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Topic: Hi everyone, I'm Jzero (Read 2567 times) |
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Jzero
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Hi everyone, I'm Jzero
« on: Mar 27th, 2008, 11:29am » |
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Hey folks, I'd like to join the family so I've just registered after just stumbling upon this painful yet wonderful site.
I'm currently having a '32 days in' Cluster attack. It's 1:14 a.m. here in Australia as I begin this post and I'm due for my latest attack any moment now.
I've had 3 years without a Cluster and was hoping not to feel this pain again, but it's been back with a vengence, so I've been searching the web for any new medication, news and research and that's how I stumbled upon this very unique site.
I was first properly diagnosed in 1997, but have had Clusters since 1985, so that's 23 years ago.
I have suffered with Migraines since I was 10 years old and have Chronic Headaches on average 3 to 4 days a week.
I've also got chronic back pain from a back injury 5 years ago and I can no longer sleep in a bed, so I've slept in a chair for the last 5 years which isn't a great deal of fun, but it beats sleeping in a bed!
I've also been suffering fibromyalgia for about 10 years, recurring left hip and leg pain (which has me limping about alot) and some weird stuff going on with my stomach.
I'm sorry it's not a nice introduction, but by way of introducing myself it's part and parcel of who I am and what my life is, by and large, all about.
In between the pain and exhaustion I try to maintain my abilities as a singer/songwriter/musician.
For the most part I'm bed bound (or 'chair' bound) and so my music now consists of recording my backlog of songs slow by slow with my home studio setup. It's my love of music that keeps me going and my son who I have been a single father to since he was 2 years of age - he's now 25 and without his support I'd be truly alone here.
I was born in England, but came out to Australia with my parents, brother and 3 sisters when I was 6 years old.
When I reached my 20's I began treating my headaches with only natural remedies. After 10 years and little relief, I began to take more conventional medicines. When I had my first Cluster attack, I was only taking aspirin, which did nothing. I found out about oxygen in 1998, but it's not easy to obtain. I've had it when admitted to hospital a number of times, but I could never gauge it because I was already in the middle of an attack and it didn't benefit me then. Also, nobody new what I was talking about when I told them it was Cluster. Going to hospital ended up being worse really, so I don't go anymore.
I did obtain oxygen for a couple of months for an attack 5 years ago and found some benefit, but it was a hit and miss affair. Also, with so little knowledge here about Cluster Headaches NOBODY would listen to me about correct airflow, and there's only the standard oxygen masks available - again, nobody would believe that the standard masks weren't sufficient, even though I'd brought in copies of statements from Doctors from the U.K. and the U.S.
So, it's been very frustrating over the years.
When I was diagnosed in '97 I was given ergotamine capsules which weren't very effective, however I read about dihydroergotamine injections being much more effective due to their immediacy and purer form.
I found these DID work, but only if I could have the injection immediately that a Cluster struck.
So, after stressing the importance to my Dr at the time, I received an authority prescription to self inject at home.
THIS WAS A BLESSING!!!
The drawback is that you're not supposed to take more than a limited amount, however, if it's all you have that works - you will take all you need.
So I did, and I still do. So, I've had 32 injections over the last 32 days. The first couple of weeks, the dihydergot is more effective - but I have to be super quick. And even so, I'm still clutching my head for a while with a face washer in ice and water.
The last week or so, it's been a hit and miss affair. And I've suffered some very powerful attacks. The worst 2 nights back which lasted unbelievably long at 6 and a half hours.
After that my day continued with smaller but constant cycles of attacks which then built up in power in the late afternoon and a full blown attack at 2 a.m. last night which thankfully only lasted for 30 minutes.
They are so draining too.
Hmmm, I think I've written plenty enough for an introductory post. And I think I need to go tend to what's building up for the rest of the night ahead.
I did a search across the forum here regarding ergotamine and dihydroergotamine, but there were only 2 posts that turned up. I wonder, is it not widely used?
I fear that if it weren't for these injections I'd be dead by now - or quite mad!
My heart goes out to you all, I know your pain. It's amazing to suddenly come across so many sufferers of this torturer of souls, this feared, roaring beast that holds our heads in its terrible vice-grip. I've felt very alone. I've never met another with Cluster. I guess that's changed since registering here 
Peace and hope,
Jzero
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DragonSlayer
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Re: Hi everyone, I'm Jzero
« Reply #1 on: Mar 27th, 2008, 12:20pm » |
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Hey jzero 
So sorry you came looking - But damn glad you found us!!!
