MoxieGirl

Hugs. Understandable concerns. Last time I saw my neuro, he suggested I come off my daily dose of oestrogen because, for genetic women who have migraines, stopping HRT usually stops their migraines. Didn't work for me though, and I find things better being on them. So professionals don't always have the answer. When I was transitioning, and taking massive amount of body altering hormones, one of my doctors switched my hormones to a patch version, and it is after this that my headaches got massively worse, and the clusters started. My neuro says it doesnt matter which hormones I took, that my hypothalmus was per-disposed to clusters, and changing my hormones triggered it. But I don't think so. I had been on a different hormone for months with no negative sideaffects. It wasn't till I switched that I was messed up for life. So my advice would be to try different hormones. I had tried one that gave me a migraine within an hour of taking it, but others had no such affects. So maybe there is one out there that works for you. Hope it all goes well. Xx MG

Hi, Comments on another thread got me thinking about triggers, and wondering what kinds of triggers people have. The thread was talking about car exhaust and fuel triggers. Which I hadn't heard of before. And people mentioned other interesting triggers too. Here's my plan. Get some replies to this thread with various triggers, then create a short survey where people can go and tick which triggers they have, and find out the results. I'll post the link to the survey on all the CH type boards I know of (this one, clusterheads, OUCH). 1. So, what's your triggers? Mine are: Cold Strong emotions, such as crying Sometimes, sex Relaxation Lack of sleep 2. What keeps your clusters away? Work (usually) Having a regular sleep pattern, and getting enough sleep 3. What do you use to abort your clusters with? That's probably a good start on some nice questions. MoxieGirl (aka Renée)

Pixie - move! I've lived in Texas, if you are heat sensitive, you are so living in the wrong place. Come to England, we don't suffer from heat here. LOL kymera, buy yourself one of those face mask filter things, and wear it as you drive back into the city. Then, when home, hopefully you'll adjust to the air polution more slowly, not being on the road and surrounded by cars, and if you do have a cluster, at least you won't be driving. I hate hits when I'm driving, and I do a lot of driving. As mine are often moderately mild, and short, I can sometimes keep driving through it. But often have to find a place to pull over for 20 minutes. They are definitely the 2nd worst time to get hit in my opinion. I'm sensitive to cold, and a sudden shock of cold, like someone trying to be funny and put ice down my back, will trigger an attack. MG (aka Renée)

OMG! Will be keeping an eye open for your post about the surgery. Hope it all goes well. xx MG

Hope you slept well MrsGrneyedldy xx I'm chronic, and was getting hit every 1-3 days, 1-5 hits a day for over a year before I busted. I started busting on 15 Dec, and my last bust was on 8 Feb. In that time I had taken mushrooms twice, and RC Seeds 7 times. In Jan I had a 12 day gap between clusters, and am now routinely experiencing 4, 5 & 6 day gaps. And, 90% of the time when I do get hit, it is very short and very mild. Since March 1st, I've only had 2 bad clusters (a 7 and an 8), and a hand-full that were 5 and below, mostly 3's. Also, I've had only 1 migraine this year, which is unheard of for me to go 3 months with only 1 migraine! And, Jan/Feb are historically my worst months of the year for headaches and clusters! So, keep it up. It does help. xx MoxieGirl (aka Renée)

Hi You sound as bad as me. Daily chronics, typically 5 days out of 7. My longest headache lasted 7 months. Plus, migraines of course. They are getting better. And then add clusters on top of that (won't need to mention shadows and ice picks, they come with the game). The daily chronic headaches and clusters started 5 years ago, but have had normal headaches and migraines all my life. Is oxygen and botox a waste of time? Don't know. Each person is different, and what works for one, doesn't always work for another. Oxygen is great for clusters, and can abort them very quickly if taken in time. Botox, from what I've read, only helps if you have migraine with aurors. I don't. I started busting back in Dec, and it has seemed to help my migraines and dailies as well. Also, I have recently started back on a maintenance dose of oestrogen each day, which will also increase my testosterone. A lot of us think there is a connection between low testosterone and clusters. So increasing it should help. Hope you find something helpful in all that. MoxieGirl

Yes, significantly better than a couple months ago. Although I rarely have them at work.

Had a cluster today while I was teaching a course. That is SO not on. Wasn't a rolling around on the floor one, about a 3 on my pain scale. But it lasted a 1/2 hour-ish, and felt like someone was drilling a hole in my skull near my eye. Thankfully, it started just before we broke for lunch. Over all, things are better, but that wasn't nice. MG (aka Renée)

So, my clusters SEEM to be diminishing a bit. For the last 12 months I was getting hit pretty regularly every 3 days, give or take. In the last couple of months, I've been experiencing longer gaps, and less severe clusters (for the most part anyway). Looking on my spreadsheet, there are still several days where I got hit in a row, or with small gaps. But apart from one or two, they have been pretty mild. My last bad one was over a week ago, and I've only had a few very minor ones since. In fact, in the early hours of this morning I had a dream I was having a cluster, and probably was. It was just so mild it didn't wake me up. At the beginning of Feb, the number of days this year I had clusters was 83%. It has since dropped to 77%. So, not sure if it is a direct result of busting (at least some of it is) and/or if because I recently started taking hormones again. Either way, I'm happy about it and enjoying having more than one or two days in a row pain free. Also, as a side note, I've only had 1 migraine this year, which is just unheard of for me for a 3 month period, espeically considering that last year I had 42 days with a migraine. Also, in the last couple of weeks, I've noticed a massive drop in daily headaches. In fact, I haven't taken a pain killer for a week and a 1/2! I don't think I've gone that long without pain killers for 5 years. MoxieGirl (aka Renée)

Ooopsy LOL you're right, I wasn't paying attention... but if you notice on the left on the urban dict page, there are other entries, one is moxing, the other moxieman... I suppose this relates to American slang English? One of many reasons I like living in the UK.

