MoxieGirl

Hi gang, Just got back from seeing a "headache specialist" at my local neurology department. Her thick accent and my bad hearing probably didn't aid the appointment, but she could have really been a better listener. I'm going to rapid fire questions at you and only give you time for a yes or no answer, with no chance to explain, because we are on a tight 10 minute schedule and I don't care that you've had migraines all your life, cluster headaches for 12 years and once had a headache last 7 months - I have other patients to give 10 minutes too, so chop chop!!! Well, that's how it felt anyway. Of course, I've not seen a doctor at THIS hospital before, so was smart enough to bring in all the letters I had from my previous neurologists, 'cause I knew she wouldn't have a clue about my history. The main option she gave me was for a Greater Occipital Nerve Block, or Botox. Or, at least I'm pretty sure she was on about Botox, really couldn't understand her thick accent. And, of course, my best friend wasn't there with me to translate because she's dead now. So I was pretty screwed. Anyway. Has anyone had one of them there nerve blocks for clusters or migraines? Any thoughts on the procedure? I'm not keen on turning off nerves. Something tells me they are there for a reason, and I'd really like to solve the problem of migraines instead of just stopping my ability to feel them. I hate doctors. Apart from 1 or 2, ok, 3. But all other doctors are morons. I didn't even get a chance to ask the questions I wanted to ask, but I did get a strong vibe that this woman was not going to prescribe me cannabis, even though I know it helps. Oh, she did give me a single sheet of paper on which she wants me to keep a headache diary on. This is despite the fact that I took in 9 SHEETS of paper that I printed from the headache database I have been meticulously keeping for 9-1/2 years! These were graphs and summaries of every headache, migraine and cluster headache I've had since 2010. I can also print out a list of every triptan, pain killer and preventative I've taken. But, let's just ignore all that and fill in this stupid sheet of paper. Dumb ass. *Sigh* Mox

Hi, Big hugs to both you and your wife. Sometimes, it is harder for the loved one than the clusterhead. It's tough to stand by, unable to help. The Beast likes to change things just when you get used to its schedule. Hang in there. D3 is good, well worth trying. Also, worth reading the numbered posts in the Clusterbuster Files section to learn about busting options. But that'll mean coming off topiramate. My experience with Topiramate is that it made them worse, and has a scary list of side affects. I was on it a year, and it took me to the edge of suicide. I'm not a fan of it. Busting and D3 are (in my opinion and experience) the best methods for stopping the beast. Mox

Hi MJ, Sorry to hear about your wife and your friend. I do believe that talking or reading about clusters can trigger clusters. Other people on the forum have said the same. I know when I was getting a lot of clusters, spending time on the forums would trigger them. But, it's all very subjective. I've never used O2. Will do if they come back in force. Once your wife goes through all the more traditional methods, we'll still be here. Hope she finds something that works for her. Mox

Hi Siegfried, I've never known migraines or clusters to go away with age. Of course, everyone is unique, and I'm sure they will for some people, but I don't think it's as common as people claim. Migraines suck, and I hate how a cluster can leave a migraine or headache behind after an attack. Like, insult to injury. Hope the flu goes soon. Mox

I Zookah, My sleep pattern is a little erratic at the moment, but I'm generally getting enough hours. I used to have a very regular sleep pattern, but life has changed. If I have cannabis in stock, then my sleep pattern is pretty good and I can shut down the insomnia. If not, then it's whatever. Although alcohol isn't a trigger, I'd don't actually drink much. In fact, I've been shying away from alcohol for a month or two, just having the very occasional weak drink. I'm on the verge of cutting it out entirely for no other reason than I can and I want a break from it. Cutting down on a lot of things fattening, actually. So, it's not influencing things one way or the other. I'm not sure that they are coming back, things have settled back down since posting this. I may have just had a spurt of them or something. Mox

Paul, That is a GENIUS idea. Do you mind sharing the links with us that you use? This is a pretty good description, although light on the pain element: OUCH Uk - What is a Cluster Headache Mox

My problem is I have daily chronic headaches and chronic migraines. I'm getting 25-35 headaches/migraines a month, and have been for a long time now. So that's not an indicator in my case, sadly.