Welcome to the Clusterville Nuthouse  .
There are several Aussie's on the board and I'm sure they will sign in soon. You are not alone any longer.
Others with more knowledge about the meds will also post helpful information to answer your questions.
There are many here who have studied this beast and will offer help to get you sorted out.
O2 at 15 lpm with a nonrebreather mask at first sign is helpful to most, slam an energy drink (Taurine & caffeine) like Red Bull, Ice pack or a bag of frozen veggies on head and neck.
Again Welcome! There is alot of info here pull up a chair and read... Read... Read...
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Guiseppi
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Re: Hi everyone, I'm Jzero
« Reply #2 on: Mar 27th, 2008, 12:33pm » |
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Welcome to the board, so glad you found us. A couple of things.
Oxygen has to be used correctly to get the vasoconstrictor effetc we need. 100% 02, at a high flow rate, at least 15 LPM through a non re breather mask. I can abort in 6-8 minutes using 02. But I hear you, when you're ramming your head against doctors who won't listen, it's frustrating. Welding oxygen may be an alternative for you. Takes a little jury rigging but it's available without a prescription.
Regarding ergotamine. If I use ONLY oxygen, I get repeat headaches within 10-20 minutes of shutting off the tank. Now I pop an oral cafergot as soon as a headache starts. (Ergotamine and caffeine as I understand it) Then I start the oxygen. the 02 beats it down, cafergot will buy me up to 12 hours pain free time.
You have much reading to do as there are many preventative and abortive medications available, hopefully you can find a combo that works. So glad you found us.
Guiseppi
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thebbz
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Re: Hi everyone, I'm Jzero
« Reply #3 on: Mar 27th, 2008, 2:55pm » |
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Houdy from Montany,
all the best
thebb
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debOUCH
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Re: Hi everyone, I'm Jzero
« Reply #4 on: Mar 27th, 2008, 6:43pm » |
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u absolutely came to the right place, jzero! this site is full of caring, amazing, imformative people! read, absorb, post your questions, and then read and absorb again.............like i was told a few weeks ago, "it's a good place to be @ a bad time".............a bunch of hugs comin your way, and PF times ......................
deb 
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Hal
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Re: Hi everyone, I'm Jzero
« Reply #5 on: Mar 27th, 2008, 8:54pm » |
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Jzero,
Nice to meet you. I'm new here too, so I can't speak with much authority on the more proven treatments. A few weeks back, when I first realized that I was a cluster sufferer, and before landing here, my quick research kept turning up ergotamine. So I go to the neighborhood pharmacy here (in Kentucky) and ask the long time pharmacist did he have such a thing. He replied "my god, I haven't seen that in years, and not even sure I can still get it". He wasn't sure why, but thought it was either due to side effects or just better alternatives. So anyway, here among the people who really know, I have not seen it come up either. .02
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #6 on: Mar 29th, 2008, 8:44am » |
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WOW  replies so quickly!!!
Thanks to all
Dragon Slayer Back at ya!
- I bought some coffee after your post. I'd always avoided it as I thought it would be a trigger seeming it can trigger migraines. Anyway, I thought I'd give it a try. Early days yet, I'll try and remember to let you know how it goes! Can you tell me what Taurine is, or what's in it? I've not heard of it, but noticed a few here mentioning it in posts.
As for others with knowledge on the best meds, I'm not sure there's much I've not already tried. Dihydroergotamine injections have been the only real help, but loses it's effectiveness at times. Nevertheless, it's my best bet, but I'd love to have something else in case it stops working some day and also so's I can take a break from the Dihyderot.
Guiseppi - Hi! I'll be getting a large Oxygen Tank delivered next friday. When I used it before I was told to have no more than 7-8 LPM, but fortunately I had read up on using 15 LPM so I was prepared. Nevertheless I did try 7-8 LPM but quickly found that it wasn't enough. No-one would agree with me when I mentioned the type of mask either. They suggested I use the one that sits below the nostrils - absolutely crazy when you're in the know. If I was ignorant of the right mask and LPM I would no doubt have concluded that the oxygen didn't work. The mask isn't ideal, but it's not bad. I found oxygen helped, but I had to be quick, really quick and even then it only worked half the time. I ended up using it in conjunction with the Dihydergot injections because, like you, the oxygen (when it works) only wards off an attack for short periods.
