MoxieGirl

I think, if one does not already exist, we could use a video like this one to explain CH. Might help clear things up for some people. https://mndeyes.mndassociation.org/what-is-mnd/ MG

Hi, Yeah, doctors can be amazingly clueless sometimes. Not all, but for to many. Part of the problem, I think, is they are so over worked they don't have time to follow up on current developments. Which is a shame. I was very lucky in that my GP's best friend's husband has CH, so she knew exactly what my problem was on my first visit to her when they started. I saw a neurologist, who is one of the top headache specialists in the UK, within a month of my visit. MG

Cool. FYI, this board uses a variation of HTML, that uses [ ] instead of < >. If you change your code to [b ]nobis[/b ] it should work better. (minus the spaces)

HI Anita, and gang. I've always been chronic, and to be honest, being episodic used to scare me. Sort of along the lines of what Jon said above. At least when I was getting hit all the time, my life was prepared for it. I always said, still do actually, life is what happens between headaches. Although these days, it's mostly chronic migraines and chronic daily headaches. Cluster Attacks, not so much any more. In 2011 I was getting up to 5 vicious attacks a day, every 2-3 days for an entire year. That was about my worst year with Clusters since they started in Jan 2007 (add on top of that my migraines and daily headaches, of course). I had gone through, and maxed out every drug the doctors could give me over the years, and they just got worse and worse and worse. If I had 3 days attack free, I was amazed. And when they hit, it was HELL on Steroids! Nov 2011 I had my calendar in front of me, and was selecting a date on which to leave planet Earth. I had decided to give myself one more year to find a solution, and then good bye. I had been told about this board in 2010, and read through some of the pages. But to be honest, LSD scared me. I've never done anything harder than pot, and that was when I was very young. As a result, I had always held this option as a last resort. That day when I was picking a date to die, I knew I had reached my last resort. So, I joined the forum, and was instantly greeted by the warmest and nicest people on the planet. You've met them already. I began coming off of Topomax (Topiramate) as quickly as possible, to quickly if I'm honest, and I spent all my free time reading these pages. By the time I was clear of the doctor prescribed "waste of time", I had a small amount of shrooms and some RC Seeds. After my very first dose, I knew I was onto a solution. My next attack after that dose was COMPLETELY different than anything I had ever experienced before. I knew the routine, I knew the schedule. But this attack after busting, it didn't follow the schedule, or the routine. My routine was: Sudden attack, like being hit in the face with a baseball bat. 30-60 minutes of extreme pain, usually sitting on my bed rocking back and forth with snot dripping down my face, followed by 20-30 minutes of uncontrollable tears and shaking, as if someone where rattling my bones. But, after my first bust, there was NO post traumatic attack. No crying, no shaking. I had a short, 20 minute attack or so, and then got up and dusted it off and got on with things like it was no big deal. The attack was sharper, and 'clearer' than any other. It was like crisp, cold, crystal clear water instead of the heavy, oppressive attacks I normally got. It took me the better part of a year of busting on and off to make a huge difference, but a difference it made. Year 2, I only busted occasionally, a few weeks at a time 3-4 times a year. Two years ago I started micro-dosing, which is amazing! It involves taking a small dose (0.20 grams or less) every day with no tripping affect. But, I don't even do that very often now. In fact, all my busting material is going to my best friend who has ALS, she needs it more than me. Do I still get attacks? Yes, I had one yesterday in fact. It lasted about 30 seconds. Took my breath away and brought a few tears to my eyes, but that was it. I get 1 - 2 attacks a month now, and consider anything over 15 minutes a shockingly long attack! In fact, 5 minutes is unusual. I'm not as scared of being episodic now as I once was, simply because my attacks are not what they once were. I'd be concerned though that if they stopped for a year or two, they might come back with a vengeance. But I have a solution now. I know how to stop them, and I have no plans of leaving this planet anytime soon. MG

