MoxieGirl

C MG

Thanks everyone. Am wishing I'd written the article and not just reposted it from a fellow CH'er who posted it on FB. The addictive personality question. I hope that is answered in the book, but I would guess nothing is ever that cut and dry. I might also guess that addictive personality is just someone who is in 'need', although they don't know what they need to satisfy their craving, so they latch onto everything. Perhaps if they found fulfilment in something they wouldn't be so addictive to everything. But I really have no clue, I'm not naturally addictive to things. I find that when I'm emotionally low and being hammered with clusters - or perhaps I'm emotionally low BECAUSE I'm being hammered with clusters - the pull to bust is MUCH stronger. Not just because I know it'll reduce the clusters, but I long for the escapism mushrooms bring. To have 6 hours disconnected from my body and absorbed by music, or colours or ... anything but pain and reality. I'm currently experiencing a quiet time. All of my headaches seem to be behaving themselves, and I'd need two hands (at least) to count the days since my last cluster. And you know, I have no desire to bust. I don't need that bliss feeling. In fact, I've even declared January an alcohol free month, and haven't touched a drop this year. MG

I meant to say 'the war on drugs that is a lie.' Sorry, being a bit cynical tonight. This is a REALLY good article about a book that looks really good. Am adding it to my reading list. http://www.alternet.org/drugs/likely-cause-addiction-has-been-discovered-and-it-not-what-you-think Once you read the article, go here: http://chasingthescream.com (but only if you want to) MG

CHfather, have never known you to waste anyone's time. You are a wealth of good information. Hope it went well with the neuro. MG

Hi, Welcome to the board, sorry you have to be here. May I ask a few more questions? You say your CH never goes away. Do you mean you experience the pain 24/7, or that you get hits every day? CH doesn't typically (although there are really no hard and fast rules) last more than 3 hours per attack. If you are feeling constant pain, and if it is more in the jaw than eye, I'd be tempted to inquire about Trigeminal Neuralgia. But, I'm not an expert, just a thought. Also, you say you get immediate relief from D3. I've never known it to be an abortive - awesome if it works for you in this way. When I was on it, it took about 3 days before it kicked in and started working. As many on the board know, I was born with a man's body, but fixed that troubling issue about 7 years ago. 8 Years ago, when I was on high doses of oestrogen and an anti-androgen to shut down my testosterone is when the clusters started. My neuro thinks that I was always pre-disposed to clusters, and tinkering with my hormones, which can alter the hypothalamus, triggered them. My testosterone now runs a little on the low end, and I've heard several people say their testosterone is low, and I think there is a strong relationship with hormones and CH. So being connected to your pregnancy may not be far off. One of the reasons I think the D3 regimen works so well is that Omega 3 boosts Testosterone (although not sure that has been scientifically proven, I have a lot of anecdotal evidence). MG

Amazing how dependent we become on the internet. Really glad you're back. MG

And I doubt there is much, if any, hard scientific evidence out there to be found on this topic. Not enough people are studying CH, not enough doctors know about it to build up a proper demographic of who has it. Hell, most doctors don't know what it is and have never heard of it. I'd agree with Jeebs. Migraines run in my family, and, although this is the first time I've thought about it, I'm pretty sure they came down my father's side. I never knew my father, but don't recall my mother having any, or many, headaches/migraines. I think I'll ask her about it the next time we Facetime. But, all 7 of my siblings have them, my children, my nieces and nephews... you get the idea. One of my nephews is even on disability allowance because of his migraines. But as far as I'm aware, no one in my family apart from me, has CH. Granted, I did make some massive alterations to my hormones about 8 years ago, which my neuro think triggered the clusters. So, unless you plan on becoming a man, I'd say you're pretty safe. Even then I think the odds would be in your favour (almost said '..be forever in your favour' LOL ) If you do get them, you have something going for you that none of us did. You know how to spot them for what they are and how to treat them. It took most of us, and it sounds like your mum too, years to figure that bit out. Hugs MG

