MoxieGirl

As a writer, I often find writing down descriptions of cluster atracks very beneficial. For me, writing gets it out of my head. I have a pain diary I really need to unpack and start using again. Talking them over with someone is good too. BJ knows all the best links.

Super glad to hear you have a good UK pal personally coming to your assistance now. [smiley=thumbup.gif] Ahhh shucks Beejeeber, just being me. Atama, Busting, yes, it's our code for taking LSD, Mushrooms or Seeds - or perhaps any non-prescription remedy that actually works. My eye barely droops, and yet it is a tell tale sign (supposedly) of cluster headaches. Eye and nose waters, but I always thought it was because the pain made me cry. But over time I figured out that my eye and nose dripped long before I started crying. Crying usually comes after the attack has stopped (well, used to before busting). I do sometimes get a really bad blood shot eye after an attack. I've used several ways to describe the pain over the years to friends. One way to drive it home, is to ask the person you're talking too if they've ever had a muscle cramp in their leg. Talk about how the cramp comes on suddenly, no warning, and hurts like Hell. For the duration of the attack, you can't move or think of anything else but the extreme pain in your leg. Now, imagine that exact same pain, times 10, in your eyeball. Same unpredictability, same full on pain, then when it stops, it's gone. Recently, to describe a cluster, I remind people what a brain freeze headache feels like. I like this one because it is the same nerve being triggered by a cluster as a brain freeze - the Trigeminal Nerve. Now, take that brain freeze that lasts for 10-20 seconds, multiply the pain by 100 and extend it out for an hour or two, and you are approaching a cluster headache. MG

Welcome, and hugs. We've all been there, people who can't comprehend real pain. Hang in there, lots of good information and people here. MG

Hi atama, Welcome to the family. I can't answer all your questions, I had a bad reaction to Verapamil, so wasn't on it that long. This is a good site, friendly people, with a LOT of information and guidance, you could't be in a better place. I often think Cluster Headaches are like a massive 18-wheel Lorry (Semi to the Americans) baring down on us at breakneck speed, and all the doctors give us to stop it are water balloons. First off, most doctors are clueless to what clusters are really like. Doctors think things like a dislocated knee are painful, but I know of someone that had a dislocated knee for 3 days before he realised it because the pain was so inconsequential to his clusters. Many of us find we are educating the doctors on what clusters are, and what the best treatment is. Get to a neurologist as soon as humanly possible. They can sometimes be better than your run of the mill GP. Thankfully, I have a great doctor who has a friend with Clusters, so she diagnosed me on my first visit and I was seeing a Neuro within weeks. Many people here will soon be telling you to get oxygen, and I couldn't agree more. Although I don't use it personally, and not sure if it'll be able to help with attacks at work, but will help a lot at home. MG

Hi Matt, Thanks for the detailed information. Much of it sounds very familiar. I'm pretty sure the numbness you are describing is your Trigeminal nerve, which is affected with clusters too. A friend of mine had Trigeminal Neuralgia, which is about the closest thing to a cluster you can get. She had her Trigeminal nerve disconnected, and the side of her face, tongue, etc. are numb as you described. Hot needles in the eyes, yep, very familiar with that sensation. Pressure in the head, behind the eyes too. And it can be brief, like you say, just enough to make you stop and catch your breath, to making you sit down and eyes water. Also like clusters, not exactly the same one person to the next. Like I always say, life is what happens between attacks. Hang in there. MG

Sweet! Good news is always, well, good.