Good to know. MG

Hey Kristy, I have been diagnosed with Chronic Daily Headaches, Chronic Migraines and Chronic Cluster Headaches. I routinely have between 30 and 65 headaches (of one type or the other) a month. Some years it is headaches, some years migraines, and other clusters that seem to be the dominate one. Right now, it's migraines. Virtually every morning, 4 or 5 am, a force 10 migraine wakes me up. I've found the best migraine abortive to be Anadin + Eletriptan. Not sure if you have Anadin in the States, basically paracetamol + caffeine My worst year, the year they started, my headache lasted for 7 months and was punctuated with frequent migraines that lasted for days and severe cluster headaches. In 2010 I was getting up to 5 cluster attacks a day every 2-3 days, and that's when I turned to this forum. The remedies found here reduced my clusters from several a day to a few a month, and those are so mild I barely notice them any more. In 2010 I had something like 65 migraines (if memory serves). In 2011 I had 3. Yep, 3. A 95% reduction in migraines. I've had a few bad crops of my home grown medicine this year, and thus the worst of the headaches are back. But I had started micro-dosing on a daily basis. This means taking a really small dose, so small there is virtually no tripping involved at all. The psilocybin builds up in the body over time and is totally amazing. My advice. Hang in there, don't give up hope. The doctors don't know everything, do your own research. Find out what works for your body, trust yourself. I don't get onto the forum as much as i used to, but feel free to ask me anything. Will do my best to help. hugs MG

Big Hugs CHfather. This year is certainly going to be an interesting one.

Hi Gang, I hope everyone is well (as well as you can be) and had a great, pain free holiday season. I was at the Neurologist again a few weeks ago, but this time not for me. I was there with my very best friend in the world, my sister in every way but blood. Ezri went to see the neuro because of a fall she had way back in March that injured her knee and ankle, and refused to get better. Between then and getting a neuro appointment last month, she had several more falls, and her right leg also decided to stop working. To cut to the short of it, she most likely has (although they are still doing tests) Motor Neurone Disease, aka ALS. Regardless of the diagnosis, Ezri is currently unable to walk more than a few paces, even with crutches. We will eventually be able to get a free wheelchair from the NHS here in England, but it will be a heavy, bulky chair that she'll struggle to push. These chairs are also too big to use in our house. We want to buy her a lightweight, easy to push chair. If you are able and willing, we would appreciate any donation you can manage to the Just Giving page below. And also, please share the link on your favourite social media page. https://www.justgiving.com/crowdfunding/EzriNicholls I'm not normally the sort of person to ask for help like this, but I am compelled by my heart to do so. All my love and hopes for a great 2017. xx MG

Hi Gang, My housemates and I have just moved to the lovely city of Norwich, in England. And it's time I do that thing I dread, look for a new GP. I'm going to really miss my previous GP who understood my clusters and the *alternative* meds I took for them. Are there any other cluster heads here in Norwich who have found a good GP they could recommend? Thanks, MG

Hi, I recently bought an Apple Watch (which is really cool if you're a Geek like me). I also downloaded a pretty decent Sleep App for it that monitors your sleep patterns. As sleep (or the lack of) is a trigger, I like to keep an eye on things. This sleep app (Sleep Pulse 2) is quite impressive, and thanks to the heart rate monitor on the watch, is able to track one's heart rate during the night. Below are my 2 most recent heart rate graphs. I clearly remember being woken up early this morning with a mild cluster, and was quite surprised to see, at about the same time, my heart rate had shot up to 113 beats per minute!! So, I began looking at previous nights, and there are also some spikes (102 bpm). I'm going to keep monitoring it, and try to capture my heart rate when I get an attack during the day to see if there is actually a direct correlation. But thought it interesting, and if someone else has one of these smart watches, if they've noticed anything similar. MG

Hi Redfrostie, I'm from the UK, although not sure I'll be a ton of help. I tried the Vitamin D3 regimen (technically called the Anti-inflammatory Regimen I believe) several years ago, and found it very effective in virtually stopping my clusters. And when I checked, it had something like an 83% success rate, or something like that. Quite impressive. The only problem, all that Vitamin D3 turns my wee to acid, then to fire. So I didn't stick with it long. One shouldn't be afraid of going to the toilet. As far as sources go, I'd found an online source that wasn't very expensive. I just did some Googling, and couldn't find it again. It has been a few years. To be fair though, these days I'd just use Amazon. They are usually pretty good on prices, and fast delivery. MG