You mention Cafergot, taken orally? I've not heard it taken that way. Cafergot was one of the first treatments I tried but it was a suppository and it was VERY STRONG. I couldn't move, not even a fraction, without my head spinning and wanting to hurl. I hope you don't get those side effects taking it orally!
Hey thebb!  How are you doing? Thanks for saying hello
debOUCH  - thanks for the hug and wishes - hugs back
Hal  - Hey there! Interesting about the comment from your Pharmacist. If you can[i][/i] get your hands on some I would recommend you try for the injectable form as ergotamine isn't fast acting enough for an attack, but it might help prevent one or two. I tried ergotamine capsules at first but they didn't help. Dihydroergotamine however is a godsend for me!
The Dr who first prescribed ergotamine capsules for me told me it was the original migraine medicine and that he has patients who suffer migraines who swear by it. It's surprising that it's not available where you are. And surprising that it's not mentioned much here either. The brochure that comes with the packet of vials states that it's used for Cluster Headaches as well.
Anyway, cheers and kind warm thoughts to you all. I'm hating going to sleep these last few weeks and not looking forward to going again tonight. I always wake with a very bad Cluster and usually only an hour after having gone to sleep. Often I'm dreaming of the Cluster attack and unable to stop it in the dream before waking. I imagine that's probably pretty common.
Can anyone tell me how the Cluster rating goes? I guess that it's out of 10, but this is the first I've heard of it. I've always just thought of mine as agonisingly severe no matter what. I don't know what the letters stand for in front of the number either, so if any of you wouldn't mind explaining it to me I'd be grateful.
Thanks again folks
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Barry_T_Coles
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Re: Hi everyone, I'm Jzero
« Reply #7 on: Mar 29th, 2008, 9:28am » |
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Hey Jzero
Welcome & sorry for not picking up your post earlier but I work away out of town frequently & cant get internet access.
Firstly lets get you sorted with the oxygen; have a look at the bottom of my post & click on the link to Mushy’s site, it gives you all the info you will need to get o2 here in Oz.
Taurine is useful depending on its use; its been found that Red Bull or any of those energy drinks that contain Taurine & caffeine in high quantities can kill low level hits very quickly, as a supplement taken in tablet form it will take a long time to get to the point that becomes effective, from my experience around 6 months but there are other things that you will need to add to the mix to be effective, if you want to go down that road we can talk about that later.
Nice to have another Aussie (albeit expat POM)  on board.
Cheers
Barry
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Guiseppi
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Re: Hi everyone, I'm Jzero
« Reply #8 on: Mar 29th, 2008, 11:48am » |
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KIP scale is named after the man who thought it up! I did not have the pleasure of meeting him. On the left, click on the "Kip scale" link. It's just a way to rate your attacks.
The oral cafergot has none of the side effects for me that you mentioned. Leaves a funny metallic taste in your mouth and I get a little bit of the caffeine jitters, no other side effects for me.
Guiseppi
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #9 on: Mar 29th, 2008, 12:40pm » |
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Hi Barry and thanks for the info with link
No need to apologise, it's already amazed me that I've had the responses I've received to date. Also, there's a whole lot of areas in this forum, I imagine it would be hugely time consuming to regularly keep up to date with them all!
It was nice of you to write when you spotted me here and that was only a few days since I joined up here.
It seems I didn't convey enough about my experience with Oxygen, nor about meds in my first post. I've actually researched it quite well. My only obstacle is the proper mask. I've just got the typical ER mask and so I block the holes with my fingers whilst breathing.
I've been fortunate with the Oxygen cylinder too, as the hospital has arranged for me to receive an E size tank on call - without cost.
I hesitated to get the tank this time but should have at the beginning. As it stands, I've phoned to have one delivered asap, but it will take a week due to their delivery schedule.
Well, in between the above last sentence and this one I've had to deal with tonights Cluster, but fortunately I was awake (2:50 a.m.) and therefore quicker at injecting dihydergot - and it aborted the attack within 5 minutes - sweet blessed relief!