Hi Purple, Thanks for the link and info. But, even looking on the urban dictionary, moxie is always a noun, can't find an example of it being a verb. Some of the definitions are: sass, courage, spunk, determination, attitude I will take this as the American use of 'spunk' which goes along with sass, courage, etc., and not the UK meaning of the word 'spunk'. a hot chick or possibly a hoe. originated from EzFang. This is the only place I have ever seen it associated with 'hoe', although have also seen hot or attractive woman. I Googled EzFang, and couldn't find much info of value, so not putting a lot of stock into this meaning. noun. unmitigated gall. Unmitigated - that works for me. Having moxie means having enough cleverness, skill, creativity, fortitude and cajones to solve (or, at least, to get out of) a difficult and personally threatening situation. I'll stick with MoxieGirl if it's all the same.

Very true indeed. But as someone who has changed their real name, I have faith that people will catch on eventually. It might help though if I sign my posts as MG (aka Renee) or MoxieGirl (aka Renee) for awhile. Just to ease everyone into it. Plus, not changing my avatar, so that might help people identify me too. It is rather a distinctive picture. xx MG (aka Renée)

Hi guys and gals, Awhile back, Bonkers said: "Hi, Renee. An old term, from the name of a mid-last-century soft drink: moxie - applies to you in spades." I looked up Moxie, and couldn't agree more. So have decided to change my online name to MoxieGirl. Moxie, from dictionary.com means: vigor, verve, pep, courage and aggressiveness, nerve, skill and know-how. Not to be confused in any way with MoxieGirls - website designers in the States, or Moxie Girlz, which are cute little dolls. MG

Funny you say vending machine... I once had a GP of whom I said you'd get more emotional response out of a vending machine than he was capable of. He did things by the book too, including prescribing me an anti-biotic that I had such a severe allergic reaction to, I ended up spending the night in hospital on morphine. Needless to say, I switched surgeries and found a doctor I could talk to. Even at this surgery, there are doc's who do things by the book, I just don't go to them if I can help it. In fact, I'll wait weeks in order to get an appointment with my GP instead of the others at the surgery, even though they are all also quite good. Finding the right, understanding GP, is so very vital I believe.

It's one thing when our friends and family make stupid suggestions. I don't expect them to understand without a bit of education. But from a doctor! REALLY! I've said it before, at times like that, I wish I had a super power where I could touch someone and let them experience one of my cluster attacks.

I'm not a red head, but had an orange tinge in my hair when I was young, and freckles. I colour my hair a dark red these days, as red looks good on me. I quite possible have a small aspect of the red head gene in me somewhere. Renée

Worst year cluster wise, better for daily chronic headaches and migraines.

I may have started chronic, not too sure. My first year with clusters was hell - is there a Hell category of headaches? I had a 7 month headache, nearly weekly migraines and frequent clusters. After that I went episodic for a couple years, and I am now definitely chronic. Well, until busting that is. Ask me again in a few months.

Almost seems funny (if it wasn't so serious). Psilocybin and LSD, etc. are illegal because of the hallucinagenic trip you might get from them if you take more than a very small dose, as in our case. This trip might last 2-4 hours or so. And yet, there are a whole list of legal drugs (that don't seem to work nearly as well) who's list of side affects are a page long, last for weeks, and could potentially kill, or hospitalise ya. Only governments could apply such backwards logic to a situation.

Then there is this article: http://www.jmedicalcasereports.com/content/6/1/64/abstract I haven't read the complete report, but from the abstract, it sounds like this nasel solution worked on one person, and then they draw this conclusion, 'Intranasal lidocaine is a useful treatment for the acute management of a cluster headache.' We all know that what works for one person won't always work for another. Anyway, thought it interesting.

I'm light and sound sensitive when I have migraines, but not clusters. And I find it a bit weird, the difference. How my head can hurt during a migraine and even the mildest light is excruciating. But, with a cluster, bright light and loud sound is fine. Renee.

I found this news article today about, well, not really sure what it is about. It starts out promising tips on treating headaches, but not really sure it accomplishes that. What I did find interesting was the casual mention of Cluster Headaches. Just really like how they are making the news more. Increasing awareness is always a good thing. http://abclocal.go.com/kabc/story?section=news/health/your_health&id=8544176 Renée

Totally! Has made me think about changing my nick to 'iHurt'. but everyone knows me as Renee, so probably a bit late. But clever.

Thank you, I like that, a lot. Might have to change my online handle to moxie or moxie girl. Lol

Thank you everyone. Yeah, has been a tough ride. When you budget the costs of changing your gender, one usually factors in things like hormones, surgeries, a new wardrobe, etc. you can't predict things like the two sisters who are no longer talking to you, or not being able to see your, now 8 year old daughter for 5 years. Then, after all that, changing my hormone system triggered clusters. That said, I wouldn't trade the experience of having 2 genders, and being able to understand both men and women, for the world. Even if someone told me clusters would be the result, I would have still done it. You single gender people are missing out on so much. LOL As far as the O2, I work away from home for most of the week. So can't really say I haven't been contacted this week until I get home. Renée