Going back to the OP and the comment/question about Steroids. I think, and from my own personal experience, there is a very strong connection between clusters and hormone levels. ALTHOUGH, I've always seen it to be connected with people who have a low Testosterone count. Taking steroids would increase your testosterone, and thus have the potential (maybe) to reduce clusters. I would be surprised if it caused them. That said, I'm not a medical doctor and my knowledge on the subject isn't exhaustive. When I transitioned from Male to Female, I took an anti-androgen that stopped my Testosterone (T) production, and at the same time took a very high dose of Oestrogen. It was during this period when my clusters started, and here is the theory behind the connection. Thanks to some scientists in the Netherlands, we know that the hypothalamus in women is smaller than in men. We are also pretty sure that when someone changes their gender, and thus changes their hormones from being T based to Oestrogen based, it reduces the size of hypothalamus so that it matches that of a genetically born woman. So, hormones impact the hypothalamus. We are also pretty certain that clusters stem from the hypothalamus because the hypothalamus controls the body's clock as well as body temperature, etc. etc. As clusters often occur at the same time of day, same time of week, same month of the year, etc. etc., it is believed they are triggered by the hypothalamus. My clusters are a direct result of me screwing with my hormone levels, altering my hypothalamus and thus triggering the clusters. My Neuro believes I was pre-disposed to having them anyway, and it was my altering my hormone system that triggered them. Who knows, I may have gotten them at some point in my life anyway, or maybe not. But I do suspect that if you take something that alters the balance of your hormones, and you are pre-disposed to having clusters, you are very likely to trigger them. MG

I can't find the exact study you are looking for, but these links look interesting. http://www.americanmigrainefoundation.org/post-traumatic-headache/#ptsdmigraine https://treato.com/Cluster+Headaches,PTSD/?a=s&p=4 I did one of those online quizzes awhile back to see how I ranked with PTSD, and my clusters ranked me pretty high on the scale. MG

There is probably more of a link in genetics than drug abuse, or else I'd expect you see more people with CH out there. And, depending on your drug of choice, they may have actually kept CH at bay, and you're now experiencing because you've come off drugs. I'm sure that's not what you want to hear, but a lot of people have noticed that - especially if you used LSD, mushrooms or the like. MG

Hiya, How long it'll last is a good question, and I've not seen a lot of comments on the topic. Often, I think, when people find a working solution they drop off the forums as they no longer need our help. I know I tend to only poke my head in from time to time during the good times, but am here almost daily when things get bad. The down side of this is that we don't get a lot of long-term reports of positive outcomes. Also, how quickly does your body adjust to meds? Mine adjusts pretty quickly, and I have to change things around every 6 months or so. I do have a saying: No two clusterheads are the same, and just as soon as you figure your's out, it changes. The beast is pretty good at finding a new way in. Not to be pessimistic and be a downer, but stay vigilant. MG

Hey Spiny, My sailing was AMAZING! The best week of my life. Totally loved it! Also made some really cool friends that week. I posted about my week on a sailing forum, and a guy who runs a site called Sail Mentor saw it and asked if I'd write an article for his site, which is here. I do think it is one of my best pieces of writing. My Personal blog site (where you'll find full details of the sailing trip with pictures and vids) is here Sofa to Sailboat. My headaches dropped off quite a bit while sailing. I had a couple annoying ones I could ignore, but only one or two bad ones. Stress has a lot to answer for in my life. xx MG

Hey. I haven't posted much recently, but am still around. Guess my beast has gone on a bit of a holiday, and isn't troubling me much. Or it's been scared away by the nearly daily headaches and migraines. Actually, they are worse than that, getting 2-3 a day many days. Sometimes my head seems determined to not let me have a break. But hanging in there. Cannabis in the evenings is helping me sleep, which reduces the migraines so that most mornings, I only wake up with a headache and not a thumping migraine. I've even had entire days that were pain free, or nearly so. Am trying to count my blessings. Hang in there my friends. xx MG

Hi doc, My two rules of clusters: no two cluster sufferers are the same, and just as soon as you figure yours out, it changes. The beast has a way of morphing when we find a way to make things better. It's very resilient that way. What DD said about being diagnosed as chronic is true, regular attacks with no remission, about 2 weeks apart for a year. I've been chronic for 8 years, no fun. I believe in trying just about anything and everything, and documenting your attacks and what you try. This is the only way to find out what works and what doesn't. I'm glad to hear you've tried a lot of things and are finding something that works for you. It's not a solution I've come across before, but if it works, awesome. I do know eating healthy and keeping in shape helps. A number of people have tried acupuncture to no avail. Personally, I wouldn't waste my money on it. Not saying it is a bad thing, but just don't believe it helps with clusters. MG