This has been my worst series of Clusters for 5 years. I've had some shorter duration periods since but nothing like this full-blown attack. Prior to 5 years ago, I was getting them every year around march/april since 1985, then from 1995 to 2003 I was getting them twice a year. So when they stopped 3 years ago I had hoped that was it, but obviously not. Still, it's nice to know now that I've got this global family of support here
Also, it's real nice to have a fellow Aussie contact me (expat aside )
So Barry, do you find the Oxygen usually helps your attacks? And are you using meds? Also, have you tried dihydroergotamine injections?
When I first had the injections, I used to have to go to my Dr to get them. Now that I've got them at home and can self administer, it's made a huge amount of difference for me. I was living in Launceston when I first could do this, but it was still a bit difficult because I'd have to regularly go to the Dr to get scripts during my Cluster periods (there's only 5 vials per pack). However, I moved up the coast and after looking for a good Dr, I found a truly sympathetic and caring Dr nearby and she gives me an authority script of 3 packs at a time with 2 repeats. I feel very fortunate, for I've found it very difficult to find as good a Dr as she is. Also, all the Drs I've seen over the years have never known a patient with Cluster. Many have not even heard of Cluster Headaches, either that or they've known very little about them.
Many of them say they're very similar to migraines. Migraines are certainly very painful, but they're also very much in a different pain category - as only Cluster sufferers can truly know.
Oh, thanks for filling me in with the Taurine/Red Bull info. Has the Taurine got something to do with Gurana? Or is Taurine an ingredient all its own?
Well, that's plenty enough from me. I'd best go, and hopefully get some sleep soon!
Take care,
regards, Jzero.
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #10 on: Mar 29th, 2008, 12:48pm » |
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Sorry Guiseppi, I can't see any link to the kip scale you mention.
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DragonSlayer
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Re: Hi everyone, I'm Jzero
« Reply #11 on: Mar 29th, 2008, 1:21pm » |
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on Mar 29th, 2008, 12:48pm, Jzero wrote:| Sorry Guiseppi, I can't see any link to the kip scale you mention. |
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Try this:
http://www.clusterheadaches.com/scale.html
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Batch
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Re: Hi everyone, I'm Jzero
« Reply #12 on: Mar 29th, 2008, 1:35pm » |
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Jonathan, My wife would have a bonzer time with you... I've got the same problem at times, but then I'm blind in one eye and the good one goes on the blink every now and then...
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #13 on: Mar 29th, 2008, 3:51pm » |
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Hey Guiseppi, that is very funny! I had a good laugh. It's certainly VERY VERY obvious and I promise you I would have seen the kip scale over on the left - as it is now, but for some odd reason when I was here reading your post earlier that whole section on the left wasn't there. It sounds like I'm joking I know - I'm still laughing as it is, but the messages in the forum stretched all the way over to the left of the page, there was no room for anything else to fit. I swear I was looking all the way over to the left and the only thing on the left was your name, gender etc. To the left of your name was the end of my browser, yet here it is now staring me in the face plain as day. So, either it wasn't there or IT was, but all of me isn't
Thanks Guiseppi, laughter is always good medicine, which reminds me - sleep probably is too and I've been up the whole night dreading my Cluster so I probably should give in soon and go to bed. Of course, it could be argued that my lack of sleep and 4 week ongoing Cluster made me think the kip scale etc wasn't there - I could be hallucinating in reverse...
Bye for now
Jzero
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AussieBrian
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Re: Hi everyone, I'm Jzero
« Reply #14 on: Mar 29th, 2008, 8:48pm » |
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G'day the J and sorry a bit slow replying. I'm back out in the scrub, living on concrete this time but still have to eat my own cooking, and I only get to see a computer every week or two.
Our friends above have given you heaps of good gen already and you seem to have been blessed in that not one of them asked for beer in return like they usually do so, if you send some to me, I'll make sure it gets passed on.
Another little trick that's worked for me over the years for the lower-level attacks is a couple of Panadol washed down with a serious cup of serious coffee. If you're tummy's up to it, Panadiene Forte used the same way can be real help but I also found the hard way that if two don't work, neither will four, six or eight.
