MoxieGirl

Yeah, mine gets louder when I'm having a cluster attack, when I'm mushrooms or cannabis as well. It's like someone turns up the normal volume of 1-2 and cranks it up to 7 or 8.

CH is quite rare and not very well understood, even by the 'experts'. It takes publicity and funding to get more doctors and scientists involved in finding a remedy. We need something like the ALS Ice Bucket Challenge - which I couldn't do because cold is a cluster trigger for me! Until then, we have to be our own scientists, doctors and test subjects. I believe where the medical community lets down the most is in not being able to diagnose the condition quickly, and to provide the most basic abortive options. MG

To answer the question posed in the title, because doctors are idiots. It's like when you phone tech support about your computer or phone, and their first suggestion is 'turn it off and back on again'. To be fair, as an IT consultant, that does solve the problem a surprisingly number of times. But when doctors apply that same default answer without actually listening to the person, it really pisses me off. Guess you could take a stun gun with you and zap them between the eyes, saying 'it feels like this'. No, just joking. I don't recommend doing that. LOL Have you seen a neurologist yet? They tend to have a bit more of a clue about clusters. Just a bit mind you. MG

I often say we have to be our own scientists, doctors and test subjects on this road to finding a remedy.

I have been diagnosed with... Chronic Daily Headaches Chronic Migraines Chronic Cluster Headaches Years ago I used to get Ice Pick Headaches, which last 5-10 seconds and feel like an electric shock going across your forehead, but haven't had them in a very long time. Dec 31, 2006 at 9:10pm I got a headache that lasted 7 months. It finally started breaking up, and I'd have a few pain-free days in July and August of 2007. Jan 2007 is when my clusters started to, so all that year this one headache was punctuated with cluster attacks and week-long migraines. Last year I had 35 clusters (most lasting a few minutes), 90 headaches and 179 migraines. It was a bad migraine year, but overall my best year since they started in 2007. My worst year (apart from 2007) was 2011 when I had a total of 575 headaches, migraines and clusters. Last year was only 304 in total. This year, if I can keep my migraines away, I may actually have less than 200 in total, which would be totally rocking! Overall, I average 30-50 headaches of one type or another a month. So no, you're not the only one. MG

Hi Sid, Here is my Seed Recipe that I found works quite well. Moxie Girls Seed Recipe . It's in the files section, and will require a login account if you don't have one. Not sure about preventing clusters out of cycle. I'm chronic, so always in cycle. MG

Take care DD, I hope things go well for you and your wife. xx MG

Hi Onglamesh (great nick btw) Would your partner be interested in creating an account on the forum and talking to others here? It might help her get a bigger picture perspective, and hear from other people that can collaborate your story. The pain levels of CH are pretty unbelievable and difficult to grasp for someone who hasn't had them. Heck, migraines are hard enough to understand if you don't suffer with them, and CH blow migraines out of the water. Also, try to get her involved in supporting you. I always hated how my best friend felt so helpless when I was having bad attacks. So I asked her that when an attack starts, to make sure I had a glass of cold water nearby, and an energy drink if I had one in the fridge, and a coffee if not. And then, during the attack to just give me space, as there's nothing anyone can do anyway. Then, as the attack fades, make sure my glass of water is refilled, as clusters really dehydrate me. I hate it when people stand there asking 'is there anything I can do' at the precise moment I'm unable to turn thoughts into words. I want to scream 'cut my head off', but that's not very productive. So I found if I gave my friend standing instructions of what to do during an attack, she didn't feel helpless or at a loss of what to do. She was then suddenly involved, and was able to tell other people to just leave me be, that I'd be OK in a bit. Wikipedia Article this is a good, brief summary of clusters, if she's up for reading it. MG

Hi CoryAnn, This is very interesting, and quite scary. I have migraines, nearly 200 last year (was a bad year). I pop Zomig and Eletriptan like they are M&Ms. I'm probably taking 4-8 a week on average at the moment. I've asked Google, and found a couple of interesting articles. This one says that people with Migraines with Aura (I don't have Auras with my migraines, and glad of it) are at a higher risk of blood clots. Migraine and blood clots in veins This article hints at a possible link between triptans and heart problems, although it doesn't sound very concrete in its conclusions. Interesting back story on triptans though. What doctors don't tell you: triptans for migraines I'm doubly determined now to start busting again and get my migraines back down to less than 10 a year. Really starting to hate drugs that come out of Big Pharama. More and more, as time goes by, I'm learning to appreciate alternative medicines. MG

