MoxieGirl
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Posts posted by MoxieGirl
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On 3/13/2019 at 9:26 PM, xBoss said:
Funny you say that moxie because I always read about how CH makes it so you cannot sit still but I like to press my head into the bed or floor and sit very still in the dark and I also used the term hide from the pain by trying to get into portions of my head that kinda hide from it.
Yeah, the self inflicted pain stuff, hitting, stabbing etc. is pretty normal IMO. We gotta do what we gotta do!
When mine started I found it difficult to stay still. Would pace, and rock back and forth, roll in the bed. Like ants crawling under my skin and I couldn't stay still. I have bad migraines too, and often can't move at all with them, which was one way I could tell early on if it was a migraine or cluster coming.
But, in recent years, I like to curl up in bed and just get lost in my head. I drill deep down into thoughts and storylines, work through logic puzzles, anything to occupy my mind and shut down my body. Suppose it's a sort of meditation. If it's bad, I'll still rock back and forth, the pain does reach a point where there is just no choice.
MG
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What Devonrex says, plus..
I think most people refer to clusters as the Beast or the Demon. I tend to refer to us that have them as Cluster Heads.
If I'm getting hit a lot, I'll usually turn to Mt Dew as my energy drink of choice, nice and cold as well. Coffee helps sometimes. But any energy drink will do. It can help abort, but I like it for recovery afterwards when my body is low on sugar and energy.
The important thing this site did for me was give me hope. The Beast can be stopped, or at the very least brought under control. When I came here, I had gone through all the doctor prescribed meds, and my clusters were at their worst. I was getting 2-5 attacks a day every 2-3 days. I'm chronic, so that had been going on for about a year, getting worse as the year progressed. I literally, was putting a date in my calendar to kill myself when I joined this forum. I decided to give myself 1 year to see if the methods on this forum worked, or if I could find another solution.
That was 8 years ago.
I recommend diving in the Cluster Buster Files section, and reading all the numbered files, and ask questions. The people here know a lot, a lot more than doctors do (in my humble opinion). And we are all keen to help.
xx MG
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On 3/14/2019 at 11:46 AM, devonrex said:
Just when you think the 10 you are experiencing is the tenist ten you could ever have, you have a new definition of ten. To the point the 1-10 has become more of a sliding scale, with high, mid and lows to each number.
I know what you mean. When my clusters were really bad, my worst ones were a 14 on the 1-10 scale. Now I've had a few years of mostly mild ones, something that I once considered a 1 or 2 is a 4 or 5 just because my 'normal' has shifted.
On the boards, I use the KIP scale, as it is so commonly accepted, but I tend to think of my pain in these terms.
- Annoying
- Disruptive
- Sharp
- Painful
- OUCH!
- *stream of swear words*
- breathe, breathe, breathe....
- Extreme pain
- Beyond words
MG
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On 3/14/2019 at 2:20 PM, ThatHurtsMyHead said:
SwiftLaw must be a sailor. I don't think anyone else would get that. ha ha... Always Reef Early. That, and make sure you watch the wind direction. Never had an accidental jib, and don't want one either.
(ok sorry, I'll get back on the thread subject, ha ha)
J
I'm a sailor too. Am so very addicted to it.
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Claudia,
Welcome to the forum, sorry you have to be here.
I don't often get hit at night, most of mine are in the evenings and weekends. But, I have had times where the pain didn't wake up, but I woke up afterwards (often the cluster invaded my dream). And when that happened, I had the symptoms, runny eye etc.
I also get a lot of migraines, and have had painless migraines, where I get all the other symptoms apart from the pain. So, I can happen with clusters too, although extreme pain is one of the primary signs. Granted, could say the same thing with migraines.
You asked on my post about Doctors vs Patients what Busting and some other terminology is.
Busting is essentially stopping cluster attacks with non-traditional methods, some of which aren't strictly legal. As the General page is open to the public, I won't spell it out in detail here, but if you want to start a post on Theory & Implementation, for example, will be glad to go into detail for you.
KIP is another term you'll see here. The KIP scale is a 1 - 10 pain scale a lot of people use to describe the level of pain from a cluster. It's named after the late Mr. Bob Kipple from one of the other Cluster forums. He was the first to write it down, and here it is in full. Personally, my cluster scale is slightly different from how the KIP scale describes them, but if you say I had a KIP 8 last night, everyone pretty much knows it was hell.