As to the left-hand side of the screen disappearing, that's happened to me a few times and I've found a six-pack of golden coldies is the answer - you forget it was there in the first place and stop worrying about it.
Cheers and beers,
Brian out back.
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KatzPurr
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Re: Hi everyone, I'm Jzero
« Reply #15 on: Mar 29th, 2008, 9:52pm » |
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Hey there Jzero! Glad you found us. I'm fairly new here too, but I cannot express my gratitude enough for the wonderful folks in this forum. I'm on day 3 of using my O2 and have found like others that it doesn't always keep an attack at bay for long. I woke up around 6:00 a.m. this morning with a ch (Kip 2-3) and aborted it with the O2 in about 8 min., only to have the Beast hit again at 9:00 a.m. I used the O2, aborting the attack, but was hit yet again around 11:00 a.m., so back to the O2 I went, but ran out after about 6 min. I then chugged down some RedBull, took an Imitrex and that finally killed it for good.
During this cycle I have been having ch at least every 12 hours and some in between as well. Last week I had several ch that were the worst I can remember, what I call a 10++ since there is no higher number on the Kip scale. Some of them lasted up to 6-8 hours with a lot of residual pain afterward. Thankfully after aborting today's hit, I have been spared for the past 11 hours, but am due to get hit again soon or perhaps in the morning. In that case we'll see how the O2 pans out.
I haven't ever tried the type of injections you mentioned and am not even sure they are prevalent here in the U.S., but fortunately I can get Imitrex in just about any form I wish. The first time I ever used it as an injection, I was amazed by how quickly I could get relief. Unfortunately, like all the Triptans, there are limitations to how much you are supposed to take, so I am glad to have other options available.
In any case, I wish you the best in your fight with this bout of the Beast and pray for PFDAN for you very soon!
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Barry_T_Coles
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Re: Hi everyone, I'm Jzero
« Reply #16 on: Mar 29th, 2008, 10:59pm » |
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on Mar 29th, 2008, 12:40pm, Jzero wrote:Hi Barry and thanks for the info with link
So Barry, do you find the Oxygen usually helps your attacks? And are you using meds? Also, have you tried dihydroergotamine injections?
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Oxygen works great for me; I can kill a hit within minutes when in high cycle but there are some tricks to learn about its use, once you have killed the hit stay on the o2 for the same length of time after to prevent rebound hits I do this by counting the number of breaths I take right from the start & when the hit is dead start from zero again & breath up to the number you reached before.
Last time around I tried Imegran tablets (the only meds I have tried & I dont like injections they hurt  ) & they did jack shit but I found that if I took one directly after coming off the o2 I could stave off another hit for 6 - 8 hours.
If you are getting your o2 from the hospital see if they will give you a nonrebreather mask (smile at the Charge Nurse, that’s what I did), I've tried to get masks from medical suppliers but they only sell them in boxes of 100.
I don't use the mask because as you see I have a beard & can't get a complete seal so I suck it straught from the bag & exhale through my nose, that way I get 100% o2.
I am going back out bush again tomorrow if it stops raining but the way things are looking I may be town bound, hell I can't even get to my store room to bottle my latest batch of stout 
Cheers
Barry
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #17 on: Apr 3rd, 2008, 10:15am » |
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Hi again to all here - it's really nice to be a member of your family
I'm sorry I've not replied b4 now, but my Clusters have been too much and I've not been able to go near my computer as a result.
A few days ago the dihydergot lost its effectiveness and I've had some horrendous attacks. I've been so exhausted partly to do with avoiding sleep and largely to do with the Clusters themselves. And when I finally do fall to sleep (in a stupor), I wake hour after hour with the Cluster each time.
Today I've had a break. I'm exhausted but the pain is coming and going without too much suffering apart from those 'knock your block off' stabs!
I will finally receive the Oxygen tank tomorrow! Thankfully I'll have that to fall back on seeming my meds aren't working now.
KatzPurr, I've been thinking of you during my own attacks and hoping you've not had any more that rated 10++. I was yelling for a couple of hours 3 nights back and hoping my neighbour didn't hear me through the walls. Prior to Clusterheads.com I rated my Clusters as either bad or severe. I seem to hover mostly between 7 and 10 on the kip scale. Today has been much better tho'!
