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Topic: This is me, and it hurts (Read 291 times) |
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Davva
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This is me, and it hurts
« on: Mar 15th, 2006, 5:44pm » |
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This is me, and it hurts
I’ve had headaches for many years. I’m a former migraine sufferer who looked for excuses. I have a busy job with a busy life and I’ve spent, probably, the last five years looking for excuses for the pain I’ve been through because it’s been easier than admitting that I’m not invincible.
Things came to a head last November when, through a long and sorry chain of events, I thought I’d had a heart attack. In reality, my body rebelled against the ever increasing doses of pain killers I was taking in the misguided belief that it was actually doing any good. I basically went through all the symptoms of a cardiac arrest, but without the grandstand finish.
I struggled through for nearly four months until a throw away comment to a stand-in doctor lead me to the realization that I’ve been a fool and it’s not normal to want to scoop ones own left eye out every couple of months (whilst wanting to smash a large rock into the left side of my face) just to try and alleviate the pain.
I spent two hours last night standing perfectly still with my arms wrapped around my chest, supporting my chin, because it was the best position I could find to get comfortable whilst I went through hell. Two weeks ago I would have popped some heroine strength pain killers confident in the belief that, in the next 35 minutes, the pain would be gone thanks to the medication I had taken.
As soon as cluster headaches were mentioned I started researching and, at the risk of psychosomatic self diagnosing, I found myself here. If I wasn’t such a stubborn bastard I would probably admit to shedding a tear of relief in finding that I wasn’t going insane – but I am, so forget I ever said that.
As I come to terms with what I believe I’m suffering from (believe me, I’d rather it all went away) I now understand the following:
Using the scale I found here, I am a persistent level 7 sufferer. Whilst going through clusters, which normally last around a month, I get a couple of level 8’s and am guaranteed at least 1 level 9 per cycle. Most attacks last less than 45 minutes but, unfortunately, the 8’s and 9’s go on for at least a couple of hours. Attacks can occur at any time but mostly between 11pm and 1am. If I’ve been drinking in the last 48 hours I chalk it up to self afflicted.
I know when an attack is about to subside because my left jaw starts to warm up. It is at this point I am at my most vulnerable because I would gladly drive my head through a brick wall than go through the pain I’ve just felt. I played rugby for many years and broke many bones, so I know what pain is, but I would gladly run a marathon with broken ribs than suffer an attack.
My wife tries to help, but I tend to withdraw during attacks and become uncommunicative – which doesn’t really help when trying to explain what I’m going through.
I’ve only really started to examine cause and effect of my ‘gift’ in the last couple of weeks so I don’t know where this goes from here, but it is a relief to know that I may not be alone.
Davva
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Guiseppi
CH.com Alumnus
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Re: This is me, and it hurts
« Reply #1 on: Mar 15th, 2006, 6:59pm » |
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Sir you are soooo no longer alone! Read up on all of the links to the left. There are so many medications available that don't have the side effects the pain killers do. I'm not sure from your post if you took the cluster quiz. Also, follow up with a doctor to mkae sure on the diagnosis. Then read and print out the document on oxygen usage and demand your doctor prescribe it to you! It does wonders to knock the beast out before you have to pull your eye out!!! Welcome to the club, sorry you have headaches but glad you found us!
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Richr8
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It's all about today...
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Welcome!
« Reply #2 on: Mar 15th, 2006, 7:44pm » |
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Welcome! Sorry you had to find us, but glad that you did. I only found this place recently myself after suffering for 12 years and I most definitely had a tear in my eye when I found it. It looks like you have much reading to do with all of the tips and links provided although no one has reported any universal miracle cures, maybe one of the newer regimens will work for you. Despite the health risks associated with it, Prednisone tapers have reduced my cycles to several weeks from 12 weeks. I use O2 as an abortive and Verapamil as a preventive with 6mg of Melatonin to help with the sleeplessness brought on by the beast and the Prednisone.
Anyway, dig in, start reading and ask all the questions you want. There are lots of great folks here who know exactly what you are going through and will help in any way they can.
pf wishes
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Kris_in_SJ
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There's no place like home.
