reputable. I wish we could change this, but it’s just the reality of it. The best thing to do is research the reputation of vendors thoroughly before buying. Community sites like Reddit and the forums at ChemsRUs are great places to find out if a vendor is reliable. But at the end of the day, this is a DIY treatment. Each individual patient will have to establish their own source. Hopefully as the word gets out, more reliable sources will become available. Q: Won’t I go to jail for this? A: No. In most countries, 5-MeO-DALT remains unscheduled/unregulated. Japan and Sweden have made it illegal, and the UK is trying hard to make it illegal. In the US, it is possible to be prosecuted under the analog act, primarily if you decide to sell 5-MeO-DALT as a “street drug”. There is absolutely nothing illegal about buying or possessing it for personal use. Q: Is it dangerous? A: Not in the amounts we’re talking about here, which is why dosage control is so important. Recreational users have reported “trips” with amounts up to and over 200mg. If you decide you want a recreational drug that will produce a “trip”, you have already read too far here. This isn’t the drug for you. Because this molecule is a serotonergic, it would be very difficult to overdose on it. The one death being attributed to 5-MeO-DALT in the UK involves a man who took it, washed it down with a lot of alcohol, and stumbled out in front of a truck. The coroner ruled it “death by misadventure”. I believe the alcohol played a larger part in his death than the 5-MeO-DALT. But bottom line, we are not talking about recreation here. Only small doses to treat cluster headaches. Q: I am not into alternative treatments, why should I care about this? A: The reason you really should care is because this is a patient-driven treatment for cluster headaches. It is a prime example of citizen science, and I truly believe this is where all advances in cluster headache treatments will come from in the future. Whether we’re talking about tryptamine drugs like this, natural remedies, vitamin supplements, or the re-purposing of an existing drug, it is the cluster headache patients who will be doing the research. We have waited for far too long for “somebody” to “do something”, and the fact is that nobody is really working on our problem. At least not as hard as we’d like them to. So as cluster headache patients continue to explore science, conduct experiments, and communicate with each other, it moves all of us closer and closer to a remedy to our pain. So even if you don’t like the thought of 5-MeO-DALT, you should care about the scientific process that has brought us this treatment. I hope this has helped cut through some of the overly-scientific language that’s been thrown out there about 5-MeO-DALT. Since this facebook group is the largest single group of cluster headache patients, I think this is a good place to continue the discussion. If not here, where? If not us, who?

Thank u.  I need all the advise and help I can get.  Had an attack last night that lasted appx 1 hr. But set off another whole headache after that was worse than the attack itself.  And that eases one min and hurts bad the next.  It ended up sending me to the hospital screaming.  The morpheme shot helped with the pain.  But it won't leave.  I don't remember having these before. How do I shake it these?  I slammed 3 red bulls so far. 

It sounds truly awful, Ouch, and perhaps this might be a good time to seek out a headache specialist to ensure the original diagnosis is correct and complete.

You see it's possible to have more than just the one headache syndrome, and it's no fun at all, but if that's what perhaps is happening it can make a big difference to your life.

We'll also happily assist in finding a nearby specialist if that's any help to you.

Stay strong, we care.

I've had several, "Afterburns". For me they last up to 48hrs. Head pain from Kip-6-9. Morpheine won't stop it, almost nothing can stop it.

For some things like 4way nasal spray helps. Oxygen helps me but the pain keeps returning so I use a lot. Ice or heat may help. Hot black coffee or just eating has helped.

Good Luck