MoxieGirl

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.

Not sure if this is a directly related note, but relief for PTSD is a real benefit of busting with psychedelics, which are also being used in clinical settings to effectively treat PTSD unrelated to CH. My personal experience is that post busting I can no longer summon up the sheer terror regarding the possibility of CH attacks that used to always be there (not that I'm assuming future visits from the beast couldn't undo all that - don't wanna jinx myself too bad here! ) WOW! I hadn't realised that, or had forgotten that I read it somewhere. I know what you mean about the sheer terror. I once wrote a piece about how the PTSD was so bad after an attack, it was like I was a child abused by their father in an alcoholic rage. After attacks, I would shake and cry to that extent. A friend of mine had a real go at me for writing it, said I had no right to make that comparison. But she doesn't really understand. It is just the same. Absolute terror! But, since busting, I haven't had that. Not once. I keep expecting it, waiting for it to strike, but it doesn't. I have an attack, it ends, and I get on with life. No 30 minutes of tears and the shakes racking my body. Thank you for bringing this benefit to my attention. Renée

Ditto. Well, not twitter.

I don't think I've really ever felt any of that. In 5 years of having them, my longest break has been almost 2 months. I think, in that gap, perhaps I relaxed a little. But I'm always on edge, always expecting the next one at any moment. My friends say that is a bad thing to do, that I should try and forget them. But they don't understand. They don't know what shadows are like, and to have that shadow hanging over you 24/7. But, since busting, the shadow has cleared and there isn't a demonic presence in my mind between attacks. I haven't relaxed yet, still waiting for the next one. But I can imagine a day will come where I might. Renée

I've mentioned that my clusters started 5 years ago, but I haven't mentioned why. Perhaps unique to most people here, I know exactly why mine were triggered. I haven't mentioned this before on this board, but the topic of testosterone is near and dear to my heart, and probably my clusters too. 5 years ago, I changed my body from a testosterone based one, to an oestrogen based one. That is to say, I was born male but am now female. At the time, I was on a very strong anti-antigen, that effectively shut down my testosterone, and at the same time on very high doses of oestrogen. That is when my clusters started. I know I have a lower dose of testosterone in my body today than I used to. Even before I had the vile testosterone producing glands removed from my body. One way to tell is in the strength of your fingernails. Strong, unbreakable nails means you have quite a bit of testosterone. Brittle nails, means you are low on testosterone. Not a precise measurement I know, but a rough indicator. I had strong nails up until 5 years ago, now they are extremely brittle. So, there are a couple of theories here. It is believed that when a person changes their hormone system, as I did, it alters or impacts on the hypothalamus. Which of course is also suspected to trigger clusters. My neuro believes my hypo was predisposed to clusters, and changing my hormones just triggered it off. But, I believe Omega 3 seems to help with one's testosterone levels. I have friends that take it, and all report to be more horny, have stronger orgasms and more energy - additional signs of higher testosterone, like the fingernail test. My neuro doesn't think that if I increase my testosterone, it will help with my clusters. But I'm not sure I believe that. I think it is a key ingredient, and a possible explanation why Omega 3 is so helpful. Also, during my HRT process, my doctor had tried me on a few different forms of oestrogen. I started taking a pill form, that seemed to be OK for my body. But he switched me to patch because it was suppose to be better. But it was while I had the patch that the clusters started. I went back to the pill, and although was happier with it, the clusters have remained. So, I'm not 100% sure it was just the fact I altered my hormone system, or could it be that my body didn't agree with the type of hormones I was getting in the patch. I will never know. So, that's my story with testosterone and clusters. I very much believe the two are linked. Renée

247. *swears out loud*

I'd like to wish everyone a Merry Christmas and Happy PF New Year. I'd also like to thank everyone who has worked so hard in developing the Busting regimen, and for helping me out personally. I'm hoping for a better year in 2012 than 2011. 246 Cluster Attacks this year, and I imagine I'll reach 250 before the new year. xx Renée

Jeebs, I agree with you, headache is such an inappropriate word. I tend to call clusters the tsunami of the headache world, but even that doesn't do it justice. I like 'Attack', but 'Explosion' works well too. I can very much relate to the image of a Demon for my clusters. In my mind, it is a black shadow, a shadow demon in fact, that comes out and attacks me. Sometimes it hides behind trees (I once planted a tree and flowers in my mind to be a place of peace and calm), or other places in my head, but will sneak out and attack when it wants. It is smart, cunning and relentless. Renée

Great information! Thanks kaboom. I'm looking forward to feeling better for the first time in years. Renée

Thanks Dan. I got rid of my TV a few years ago. I just don't have the time for it, between working a full week and writing in my spare time, it is a distraction I don't need. The good shows are available on-line in the UK anyway. And I download anything else I need, such as The Big Bang Theory. That said, I have converted my 2nd bedroom into a mini cinema. So when I watch movies (something I do really enjoy), it is on a 6' screen with surround sound.