Keep asking questions, we are here to help. You're not alone.
MG
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When they were really bad, I'd take a fold of skin and press a syringe through it, and out the other side. I'd do 3-6 of them in a row. The body can only process one source of pain at a time, so when you introduce something new, something intense, the focus of the mind switches to that. If you want to Google it, it's called 'needle play', but don't do it if you're squeamish.
In more recent years, I've learned how to hide from the pain in my head by focusing on numbers, maths, logical puzzles. This moves my thoughts to the left side of my brain, as it seems the pain is centred in the right side.
I'm weird, that's Ok.
MG
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This popped up on my Facebook feed today, and I thought it apt.
QuoteDoctor: Don't confuse your Google search with my 6 years at medical school.
Patient: Don't confuse the 1-hour lecture you received on my condition with my 20 years of living with it.
MG
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Hi Henrithree,
Topomax is a tough one. (We call it Topiramate here in the UK, so you may catch me using that name, same drug though).
My clusters where pretty bad when my doc started me on it. It was the 'last resort' after a long list of other things that didn't work. I was told about 50% of people that try it can tolerate it, and tolerate is the right word. No one enjoys it.
I was, apparently, one of those 50%, but it still took me 3 months to adjust to the side affects. Some good, some bad.
Here's what I remember...
- Every time I altered my dose, I felt like I was on a roller coaster for about 24 hours. I once remember being afraid to stand up at my desk at work because I felt like I was on a non-stop roller coaster for 45 minutes, and knew if I stood up I'd fall over.
- Coke tasted like saw dust. Literally.
- I couldn't stand the taste of McDonalds, or most fast foods (not a particularly bad thing)
- I'd get about 1/3 of the way through a meal, and just get bored with food and stop eating. ( l lost a bit of unneeded weight, which eventually was the main reason I stayed on it so long)
- When I was tired, I'd get REALLY bad double vision. Have you ever dragged a window across your computer screen when the memory couldn't handle it, and it creates a dozen echos of the window, or image, on the screen? That's what this double vision was like with any vertical straight line and lights. If I turned my head, all the doors in the room would echo, and where 1 door was, I'd see 10. It was worse driving at night. Car lights, tail lights, street signs and trees would all echo like that.
- Then there was the general grogginess and just being out of it, numb emotions, tired a lot.
And what did I get for all this?
I was getting hit 3-5 times a week before starting on Topiramate, when I finally came off it, I was getting 2-5 severe attacks a day every 2-3 days, each lasting 2-4 hours. My clusters increased 10 fold. That's when I put a date in my calendar on which I was going to exit planet Earth. That's also when I created an account on this forum. That was 8 years ago. The methods you'll find on this forum actually work and won't screw with your head.
Just my personal experience with it all.
I'm a chronic cluster head, have had clusters since 2007, all year round. But my clusters now last 30 seconds to a few minutes, might hit a KIP3, or a KIP 5 if it's a bad one, and I get 1-4 a month. To be honest, I don't really notice them.
MG
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Hiya,
I wrote up my method for doing seeds a few years ago, lots of people find it helpful.
Moxie Girl's Seed Recipe (in the Files Section)
I'm from Iowa living in the UK, if that help.
MG
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Had a cluster attack the other day that started out feeling like I had an itch between my skin and my skull, just above my eye. Almost like there were 100 ants, or beetles crawling around in there or something. Then, the itch turned to fire like someone had shoved a burning fragment of coal under the skin. Then, the real pain kicked in.
Thankfully, it was a short one.
Just wondering if other people had that similar sensation. I get it from time to time. I think it's one of about 10 different sensations I get at the start of a cluster attack.
MG
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Hi Siegfried,
Being Chronic isn't as bad as it sounds, especially as it sounds like you have things mostly under control. I've been Chronic for a long time now. I'm actually unsure what it would be like to be episodic. To go months pain free, and them, WHAM! out of the blue, another cycle. At least I know a cluster attack is never all that far away. it's just something there that I deal with occasionally.
That said, my clusters are pretty trivial these days. I'm getting 1-4 a month that last a few minutes are top out at a KIP3 most of the time. Once or twice a year I'll get a 30 minute KIP6. But, it's my chronic migraines that are my current Hell. 250 last year, and they're getting worse.