*blushes* No, it's not an excel spreadsheet. That's what I used to use, but I've upgraded. I've reproduced my data recording into a Filemaker Database. If you're Microsoft Office savoy, you might have heard of Microsoft Access. Filemaker is essentially the same thing but is both Mac and Windows compatible. And as I'm learning my way around Filemaker, it is SO much better than MS Access. To use the database I'm building on your iPad, iPhone or iPod you'll first need to download Filemaker Go - a free app. Then (once I've finished it and have you download the actual database) copy the Headache Database to your device. Don't worry, I'll write up step-by-step instructions. I'm afraid Filemaker doesn't run on Android. Filemaker is owned by Apple. I'm working on this between other projects, so it may be a few more weeks before I have a finished product. Right now, the data entry bit is really good, but I'm working on creating some meaningful reports and maybe an export feature so you can dump it out to a spreadsheet if you wish. Will keep everyone posted and be in touch when it's ready. Let me know if you have questions or ideas. MG

If you are a follower of my posts, then you know I meticulously track my headaches, and have been doing so for 5 years. I've found it to be a very useful resource. I've recently converted my spreadsheet into a database that I can run on my iPhone, and am quite impressed with it, if I do say so myself. I was wondering if anyone else would be interested in having this, and if so, what sort of information would you like it to include beyond what it is already there (see further below for details)? I'd like to be clear in that I'm not trying to sell anything. The application that runs this database is free, and the database itself would be free. I have no intentions of charging anything to anyone. The database at the moment tracks: The values in each field can of course be customised, so, for example, if you don't have Migraines, you can remove it from the list. If I get a chance I'll put up some screen shots if people are interested. I used to track things like triggers, sleep patterns, alcohol intake, etc. But I've been doing it long enough I know my triggers, how well I sleep and how much I drink. But if you would find such information useful to track, I'd be happy to add the fields or any other fields people would find useful. This database is still in development, and I've just started creating a number of useful reports. But thought it worth asking if anyone else would like a copy while it's in development as I can make required changes pretty easily. MG

Awesome!!

Nope, sorry Toni, you missed it. All the Merry Christmas and New Year wishes have been used up. Thank you for being a great member here, helpful and supportive. I wish you a fantastic 2015. xx MG

Interesting.

Fantastic, wonderful news! What a great way to start the new year. Right, I'd suggest keeping up the busting routine a bit longer, and read up on maintenance doses. If you're lucky, you may be singing a better song next year. all the best MG

Thank you everyone for your well wishes. I've lived in Texas a couple of times. Dallas for a couple years, and also had my Air Force training there. CHFather, most of mine are still quite short, 10-15 minutes, if that. But the KIP10s are usually longer, 30-45 minutes, the odd hour one. But I've only had 7 KIP10s this year, which is about average. If they start getting longer on a more regular basis, I'll push my GP for that O2 tank. xx MG

Yes, thank you Jeebs. I shall be starting a busting routine just as soon as my daughter goes back to her home on the 1st. might even be able to bust on the 1st. My MM stock is low, but may place an order for seeds to tide me over. The challenge is, and the main reason I haven't busted recently, is that I've had so many migraines I've taking a lot of zomig and eletriptan, which of course puts a 5 day kibosh on busting. Hugs MG

Yep, being Chronic sucks big time. I was in my bedroom when the cluster struck yesterday, and I had little choice but to curl up on the bed for a half-hour or so, rocking back and forth as you do. After the pain ended, there was another 20 minutes of shaking and crying uncontrollably. I eventually emerged for a glass of water, at which time I told my house mates and guests that I needed to lay down for awhile. My best friend thanked me for letting them know so they wouldn't worry. Today she was recounting the event to her parents while they were visiting, and said something along the lines that I'd just disappeared for an hour without saying a word. I so, so wanted to say, 'Another perspective might be that while I was in my room, enduring the worst pain known to man, no one so much as bothered to check on me or bring me water.' She knows that when I have an attack, I need water. But I didn't. I often think our friends and family understand to the best of their ability, but no one really gets it apart from another sufferer. It's not just the pain, it's the fear, it's the constant worrying about when the next attack is going to be and how bad. I hate this time of year. My worst months for headaches are usually Dec - Feb or March. Things are going to get a lot worse before they get better. MG