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Re: This is me, and it hurts
« Reply #3 on: Mar 15th, 2006, 8:24pm » |
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Hi Davva. I'm so sorry you're suffering right now. You're in the right place for support. We'll also give advice - though we aren't doctors - it might help.
First, you MUST get a proper diagnosis - preferably from a neurologist who specializes in headaches. Treatment is haphazard at best without it.
Second, read all you can. There's a wealth of information in the links to the left. Here's another that is useful, as it contains great info on the latest medical treatment. It virtually saved my life last cycle:
http://www.brightok.net/~mnjday/chtherapy.pdf
Once you've armed yourself with solid information, be sure to print it out and take it with you to the doctor. There are treatments that can help you, even if there isn't a cure.
We're here whenever you need us.
Hugs and PF Wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
 
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Re: This is me, and it hurts
« Reply #4 on: Mar 16th, 2006, 5:30am » |
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Hi Davva,
Nice to meet you, just very sorry it has to be here.
First of all I can only re iterate what others have said about a "proper" diagnosis from a headache specialist neuro.. that bit is important, neurology is a huge field and seeing a neuro who specialises in MS for instance is going to be about as much use to you as a chocolate fireguard.
You need to have an MRI, in the event of clusters it isn't going to show anything but at least you will be certain it isn't anything more insidious (like a brain cell.. I notice you're a mere male!   )
A couple of things stood out in your post for me,
one, heroin strength pain killers will NOT help. opiates do not help with CH, some people have tried marijuana and that hasn't helped a bit either. There are some alternative therapies that others have had success with and you can read more about them here at www.clusterbusters.com if you are interested.
The most used prescribable meds are Imigran INJECTIONS (Do NOT be fobbed off with Imigran pills.. they don't work. The injections are flippin' expensive though so your doctor WILL try!) and O2 at 15 litres per minute through a non rebreather mask. Both are very effective, I swear by O2 and can abort a hit with in five to seven minutes using a clustermasx (www.clustermasx.com)
There are other triptans too but none are as fast working as the old Imi, the disadvantage of it is its the shortest lasting. Zolmitriptan is a nasal spray which takes about 20 minutes to kick in but has a half life of about 12 hours (Imi is two) and frovatriptan tablets.. this take up to two hours to kick in so should only be used to ward off attacks but they are brilliant at preventing further hits having a half life of up to 26 hours.
I don't want to go into too much about other meds at this point, how long do your cycles last based on your previous experience? The reason I ask is some meds are thought to lengthen cycles so if yours are (relatively) short it would be better to stick to abortive treatments as mentioned above.
You said something else that caught my attention when you said alot of your hits last 45 minutes or less.
There is another condition called Paroxysmal Hemicrania. Its another TAC headache, IE the same group of headaches as CH, the only difference is the length of each attack and frequency. PH tends to be shorter hits and more of them than CH.
PH used to be thought of as a "womens" HA.. but then CH was a men only HA and we can all see how wrong that is 
The GOOD news is that there is a med for PH which is hugely successful called indomethacin. Its fast acting, usually in about a week and it will knock your cycle on it's head. It would be worth a trial to rule out PH if nothing else but it could be your silver bullet too so please mention it to your doctor or neuro. It can be hard going on the ole tum so they might want to give you something to protect your stomach at the same time.
Phew.. I do shut up sometimes honest! 
Good luck with getting sorted out, please come back and tell us how you are getting on and ask all the questions you want.
You might also like to take a look at OUCH UK which is a charity for the understanding of cluster headaches. There is a helpline, manned by volunteers who you can ring for help advice and support, there is a wealth of support there (and here too!) for your wife as well. Its bloody tough seeing someone you love go through this and she can use our support too.
There is also a GP Info site you might like to direct your doctor too for further info.
Don't suffer alone okay? We're all in this together and we will help you all we can
Take care
Helen
OUCH UK
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
GP WEBSITE
http://gpinfo.ouchuk.org/
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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