Hang in there. Life is what happens between headaches.
MG
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Vitamin D is a good thing to check, also your testosterone levels. Low T can be a cause of headaches (I believe).
From what you describe, it doesn't sound like a typical, by the book, cluster headache. But, I'd recommend seeing a neurologist for a formal diagnosis.
A 'by the book' cluster headache will last between 1-3 hours, be 1 sided, usually be in or behind the eye, but not always, and the pain is beyond belief. It's not a case of stopping work for a bit to deal with it, but rather stopping work and slamming your head into the wall for an hour, or rolling on the ground holding your head, pacing across the room crying out in agony, level of pain. I've described it as having a gang of men break into your house, pin you down and saw off a leg without anaesthetic while using a dull, rusty saw - every day. It is that level of pain.
There are other types of headaches that happen regularly as well as clusters, so worth getting checked out by a professional who understands headaches.
MG
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Fiona,
My tinnitus has always been linked to my poor hearing. It essentially rings at the frequency of my deafness. The brain is trying to generate a sound where no sound is possible. But it is always worse when I have a headache, migraine or cluster.
I can ignore it 90% of the time, and it only flares up when the head pain is bad. White noise can help too. You can download some white noise generators to your phone and listen to it once or twice a day for a bit.
MG
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Making these up as I go along, just having a bit of fun. You're welcome to add some of your own.
- First rule of clusters: No two cluster sufferers have the exact same symptoms.
- Second rule of clusters: Just as soon as you figure yours out, it changes.
- Third rule of clusters: Try everything. What works for you may not work for others and vice versa.
- Forth rule of clusters: My triggers are not your triggers, and your triggers are not mine, but they might overlap.
MG
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I have to agree with Siegfried on this one.
I've tried yoga a handful of times, most ending in a migraine or a cluster headache shouting at me from within a migraine.
The last time I went to such a class, it was billed as a Yoga/Tai Chi/Pilates mix. I love Tai Chi, and am Ok with Pilates. There was about 3 minutes of Tai Chi, 5 minutes of Pilates and then an hour of Yoga. When it was over, the migraine had already started building. By the time I got home, it maxed out and turned into a cluster attack. I spent the next hour in tears.
Especially the Downward Dog. Yes, let's just put our head on the ground and stick our butts in the air so all the pressure and blood goes to our heads. Yeah, like that's an idea.
Am pretty impressed I wrote all that without swearing, even once.
I hate yoga.
MG
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As a migraine sufferer (as well as clusters) my nervous system is normally very sensitive. Much of what you mention can easily, and often, trigger a migraine. I read once that frequent headache/migraine sufferers tend to be more sensitive like that.
MG
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*swear word* Hell.
2 hour long migraine just after noon today. Pain killers eventually worked.
Migraine 2 started building about a 1/2 hour ago, so thought I should take some pain killers before bed so I could sleep. Just took pills with juice, and SLAM! Cluster headache hits me in the right eye like I'd been poked with a hot spike.
It didn't last long, a few minutes, but then reverberated from the right to left side of my head. Then just bounced around awhile. Migraine is now resting on the top of my head.
And this wasn't even my worst day this year. So tired of this *swear word*.
MG
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When I just paste a link into the body of my text, I normally get an error message saying something has gone wrong. Here's the best way to do, quickly, easily and without fault.
- Go to the website and copy the link to the clipboard.
- Type a few words into the text box regarding the link, such as, 'Click here for more information', or something along those lines. The, highlight that text.
- Return to your forum post, and click on the chain link picture in the toolbox at the top of the text window. It is just between the strike through icon and the double quotes icon.
- This will open a box with two text fields.
- Past the link into the top text field.
- The text you have highlighted should appear on the bottom text field, this will be link people need to click on. You could, in theory, past the link into both boxes, but this doesn't look as professional or cool.
- Click the Insert button, job done.
Give this a go, and see if it solves the problem.
MG
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Hi Katrina,
OuchUk.org has some fantastic background information on Clusters and the other types of headaches. The site actually used to be laid out a easier, not sure I like the new structure.
