MoxieGirl

Good point, well presented FunTimes. Oxygen is your best friend. And check out the Vitamen D3 regimen. There's plenty of information about it in the Clusterbuster Files section. You can start on that right away and it won't (shouldn't) interfere with anything else you're taking. MG

Hi Headsufferer, Welcome to the forum, really sorry you have to be here. In 2006/2007 I transitioned from male to female, and the hormones I took altered my hypothalamus, which, among other things, impacts headaches. I've always had periodic migraines, they run in the family. But in Jan 2007, I was diagnosed with daily chronic headaches, chronic migraines and cluster headaches, which turned chronic. From 31 Dec 2006 - July 2007, I had one constant non-stop headache + migraines and clusters. In 2011, I had 257 cluster attacks, 276 daily headaches and 42 migraines (each lasting 3-7 days). Not sure we can solve all your problems, but there is hope. Trust me, there is hope. By Nov 2011, I was getting 2-5 severe cluster attacks every 2-3 days. It was then that I sat down to put a date in my calendar to exit planet Earth, and then I remembered this forum, and logged on. I had given myself one year to find a solution. And hey, I'm still here. You can be too. I weened myself off of topiramate and started busting on 14 Dec 2011. I still have chronic cluster headaches, maybe 2 or 3 a month. They last 30 seconds to a few minutes on average, and although they can be sharp, I wouldn't call them painful. In 2012, after I started busting, I only had 3 migraines. I was seeing a neurologist at Addenbrooke's at the time, btw. He too had thrown his hands in the air as to what to do next. That was one of the reasons I started treating myself. As for restless leg syndrome, I stopped having caffeine after 5pm as my restless leg usually happened at night. No coffee, no soft drinks. I also found having a hot bath or spraying hot water on my legs when they were being restless helped. And, get exercise if you can - although I appreciate that is difficult. As for clusters and migraines, start reading the Clusterbuster Files section. Go through it with a fine toothed comb, especially the bit about playing well well others. You may find some of the meds you're currently on will prevent the methods we talk about here from working. And yes, they do work. Oh, and busting will also help with the depression. As far as epilepsy goes, cannabis I think is good for that. For some people, it makes their clusters worse, so tread carefully. Your daughter sounds absolutely wonderful. I hope we can help so she doesn't have to worry. MG

Well, that is the million dollar question.

MG's rule on clusters: No two cluster sufferers are the same, and just as soon as you figure your's out, it changes. Over the years I've seen lots of people mention a change in their cycle for no apparent reason. They tend to have a mind of their own. Have you had a change in circumstances in your life? Stress increase or decrease? Move to a higher or lower altitude? MG

Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG

MG's first rule of clusters: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Really glad you found a system that works for you. A lot of people report that physical exercise helps with clusters, and a good diet low in processed foods and sugars is always a good idea. I'm sure you'll find people who find this method works, and just as many that don't. As an example, for most cluster headaches, alcohol is a massive trigger. But not for me. In fact, I can use it to abort a migraine if I have to. We are all different. MG

Hi JJ, Welcome to the group, sorry you have to be here. Just for the record, Chiropractors totally rock! They crack a lot too. You may find you’ll need to educate your doctors on the best treatments for CH. You won’t be the first person in the medical world that has been treating people for years, and have never come across someone with CH. It’s rare and little understood. Part of me needed to go down the Dr route when I was first diagnosed. In hindsight, it was a waste of 3 years, until I found this group and started busting. But I had to exhaust all my options before I started experimenting on my own. If you can skip that, and are confident enough to try the methods we talk about here, you might be able to nip this in the bud relatively quickly. Not to imply it’ll be easy, or quick. But maybe months instead of years. My understanding is that on a scale of 1 - 10, where 10 is your worst ever cluster attack, heart attacks rank a 6 or 7. I don’t think I’ve heard of clusters being linked to post-dental work, but I’m not surprised by it. They are linked to the Trigeminal Nerve, which runs through the face and neck, and jaw. This is why they often attack in the eye, in the same place you get brain freeze from eating something cold. As you may know, when you eat something cold, the pain can refer up the Trigeminal and appear to be in your eye, when the source is actually in the roof of your mouth. If the surgery impacted this nerve, that could cause Trigeminal Neuralga or possibly Clusters. I’m not an expert, not even close, but I don’t think it’s a huge leap. Don’t hesitate to ask any questions. We are here to help, and start reading through the Clusterbuster Files section. It is loaded with good information. MG

No, never heard a connection to the liver. Mine started when I was on HRT, and changed my body from a Testosterone based system to an oestrogen based one, and it screwed up my hypothalamus. Clusters are linked to the hypothalamus in the brain, which controls the body clock and body temperature, among other things.

