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Mr._Friendly
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can't believe I never found you before...
« on: Mar 28th, 2006, 7:40pm » |
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for that last 3 years, I've seriously looked for resources to help me understand what's happening to me, but never had any success. funny that...I'm net savvy, big time geek. if anybody would have or could have found this site, it would have been me. go figure! 
well, my name is Cam. I'm just about to turn 27 and have had the headaches for the last 5 years. I'm a chronic sufferer and while I have many of the symptoms, much of what I have is not listed. I was diagnosed with 'cluster headaches'but I don't recall if it was by the neurologist or by my general practitioner.
gosh, I have so much to say to let you know about me, but I don't want to overwhelm you all! I guess I'll try to be brief with the basics.
I've suffered from migraine headaches all my life but things chainged about 7 years ago, and then again 5 years ago.
on August 21st, 1998 I survived massive head trauma in a mountain bike accident. since then I have had a constant state of head pain among other sensory pain across my body. explained away by the mysteries of the effects of a brain injury. official diagnosis by the neurosurgeoin was 'diffuse axonal tearing.' my life was saved, but as most survivors find, we're tossed on our duff in the cold reality of the real world with little help or direction. I staggered about with family help, getting back on my feet sorta...just about a year after the injury, I got a job. that fell apart...
so I got another job. this was doing stucco, putting up the colored concrete mixutre on the sides of houses. I was the grunt and this is where my headaches changed from the constant state of pain and occassional migraine to unbelievable pain spiking my skull like an icepick. while they are predominantly on the right side of my head, they can be on the left. I haven't noticed the eyelid droop, unusual tearing or nasal congestion when they strike, but strike they do. again and again and again, lasting from seconds, to minutes to hours to days. I am light sensitive by nature, which became exaggerated after my injury (I'm blue eyed).
the neurologist started me on some medication, I forget the name now as it was 4 years ago or so, but I recall it was a beta blocker. they helped with the effects of my constant state of pain, dulled or numbed it, tho it was still there. unfortunately for me the benefits of the medication stopped, we jacked the dosage up, it worked again, then it stopped, jacked up more, no help, jacked up more, no help, so we stopped altogether and I just started to suffer again as I did before.
the attacks are chronic, every day, day in day out...tho I do have good days. there may be a form of ebb and flow to how they stike, but it's a constant...no discernable pattern.
the pain debilitated me to the point again that I talked with my GP and he prescribed Gabapentin. we started out at a low dose and worked up to a high dose and then experimented by slowly lowering to see the effects. again, my constant state of pain was dulled and numbed, but the attacks remained. just having the relief from the day to day ache was nice, so we maintained the medication. for the last 7 weeks tho, it seems like it's stopped helping, like the previous medication. I've been a zombie for the last while, seeing my house and the mess in it, the state of my fridge and the fact I've barely eaten anything I'm so distracted goes to attest to that. I'm going to see my doctor again...perhaps I will ask for another referal to the neurologist and discuss the information I've gotten from reading here.
I can't believe that my doctor has let me suffer as much as he has! there is a wealth of information here and it seems he doesn't have a clue...the attempts we've made to help have been wholey inadequate and what has been tried and talked about has nothing in common with standard treatments as discussed here!!!
I'm not dumb, the neurospychologist told me humorously I'm too smart for my own good (told me I have a higher than average intelligence but because of my very bad short term and long term memory impairment, nulls that edge. I have a hard time injesting data and figuring out what to do with it, how to act on it. it's almost like I need to be hand held half way and then I am clued in enough to carry on. I still don't have a clue...so I hope you'll hold my hand 
and so we're at the point I'm at now. debilitated! I haven't worked for 5 years and have been on provincial government disability support for the last 3 years. now I wish to see what things can be found out. suspicions of what may have/could have triggered the onset of my headaches. I have lived with them...no pain medication, so now I wonder how scarred I am  or maybe, like everything else when associated to brain trauma, can only be explained away as an inexplicable enigma  maybe they're not your 'classic' cluster...maybe they're not clusters at all. who knows...but hopefully you can help!
*big breath* so that's my introduction...there are a lot of holes in what's been said, so feel free to ask me questions, I'll be happy to fill you in. 
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| « Last Edit: Mar 28th, 2006, 7:48pm by Mr._Friendly » |
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I am Cam
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AussieBrian
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Re: can't believe I never found you before...
« Reply #1 on: Mar 28th, 2006, 7:59pm » |
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G'day Cam, and welcome. Firstly, have you taken the Cluster Quiz? It's the fourth button down on the left of your screen and while it's not definitive it's a great place to start.
Have a go and let us know how you get on and relax, we'll hold your hand all the way.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Mr._Friendly
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Re: can't believe I never found you before...
« Reply #2 on: Mar 28th, 2006, 8:14pm » |
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hey Brian, I did take it, but like I said, some of the normal symptoms don't show up with me. makes me wonder if they are cluster headaches, and if they aren't, if I was misdiagnosed. this could give you an indicator of what I mean.