Anyhow, I need to go as I'm not up to being online any longer. I'll reply to who and what I've not replied to when I'm feeling somewhat more able. Thankyou for all your posts of support folks!
I've a few more questions I hope to ask, but they'll have to wait a bit.
Take good care of yourselves and your hearts. May relief come to us all.
From Jzero.
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Charlie
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Re: Hi everyone, I'm Jzero
« Reply #18 on: Apr 3rd, 2008, 10:30pm » |
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Welcome aboard and it's good to meet you Jzero. I'm just sorry you are here because you have to deal with this horror. It sounds like you're getting a full dose of good info here. I want to add my thing too as it worked well for me and is entirely non-invasive. Give it a try.
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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AussieBrian
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Re: Hi everyone, I'm Jzero
« Reply #19 on: Apr 7th, 2008, 8:57pm » |
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Hey, J, you've been very quiet. You OK? Anything we can do to help?
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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beachmusic
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Re: Hi everyone, I'm Jzero
« Reply #20 on: Apr 8th, 2008, 7:16am » |
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Hi Jzero and welcome,
I am new here also but wanted to say I am sorry for all you have endured....
I have been away for a bit also and missed your intial post and only now have I seen it. Now you have been missing for awhile and I hope you are okay!
Everyone here has so much to offer and will do there very best to help and get you through. Really hope you are feeling better and that the o2 arrived and has brought you some relief Mary Ann
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #21 on: Apr 10th, 2008, 12:30pm » |
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Hi again everyone I'm very appreciative of all the support you've extended to me, you're all very kind, thankyou!
Yes, I have been 'away' for a bit. I guess you could say I've been... held hostage, by the beast  
This one really held a tight grip and I've not been in any state to switch on my computer, except occasionally to check messages. I've wanted to reply but felt too washed out between attacks to do so.
I think I mentioned that this was my first in 3 years and that it hit me hard. I've not shouted as loud or as long in my 23 year Cluster history as I have done with this bout. I thought I'd reached maximum pain before. I truly couldn't see how my head was going to stay together during this one tho'
I got the oxygen last friday - a large tank (size E), but it was empty by the following monday. It really DID help tho' - so that's also why it went so quick!
I get another tank tomorrow - so that's gonna be a relief!
And, my attacks have gotten milder as of yesterday, so I'm very hopeful that it will all be over soon.
The problem now is my 'normal' chronic headaches and chronic fatigue/fibromyalgia, back-pain ad nauseum...
I HAVE managed to finally by an electric bed. It's second hand, but only a few years old. I just have to get someone to pick it up for me.
I'm so looking forward to sleeping in a bed having slept in my chair for 5 years now - I can't sleep in a normal bed.
So, getting this bed is good news too - yaye!!
It was amazing to read the post by lc bob called 'the devil'. It's a terrible yet very apt telling of the excruciating pain of Clusters - WOW!!!
I was wondering if anyone had seen the videos on the following site:
http://homepage.mac.com/justinott/clusterheads.htm
It hurts to watch someone else have an attack, but it's good for anyone wanting to have more information to give to family, friends, colleagues, doctors etc.
Thanks again everyone - you're the best!
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seasonalboomer
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Re: Hi everyone, I'm Jzero
« Reply #22 on: Apr 10th, 2008, 1:14pm » |
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The Oxygen people ought to be able to leave you a back up or two. My O2 folks let me have 3 at a time. I just rotate them out. Ask them.
Scott
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Jzero
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Re: Hi everyone, I'm Jzero
« Reply #23 on: Apr 10th, 2008, 1:35pm » |
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Hey Seasonalboomer!
Unfortunately they have to abide by the script written by the hospital and that's the problem area. I've shown them the overseas documentation on recommended LPM and non rebreather mask, but they don't budge, so I use 15 LPM and use tape on the holes of the mask, run out quick and fall back on the dihydroergotamine until the following week when I can get another tank!
Thanks tho' and I hope you're Cluster free at present!
My best, Jzero.
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beachmusic
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Re: Hi everyone, I'm Jzero
« Reply #24 on: Apr 10th, 2008, 8:54pm » |
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I've been worried and it sounds like you have been miserable. I really hope you get a big break soon and that you get some good rest in a true bed soon. A chair for 5 years and pain is not a pretty picture . I am sorry jzero
Mary Ann
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