OK, slightly_confused.com Those of you with SUNCT, what would you say makes it different from Clusters? I never thought about someone having both!! I wonder if that is me. I frequently get very short, bursts, of extreme pain that only last seconds to a 1/2 minute, sometimes 1-3 minutes. But then I also get full on clusters, but again they are usually short for a cluster, 5-20 minutes. And then again, but more rarely, clusters that last 30 minutes or longer. But from what I've read of SUNCT, a person gets hit 20 - 40 times a day, I don't. 1-5 max. Edited to add: Do those of you with SUNCT get hits during the night, or is that more a characteristic of clusters? I rarely get hits in my sleep, but when I do, it's a full on cluster that wakes me up. MG

Hi Rozzle, and welcome. Don't worry, MRIs are pretty routine when diagnosed with clusters. You know, just to rule out something worse, as if there is something worse than clusters. Lol Good group of people here. Have saved my life, and many others. MG

I know, old news, but a recent article about Daniel Radcliffe. http://www.hindustantimes.com/Entertainment/Hollywood/Radcliffe-suffering-from-cluster-headaches/Article1-875265.aspx

Hi Zizka Knowing the unpredictability and variance of CH as I do, I'm not at all surprised by your description. Attacks occurring on one side of the head is a diagnostic criteria for clusters, but I would also say that for 98% of sufferers, alcohol is a trigger. But it's not for me. The only consistent rule for clusters that I've found is that they are unique for each person, and just as soon as you figure yours out, or find something that works, they change. I sometimes get bursts of pain on both sides of my head, or in the very centre during an attack. Sometimes an attack will start in my right temple, and very quickly move to my left, or my left eye. Sometimes they start in the back of my head, or the top of my head, and move to my forehead, eye, temple, etc. And yet, a "by-the-book" cluster attack is on the inside of the eye, and always one sided. Many people comment that their attacks are always on the same side, while just as many, myself included, flip flop. My guess is that clusters being one sided is a good diagnostic guideline, but also shouldn't (on its own) be something to rule out clusters. I would also guess the one-sided argument comes from the fact clusters hit the trigeminal nerve, which extends down each side of the face. But not across the face, so it tends to trigger on one side or the other. Perhaps triggering both sets of nerves, on both sides of the face at the same time is just very rare. The odd sense you get of an impending attack is what I call a shadow, although I think they are different for other people. My shadows don't involve any pain, just a presence of a darkness in my mind, a reminder that the demon is there. Sometimes it is a prelude to an attack, but not always. hope that helps. MG

I had been wondering the same thing. Was going to research what is needed, but haven't yet.

Hi Darby, and welcome to the family. Much of my story is in several posts throughout the forum, but if you have limited access, I'll recap it here as it may be of interest. Headaches and Migraines run in my family, and I've had them pretty much all my life, although migraines are very much stress triggered and didn't start getting bad till I was in my 20's. About 6-1/2 years ago I was on a pretty high dose of oestrogen as I was changing my male testosterone based body to a female oestrogen based body. Dec 31, 2006 at about 21:50 I got a headache. It lasted 7 months. Non-stop, 24/7 until July when I started getting a few days headache free. I had gender reassignment surgery in Aug that year, which also seemed to help, for some odd reason. Also, in the first or second week of Jan 2007 I started getting hit with really bad clusters. Thankfully, my GP has a friend with clusters, so she knew just what I had and I saw a neuro very quickly. Also during that year, my migraines turned pure evil. I was get 3-5 migraines a month, and for me, a nice migraine only lasts 2 or 3 days, most last 5-7. 2007 earned the title 'my year of Hell'. 2008 - 2012, things started to settle into a routine. I would have a 'normal' headache (daily chronic headache) 5-6 days of the week, and if left untreated would turn into a migraine. I was averaging 40-60 migraines a year. Clusters were also chronic, and about my longest cluster free period in those years was 2 weeks. 2011 was my worst year since 2007. Nov 2011 I marked a date in my calendar for Nov 2012, and if I hadn't found a solution by then I was going to exit planet Earth. That same week I found this site and spent the next 3 days reading everything I could find. By mid December I was off of my doctor prescribed meds, that did no good what-so-ever and was taking RC Seeds. The Seeds and Mushrooms really do NOTHING for my headaches. But in 2012 I had only 3 migraines, and they were quite minor, barely lasting a day or so. I've only experienced the post traumatic stress attack after a cluster 4 or 5 times, whereas I used to get it with every cluster attack. Also in 2012, my clusters dropped to 169, nearly 100 less clusters, and most of the attacks were less intense. I've even had a few cluster free gaps of 20+ days! I am still experimenting, finding the right solution (seeds or shrooms) at the right dose and frequency. Breaking a chronic cycle is tough, but I'm still on planet Earth. I wouldn't have been if it was left up to the doctors to treat me. To say this site, and the people here saved my life, is no exaggeration. I sincerely hope you find a solution to your pain. Hugs MG

