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Hi to everyone here im new to this site but i have suffered from chronic cluster headaches for the past 6 years.There has not been 1 day in the last 6 years where i have had a single day without having any where between 3 to 8 severe attacks per day.Ive had everything that medical science has had to offer,sumatriptan ,verapamill,botox injections imgality,nerve blockers,you name it and nothing work as most of those treatments were only proven to help people that had episonic clusters but not affective for chronic cluster headaches. It got to a point where i was that depressed that thinking about suicide was my only option to end my suffering and even went as far as paying $14000 dollars to buy a funeral plan before ending my life.Then after watching several videos of people claiming that taking magic mushrooms or lsd gave far better results in very small micro dosages of 0.4 grams every 3 to 4 days had far better results than any medications with no nasty side affects what so ever i started taking shrooms and to my suprise i was getting alot less attacks per day and not as severe.Then i started looking into something that no one really ever talks about and that is ECS short for Endocannabinoid system wich is something that we are all born with our bodies naturally produce endocannabinods however as we are all different so some of us dont produce enough of this compound in our body and funnilly enough i found that people that suffer from chronic migraine and cluster headaches were the ones that were lacking this enzyme.The reason we have cluster attacks as far as i know is due to vessels in our brain become inflammed and cause the vessels in our head to swell up and put pressure on the trigeminal nerve just above our ear and intern sends severe pain signals to the nerves behind your eye your nose your cheek bone and your jaw line and in my case even my neck.So i thought well if this theory is correct then how can i increase endcannabanoids in my system that my body could not do naturally.And thats where my life changed completely.I got onto a company who was liscenced to sell very pure high grade CBD oil which had no thc in it but had the cannabanoids CBD,CBG and CBN also particularly CBG which has a very powerfull inflammitory property bound to it but also helps greatly with dealing with chronic pain, so i thought well if its such a powerfull inflammitory then if it reduces the swelling in blood vessels in my head then it will not put pressure on the trigeminal nerve.Low and behold from the first day i took a very small dosage of 0.2mlg under my tongue twice a day it was instant.For the first time in 6 years i went a full day without a cluster attack it was almost to good to be true ,but 4 weeks have past since ive been taking this particular CBD oil and my clusters have dissapeared completely.Doctors say they just dont have a cure or know why people get cluster headaches well all i can say is they need to start looking into the endo cannabanoid .I urge any one here suffering from this debilitating illness to try it i mean what have you got to loose buy giving it a try .After having chronic clusters for 6 years without have not 1 day without at least 3 to 8 attacks per day to just stop completely from taking this CBD oil cannot be just a coincidence.I feel your pain and only want to give you another possible option that is drug free with absolutely no side affects that comes with traditional medication,and if you would like to talk to me personally about how to go about it im happy to leave a number if you would like to talk to me personally.

Since left side episodic started in Oct 2013 I’ve tried most of the known treatments/meds and non-prescribed trials, and not much helped but time. Was hopeful with Emgality as I thought it worked but likely end of cycle, and so expensive even with decent fought for coverage. Lithium seemed better than Verapamil as the bridge etc but Niece with migraines busted out her peppermint oil last Aug ‘22. Dabbed and rubbed in to both temples and back of neck, and seemed 99% of time quelled the attacks. I let my Neurologist know and he’d never heard of it being helpful with Clusters. I’ve replaced the D3 regimen, Lithium, Verapamil, Gabapentin, and triptans for this. Have had cycles but this oddly seems to help. Still pissed off and exhausted after but it’s rare now for the pain to go to even a 4. Anybody try this stuff? All the best, Scott

....unlikely that cooking oil in and of itself would be a trigger....however, old/used/stale/high temp abused cooking oils have high levels of free fatty acids which, among other things, are bitter, darken the oil, cause greasy mouthfeel and are just all around nasty. it wouldn't surprise that among these there could be triggers due to vasoactivity. minimize re use of fry oil, old oil, or restaurant foods deep fried in never changed oil (you will know by taste and mouthfeel). high volume food service uses oil fast enough to minimize excessive free fatty acids, as well as being able to afford frequent oil changes. low volume stores use til gone and frequently do not clean out food particles from fryer, which just worsens the problem.