Does anyone know if it is also going to be shown in the UK? Or is the Nat Geo channel world wide these days? I don't have a TV, so don't keep up with these things. Renée

I'm busting this evening for the first time, and am thinking of something between 1 gram and 1.2 grams. Renée

Hi Ricardo, Thanks for the info, and advice. Like you, I rarely get clusters in the night, although that is on the increase. Also, mine rarely last 30 minutes (although they are getting longer), they are usually under 10 minutes. And I don't get a droopy eye or face. But, runny nose and tear duct activated, yes. Actually, I like your wording, 'trash about', because if I have a bad one, I will do that. I may start out being all focused, but if it gets really bad, I will roll around and trash about on the bed quite a bit. Didn't think of it that way. Thanks

No, I know it's not an option, to be agitated during an attack. But makes for a catchy title. In Anthony's thread, 'hello all', the subject came up about how many people have a slightly different experience with clusters, as mentioned by Ting. I didn't want to take over Anthony's thread, but have a question about it. One of the 'typical' symptoms is agitation. And my GP asked me this morning, when talking to her about O2, if I get agitated during attacks. No, I don't - but I told her yes because it IS a typical cluster headache indicator, and I needed her to do the paperwork for O2. I used to. When they started a few years ago, I couldn't sit still. Had to get up and walk around, pace, bang my head, shake my body. But recently I don't so much. I can. It's not like a migraine where movement hurts - and I think that is one of the things she was asking about this morning. I tend to curl up in a ball, remain pretty still, and just focus on my breathing and the pain. But, perhaps that is just me and how I deal with pain. I'm coming at this with a different approach to pain than most people, and have different coping techniques. So, I have said all that to ask: do other people not feel the need to be agitated, to pace, to climb the walls as it were, during an attack? Renée

What a great idea, and well deserved to everyone mentioned. And thanks for the links to the Nat Geo doc.

Amazing! Simply amazing, and wonderful. Thank you.

I found the following article awhile back, and thought the last 4 words were a bit headline grabbing. I posted it on CH.com, and most people were along the same lines as AO, in that no way would they even consider sex during an attack. http://www.guardian.co.uk/lifeandstyle/2011/oct/17/mapping-the-body-trigeminal-nerve For me, on the other hand, I've had many clusters triggered by the solo variation. Perhaps I'm doing it wrong, or just alone isn't the best way.

Thanks for the heads up. It seems shrooms have some pretty wide ranging affects on people.

Hey Zac, My body also very quickly adjusts to the meds I'm taking, and I'm constantly having to increase the dose. Topiramate, when I was on it, would work for about 2 months, then stop working unless I increased the dose a bit. For a year or so, I was constantly worried about what would happen when I reached the max does of Topiramte. But no more. Not on it now. The same is true for triptans I take for migraines. After a few months, they will stop working and I have to switch to another one for 6 months or so before the first one will start working again. There have also been meds that I would routinely double, and then some, before they would even take effect. And other meds a 1/2 dose is enough. So I found it really interesting what your psych said about different bodies processing meds differently. I'd love to read more on it if you find any information. And yes, I am going to be quite careful when testing the waters with RS and Shrooms. ETA Lack of sleep is also a trigger for me. Although I generally sleep well, I have a rule where I never have 2 late night social events in a row, and never more than 2 in a week.

Here are the details of the lawsuit. If you were pregnant while taking Topomax (Topiramate), and your child was born with birth defects, then you probably have a good case. http://www.topamaxlawsuit.com/ There is other information out there as well if you Google on Topomax Lawsuit. Don't know about embedding YouTube.

Do you ever feel that if the power and energy of a cluster wasn't contained in your head, if it somehow escaped, exploded into the room at large, that its power would be devastating? That furniture would fly around the room, tables would be shattered into splinters and the very foundations of the building you are in, shaken as if an earthquake had struck. I call clusters the tsunami of the headache world. They strike without warning, and are utterly devastating. And in comparison to a headache or migraine, well, there is no comparison. Just like you wouldn't compare a tsunami with run of the mill tidal wave.