Thanks for the info. My problem at the moment, is that I'm getting so many migraines, and having to take so many triptans, I can never get 3-5 days clear of a migraine in order to bust. I need to bust, need to stop these migraines and prevent the clusters from coming back. Alcohol isn't one of my triggers, so can't test them with that. My clusters, for the last year or so, last a matter of minutes. But, they are getting longer, 15-20 minutes. Which I know is short, but it's a sign they are changing. Not looking forward to them returning to 45 min+. Mox

Question for my Episodic friends. When the Beast returns after being away for awhile, how does it do it? Does it pounce on you without warning with a full-force cluster attack? Or does it give you some warning, build up over a few days, for example? I've had more clusters this month than normal, and they are getting longer and sharper, with more intense after affects. And, closer together. I've had 3 in the last few days when I normally have 1 a month, maybe two, but very spread out. It feels like the beast is roaming around the outskirts of my village, poking at the boundaries, preparing for a proper attack. Testing my defences. Is that normal? Should I be worried? Mox

Hello MJEdwards, My heart goes out to your and your wife. My first rule of clusters is; no two clusterheads are the same, and just as soon as you figure yours out, it changes. And I don't believe it is a bad thing planning for the worst. Plan for the worst, hope for the best. Sounds like you already have the key bases covered, and Batch is a wonderful man, very helpful. And yes, busting is awesome for anxiety as well. The nice thing is, you could prepare busting materials, as it can take 2-3 months, then put it in the fridge or freezer and keep it on hand if ever needed. I put mine in capsules, which makes it easy to store and take. Mox

Hi Paul, Welcome to the forum, sorry you have to be here. Looks like you're getting good advice from Freud. He's a good man, and a good friend, with lots of experience on these matters. I've been on CH forums since mine started in 2007, and every so often the conversation of the name 'cluster headaches' comes up, and I don't know of any sufferer who agrees the name is apt. You're right, they aren't on the same scale as a headache, not even in the same universe. And, not everyone (like Freud and myself) have them in clusters. I've been chronic since they started in 2007, although thankfully, shrooms have allowed me to bring them under control and they no longer disrupt my life. Personally, I call them 'cluster attacks', because that's what they are, and attack. I think one of the greatest powers of this forum, and others like it, is to let people know they aren't alone. The pain, fear and frustration you feel is felt by others, and we do get it. And, even more so, there is hope. There are things that work, even if they aren't doctor approved. It is possible to get on top of this beast and get your life back. Not always easy, but possible. Mox

