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Topic: New Dude..not 100% if Im in the right place (Read 848 times) |
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Lebowski_Dude
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New Dude..not 100% if Im in the right place
« on: Sep 27th, 2004, 8:58pm » |
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Hello Everyone,
I KNEW I wasnt 'alone', but Im not usually the 'web surfing' message posting type...but after 24 years of intermittent periods of hell and bliss..I got nothing to lose by putting this out there...
First:
some very interesting and 'relatable' [sic] topics. I was originally [and still am, I guess] Dx [sorry, medical habit], diagnosed with 'Classical Migraine' at age 11/12, after I had a 'pseudoseizure'..in Church no less whilst making my Confirmation [you can imagine What I thought!]..and then had my first 'clssic' Migraine soon after with the whole scotoma/vomiting bit..[it runs in the family: dad, grew out of em and both bros; still get them infreq, but without vomiting]..so, what am I doing on THIS site? well, about 4 years later had a real bad accident [severe facial/head trauma..I'll spare you the gorey details]..after years of operations, etc., my 'Classical Migraines' changed in 'status'..and I was Dx with 'Atypical Cluster Headache Syndrome, 2ndry to severe head trauma]..YET, still vacillate between 'migraine' like Sxs [symptoms, sorry..14 years working in a hospital will do that to one..everything becomes shorthand]..and Cluster Headache like symptoms..seen a billion neurologists, neuropsychiatrists, etc, etc. Been on EVERYTHING..from Immetrex to Ergotamine based meds, SSRIs and TCAs [antidepressants which Im sure many/most of you know have an 'off-market' use re: chronic-pain issues], Zomig, Fiorcet, fiornals [with/without Codeine, etc], Calcium and Beta blockers, etc., etc. Mostly with either no effect, or so many bad side-effects I stopped [yes Ive done the whole Oxygen/biofeedback/acupuncture/pressure/hypnosis, etc, etc]..dont worry, my postings will get shorter, I just NEED and would LIKE very much to know if there's folks out there that don't fit the 'textbook' presentation re Clusters..Ive definitely had some of the EXACT symptoms described [I'm a Psych Clinician and almost MD..getting there..eventually]. Has anyone else 'crossed' boundaries between Migraine-like presentations and Cluster presentations in their trips to hell? Anyone else ALSO have other disorders? as in 'sleep paralysis', or get intese 'auras' involving Deja Vus and/or J'amais Vus that DON'T 'stop'; they just keep coming like waves on a beach? My neuropsychiatrist thought I might have some form of Temporal Lobe epilepsy or Complex Partial Seizure Disorder [from some of my symptoms/experiences, etc.]..no 'one' [medical/neuro or otherwise] can 'pin down' my diagnosis..the best yet was: Atypical Migraine syndrome with Concommitant Atypical Cluster Headache Syndrome, WITH Concommitant history of severe head injuries [and crushing all the major cranial nerves on the right side of my face]. the 'IMPRESSION' I get, from the various docs I've seen, journals read/conferences attended, etc..is: My diagnosis is: 'We Don't Really Know'..dash of salt and sprinkle of pepper..[also known in medicalese as N.O.S.: ie, Not Otherwise Specified. I'm on Klonopin 0.5mg 3xday [which helps with the auras and headaches..and suggests that they're might be a bit of 'seizure' activity, not 'clonic-tonic' type, involved, OR it may control/help PTSD like-issues resultant from the trauma of my accident/surgeries,etc.; I suffer from anxiety attacks too that are somehow related/connected to my headache-stew] and, unfortunately, the only meds that STOP my 'headaches' are opiate based...so I dont know if I'm 'in' the 'right' site..with all the above being mixed up in a diagnosis that may be multiple diagnoses that cant be clearly separated...just wondering if anyone else out there 'crosses' diagnoses, or doesnt fit the 'typical' bill? I've definitely had Cluster Storms [textbook], but then alot of my headaches will be very different in nature to a 'typical' Cluster attack..I'm, at the moment, going on 3 straight weeks of waxing and waning intense headaches..crippling ones..and I dont like being on opiate meds long term, for obvious reasons...anyone out there know what I'm rambling about? Or experienced anything similar to what Im describing? Appreciate ANY feedback; especially anyone that has weird auras [that I havent gone into in detail] or other 'disorders', such as 'sleep paralysis' [thats when part of your brain 'thinks' your still 'asleep', so you're paralyzed, to avoid acting out your dreams physically, yet you're actually fully 'conscious' and can't move, and can 'hear' everything going on around you..there's other 'strange' symptoms I dont feel 'comfortable' describing, at least not yet, as they sound 'psychotic' in nature, but are actually 'typical'/similar to experiences other people with this disorder suffer...inc my mom and both bros! Which I just recently found out about..]..