Hey again, I've often wonder what life is like for an episodic. To be hammered for weeks and months, then have it go away for months or years. It seems like a very slow process to figuring out a pattern. But I can assure you, there will be a pattern, of sorts. My first year, I got hit every Tuesday at 7pm, or 7:20pm, or both. I'd get hit other times during the week too, but I could count on Tuesday evening being a bad night. Then the pattern shifted to where I'd get a series of progressively worse clusters over a 2 week period, ending with an all mighty, off the scale attack. Then 2-3 weeks pain free, then it would start again. I thought THAT was being episodic, then I found this site and learned what episodic really means. In truth, I've been chronic for 6 years. OH, and my first year with clusters, I had a 7 month headache as well. Yep, 24/7 headache from Dec 31 2006 till July/Aug 2007. And don't even get me started on the migraines that can last 5-7 days. But still, I come to this site and read stories from people that break my heart, and make me thankful for how good I have it. Hugs MG

Hi Again Trace, So glad you got a quick appointment. Awesome! My neuro was a bit hesitant to nail down a precise diagnosis too, but my 'clusters' aren't quite run of the mill. There are three types of headaches in the TAC group, Clusters, SUNCT and PH. SUNCT and PH are both much shorter than clusters, a few seconds to 10-30 minutes usually, but SUNCT and PH sufferers get hit a lot, 20 times an hour or more, or 20-30 a day. That type of thing. My clusters are quite short, usually a few minutes to 15, sometimes 30 minutes. Rarely an hour. But I don't get the ultra high frequency as a SUNCT and PH. (apart from last Saturday, got hit about 30 times that day). So, what do I have? My neuro is hard pressed to say. The meds that nearly always work on SUNCT patients did nothing for me. So, I go on the theory that I just have very short clusters (although when they started 6 years ago, they were much longer). Clusters are unique for each person, and often vary from cycle to cycle. So when you do find a solution, don't relax and think you have it sorted. The demon will find away around it. I had an MRI too, my neuro said it was standard for cluster sufferers. Thankfully, he found my brain but nothing more. The downside to having very short clusters, is that by the time I got any form of abortive in me, it would be over. So I'm trying to find the best preventative that works for me. Hang in there, glad to hear you are getting some sleep. MG

Hi Trace, Sounds like you've been doing your research, and have already had some good advice. Don't think I can really add much (unusual, I know). But, will say WOOHOO, another Iowan. OK, so I'm living in merry old England, but originate from the great corn State. Glad you had at least one good night's sleep. Hugs MG

Hi kids, Sorry, haven't visited the boards in a few days so just saw this post. I'm chronic, have been 6+ years now. Although for me, the game is bigger than just getting pain free days from clusters. 2011 was my worst year. 258 clusters, getting up to 5 hits every 2-3 days. Longest pain free period was 4 or 5 days. Plus, 42 migraines that year. Started busting end of 2011, and in 2012 I had: 169 cluster attacks (down by nearly 100 attacks) with several pain free gaps in the range of 23 days. The amazing bit is that I had only 3 migraines in 2012! A 93% improvement over the year before! Also, since my first bust with mushrooms I have had only a handful of post traumatic stress attacks, as opposed to the 20-30 minute attack I used to get after EVERY cluster. I think the challenge is finding the right busting agent (shroom, seed or LSD), at the right dose, perhaps the right strain, at the right frequency to do the most good. After many months of hitting shrooms pretty hard, I'm actually going back to seeds as I think they are more effective for me. Rule of thumb: Don't give up, try something else. I have tried every medicine the doctors could give me, and had well exceeded the max dose of Topiramate. It was all about as effective as water off a ducks back. Busting is the only thing that has produced a significant improvement. OH, I've also had some success with the Vitamin D3 regimen, and it plays well with busting. Hugs MG