Hi MaskedMarvel, (good nick, btw) Welcome to the group, sorry you have to be here. Most people, probably 90% or so, find alcohol to be a trigger, and many also find pot to trigger attacks. I don't with either item, thankfully, but many do. Many people use alcohol to see if they are out of cycle or not. Obvious advice, avoid them for a month or so. Means an alcohol free New Year's, but better than the alternative. No idea about CBD oil and its affects on clusters, others might comment. Waiting 3.5 days between shrooms is good, 4 days is better. We typically recommend 5 days, but it sounds like you are already aware of that. Often, after busting, you'll get what we call 'slapbacks', which will be oddly timed attacks, or stronger, or sharper, or shorter/longer, etc. Basically, an attack that doesn't fit into the norm. This is a good sign that the shrooms are working. But, it sounds like CBD oil might be holding these off, which is interesting. Most people find it difficult to stay still during an attack. Cold, fresh air should help, along with a cold drink. Caffeine, coffee, energy drinks are all also really good to abort attacks with, I usually keep an energy drink in the fridge for just such an occasion. For more serious aborting methods, look into high flow oxygen. I don't know a lot about it personally, am sure others will jump in with advice. Also, read up on the Vitamin D3 Regimen (aka Anti-Inflammatory Regimen). It's very effecting for a lot of people. You'll also want to read up on busting between cycles to prevent cycles. All this info is in the Clusterbuster Files section. As a trained massage therapist, huge thumbs up for myofascial release techniques. I generally find massage helpful for several forms of headaches, and stretching and releasing your soft tissue is a huge benefit. Don't give up hope. I was suicidal before I found this site. There are solutions and ways of managing this illness. Hang in there, and ask questions, we're here to help. MG

Thank you everyone for your kind words. Life is moving forward, albeit slowly. MG

I agree. Weekends used to be my worst time for attacks. Usually about 10 minutes into settling down to watch a film. For me, high stress triggers migraines, and sudden drops in stress triggers clusters. Life is a balancing act of stress. Friends were often puzzled by how I always kept busy doing things, I always had a To Do list of things to do, but this was so I could manage and control my stress. If I had things to do, I could keep my stress slightly elevated, but controlled, as I could take things off the list if it got too much. It meant I could ease myself into the weekends and avoid that drop in stress and a cluster attack. MG

Hi Maria and husband, I live in England, and will help if I can. Although I don't get on the board as often as I'd like, but will make a fresh effort. I was originally diagnosed by a neuro at Addenbrooke's, one of the best headache specialists in the country I believe. I have chronic daily headaches, chronic migraines and chronic cluster headaches. I can easily have 300-500 headaches of one type or another in a single year. To be honest, the people and methods on this board were more helpful than anything the doctors gave me, but is worth trying the different things they have on offer, as it does help some people. Oxygen should be high on your list as an abortive, the Vitamin D3 regimen is also really good, and Batch is a very helpful fellow. When I started busting, I was getting 2-5 cluster attacks a day, ever 2-3 days for about a year. Each attack was lasting 1-3 hours, or more. Then I started busting, and now I get about 1-2 attacks a month that last 1-10 minutes. I sometimes have a really rough one that lasts 20-30 minutes, and is maybe a KIP 5 or 6. But that's only 2-3 times a year. Migraines are my challenge at the moment, I'm quickly approaching my 250th for this year. Hang in there, don't lose hope, there are things that work even if the doctors don't understand them yet. MG