As far the specific dosage for shrooms i didnt get this recomended dosage from the internet i was fortunate enough to get a hold of a guy that sold shrooms called GOLDEN TOPS and i told him i didnt want these for recreational use i wanted them for clusters and it just so happened that he had another customer he was dealing with on a regular basis that also suffered suffered from ch . He told me that person was taking that specific dosage every 4 days and said on the first dosage you take you start with a higher dosage of between 1 and 1.5 grams to start with then start micro dosing 0.4 grams every 4 days after that so you dont feel the affect and can still function without the sphycadellic affect from the shrooms.What is important to mention when using shrooms and this is also stated in one of Bob Wolds videos that you must stop taking all of the medications you are currently on as he states that the medications interfere with how the mushrooms work in your brains receptors.As for your first question i took shrooms over a period of 5 months and found it more affective than any other medication i had tried.The problem with most medications we take all seem to be abortive treatments once the ch attack has occured but very little on preventative medicines to stop the attacks from even occuring in the first place ,thats where the shrooms were the better alternative.Once i went onto CBD oil called Humacology wich is a broad spectrum oil that contains 0thc,270mgCBD,60mgCBG,10mgCBN with a very low dosage of 0.2mg under the tongue twice a day for iits inflammitory properties ,chronic pain releif my clusters have completly disapeared so i am completely free of all other medications,sumatriptan,verapamil,imgality,and also no longer take the mushrooms.

I use Tiger Balm or Olbas oil or both. They don’t usually stop them, but bring the pain level down. I use Atomic Fireballs under my tongue on the headache side. The fireballs came from a member, Ricardo, who used hot sauce under the tongue. I also use Monster Energy drinks.

in Australia its called humacology i get drug tested alot with my job so had one with 0THC,270mgCBD,60mgCGB,10mgCBN oil

Thanks, Andrew. Would you please give me a recommendation on the CBD oil to try?

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

can you please be specific as to the brand of oil and where you bought it

when the blood vessels become inflammed and dialated they put pressure on the trigeminal nerve which then sends pain signals through the nerves in your face so pure medical oxygen reduces the inflamed blood vessels and return them back to normal and once they are no longer pressing on the trigeminal nerve the pain goes away quiet quickly.since i have started using cbd oil which is a powerful inflamitory i dont even use oxygen theropy any more they have compltely stopped

As I suspected, a few years back there was a reason for the push to use only pharmaceutical grade omega-3, most of the market stuff is garbage. From the venerable Science, which I trust considerably more than Consumer Labs (I won’t disclose), Nordic Naturals and Carlson are the best. I swear by Nordic Naturals, especially the Nemechek protocol approved 2,840mg one (jackpot). Carlson is always sold out on iHerb, Vitacost, and Amazon. It will set you back $40 a month, but you get what you pay for, BIG TIME. The Nordic Naturals Ultimate Omega, Liquid, 2840mg is so potent that mainstream psychiatrists use it as frontline treatment in Borderline Personality Disorder. I know, after 25 years of polypharmacy and most likely a million or two billed to insurance, that in 3 months I am a brand new person that know one recognizes. That is the Nemechek protocol approved choice, even Dr. Amen approves, he produces his own FYI. If you read this far https://reader.elsevier.com/reader/sd/pii/S0889157519305137?token=C58EF8063CA3EE0CDCA9A292D5659882F55A2A8D63A7E4ED57F984890342B97D12E41EF47D1C64E9ED17EEE9782C36E5&originRegion=us-east-1&originCreation=20211210000327

It's been mentioned here before, from time to time. Glad it's helping you!!! (Though I'm not sure I'd abandon the D3 regimen.) Do you not have oxygen (you don't mention it)? I think if you click here you'll see the "search results" page showing times when peppermint oil has been mentioned. You can tell just from the overview that it has been used in several ways. https://clusterbusters.org/forums/search/?q="peppermint oil"&quick=1

I have peppermint oil and a couple other 'pain relief' mixes with peppermint and cleary sage etc, it does nothing for the pain per se, but the scent and the warming feeling helps me tolerate attacks better.