Freud, OMG Dude! You have really put your body through its paces. xx Mox

Apology accepted. Sorry if I came off strongly. Mox

I'm not complaining about the post or the information it contains. I'm a strong supporter of trying anything and everything. But having multiple threads on the same topic is confusing for people and makes it difficult to get a clear message across, and actually makes it feel more like spam and a scam. If it's genuine, then one post is more than sufficient. I'm offended that you call me lame. I'm not lame, I'm just trying to get good, accurate information out there, and support others doing the same, to the people that need it. Multiple threads confuses the matter. Plus, posting the same post twice isn't 'more people reaching out', it's the same person spamming the forum. And if you were to look at the other post, you would see that I updated it with both a link to Dr Deborah Carver-Hodges YouTube video (which the OP doesn't do) as well as a link to the original study (again, not in the OP). I also sent Dr Carver-Hodges a long email (after tracking down her Credentials and confirming that she is a real doctor, which she is) this morning requesting more information about the Keto/MAD plan, and if she has any recommendations that I can share with the forum for those that want to try it. But you're not going to see that because there are 2 threads about the same topic, and people will get confused and won't be bothered to follow them both. Having been an active member of this forum for over 7 years, I have seen solutions for CH on just about every possible topic. When someone brand new comes onto the forum and in their very first post starts spouting-off they have found a solution, and it is worded in a way as the OP, with a reference to a video but not a real link or a link to the original data, my first response is a very suspicious one. This is why I spent OVER AN HOUR this morning researching this. This is why I found the video and emailed Dr Deb, and why I tracked down the original study. After doing that, I thought, 'there might be something here people will want to know about', and I posted my findings. But then the OP posted it again, turning it into spam, and again, my suspicions are standing on end. And being called lame has rather got my hackles up. I suggest we let people do their own research, and chime in with their own experiences, and perhaps a kind Mod will merge the threads (if they can do that) so that people aren't confused. If not, I will kindly repost my findings from this morning here, and they can delete the other thread. Might I suggest in the future, if you are new to the forum, make a nice introduction and get to know people a little bit, then explain about the wonderful solution that is working for you, and if others would like to try it, where they can go for more information. Lastly, I shall repeat my golden rule on clusters: No two clusterheads are the same, and just as soon as you figure your's out, it changes. Mox

In the UK you can buy a product call 4Head, which is in a large lip-balm type tube and your rub it on your forehead if you have a headache. It has a strong smell, almost a Vix Vapour Rub odour type thing. Doesn't do anything for me, but you never want to lift your head very quickly so that it get wafted down into your eyes. That's no fun AT ALL. LOL Mox

Ok, as we're on the topic... I've never made it a secret that I'm active in the BDSM lifestyle. In this world, we have a coupe of head spaces we call 'subspace' and Domspace'. If you're a submissive, and you are really lost and absorbed in a 'scene' (e.g. sexual type activity) then we say you've gone into 'subspace'. It is sort of like deep meditation and you become unaware of your surroundings. Still in control, just not so connected. If you're a Dom, you can also go into a similar sort of focused head space, but you are ultra aware of your surroundings and everything going on, especially with regard to the person you're playing with. Domspace is how I imagine the Force to be, if the Force were real. It's like you can almost feel what the sub is feeling, and are aware of everything around you at the same time. I have found on many occasions that Domspace will make the pain of a migraine or headache completely and utterly vanish, only for it to come back full-force once the scene is over and normal life resumes. When I had my 7-month long headache, it was the only time I was ever pain free between Jan and July 2007. Unfortunately, subspace never took away the pain, just made it more real. Mox

But it's been posted already, in the Theory board. Doesn't need to be spammed. Mox

Hi grivkels, Huge massive hugs to you my friend for dealing with clusters while going through school. As if high school isn't tough enough already. I'm sure several people will be more than happy to join in with ideas and their experiences. The first 2 things you'll hear about are O2 and Vitamin D3 Regimen. High flow oxygen (O2) is every clusterhead's best friend. It can cut a 3 hour attack down to 10 minutes. You'll need your doctor to prescribe it, or get a tank from a friendly welder and make the modifications yourself. It is our first go-to option for aborting clusters. The Vitamin D3 Regimen is a good method for preventing clusters. Details of it can be found in our Clusterbuster Files section. It is essentially a list of vitamins and Omega 3, a few in fairly high doses. But has something like an 83% success rate for reducing or stopping clusters, is completely legal and (pretty) safe. Worth doing it with your doctor's consent, as there are some blood tests that are worth doing, but that isn't so essential. Hopefully Batch, the inventor of the D3 Regimen will jump in soon with his input. Not sure how many teenagers have tried it, but Batch will know. Energy drinks and coffee are also helpful for aborting or recovering after an attack. Caffeine is our friend. If you want more specific information, or have specific questions, feel free to ask. There are good people on this forum with a lot of knowledge. Oh, stress! Stress is a big trigger for clusterheads, or actually, the lack of it. Most of us find that a sudden drop in stress (or pressure, e.g. air pressure) can trigger a cluster attack. If you find you get hit more in the evenings and weekends rather than when you're at school, it is probably stress to blame. Your stress levels are higher at school, then drop in the evenings/weekends, and BAM! That's when the beast comes for you. Learning to manage and balance your stress levels, so they don't go to high or drop to low too suddenly is a big key (at least for me). Mox