Anyways, anyone with the patience to read through all this, thanks; sorry if its not 'succinct', but you know how it is when you're in severe pain..brain dont work good.
Peace.
The Dude
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O/ pointy bird/ pointy pointy/
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[mantra by world eminent neurologist/surgeon].
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RevDeFord
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Re: New Dude..not 100% if Im in the right place
« Reply #1 on: Sep 27th, 2004, 9:10pm » |
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I have megraines. I also have clusters. They are absolutely nothing alike.
Reread the symptoms of what a cluster headache is. We have a test on this site from the main page. Take it and see what it says.
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I don' know why it hurts, but I pray it will stop.
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Jeepgun
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Re: New Dude..not 100% if Im in the right place
« Reply #2 on: Sep 27th, 2004, 9:16pm » |
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Dear "The Dude," (I love that movie!!) 
Quite the intro! Welcome to the board. I am a typical episodic clusterhead. I generally get one cycle a year, 8-12 weeks in duration, and they are controlled with verapamil and injectable imitrex.
It sounds like you are going through absolute hell, and I can only express my wish that you soon, at the very least, outgrow the migraines!
What I was really curious about, is your description of sleep paralysis, deja vu, etc. I have premonitions about things, clairvoyant dreams, and sleep paralysis is a precursory state to traveling out of the body, or "astral projecting" as it is often called. Next time you experience it, try an experiment, if you are interested in exploring this altered state of consciousness further: Try viewing your room through your closed eyelids, or imagine that you are jumping on a trampoline, with each bounce taking you higher and higher. I also recommend a book which is more of a scientific (rather than mystical) bent, by Robert A. Monroe, "Journeys Out Of The Body." It's quite a classic in the field of OOBE's. Happy travels, if you so desire...
Again, welcome to the board. Check out the medical links to the left, take the questionnaire, and most of all, I hope you find some relief from your pain. You've come to the right place for support.
-Frank
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Kris_in_SJ
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Re: New Dude..not 100% if Im in the right place
« Reply #3 on: Sep 27th, 2004, 9:28pm » |
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Floridian, are you out there??
Sorry to hear of your suffering. If you're almost a doc, you have probably have more resources in terms of info than most of us ever would.
I'm a classic episodic CH sufferer. Never had a HA of any kind except tension until I was almost 40. Since then, I've had a cycle every 3-4 years that lasts about 2 months.
There's a pretty good search engine on this board. Try feeding in some of the things you mentioned in your post. Chances are, you won't find them all in one place, but maybe you can piece some together.
As I mentioned in my first line, some of the best research here has been mentioned on Floridian's posts.
Good luck - keep posting! Wishing you PFDAN!
Kris
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Lebowski_Dude
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Re: New Dude..not 100% if Im in the right place
« Reply #4 on: Sep 27th, 2004, 9:28pm » |
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Frank, thanks for 'saying' what I was holding back. Yes, I've managed, after, years, to 'see through' my eyelids and 'travel' around my apt/house..very strange..but intense. whats disturbing is/are the 'presence' of..'entities?'..that are either 'sensed' by me, or on one occasion, I actually saw an 'amorphous' blob a deep, dark 'shadow' pulsating on the wall..when 'it' became 'aware' I was 'aware' of 'it', it actually reacted and flowed out along the wall and out the window..it sounds 'crazy'..and I WORK in the psych field with 'true' psychotics, but there was nothing 'psychotic' about the experience...though some friends give me that 'look'..thats why I didnt 'post' it...I'm also an 'expert' Lucid Dreamer; that is, about 80% of my dreams are 'Lucid' in nature..and I've experienced 'premonitions' that I was actually able to 'verbalize' to friends/loved ones BEFORE they happened..which FREAKED them out as much as me..thanks for the reply..Im interested in going into Neuropsych because I believe there's a 'connection' between all of these things..that Clusters and Migraines and Seizure states, etc., are possibly 'us' tapping deeper reserves of our 'brain/mind'..if my 'colleagues' could hear me they'd probably want to put ME on an antipsychotic!
Thanks for your candor...my brothers and I talk aout this 'stuff' all the time..as they have similar experiences; I was really blown away when, questioning my mom one day, who's very 'pragmatic', she described similar experiences..but wasnt comfortable with it.
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O/ pointy bird/ pointy pointy/
anoint my head/ anointy-nointy.