Hi Jcdonny, That sucks. I think my first response would be to kick them in the balls, but maybe that wouldn't be helpful. Apart from that, find another doctor. Push to get an appointment with a neurologist. You're obviously dealing with a clueless person. There are good doctors out there who understand, or at least are willing to try and help. You are more likely to find help with a neurologist. There is also a good headache clinic in London. The neurologists at Addenbrooke's Hospital in Cambridge are good, if you're near there. MG

Thanks Purple, I'll talk to my son, he's a musician. It's tough, getting the point across about the pain. Sometimes it is worth showing people what it's like. I wish I had a super power and could touch people and give them a 10 minute cluster. And the 'headache' thing, I do my best to call them cluster attacks. They aren't headaches, that is SUCH the wrong word. Calling clusters a headache is like calling the sun just another planet. Right, off to get my hair cut. xx MG

Thank you Purple I think my favourite verse is: This is when the true crying begins As my body shakes from my bones to my skin I also like hope that the reader is lulled into the story with a twist at the end. It starts with.. Today is like any other Yesterday, today & tomorrow, all blur together And hopefully reads like all the cluster attack is an exception to a normal day. But then it ends with.. Today was like any other Yesterday, today & tomorrow, they all blur together Day in and day out, everyday the same Oh, how I wish I could escape this pain. And you realise that this pain IS DAILY, and that every day is like this. It's not an exception, it's the norm. That was one of my goals anyway. Hope it worked. More of my writing can be found here. A poem or two, some bits about pain and clusters, the first couple chapters from my novel (which will be updated soon), and other random ramblings. The blog page is called 'Sofa to Sailboat', as I'm chronically my journey of learning to sail and eventually buying a boat. But in-between sailing, I write about other things. MG

Cory, I echo what CHFather, DD and Spiny said, and will add... This isn't a strategic military mission!, where you send in a few of your men to see if they can kill the enemy, and if not, you send in a few more. Killing the Beast is like D-DAY!! Send in everything you've got, then send in some more. Hit it from all directions, all at once, from the air, ground and sea. Use every available weapon in your arsenal to utterly destroy it! Anything less than that, and you're just teasing the beast. Abortives: O2 should be number 1, used with every attack. Energy drink too And any injection meds the doctor gives that are safe to take. Preventatives: Vitamin D3 regimen at full dosage Magic mushrooms and/or RC Seeds or doctor meds Melatonin Post-Attack: Water, water and more water Coffee is nice too Chocolate Watch out for those land mines (triggers) and avoid them at all costs. Once the dust settles, and the war is won, you (i.e. your husband) can back off and experiment to find what works, what keeps them away and what stops them. But from what you've described of where he is at the moment, I'd be throwing anything and everything I could at it. Get in a better place, then reevaluate what works and what doesn't. Just my 2 cents. I'm super excited about the progress you've made, you're so on the right track. This is a great group of people, isn't it? Wish I could bring every Cluster Head in the world here and we could help them one by one. I spent so many years in pain going the doctor route, when I should have started my journey here. Also, something that occurred to me while reading your post. From a very personal point of view, I'm delighted that I've been able to contribute and help. I can look back at my years of extreme pain with a sense of satisfaction. I've beat (am beating) the beast, and more than that, I've lived through it to help others. Hang in there. You are not alone. MG

Welcome back Didgens, hope you've been well despite your son getting hit by the beast. Yeah, new site is pretty flash. MG

Remind us again what cluster meds he has? Does he suffer with other types of headaches (normal ones, migraines, sinus headaches, etc.)? Headaches can sometimes trigger headaches. Traditionally, a cluster tops out at about 3 hours, but I have heard of them going longer, and I've had cluster like symptoms, although not at 100% intensity for longer periods than that. But I may not be the best person to measure by, as I have so many other types of headaches, can be difficult to tell them apart sometimes. MG's First Rule of Cluster Headaches: No two cluster sufferers are the same, and just as soon as you figure your clusters out, they change. MG

Thank you both, I'd be delighted to have it at the conference. Was hoping I'd be able to attend this year, but just not in the cards I'm afraid. Bob, please kindly add: by Renée Elizabeth Mineart. MG