Just watched the new episode of iZombie (awesome show if you haven't seen it). Season 5 just started, and in it, cluster headaches were mentioned. Essentially, zombies and humans are living together in the now quarantined city of Seattle. You can only get in or out of the city by applying for permission, and someone applied to be let in, and made into a zombie because they have clusters, and their only other option is to kill themselves. At least in TV world, being dead or undead are both better than being a clusterhead. Mox

I've had masturbation trigger clusters and migraines before. Fap carefully. Mox

Here's a comparison I use between Headache, Migraine and Cluster.

Yeah, well, that's an interesting list, but I'm not so sure about the tumeric. Mox

Keep us posted my friend. I've never heard of boswellia serrata (have of course heard of frankincense). Sounds interesting. Do you snort it? Smoke it? LOL xx Mox

Hiya, The way I identify my different headache types, is like this: Headaches - general pain, anywhere on head, annoying and distracting. Migraine - more painful than a headache, super duper sensitive to everything - movement (even moving my eyes hurts), head movement, standing, walking, sound, smells, light - especially light. Sometimes even being touched hurts, and even thinking. Sitting still in a dark and quiet room is often the only way to manage the pain till the triptans kick in. I definitely could not exercise during a migraine, I can barely roll over in bed. Can be anywhere on the head. Cluster - intense pain, one sided, but it doesn't impact movement or sensitivity. I'm fine with light, noise, smells and movement. I often say that if a headache were the Moon, then a migraine would be the Earth and a cluster the Sun, in relation to magnitudes of pain. The super sensitivity issue is the big difference. If it hurts to move my eyes or to have the lights on, a migraine. If not, a headache, and if my hands fly to my eyeball of their own accord and try to push it out the back of my head, a cluster. Can't recommend O2 enough. Although, I've not used it myself. But, everyone else on this forum will highly recommend it. It should be the first thing doctors prescribe, and it can cut a 3 hour attack down to 10 minutes. I never used it because I started Busting, which sorted out my clusters before my GP could get the O2 approved and through the system. Not all triptans work on clusters, and those that have them usually have a self-injector or nasal spray, as the capsules just take too long to kick in. Have you found any posts on the Vitamin D3 Regimen yet? It's worth having a look at (look in the ClusterBuster Files section). Although, it sounds like your body may not bode well with too much Vitamin D. But, worth checking out all the same. Mox

Hi CAClusterHead, Welcome to the group, sorry you have to be here. Life is, as I say, what happens between headaches. I think I've only come across one or two cases where the clusters lasted longer than the predicted 3 - 4 hours. I personally, have had 4+ hour cluster attacks, but don't think they ever exceeded 5 hours. Those were some hellish days. But that doesn't mean they aren't clusters. And as you also have migraines (they also run in my family), I'm sure you have ways of telling the difference between them. Not going to insult you by saying, 'are you sure it's not just a migraine'. As if migraines are trivial events and you can't tell them apart. It's interesting that it maintains a constant pain level throughout the period. I know Shadows can last that long, but I don't know how painful they are. My perception of Shadows are different I think than most people's. Have you tried doing something physical during this time? Running, cycling, etc? Some people say physical activity can sometimes abort a cluster, and if it's a low level cluster like that, lasting that long, might be worth a try. Twice I've had a cluster span both sides of my head, even though the 'rule book' says they are always one-sided. Or, and this is probably more likely, I had 2 clusters at the same time on either side of my head. Again, those weren't fun days. Have you tried using energy drinks or coffee to abort? Oxygen? What else is in your inventory at fight back with? Mox