MoxieGirl

I would like to take a moment and say thank you to everyone on this forum who has either replied to my thread about feeling down, and thinking of an action that would end all actions, and to those who have PMed me directly. I get so frustrated, as I'm sure we all do, by people who don't understand, and are trying to be helpful and suportive. It is like tackling a blazing house fire with a glass of water. But when you guys rally around, and provide support, even at a distance, even via a computer screen, it means so very much more. Even though I do live alone, I don't feel quite so alone anymore. And that means a lot. Also, I've had a full 8 days Cluster Free! Totally amazing! And that is despite some considerable work stress this week that would normally have woken up the demon. I'll be busting tonight, so hopefully, things will only get better. Thank you Renée PS Last year I walked on fire and broken glass. Some friends and I did it as a way of raising money for a charity. After doing that (I had walked on the fire 5 times that night), I came away from the experience feeling like I could do ANYTHING I set my mind to. It was such an amazing and empowering experience. I think I need to remember that more in my life sometimes.

I want to it make very clear, I'm not considering anything rash - soon. And haven't completely decided upon this selfish course of action. I have only been thinking about it, and set a rough date at the end of this year, as a target date where things need to change by. And I am working very hard on things that will make this unbearable situation bearable. I haven't given up, I am a fighter. But I do know, very well, my coping limits. And if I don't find a solution this year, then I know my ability to cope WILL run out. I do still have several things to try, and busting seems to be making an improvement. So this hypothetical date in my diary will hopefully NEVER come to pass or come into serious planning. Also, I do have many close friends. And although they are not physically supportive of me during attacks, they can't be. I do know they will rally around me if they sense, I'm in serious trouble, even if from myself. Perhaps, in a messed up way, setting this date is my light at the end of the tunnel, that keeps me going until I find a better light to follow. Picking myself up after an attack is a bit easier if I can tell myself that I have an out when they get bad enough, if I can only make it to a particular date. Also, I'm not beyond moving that date even further back when I get close to it. So please, don't panic for me.

For the record, I've had 22 clusters this year, and, and it is Jan 21st. So, on average, it is worse than last year. But, the 5 days cluster free has been a welcome relief. May it long continue. But, I won't be able to bust again till Wed at the earliest. As for suicide. I have lived with depression all my life, and have had sucidal thoughts from very, very young until I was 40. The reason was my gender dysphoria. At around 40, I got that sorted out, and the depression left. So I know about seriously considering that option, although I have never attempted it. Why? For the very reasons many of you mentioned. I had people depending on my, namely my son when I was a single parent for many years. But at the moment, I don't have any people depending on me, and my son is grown up. I think of it like this. When you have to remove a bandaid (plaster), you know it is going to hurt for that few seconds you rip it off. But you also know, that when it is over with, it will stop hurting. Yes, I do think about the people I would leave behind, but I also know when it is over with, that will no longer matter to me. The pain, all pain, will be gone. I won't care then. I won't have the stress of carying it all, of coping, of hurting, of being afraid of the hurt. So for all the reasons for not doing it, it is a selfish act, I will leave people behind - none of that will matter afterwards. And yes, that is increadibly selfish. I know that. When I was suicidal all my life, the reason I never did the deed, was because I wasn't selfish. I put other people before my desires. The reason I transitioned from male to female, was so I could still be around when my son grew up. It wasn't easy, and it cost me more than anyone knows. Someone without gender dysphoria trying to understand how hard it is, is just like someone who's never had a headache trying to understand a cluster. You can only understand by experience. And it is an experience I would never wish on anyone. I'm babbling on now, so will stop. But, I've done the whole not doing it because of others before. I fought and won that battle once. It's not fair I'm doing it again. Just not fair. Renée

Thank you both *wipes eyes dry* A handful of months ago, when I started to plant a date in my head when I could no longer cope, I turned to this site. And this site has given me much hope. My last cluster was last Monday, this is Saturday morning. That is the longest I've gone cluster free in months and months. Which I very much attribute to busting. Apart from busting, I have tried just about everything. But I haven't sorted out O2 yet, and I do know there is the medical centre in London that I can get myself too. I also know Bol is probably on its way as well. So I haven't given up hope yet, and am still fighting. And, this potential date in my head is somewhere in Novemeber, so I have time yet. But, still. Despite everyone meaning well, I am single and live on my own. And although part of me knows clusters are hard on partners of sufferers, I also know I would do a lot better if I had someone in my life to help me through all this. Not at a distance like my friends are, and I mean a physical distance not emotional. So I know something has to change this year, because I have a good idea how much longer I can cope with this, as it is, on my own. I had over 260 clusters last year, and I know I simply can't do that again. And very true your comment Mystina, about my friend's comments really meaning that they think I am strong. I hadn't really thought of it like that. For me, it just reminds me how bad they are, and how I don't know how I'm getting through it either. I have hope. I do believe this is going to be a better year. I don't believe I will ever reach 'that date', but still, it is a date I'm unable to shake free of. And also, perhaps, in my subconcsous, it is a safety gap when things get really bad. By setting the date way out there, I have a target. All I have to do is get through this until that date. And probably as the date approaches, I'll set a new date, equally far into the future. Anyway, I've rambled on enough. Thank you for your comments. xx Renée