I have combination of headache times...like ice pick headaches, stabs of intense pain that last mere seconds, but then sometimes, it's more than seconds and goes on for minutes, hours and on occassion, days.
they don't necessarily switch from one side to the other, they're predominantly on the right side, but they do attack on the left, but with less severity compared to those from the right side.
because of my history of migraines, I've always sought a cool, quiet and dark place to try and 'cope'. sometimes it helps...I am happy to say that I don't often suffer the head banging rollling on the floor pain that the episodic have, but I've had the rolling on the floor pain. being that pain has always been involved with my life (especially due to my photo sensitivity) when the extreme cases have struck, I've not sought going for help (ie - hospital) because I know it will go away.........eventually.
my migraines tho aren't normal either. I've never had an aura nor do I get naueaus...it would feel as if my head were a drum being hit with huge hammers.
I haven't found them to attack me just after I've gone to sleep like seems to be common, but I can attest to them waking me up in the mornings around the time I should be getting up.
so while I've not head banged or thrashed...I have hollered and groaned and moaned loudly.
an odd symptom I have, while there is the intense pain in the eye area, like an ice pick headache, but at the same time not, I have deep stabbing pain that lasts like I've said, seconds, minutes, hours and days...but it moves across the side of side of the head. I've described it as a crowbar trying to pry my eye from the socket, a worm eating it's way out of my head...lately, a new sensation, it's like razors stabbing in and slicing the sides of my head.
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AussieBrian
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Re: can't believe I never found you before...
« Reply #3 on: Mar 28th, 2006, 8:32pm » |
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No worries, mate, because there's nothing gives us more joy than someone failing the test. Music to any ClusterHeads ears.
Now go back to the quiz and scroll down to "Follow on" then click where it says '30 question quiz'. I personally reccommend not reading the intro and going straight to Question 1 but that's just me.
Good luck from Down Under,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Mr._Friendly
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Re: can't believe I never found you before...
« Reply #4 on: Mar 28th, 2006, 10:01pm » |
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while that is a more involved test, the same is true, I have many of the symptoms and yet lack others...while the pain remains chronic and constant.
and like I previously mentioned in my first post, either the neurologist or my GP (who has experience with brain trauma survivors) told me they were cluster headaches.
I do want to find out more tho. it was interesting to read in another post in this particular forum how they were given an anti-siezure medication like I have been to help with their diagnosed cluster headaches. he also mentioned that they were given Maxalt...something that I was given about 4 months ago. it sometimes works...sometimes doesn't work. and really, I only ever use it after the pain has sustained itself for a while because then I know it's wanting to stay...and that sometimes can be to 'late' to benefit from the Maxalt.
I've had both CAT and MRI scans done...nothing conclusive for either my injury or my headaches. I'm curious to know what other methods there are to accurately diagnose cluster headaches, especially so since I don't hold the most obvious classic symptoms of, tearing, nasal congestion or droop.
this business of chronic pain exacerbates and masks all the issues I have happening. it's a great frustration. 
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AussieBrian
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Re: can't believe I never found you before...
« Reply #5 on: Mar 28th, 2006, 10:22pm » |
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Can be frustrating as hell, we know that for sure, and our only defence is knowlege. Keep searching, my friend, and keep asking questions. We'll help you every inch og the way.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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E-Double
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Re: can't believe I never found you before...
« Reply #6 on: Mar 28th, 2006, 10:28pm » |
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It appears that you have multiple headache types.
I'm a member of that club.
I am a chronic CHer.
I have Idiopathic stabbing headache (icepicks)
Migraine
Tension
and some other variants.
Icepicks are nearly 100% responsive to indomethacin/indocin. Read up on it!!!
Here are some resources that will help you with CH:
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Mr._Friendly
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Re: can't believe I never found you before...
« Reply #7 on: Mar 29th, 2006, 1:31pm » |
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I agree with you Eric...like you, I seem to suffer from mutiple types of headaches!!! I get the occassional migraine, I have icepicks all during the day, then I have pain that is indicative of tension (the physics of my accident really would have wrenched my entire muscleature and I have big issues with my neck that neve cease to amaze my chiropractor and massage therapist) headaches. then I have the constant ache thoughout my head. I just notice that the behavoir of my headahes changed about 5 years ago when I did stucco. something noted by my then chiropractor was how high my blood pressure was for someone so young. interestingly, soon as I stopped the heavy labour of stucco, my blood pressure dropped...the intensity of my headaches decreased, but they did not stop. that makes me wonder...
are there any known chorelations to cluster headaches or other headaches to high blood pressure that you know of?
I should also mention that I am currently on a large dosage of 60mg of the anti depressant Celexa. I've been taking a dosage of Gabapentin at 200mg 3 times a day. it used to be as high as 1800mg (600mg 3 times a day) but the sedative side effects were very very pronounced so we continued to drop the dosage until the sleepiness wore off and I still had success with pain management.
could you link me to resources for ice pick headaches Eric? I'd like to know more about that indomethacin/indocin you mentioned.
that cluster headache treatment guide you linked me to I printed out yesterday and was reviewing before I went to bed. I got thru about half of it...some more still to read, but thank you for the direction
I recall a short discussion about the 02 treatment with my GP before, but being that I'm dependant on the government for everything, I don't think I qualify...it would have to come out of my pocket, and my pocket is emtpy already  but, I will mention it with him again! the last 7 weeks have been a bad nightmare...
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