I've not been on the board very much this year because most of my energy, time and attention has been focused on caring for my best friend in the world & housemate, who was diagnosed with Motor Neurone Disease (a.k.a. ALS/Lou Gehrig's Disease) about 2 years ago. I had quit my job, shut down my company, and gave up everything to stay at home and care for her. MND is a horrific way to die. She sadly passed away 2 weeks ago. I'm now trying to put my life back together and move forward. Moving house next week and job hunting again, on top of sorting out my friend's estate, funeral plans, etc. etc. On top of that, I will have had about 250 migraines before this year is over, plus another 80 normal headaches and 40 or so cluster attacks (although these are generally quite minor). And if that sounds like a lot of head pain, it's actually one of my better years. So that's where I'm at heading into this holiday season, although I don't feel much in mood for celebrating. MG

Hi, I tried the D3 Regimen a number of times several years ago, and each time I started on it, my urine would turn to acid, and burn like ****! My neuro at the time thought the high levels of Vitamin D3 was reacting to the Topiramate I was on. But, I tried it a year or so later, after no longer being on Topiramate, and same thing happened. I think my body struggles with that much D3. Batch and I have spoken about it several times, and I'm the only person who has reported this. I do think about trying it again one day, but not sure I can bring myself to taking that many pills a day again. MM has pretty much reduced my clusters to a point where they are no longer an issue, so I'm not that fussed about it. Important to remember that everybody is different, and every one reacts differently to the same meds. MG

Awesome news Bjinno, My rule for clusters is this: No two cluster heads are the same, and just as soon as you figure yours out, it changes. Many of us have found things that work for us, but no one, or only a few, other people. I hope this proves to be a long-term fix for you, and it is worth trying anything and everything. But don't suspect it'll be a cure for everyone. Like THMH said, many have tried this remedy. Hang in there, and lock up that gun. MG

That's pretty consistent with what a lot of people on this forum have said. Pot helps me get to sleep at night and puts a stop to insomnia. The better I sleep, the fewer migraines and clusters I get. So it's an indirect benefit, but an important one.

Hiya, I'm chronic, so can't address your questions about triggering episodic periods. But, from what I gather, they happen when they happen, and not sure if anything can trigger them, per say. When my clusters were bad, the lack of sleep was a big trigger for individual clusters. I had figured out that I could have 1 late night a week. 2 late nights, or worse, 2 back to back, and I was sure to get hammered by clusters and/or migraines the following day or two. Then, of course, I'd find myself being over tired from the attacks, which would bring on insomnia. It could quickly become a downward cycle to Hell. Shadows are a real pain as well. They are really good at zapping your energy, and making one over tired when they do try and sleep. MG

Interesting article. I didn't seem them mention massage. Massage is awesome for managing stress and helping with chronic pain. Oh, and yes, clusters can be chronic. Maybe not in the sense of 24/7, like some chronic pains are. But I've have chronic clusters since they started in 2007. :/ My approach is simple. Life is what happens between headaches. MG

This article came up in my daily newsletter regarding cannabis in the UK. It's an interesting read, and even talks about cluster headaches, as well as migraines, daily headaches, stress headaches, etc. The Use of Cannabis for Headache Disorders MG

Weed helps my clusters, but indirectly. I had figured out that if I didn't get enough sleep, I'd get slammed with clusters. My rule is: 2 late nights a week are OK, but never back to back. More than 2 late nights or 2 back to back, and I'm in serious danger. Also doesn't help when I have insomnia, and just can't shut down and get to sleep. This is where weed comes in. It helps me got to sleep, which means I have a better and longer night's sleep, and thus fewer clusters. As far as shadows go, to me it always felt like the beast (aka demon) was a creature of black smoke, and he would hide and lurk behind trees in the distant corners of my mind, ready to attack when I wasn't watching. I could feel him there, watching me and waiting for his chance. MG