Apologies for this short rant. 6 words I hate: 'I don't know how you cope.' My well meaning friends often say this to me, and it only serves to remind me that I don't know how I cope either. And in fact, I opened up to one of my friends this evening who said it to me, that, one way or another, I plan for this year to be my last year of having to cope with this battering of clusters. When she inquired more, I explained that if my current plans for stopping don't work, then I have a date in my mind when, well, that will be the end. So her next set of words that I hate were: 'You're not alone, we are here for you.' Although I didn't say any of this, the truth is, they are not there for me. Not when I need someone to be there for me. I know they love me, and are concerned, etc. etc. But they aren't there for me. In fact, no one is. So it winds me up when people pretend they are, or try to make me feel better with an illusion that isn't true. So, what do your friends say to you, meaning to be helpful, but really just winds you up? Renée

In the UK, the Nat Geo listing go until 7 Feb. But, from looking at the list of programs, and the order they are playing in, I'm guessing it is going to air on 14 Feb in the UK. But that is just an educated guess. The UK version isn't following the US version to the letter. As soon as I know for sure, I'll post it. The US episodes went: Crack -> Hash -> Ecstasy -> Hallucinogens. The UK episodes are: Hash -> Crack -> Ketamine -> Ecstasy ->?? The first episode is tonight (Tues, 17 Jan) at 21:00. The UK Listings page is here: http://natgeotv.com/uk/drugs-inc/about Renée

OMG! That is so scary! Now reading the other ones. Great article, thanks for posting. Love the WD-40 story - so that's what it stands for.

That is too funny! The interviewer did a great job in a tough situation though. LOL

Oh, Yes, Of course. Doh! Thanks MW. Will look there. Really looking forward to it.

The Drugs Inc. series is starting in the UK on 10 Jan 2012, with a look at Grand Theft Auto. 17 Jan is Hash. 24 Jan is Crack. But, I can't find any TV listings for Feb yet, and I'm guessing this episode will be in Feb in the UK, if they follow through with all the episodes. The full episode list is something like this - from looking at the Nederland listing: (and in no particular order) Heroin Meth Cocaine Ketamine Cannabis Hash Ecstasy Hallucinogens (13 Feb on the Nederland's channel) Designer Drugs Pill Nation But, not sure what order the UK is going in, or when the episode will show over here. But it looks like it will show. Link to the Nederland page: http://natgeotv.com/nl/drugs-inc/over Link to the UK site: http://natgeotv.com/uk/drugs-inc/about Really looking forward to seeing it. Eventually. LOL Renée

I'm new to busting too, and am also off meds. Busting is my last, and perhaps best, hope. My shadows have pretty much gone since busting. I've also noticed I don't get the bad post traumatic shock, curled up in a ball of tears, after bad attacks. I JUST had an attack in fact, a force 10 killer, curled up on the bed, etc. etc. And afterwards, just back to normal, carrying on. In the past I would have 30 minutes of crying afterwards while I try to pull myself back together. I'm shattered, so off to bed in a few minutes, but not crying. My busting pattern has been shrooms, seeds, seeds, shrooms. Not sure if that makes any difference. I prefer seeds, less trip affect, and the slap backs don't seem so bad. Best of luck to ya, xx Renée

Don't know if anyone reads XKCD, but I always think of this cartoon when I have a bad cluster. http://xkcd.com/883/

And the same to you Pixie. Has been great getting to know everyone here, and having hope once more. Happy Busting everyone. xx Renée

Hi Anthony, I'm chronic, have been for sometime now. From what I understand from reading the forum, chronic is harder to break than episodic. Granted, it probably depends on when the episodic starts busting. From what people say, the earlier they start in their cycle, the easier it is. But us chronic's have a real battle. I've busted 4 times now, twice with seeds and twice with shrooms. I haven't noticed any difference, and if anything they seem worse. But that could be just because I'm not on Topiramate any longer, and am getting slap backs. I'm confident that eventually busting will make a difference, and I'm sure it is changing things, even if I can't tell yet. Hang in there. Renée

*smiles* Thank you Bejeeber. I plan on publishing it soon as the novel is finished, just need to wait till the Christmas period is behind us. I've recently started on book 2 in the series. My goal is to be a novelist, but work keeps getting in the way.