I have not used the peppermint oil but I do use frankincense oil on a little piece of tissue and press it to the roof of my mouth to help reduce the ramp up time and aid the oxygen. I will use it as an alternative to a 5hr drink and it seems to have just about the same effect for me. Frankincense and oxygen combo and I can kill off an attack in 5 minutes most of the time.

My husband brought some home today for me to try... has anyone used this before and if so had any success with it?

Hi friends, I bought a CBD oil called "Charlotte's web". I don't believe it has any THC and it does not have any psychoactive effects. Do you know if it's okay to take this and also take Verapamil? Thanks for your help! Jimmy

Has anyone used this with success? I have only begun and it broke a cycle after 2 uses. I am hopeful and if you know more about it than I do (which wouldn't have to be much). i'd love to hear from you! Thanks, gail

Smelling burning cooking oil can be a major trigger.

Thank you for the information it makes total sense. I decided to try olive oil and see how that works for him.

There's a list of food triggers here: https://clusterbusters.org/forums/topic/4568-triggers/. This is the first time I remember a mention of cooking oil.

Does anyone know if cooking oil is a trigger? I remember years ago there used to be a food list and I can’t seem to find it. Thanks everyone! Doing research for husband.

I don't know if anyone caught the Dateline last night about the cannibus oil stopping epileptic seizures .. Has anyone here tried it for CH ?? any better worse ?? im not talking about POT (thc) ..but the cannibus oil (other chemical in it) for seizures ?? http://www.hightimes.com/read/nbcs-dateline-sheds-light-cannabis-oil-epileptic-kids?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+HIGHTIMESMagazine+(HIGH+TIMES+Magazine)

I'm a new member with chronic CH for the past 18 months. I've read that capsaicin cream can be helpful for CH, but I can't get it anywhere. I made my own by following a basic recipe I found online, for back pain. By simmering a tbsp of chili powder with a cup of olive oil. Put that mix in a jar in the fridge and when I started to have a cluster, I would take a tbsp of the mix, swish it around in my mouth for about a minute and swallow it. I think it might have helped (placebo effect?) for a few CHs, but it's no guarantee. I also did a mix of the above, plus strong coffee and ginger, all simmered together. It was actually delicious, but I don't think it helped much. On clinicaltrials.gov I saw a CH study with a nasal capsaicin spray, but the trial was stopped and I've read nothing about any trials since then. It appears that some drug stores might carry capsaicin creams, but they're for back pain and typically include all sorts of other ingredients for back pain, which could make the CHs worse, especially if you're hypersensitive to odours around a CH. I also read that apple cider vinegar might be helpful with neuralgia and nerve pain. So I made a mix of 70:30 water and ACV, stuck it in a glass jar in the fridge. As soon as I get shadows, I take a sip from the jar, swill it around in my mouth, spit it out, then chase it with cold water. I do this up to five times. Sometimes it helps, I can avoid an extreme attack, or cut it down to less than 10 minutes. I also put straight ACV on a cotton pad and apply directly to the throbbing temple, and to the skin outside the nasal cavity. (I don't put it up my nose.) I do this while doing a sort of "Bohr" effect breathing technique, which is supposed to increase the efficacy of oxygen, by increasing red blood cells. This is one video showing the technique, but when the CH hits extreme, I double the number of inhales/exhales to get more oxygen. https://www.youtube.com/watch?v=UZKivmRajgE Sometimes I do squats in place while I do the above. (It's hard to run around when I have to keep my eyes covered from light sensitivity.) But I do wonder if this diverts oxygen and red blood cells to my muscles, away from my head, which might cause increased vasodilation? Anybody used any of the above as DIY hacks to curb CHs? The ACV is easy to tote. I plan to start on the oxygen therapy protocol one of these days. But so far my clusters are extreme for about 15-30 minutes (and I'm lucky that I typically only have one per day) and I'm not sure if oxygen will help since I read that it can take 15-30 to get relief. I just started the vitamin program, though I'm only at 5,000 IUs of vitamin D daily (and the required combo of cal and mag) right now. Thanks for any feedback. This forum has provided me with incredible info and support for the past year. At first I wanted to believe the pain was due to an impacted max wisdom tooth. And the lidocaine sure did help for a few days post-extraction. But then I had to face the music. For 18 months I've taken none of the meds recommended for CH, and learned a lot from this group about which ones to avoid. I dream of remission, even for a month. Yet I realize I'm incredibly fortunate to have one per day, and sometimes a day off in between. Once I had four in a 12 hour period. My definition of grateful sure has changed since the CH started.