I'm always surprised how long it takes to recover from an attack. 90% of my attacks these days last less than 5 minutes and are a KIP 1-3, and I normally just shrug them off and get back to whatever I was doing. But occasionally... I just had a KIP 8 that lasted 15 minutes, give or take. Now, 2 hours later, 2 cold drinks and lunch, and I'm just starting to recover my energy and get my brain working again. Been walking around like a zombie on drugs for the last 2 hours, even though the pain has long gone. Been having these things 11.5 years, and I still can't get used to that. Even now I just want to crawl into bed and sleep. If I were a battery, it's as if someone has just laid a screwdriver across my terminals and held it there for 15 minutes until I was utterly drained. Oh, and here's the bit that made this attack interesting. My housemate is bed bound and in the advanced stages of Motor Neurone Disease (aka ALS). She can move her eyes, blink and turn her head from side to side, a little, but that's it. Just before my attack, her main carer and I rolled her over and put a bed pan under her. Then I had my cluster attack. It just finished when she was ready for us to remove the pan. I could barely stand at that point, but had to help anyway. This isn't something I need right now on top of my best friend dying slowly. MG

Hi Mel, Welcome to the family, sorry you have to be here. Caffeine is good too; coffee, energy drinks like Red Bull, Mt Dew, etc. I find a cold drink works best, and usually have an energy drink in the fridge. MG

Hi, We haven't talked about music for some time, and I'm curious, for those of you that listen to music when you bust, what do you listen to? I like songs that tell a story and have a good beat, or set a particular mood. I've got about 20 songs in my busting play list, always looking for new ideas though. Here's a few I really enjoy when in that headspace. Spirit in the Sky (love the bass!) - Norman Greenbaum Killing me Softly - Fugees You Oughta Know (Alanis Morissette) - the bonus song Can't Get you out of my Head - Kylie Minogue Hotel California - Eagles Matty Groves - Airport Convention Glory Box - Portishead Leave Right Now - Will Young Islands - The xx Bad Moon Rising - Creedence Clearwater Revival Would love to know what you listen to. MG

They are FINALLY starting to look at changing the classification of medical cannabis in the UK. Most of the current government is against it, but there is a lot of pressure from something like 80% of the population. Here's typical British irony. The UK is the biggest producer & exporter of Medical Marijuana, but it is illegal here in the UK. British Sugar produces 75% of the cannabis exported from the UK. The husband of the UK Drugs Minister, Victoria Atkins MP, has a 45 acre farm that produces cannabis for export, but she won't legalise it in the UK. The general understanding is that she's being paid off by the alcohol companies. The government insists it has no medical benefit and people only want it legalised so they can get high. (well, duh!) This is despite countless reports saying it is the least dangerous drug on the streets, including alcohol! It beggars belief. MG

Hi Everyone, Thanks for the input. I tried one capsule of Gabapentin Sunday night before bed. Felt no effects what so ever, didn't even make me drowsy enough to go to sleep. I chased it with a bit of cannabis, which always helps me get to sleep - which is why I have it. Did some research first about the interaction of the two drugs, and everything said the reaction is pretty mild, cannabis just makes you feel a bit more drowsy/dizzy than without it. So I chanced it. Next morning, couldn't wake shake myself awake till after 10:00. It was well after 11:00 before my head fully cleared and I didn't feel like I had a London fog going on in my mind. I didn't take any last night, and feeling really low today. My mood had been very good the past few weeks, and I've been quite optimistic. Dark thoughts today, don't want to get out of bed. I'm not going to try a 2nd dose. I haven't trusted doctor prescribed remedies for headaches, clusters and migraines since using Topiramate, and this just confirms that feeling. I don't need this fog or this depression. Would rather deal with the pain. Batch - I am working on improving my diet, although don't expect it to be a silver bullet for my migraines. Migraines run in my family, and although I've never been an amazingly good eater, my sisters are, and it's made no difference to their migraines. I may also explore the Anti-inflammatory Regimen again, but I detest taking handfuls of pills every day. Although, I would like to double check, now that I'm 100% clear of other doctor meds, that it was indeed the high dose of Vitamin D3 that turned my urine to acid. That'll be an entertaining experiment I'm sure. In 2011, I had 257 cluster headaches, 276 daily headaches and 42 migraines. That's a total of 575 headaches for that year! At the end of that year is when I started busting, and the very next year I had 3 migraines - for the entire year! Last year (2017) I had 35 clusters and 90 daily headaches but 179 migraines for a total of 304 headaches (and that was my best year since I started keeping records in 2010). If I can just get my migraines down to single digits again, or even < 20, my overall headache total would be amazing! Based on the first 6 months of this year, and projecting out to the end of the year, I expect to have: 25 cluster headaches 29 daily headaches 113 migraines So it is really the migraines I need to tackle. It would be fantastic to have a year with less than 100 total headaches. I could, theoretically, even get that down to < 60. I'm not sure I can imagine life only having 1 headache a week instead of 1-2 a day. I want to bust again, that seems the most effective thing I've done for migraines (and clusters). But, my housemate, who has a terminal disease, has carers in the house 24/7, and I'm not sure it would be wise growing the necessary ingredients for busting while they are here, let alone applying the remedy. Plus, I'm frequently needed to help out with her care, and couldn't do that if I'm out of my head. But, I've thought about getting everything ready so that when she does eventually lose her battle with Motor Neurone Disease, I'm ready to bust. MG