In brief, when you are talking severe headaches or head pain, you are talking TACs - Trigeminal Autonomic Cephalgia. The Trigeminal nerve, as you may already know, runs throughout the face, and is associated with Trigeminal Neuralgia, Clusters, SUNCT, etc. SUNCT headaches are very similar to Clusters, but last 15-120 seconds on average and up to 30 an hour. The pain is very intense, and I wouldn't be surprised if you black out occasionally.
Clusters, on the other hand, typically last 1-3 hours.
It's important to get a good diagnosis. There are some good neurologists in London that SHOULD know the difference.
I know how frustrating it is to have a little known condition and search to find someone else who understands. I hope we are able to help more, and it would be interesting to see if the remedies we apply here would also help you, even if your condition is slightly different than CH.
One last thought. For just about every rule I've heard about that defines what a cluster headache is, I've also met at least one person for whom the rule doesn't apply. For most people, alcohol triggers a cluster, but not for everyone. For some, cannabis does, or sleep, or stress or lack of stress. When my clusters started, they were lasting from 45 minutes to 3 hours, as the textbook says they should. But since I've been 'busting', the methods we talk about in this forum, most of my clusters now last 30 seconds to a few minutes. A 30 minute cluster is a long one these days. So, my clusters act more like a SUNCT in that regard, but I only get about 2-3 a month. So, not like SUNCT.
MoxieGirls first rule of cluster headaches: No two sufferers are the same, and just as soon as you figure yours out, it changes.
MG
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Hi Leftsider,
Welcome to the forum, sorry you have to be here.
12 hours ago, Leftsider said:....
It's been especially cold where I am , -8 f . As i stood outside cooling down in my Pj's i noticed i wasn't shivering. I stood outside in below zero temps feeling my body temp drop and not a single shiver.
...
Re. above comment; clearly you're dead, and this is The Bad Place. I mean, it's obvious. Or you're a vampire. Was it night time? Does the sun burn your skin?
On, on a more series note, and to piggy back on Jon's comments.
The hypothalamus does a whole list of things, and controls: body temp, thirst, appetite, weight control, emotions, sleep cycles, sex drive, ... and the list goes on. One of the big things it controls is the body clock, which is why they think clusters are so closely associated with it, or triggered by it, as they happen, well, like clockwork.
Before I started busting, after every cluster attack I would have massive swings in body temp that would last 20-30 minutes. One moment I'd be freezing, and wrapping up in my bath robe and blankets, and a moment later, I'd be boiling. Back and forth it would go, over and over.
So if you'd gone outside right after having an attack, your body might have cracked up your body temp as a result of the cluster, and thus didn't feel the cold, as such.
And regarding why hot or cold sensations can sometime elevate attacks, the reason I think this is, is because the body can really only process one source of pain, or strong sensations, at a time. I used to inflict a different sort of pain on myself, a pain I could control, during an attack in order to distract my mind and decrease the pain of the cluster. Stepping into cold snow would certainly trick the brain!
These are just my thoughts and experiences mind you, I'm not an expert.
Here's an interesting experiment you can do regarding tricking the brain.
This works best outside or in a large room, but that isn't critical. Sit quietly for a minute and pick a spot directly in front of you to look at, and no matter what, keep your eyes on that spot. Do not move them, or your head. Now, make yourself aware of an object as far to your right as you can perceive. It's great if something over there is moving to catch your attention, but just try and see as far right as you can WITHOUT moving your eyes - keep them looking forward on that spot.
Now, do the same to the left. What can you see without moving your eyes?
Next, do the same upward, then after a moment do it downward - all without moving your eyes.
Now, the real trick, take in everything as far to your right, as far to your left, as far above you and below you as you can, all while your eyes are looking straight forward at that spot.
Several things will happen.
1. You should be pretty amazed at how much you can actually perceive without having to look at it. This is a great technique to use when walking in a crowd, or even driving. This is how Black Belts in martial arts are able to fight several people at once.
2. You should find yourself relax as you focus on the things around you.
3. You may notice your emotions just switch off. And this is the point I am getting too.
Your brain only has the bandwidth to process a certain amount of information at any given time. You can process sights, sounds, emotions, smells and touch (among other things). But if any one of those becomes overwhelmed, then something has to give, and be shut off. When you are looking at things with your eyes, you're not actually seeing everything that is there. There is billions of pixels of information in front of you, but we humans use selective vision, and we only see what is important to us. By doing this little trick, you bypass that selective vision and force your brain to process more visual information than normal. In order to make room for all this information, it has to shut something off, and it shuts off emotions.