Hi bbbanne, Welcome to the group, sorry you have to be here. First off, many (most?) doctors are pretty useless when it comes to clusters. It's just to unknown, and most GPs don't have spare time to keep up to date with medical journals. Often it is up to us to educate our doctors. Push to get referred to a neurologist, they generally have more of a clue, and some are pretty on the ball. There are even one or two amazing ones out there when it comes to cluster headaches. I have chronic migraines (they run in my family and I've had them all my life), and I have chronic cluster headaches, which started in Jan 2007 (I also have daily chronic headaches, but now I'm just showing off). Migraines are VERY different from clusters. Here are what mine are like, and some of this may ring true with you too. Migraines Pain is in both eyes, or across the forehead, or spanning other parts of the head Can't move my eyes or head without extreme pain Super sensitive to: smells, sounds, light, heat, cold, touch - pretty much everything really Triptans + Anadin usually aborts my migraines (Anadin is paracetamol, caffeine & aspirin) Feel sick to my stomach about every third migraine Can last from an hour to 7 days Comes on slowly Clusters Typically one sided (although I have had 2 or 3 over the years on both sides of my head, but it's rare. Might have been 2 clusters at the same time?) 95% of the time it is in my eye, right where brain freeze occurs from eating something cold. The other 5% it's in my temple. Lasts a few minutes to 3 hours Comes on suddenly (like being hit in the face with a baseball bat), but is sometimes preceded by a headache or migraine, and I'm sometimes left with a migraine afterwards Before I started on the remedies suggested here, I always had a 20-30 minute post traumatic/panic attack after every cluster headache Head and thoughts are fuzzy and confused after an attack. Never thought of it as a hangover before, but that works as well as anything. Groggy, just not with it, dazed, struggle to have a clear thought. This is true even if it was a 5 minute attack, and can sometimes take me 4+ hours to fully recover mentally Most people say they struggle to stay still (whereas with a migraines, any movement hurts). But I tend to lie on my bed and either rock back and forth or drift off in thought, trying to escape the pain. As far as pain levels go, here is how I describe it. If the pain of a headache is equal to the Moon, then a migraine would be the size of the Earth in comparison, and a cluster attack would be the size of the Sun. When my clusters were really bad, I was always amazed that furniture and things in the room weren't slammed against the far wall from the sheer force of the pain I felt in my head. It felt like there was a tornado in my head, and I expected everything around me to be as destroyed by it as my head was. If I could have a super power, I'd like to be able to touch someone and (if I wished it) give them a 5 minute cluster headache. I always think that would be the best way to get the point across that it isn't a normal headache or even a migraine. MG

I so wish I lived near Connecticut. And I don't normally wish I lived anywhere in America. :/ Gail, you might be better off starting a new thread in the Theory and Implementation section, people will have a better chance of seeing your request there. If you live in the UK, PM me and I'll see if I can help in one way or another. MG

MG's cluster headache rule: No two cluster heads are the same, and just as soon as you figure yours out, it changes. My cluster attacks are almost always in waves. It's not a constant, steady pain, but a slightly varying one. Here is a description of 1 of my 2 worst ever cluster headaches. I had not long climbed into a hot bubble bath when the cluster started. At first it was like someone tapping just above my eye with a nail and hammer. That quickly increased to an ice cold, burning razor cutting across my forehead. And, within minutes, this skyrocketed to the next sensation - a crow bar. I grew up on a farm in Iowa, and we had these really, really heavy steal crowbars that you could lift a tractor with. They were about 3 feet long, with a sharp wedge at both ends, like a large screw driver head. The sensation I felt for the next 45 - 60 minutes was like someone slamming this sharp end of the crowbar into my forehead above my left eye, and prying it back and forth until it was sunk into my skull. Then they'd pry my skull apart until my brains started to ooze out. Then, they'd remove the crowbar and the wound would heal back up, which was nearly as painful as it splitting apart. As soon as it was healed, the crow bar would slam into me again. The pain was in waves. Sharp and hard, like being hit in the head with a heavy steal crowbar, followed by slightly less pain, but a ripping and tearing sensation. Followed by a burning as it felt like it was all coming back together again. And this just repeated and repeated and repeated until the water in the bath was cold. Pulsating is a good word to describe my clusters. MG

The people here totally rock! To say they saved my life is not an exaggeration. MG

Hi Bonds, Welcome to the forum, sorry you have to be here. I get 1-3 clusters a month, but that is after taking home grown remedies for several years and beating the beast back from 2-5 a day. Mine are pretty random though when they occur. There is a good post here on tracking your attacks. I'm don't always agree with the descriptions used in the KIP scale, but it is a good guideline, and is what everyone uses to express the pain levels. It's explained in detail on that link. MG