WOW! What an interesting read. Thank you for posting. Renée

Very interesting! Thanks for the info and I'll do some looking into it. I've been told I can write well. For example: (my website) www.katera-assassin.co.uk Renée

Happy New Year to you too Pixie, I do, very much, believe Testosterone is the key to all this. Omega 3 increases it some, and I think that is why it's such an important ingrediant in the D3 regimen. But anyway, take care and watch what you take. LOL xx Renée

I'm like you Pixie, I'm the one it never works on. Or has an allergic reaction to it when no one shouuld, like I'm having with Vitamin D3. Argh! When my neuro suggested coming off the hormones, he did say it would get worse before it got better, and that I might have a rough time with migraines for a few months. But eventually it would stop. In reality, nothing changed. They didn't get worse or better 5 months on. And now I'm busting, if things do improve, I won't be able to say for sure if coming off hormones made any difference. Hugs

I never expect miracles, just hard work. xx Renée

Hi, This topic came up in another thread, but not wanting to take over the other person's thread (so tired of the pain), I thought it worth pulling out and starting my own thread on the subject. Below is my original post in that thread, which explains more about my clusters and what triggered them. Since having surgery, just over 4 years ago now, I have been on a 2mg maintenance dose of oestrogen. About 5 months ago, my neuro thought that it is this oestrogen that is fueling my migraines, and said that if I came off of it, they would stop completely. He has given this advice to countless genetic women on HRT, with 100% success. So I stopped taking the oestrogen. But, I had read once there is great risk for people of my gender to not take their maintenance dose. So next month I'm going to have my hormone levels checked to see if my body is producing enough oestrogen on its own. Will also get my testosterone levels checked at the same time. And, coming off oestrogen hasn't seemed to make any difference to my migraines. Renée

Thanks Mystina for your comments. I used to be on a 2mg maintenance dose of oestrogen. Then, about 5 months ago, my neuro thought that coming off of that would stop my migraines, at least it does in genetic woman undergoing HRT. So I stopped it, and at the end of Jan my doctor has agreed to get my hormone levels checked. We mostly want to make sure my body is producing enough oestrogen on its own that I don't need the maintenance dose. But I am also going to make sure my testosterone gets checked for this very reason. But, taking a testosterone pill doesn't just automatically raise ones testosterone levels. It's not that straight forward, and I have to be very careful about it triggering other aspects in my body I don't want! Will report on it in my diary next month. Alleyoop, I know what you mean about the idea being completely foreign to you. That's normal. You feel normal in your skin, so why would you consider changing anything? I didn't feel like you feel until I was 42. Not a day went by before that, that I didn't hate the body I was in. Perhaps I should start a new thread on this topic, don't want to take this one over from the OP. Renée

Thank you both for your comments, it is much appreciated. The OP is about being 'so tired of the pain'. For me, it is more about being so tired of the depression, suicidal thoughts and yet another battle. Although the pain plays a part too, of course. I lived with depression and suicidal thoughts all my life, until that is I started transition. Taking hormones lifted me out of depression for the first time, ever. And when I finally had surgery, it was like a miracle. A wish come true. But then there were the really bad migraines, more frequent than I've ever had before, the daily chronic headaches and of course the clusters. All this has returned me to a life of depression and suicidal thoughts. Just when I thought I'd fixed 'me', and life was going to be better. That is my real hatred of the demon. That is what makes me curl up in a ball and cry at night. And for the first time in 5 years, I have hope. Hope of defeating, yet again, depression. Hope that I can wake up in the morning not thinking about making this my last day on Earth. If I had known cluster headaches was going to be a result of transition before I started, I would stil have transitioned. That decision in my life I would never change. And as for having balls, well, I fed them to a dog after surgery. Renée

Excellent description Spiny, but I've never had anything like that. When my clusters started, 90% of the time they hit me at 19:00 and/or 19:20, and often on a Tuesday. If 19:30 came around and I hadn't had an attack, I knew I could rest easy. But that was only the 1st year. Since then, I get attacked anytime of the day or night, and usually out of the blue. No warning, just WHAM! And I have no indication it is over for the day. Ever. Renée

I've signed the petition, but live in the UK (American by birth). Don't think I'll be able to make it, although I'm currently working for a company with offices in the States, and should be making occasional trips 'home' for work. So if the dates work out, I'd love to be there.