[mantra by world eminent neurologist/surgeon].
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john_d
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Re: New Dude..not 100% if Im in the right place
« Reply #5 on: Sep 27th, 2004, 9:30pm » |
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'welcome' dude. You have a 'unique' situation and I am not 'sure' if I 'understand' it, but it sounds like it 'sux' 
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| « Last Edit: Sep 27th, 2004, 9:30pm by john_d » |
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jhammer
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Re: New Dude..not 100% if Im in the right place
« Reply #6 on: Sep 27th, 2004, 9:35pm » |
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Welcome Dude man!
I'm always interested to see how people in the medical field afflicted by this ailment describe it. I'm sure my four-letter based adjectives are primitive in their context...but express my feelings nonetheless.
Hope you find some information here that get's you somewhat straightened out.
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eyes_afire
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Re: New Dude..not 100% if Im in the right place
« Reply #7 on: Sep 27th, 2004, 9:52pm » |
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Some people here get both migraines and cluster headaches. Your history of severe head trauma probably complicates diagnosis. You may have to hang around here for awhile and soak in the information before figuring out what's what.
Quote:or other 'disorders', such as 'sleep paralysis' [thats when part of your brain 'thinks' your still 'asleep', so you're paralyzed, to avoid acting out your dreams physically, yet you're actually fully 'conscious' and can't move, and can 'hear' everything going on around you..there's other 'strange' symptoms I dont feel 'comfortable' describing, at least not yet, as they sound 'psychotic' in nature, but are actually 'typical'/similar to experiences other people with this disorder suffer...inc my mom and both bros! Which I just recently found out about..]..
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Yup, true sleep paralysis is scary as hell. Especially when accompanied by the visual and tactile hallucinations and out of body experiences. (Of course, acting out dreams is no picnic either, BTDT). I know what you're talking about. Perhaps you suffer from a sleep disorder? As for me, I have a feeling that my sleep patterns have a large influence on my cluster headaches. I'm finding that if I shift my sleep pattern by a mere 60 minutes I'm likely to experience increased CH activity.
My philosophy indicates that there are 3 Realms of Being:
1. 'The Material Realm'
2. 'The Realm of the Dead'
3. 'The Realm of the Subconscious/Superconscious'
Well, look at it this way: As a Psychonaut of the Third Realm, you're privy to some 'bonus awareness' that some people don't get (even though it can be quite horrific).
I'm not psychotic.... honestly 
(... at least we don't think so...)
--- Steve
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Lebowski_Dude
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Re: New Dude..not 100% if Im in the right place
« Reply #8 on: Sep 27th, 2004, 10:04pm » |
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JHAMMER,
Awesome 'pic'...I KNOW the 'feeling'. You folk sure are welcoming..I was just telling another 'replier' that its both 'good' to know that theres alot of 'us' out there, but also upsetting. Im NOT an MD [yet..] my 'expertise' is clinical psych..and re: 'knowing' more about the condition because of my education/training..ANYONE can read the books/journals out there [once you learn 'medicalese']..and Ive spent many [too many, or 'not enough?'] hours 'searching, etc..both on-line, text books/journals, and picking the brains of MY various doctors [ones Im seeing, or seen; and ones I work with professionally] re Migraines, CH, and other Neurological..'unknowns'..Im sure all you folk out there know, or have come to realize: What we know about the brain/mind/spirit is pretty much zilch..
and its important for 'us' to know the 'lingo/jargon' as well as the THEORIES [because thats all they are, are 'theories'; yes, the posible 'etiologies'of CH/etc, may have 'scientific proof'..but it always comes down to the 'chicken first? or egg first?'; that is: Are the observable changes in PET scans and Cerebral Blood Flow imaging the CAUSE or the RESULT or PART of a deeper process??]
its sites like these that medical/etc people who DONT suffer CH, or Migraines, or etc, etcs..should be perusing...WE can edu-mucate OUR doctors as much as they can educate 'us'; no?
how can you explain to someone what a CH or Migraine is ACTUALLY like..
I wouldnt wish them on Satan him/herself..but I wish [sometimes] my doc(s) could experience the PAIN just for a brief moment..so they could TRULY empathise/understand..my sig other 'tries' her damndest to 'understand' [and she's experienced severe sinus headaches for years]..I actually just 'cut and pasted' that qoute re: how female 'sufferers' of CH have compared the pain to as intense as childbirthing pains..that blew MY mind! As a man I cant 'imagine' that pain, but for a woman whos experienced BOTH and 'compared' them..that might give her some more undrstanding...she is AWESOME though, and beyond patient with me..when I turn 'evil' or bang my head against the wall cause it feels 'good', or 'better' than the 'other' pain Im in.