PF-day, to the tune of Yesterday by the Beatles. Yesterday, all my headaches seemed so far away. Now it looks as though theyÂ’re here to stay. Oh, I believe in yesterday. Suddenly, clusters hurt me like you wouldnÂ’t believe. ThereÂ’s a shadow hanging over me, Oh yesterday, it was pain free. Why do these hurt so? I donÂ’t know, the doc wouldnÂ’t say. Did I do something wrong? Now l long for yesterday. Yesterday, life was such an easy game to play. Now I need a place to hide away. Oh I believe in L-S-A. When will this pain go? I donÂ’t know, the doc wouldnÂ’t say. These pills donÂ’t work. Now I long for yesterday. Yesterday, life was such an easy game to play. Now I need a place to hide away. Oh, I believe in L-S-A. MG

Well said Ricardo.

Not having been there and not hearing his full reply, from what you wrote, it sounds like he said what he thought would get you to shut up the quickest. He seems quite closed minded, and 'my medicine is the best medicine for you' type attitude. I shopped around until I found a GP I could talk to, and would support me in what I wanted to try, not push some solution at me that didn't work. Thankfully, my GP has a good friend with clusters, so has a better understanding than many. I got lucky with my neuro. He's a migraine sufferer, so has some idea what head pain is all about. Although, since busting I haven't had a need to go visit him. Regardless if you stay with this guy, or find someone else, you need to take what works for you, in my humble opinion. And doctors don't know all they claim to know. MG

Many good points in there Ricardo, thank you for posting. xx

Dan, I'll take the time to write too. My best friend and house mate is very supportive of any attempt I can take to stopping clusters. Her mother had Tirgeminal Neuralgia, so she has a pretty good idea what I'm going through. She had a pretty good understanding of things, but a few weeks ago I showed her the NatGeo video, and her eyes were REALLY opened. She asked a lot of questions I kinda assumed she knew, but obviously didn't. I sometimes lull back into life, and just accept my clusters are as good as they are going to get. But she's now always nagging me (in a good way) to try seeds again, or why haven't I taken shrooms lately? The video really helped, thank you. Also, she was pretty impressed that I know you (in a way anyway). xx MG

You guys are making me smile like you wouldn't believe. Thanks. xx OH, and love the 'Moxie Way' idea, but might make it Moxie Way Publishing when I publish my novel later this year.

OH, LOVE IT Chfather. Thanks.

Mine does, all the time. the left side of my body is more sensitive, and more dominate. When I get hit on the left side, they are always 10 times worse than on the right. But thankfully 70%, maybe 60% are on the right. Sometimes I'll get hit, have a very short pause as the pain eases, then get hit on the other side worse. Or it'll start behind my ear, move through my temple to my forehead. Most of the time they are in my eye socket, but not always. Temple, forehead, eye ball. I never know where, how painful or how long for. 1 minute, 5, 10, 30, an hour or any in between. Nor do I know the time of day, but rarely at night. 5 or 10% at night, maybe. One of the most random things in my life. MG

I have an idea, and want to see what others think about it. I'd like to have a full size wood carving made of a head. Preferably a replica of my head and made from a very hard wood. Put the carving on a post, and then jab the eye-socket with a hot cork screw. Pull the the soft eyeball (made from foam or sponge perhaps) out of the eye socket, twist it round and shove it back in. Then Hit the eye as hard as I can with a baseball bat, and take an ax to the temple until I have chopped it to bits. Clusters make me so very angry sometimes, I just want to vent my anger and frustration. Replicate the pain, be in control of the pain - real or not. I think it would be therapeutic.