I gave my best friend's eulogy last month using this trick, and didn't cry through it at all.
The same applies for pain. Your brain can only process one source of pain at a time. Introduce a new source, a new sensation, and they brain jumps to that.
That said, clusters are so very intense, it's not easy as the pain tends to overwhelm everything.
MG
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Good point, well presented FunTimes.
Oxygen is your best friend. And check out the Vitamen D3 regimen. There's plenty of information about it in the Clusterbuster Files section. You can start on that right away and it won't (shouldn't) interfere with anything else you're taking.
MG
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Hi Headsufferer,
Welcome to the forum, really sorry you have to be here.
In 2006/2007 I transitioned from male to female, and the hormones I took altered my hypothalamus, which, among other things, impacts headaches. I've always had periodic migraines, they run in the family. But in Jan 2007, I was diagnosed with daily chronic headaches, chronic migraines and cluster headaches, which turned chronic. From 31 Dec 2006 - July 2007, I had one constant non-stop headache + migraines and clusters. In 2011, I had 257 cluster attacks, 276 daily headaches and 42 migraines (each lasting 3-7 days).
Not sure we can solve all your problems, but there is hope. Trust me, there is hope.
By Nov 2011, I was getting 2-5 severe cluster attacks every 2-3 days. It was then that I sat down to put a date in my calendar to exit planet Earth, and then I remembered this forum, and logged on. I had given myself one year to find a solution. And hey, I'm still here. You can be too.
I weened myself off of topiramate and started busting on 14 Dec 2011. I still have chronic cluster headaches, maybe 2 or 3 a month. They last 30 seconds to a few minutes on average, and although they can be sharp, I wouldn't call them painful. In 2012, after I started busting, I only had 3 migraines.
I was seeing a neurologist at Addenbrooke's at the time, btw. He too had thrown his hands in the air as to what to do next. That was one of the reasons I started treating myself.
As for restless leg syndrome, I stopped having caffeine after 5pm as my restless leg usually happened at night. No coffee, no soft drinks. I also found having a hot bath or spraying hot water on my legs when they were being restless helped. And, get exercise if you can - although I appreciate that is difficult.
As for clusters and migraines, start reading the Clusterbuster Files section. Go through it with a fine toothed comb, especially the bit about playing well well others. You may find some of the meds you're currently on will prevent the methods we talk about here from working. And yes, they do work. Oh, and busting will also help with the depression.
As far as epilepsy goes, cannabis I think is good for that. For some people, it makes their clusters worse, so tread carefully.
Your daughter sounds absolutely wonderful. I hope we can help so she doesn't have to worry.
MG
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Well, that is the million dollar question.
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MG's rule on clusters: No two cluster sufferers are the same, and just as soon as you figure your's out, it changes.
Over the years I've seen lots of people mention a change in their cycle for no apparent reason. They tend to have a mind of their own.
Have you had a change in circumstances in your life? Stress increase or decrease? Move to a higher or lower altitude?
MG
Dreams and clusters
in General Board
Posted
I think, if you ask the professionals, they'll say that everyone dreams, but not everyone remembers their dreams. I'm not a professional, but that's what they say.
In a normal sleep cycle, we tend to dream every 45-50 minutes, give or take, and more often than not, we wake from a restful night's sleep during the REM phase, when we're dreaming. Unless of course, you're woken up between dreams by an alarm clock or a cluster attack.
Cluster attacks often happen when we are most relaxed. One might argue that at night time, this would be when we're in deep sleep and not dreaming. So, it stands to reason, if you are being woken up a lot by clusters, in deep sleep, you're not remembering your dreams.
One trick, when not in cycle and you're able to wake up when you like, keep a notepad by your bed and write down as much as you can remember about your dreams. Do this every morning, and soon you'll remember more and more dreams as you train your mind to remember them. You might, then, remember the dreams you have between clusters.
Like I say, not a professional, just my experience and putting 2 and 2 together.
If you have an iPhone and Apple Watch, I'd recommend an app called ActiveSleep. It's one of the best sleep apps on the market, and might give you some insight to your sleep patterns, and when clusters strike.
MG