Thanks for the Replies. All of you..I gotta sign off now though; but I'll be back to say hello and offer MY support.
Peace.
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O/ pointy bird/ pointy pointy/
anoint my head/ anointy-nointy.
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stevegeebe
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Re: New Dude..not 100% if Im in the right place
« Reply #9 on: Sep 27th, 2004, 10:25pm » |
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Dude...sounds like you're abiding.
I hope you find some relief.
Don't know what else to say.
Steve G
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Donna
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Re: New Dude..not 100% if Im in the right place
« Reply #10 on: Sep 27th, 2004, 10:38pm » |
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My youngest son suffered migraines from 6th grade until age 17, when they changed charactistics of migraines to clusters. No notable incident.
I was a sufferer from age 20 until 48, when, after having surgery (hysterectomy), my episodic ch left and have not returned after 29 years.
One of several things that lead me to believe that you do not suffer from cluster headaches is that most people with clusters find no relief with the use of narcotics.
This site and the OUCH site (look in left margin) have more information than you'll find anywhere.....and it comes from thousands of us...ACTUAL SUFFERERS. You will find graphs of what meds work best for what % of the population, as well as a cluster quiz, preventatives, abortives and every type of test known to man.
You will find that we have grown from just OUCH USA to having affiliates in several other countries. You will find, among our list of members, the following:
Honorary Members
Professor Peter Goadsby, M.D., England
Albert L. Gutierrez, President / CEO Shore Memorial Hospital
Dr. Csaba Ertsey, Department of Neurology, Semmelweis University, Hungary
Professor Goadsby continues his research, and has come to the conclusion that cluster headaches are a product of a hypothalamus problem, unlike other types of headaches. You will find reference to his peer-reviewed works.
We take our Mission Statement very seriously, and sincerely hope that you may find the answers that you need in the information we have provided.
We have great works in the pot right now, and if you will go to the OUCH Members message board...
http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi
you will be impressed with our organization. Your knowlege in medicine can also be a great boone to our cause if you choose to join us in our cause to win the battle over this beast of an affliction.
I'm truly happy that you found our site and hope that you take the time (and it will take a lot of time) to read and do your homework, you will find something that will be of benefit to you.
In the meantime, a big welcome to Clusterville and whether it be the sending of good vibes, prayers or wishes that you accept, you will certainly have a truckload of them coming your way.
Ours is a family that has the great gift of instant bonding, looking out for one another, and always making sure that there is room for another member.
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| « Last Edit: Sep 27th, 2004, 10:47pm by Donna » |
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Lebowski_Dude
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Re: New Dude..not 100% if Im in the right place
« Reply #11 on: Sep 27th, 2004, 11:09pm » |
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Steve: Yes, I'm ABIDING alright; what else can one do?
Donna: Thanks for the input; I will continue [as always, to 'search']..re: 'narcotics' not working on CH..hmmm, Im not a Neurologist or a Medical Doctor, but thats interesting...Im also no expert on CH and/or 'accepted' theories on what does or doesnt work; I'll look into that [and the links you suggested]..but, yeah, with Some of my headaches NOTHING does the trick...
but like I said: I got a real mixed bag going re 'possible diagnoses' and the last thing I need is any more 'med trials'..the Imetrex 'stick' USED to work [at least when I was 99% sure I was having a 'classic' CH and not a 'mish-mash' headache] and so did Sansert, for awhile etc..I guess I'll take that 'med quiz' as Ive been on pretty much all of 'em..and see what 'comes out'. thanks.
and yes, IF I'm fortunate enough to go the way of Neuropsych it'll be in both treatment and research...
and I'd love to join the 'team' as someone who's 'been there, done that'
Vig: So it goes. I'll see you on Titan.
You've all been great re yer input..
I'm outta here..its 4am Irish Time...
I must try and sleep
Goodnight..and anyone else out there suffering.
You WILL make it.
With all this support and info-links..you're/we're well armed.
peace.
I'll re-visit soon.
And thanks again; some of you have made me laugh, think and taken me 'outta' my head for an hour or two.
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O/ pointy bird/ pointy pointy/
anoint my head/ anointy-nointy.
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alleyoop
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Re: New Dude..not 100% if Im in the right place
« Reply #12 on: Sep 28th, 2004, 12:33am » |
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Good post Lebowski_Dude.
Welcome!