Thanks Jeebs, An update. I stayed curled up in bed for a bit longer, then took an eletriptan to clear the lingering headache. That was followed by a hot shower, and the world began to be a better place. I felt inside I was still on edge, and was very careful what I said for a few hours at the risk of snapping at someone. By the time Christmas Dinner was served, I was back to my old self. It has turned into a lovely day with my son and adopted-family here all day. We've had presents, amazing food and movies. Watched 'It's a Wonderful Life', the first time some of the party has ever seen it. Life is what happens between cluster attacks. The key to life is making the most of those times. Merry Christmas and Happy New Year to everyone here. xx MG

It's nice when your friends and family get you some really heart felt presents for Christmas. Such things mean so much to me, and touch me very deeply. It sucks that deep felt emotions are one of my triggers. That's right, a KIP 10 on Christmas Day right between the eyes. Don't know if it was 2 clusters at the same time, from either side of my head, or just one in the middle. But it felt like all of Santa's reindeer where head butting me. Post traumatic stress attack, fluctuating body temp, tears and all. Just needed to tell someone before going out and putting on a happy face. Would rather just spend the day in bed. No, scratch that. Would rather spend the next two weeks shut up in my room, not talking or encountering anyone. Does anyone else get like that? Just wish the world would go away and leave you in peace for, like, forever. The residual headache is starting to fade, so guess I should get up. Maybe just 5 more minutes. They'll understand me being away for 5 more minutes. MG

Thought it worth having a thread where we could post Happy Holiday messages. Not that you can't start your own thread of course. I would like to wish all sufferers and supporters that visit this board a very Merry Christmas and a Happy New Year. May your nights be filled with trips to Neverland rather than to Hell, and may your days be pain free and filled with glee. Well, OK, maybe not the glee. But friends, family and good times at least. MG

Awesome!

Cool idea. Brain freeze is one of my triggers. Actually, any sudden cold, but specifically brain freeze. I can't touch KFC's McFreeze - gets me every time. MG

My CH saying applies here. 'No two cluster heads are the same, and just as soon as you figure yours out, it changes.' MG

This is from Wikipedia: I'm Chronic and the longest recorded pain free period I've had is 23 days. Personally, I wouldn't count that as a period of remission, just a lucky break. If I ever go pain free from 3-6 months, I might start to think about life as an Episodic. I don't think Episodics really get shadows during their remission period, but I may be wrong. MG

A friend Googled vivid dreams, and it came back with a lot of answers, but the one that makes sense in this context is 'so real you think it was real after waking'. So, not just sticks with you, but has you asking if it happened or if it was a dream. Does this sit closer to the mark? Spiny - I always dream in colour. Always have. Toni - There is this thing - forget what it's called - but it turns off your muscles so you can act out your dream while dreaming. Doesn't work for some people, hence sleep walking or thrashing about. Most of the time it works for most people, but sometimes it doesn't switch off after one wakes. This is called Sleep Paralysis - quite normal, quite shocking. Although, you probably knew all this. MG

Could someone define 'vivid dreams' for me? Do you simply mean that you remember your dreams? Or that the dreams are more 'vivid' in action/colour/content than normal dreams? (If so, define a normal dream?) Or were they of an intensity that they either woke you up or stuck with you the following day? I have a pretty good dream recall, but as I said before, it is a skill I cultivated. Last night I had a dream that I had a severe cluster attack while in a store, and while laying on the floor in agony, someone draped a blanket over me so I wouldn't get cold, but generally people just went on with their shopping. I'm 99% sure I actually had a cluster attack in my sleep that permeated my dream, but wasn't painful enough to wake me up. Would that class as a vivid dream? I've died in dreams, and then re-drempt that part of the dream over an over again, trying to avoid death each time. Kind of an 'Edge of Tomorrow' scenario a few years before the movie came out. I can also have 2 dreams at once, running in parallel as each side of my brain tends to think separately. I've been able to flit from one running dream to the other running dream, and back again. Or watch them both from a distance like having 2 TVs playing different shows. I've even had 2 lucid dreams running in parallel on occasion. Once, and this was really odd even for me, I woke up in the morning and started to sit up in bed, but one part of my brain was still dreaming and didn't want to wake up. For a diagnostic or demographic criteria of 'vivid dream', you guys are being shockingly vague. (she says in a joking manor). MG