Lots of good comments on when to dose. The basic rule is take these supplements with the largest meal of the day. This is particularly important for the mineral supplements as large meals trigger the release of more stomach acid and this helps dissolve the mineral supplements. The oil based supplements can be taken at any time. That said, taking everything with the largest meal is the best way to go. As far as the labs go, obtaining them before start of treatment with the supplements establishes a baseline to help measure progress. In simple terms, your assay for 25(OH)D3 should increase by at least 60 ng/mL (150 nmol/L) by day 30. Don't be concerned if your serum 25(OH)D3 concentration goes over 100 ng/mL (250 nmol/L). I've run my serum 25(OH)D3 concentration up as high as 272 ng/mL. I'm still here at 79, CH pain free and doing just fine. My PCP did go into fibrillation the first time he saw it that high, but calmed down when he saw my serum calcium was within its normal reference range and all my other annual physical labs were in the green. The calcium assay may rise to the top if its normal reference range but not over.. PTH should start dropping towards its minimum level within the normal reference range. A drop in PTH is the second best indication vitamin D3 is doing its thing properly. Stopping the CH is the best indication. For CHers new to this treatment protocol, I and many other CHers who use the Bio-Tech D3-50 50,000 IU water soluble capsules have found loading vitamin D3 at 100,000 IU/day for six days gets us CH pain free a lot faster. There's a lot more info in the Quick Start Guide. Take care and please keep us posted if you've just started this treatment protocol. V/R, Batch, a.k.a. XXX

In the middle of a cluster cycle, going to try the D3 Regimen. Wanting to make sure I have things straight by combining the updates I've read on here from Batch plus the original instructions. Can someone check my homework here? Products: Nutrasal Micro D3 - High Concentrate Vitamin D3 Bio-Tech - D3-50 50,000 IU, 100 Capsules Nature Made Extra-Strength Magnesium 400 mg Kirkland Signature Mature Adult Multi Vitamin Tablets Nature Made Burp-Less Fish Oil 1200 mg One Elevated Methyl Folate+ Life Extension Super K Now Vitamin B-50 Instructions Load (1 week): 0.5cc, Daily Micro D3 Two pills, Daily: Fish Oil Magnesium One Pill, Daily: Bio-Tech D3 Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) Taper Down (1 week): Two pills, Daily: Fish Oil One Pill, Daily: Bio-Tech D3 Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) Maintenance: Two pills, Daily: Fish Oil One Pill, Daily: Magnesium Kirkland Multi-Vitamin Methyl Folate Super K Vitamin B-50 (for 90 days, then stop) One Pill, Once a week: Bio-Tech D3 Labs to request: Before starting / 1 month / 3 months / 6 months: Serum 25(OH)D3 Calcium PTH (Parathyroid Hormone) Notes: If any allergic reactions occur, stop taking immediately and consult with doc