Hey DD, Yeah, I think it's quite similar to Topiramate in a lot of ways, which I did come off of way to fast and was suicidal for about 6 weeks. The doc said to take 1 pill in the evening for 3-4 days till my body can tolerate it. Then, 1 in the morning and 1 in the evening. Then, 1 3 times a day, eventually increasing to 2x 3 times a day, allowing 3-4 days between each increase. And to come off it at the same rate. The documented side affects range from mild to extreme depending where you look. Like Topiramate, it's an epilepsy drug being used for head pain, so not ideal. I'm probably going to try it as I'm getting 20+ migraines a month, and need to do something. Can bust for awhile either. I'm tired of only have 2 -3 days a month pain free. MG

Have just been prescribed Gabapentin by my GP to see if it'll help reduce my migraines. Wondering if anyone has any experience with it or advice? He wanted to give me Topiramate (Topamax), but I said I'd already played that game once. Granted, I could do with the weight loss benefits of Topiramate, but the side affects are pretty extreme for the small weight loss it helps with, and my clusters got worse while on it. I'm not busting at the moment, so not worried about Gabapentin clashing with anything. Would be great if it caused weight loss. :( MG

Nice, love the imagery. MG

Hi Gail, Are you putting a few drops under your tongue? My best friend uses CBD oil to help relieve muscle spasms associated with her MND/ALS. I'm tempted to try it for my migraines, see if it helps. Unfortunately, my clusters are two short (which is really a good thing) for any abortive to work. Mine usually only last a few minutes, thanks to all the busting I've done. I know people have reported hit and miss success with cannabis to treat clusters. For some, it makes them worse. If it works for you, awesome! Well worth trying. MG

No... but why do you ask?

*blushes* We do what we can. Besides, what's the point of going through all this pain if one can't help someone else avoid a little of it. Likewise though, I wouldn't be here today if it wasn't for this forum and the people here. MG

Hi Ammo, I get asked a lot by people if I know what triggers my headaches, migraines and clusters, and I generally answer with, 'just one of the perks of being me.' The pursuit of triggers is an important one, but only to a point. They can get you chasing your tail if you're not careful. Just about every time I have a migraine or cluster, my best friend will site the weather as the cause, or a recent stressful event, or some other reason she'll pull out of thin air. But you know, sometimes there is no trigger. It's just who I am, how my body works. I know the cause, and am aware of the key triggers. The reason I have migraines is that they are hereditary, everyone in my family has them. My nephew died from an overdose of pain killers, his were so bad. But, the reason I have daily chronic headaches, plus bad migraines, plus clusters is because I changed my hormone system from a Testosterone based one, to an Oestrogen based one, and it altered my Hypothalamus - and these headaches are the result of that process. As a side note, has anyone mentioned getting your testosterone levels checked? A lot of CH'ers have lot T levels. In regards to triggers, I think that no two cluster heads are the same, and just as soon as you figure yours out, they change. For most, they can't touch alcohol. Doesn't affect me at all (which is good). If I have too much stress, I get a migraine. To little stress, or if it drops too quickly, then I get a cluster. To many late nights (i.e. more than 2 in a row) and I'm sure to get slammed by the beast. Get to hungry, get a migraine. Strong smells, loud sounds, bright lights, cold (like someone touching me with ice) - will all produce a migraine. There might be one or two things I left off the list, but that's about it. I'm so confident in my list of triggers, that I've stopped looking for more, and focus more on aborting and preventing the pain. MG

Thanks for the feedback. Be interesting to hear more stories. MG

Hi, Has anyone else noticed a correlation between talking about Clusters and getting hit with Clusters? I haven't had a bad attack (Ok, let me define bad - a KIP 5 that lasts 5-10 minutes) in ages. But was on the forum today, posting a bit, and also emailed someone yesterday about the D3 Regimen. Been thinking and talking about Clusters, then BAM! get a Cluster. I've noticed it before too. It's probably just bad timing, but seems weird. MG

MoxieGirls' rule of thumb: No two cluster sufferers are the same, and as soon as you figure out your clusters, they change. Migraines suck too. Just saying.

Hi guys, I just met someone today who's daughter has CH. I've sent her a bunch of stuff about the A-I Regimen, and some links to the Cluster Headache forum. It was her work email, so I didn't send her a link to this forum, or details about other remedies. But am hoping her daughter will reach out to me. MG