......................alley 
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Charlie
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Re: New Dude..not 100% if Im in the right place
« Reply #13 on: Sep 28th, 2004, 2:34am » |
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Welcome aboard and I'm sorry for all the hell you're going through. This may be a good place for you and all I can say is to look us over. You'll find a lot of good ideas for dealing with this horror.
I've never had a migraine; never. I have complex partial epileptic seizures (I really hate this stupid desription) and I had CH for 22 years. I've been pain free for 13. My CH was typical episodic with two or three cycles a year. Not exciting or as complex as what you are dealing with.
Stick around and let us know how things are going.
Charlie
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BarbaraD
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Re: New Dude..not 100% if Im in the right place
« Reply #14 on: Sep 28th, 2004, 6:16am » |
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L Dude,
I'm chronic CH and a woman and yes, CH is WORSE than childbirth (at least with childbirth you have something to show for it afterwards). I'm also blessed with migraines and post traumatic concussion headaches (lucky me!), so I can relate to some of what you're going thru.
Right now I'm on a dosage of 100mg of Topamax (anti-seizure) and 50 mg Trazadone (anti-depresant) and it keeps the CH down to a minimum most of the time. I use cafergot and phenergan to abort the ones that break thru.
Have you tried O2? That helps most of us. I keep a bottle handy and it is usually my first line of defense. sometimes it helps - sometimes it doesn't, but I try it first before medicating.
I'm with the others about doing your research on this site. It's a compilation of years and is probably the best you'll find in the world on CH.
Hope you find some relief soon.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Gator
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Re: New Dude..not 100% if Im in the right place
« Reply #15 on: Sep 28th, 2004, 6:37am » |
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Big welcome to LD!
Sounds like you got a lot on your plate. I hope you can find the info that will help you here and on the OUCH website. If'n ya need any help with anything or an opinion on something, let us know. We got lots of opinions. Know, however, that none of us is docs, so anything we might say or suggest is purely personal experience. Check with your doctor before actually trying anything.
Again, welcome to the asylum.
Gator
BTW. Saturday nights 9 - 10 pm is your turn in the barrel.
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Woobie
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Re: New Dude..not 100% if Im in the right place
« Reply #16 on: Sep 28th, 2004, 6:42am » |
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Welcome 'dude'
Dont know if you're in the 'right' place either, but I
hope you get a real 'diagnosis' soon so you can get 'help'.
sorry you're in pain 'dude'.
'WOW'
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| « Last Edit: Sep 28th, 2004, 6:43am by Woobie » |
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Gator
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Re: New Dude..not 100% if Im in the right place
« Reply #17 on: Sep 28th, 2004, 6:45am » |
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on Sep 28th, 2004, 6:42am, Woobie wrote:Welcome 'dude'
Dont know if you're in the 'right' place either, but I
hope you get a real 'diagnosis' soon so you can get 'help'.
sorry you're in pain 'dude'.
'WOW' |
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Jeepgun
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Re: New Dude..not 100% if Im in the right place
« Reply #18 on: Sep 28th, 2004, 9:02am » |
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One more thing, Dude: You may want to check out http://www.astralsociety.com
Best wishes and pain-free vibes to you.
As for "entities," if they begin to be a nuisance, just ask for help, or start flying straight up. Without getting too far off-topic for this forum, disturbing entities usually are denizens of the lower sub-planes of the astral world and feed vicariously on fear, anger, lust, and addiction of human beings. Hence, the higher you go, the finer and brighter the energies and entities become.
Happy travels! 
-Frank
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Lebowski_Dude
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Re: The Dude says: WOW and Thank You!
« Reply #19 on: Sep 28th, 2004, 2:27pm » |
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Hey Folks,
Thanks for the support and info; esp Donna. Yes, I will be checking the Archives and search Engines; it'll be interesting to see the genesis of this web-site; and, yes, unfortunately, they're are alot of 'not so nice' folk out there who may try and take advantage of chronic pain sufferers [whatever their diagnosis]..I was horrified to see one posting about 'snake-oil-salesmen' trying to "deal [illegal, Im assuming..or 'fake' cures'] DRUGS?!" via
the Message Board. Is that for real?
Gator: I got alot on my plate alright [Ive always had a good 'appettite', though] but its obvious we all do..but we're still HERE! Arent we.
Great icon/pic by the way..I can relate to that.
In fact alot of you have some very appropriate and funny 'icons' that proves a 'picture's worth a thousand words'.
Like AlleyOoop's 'head-banger'..that made me laugh, recalling the damage my bro [a CH-only sufferer; now pain free, or in 'remission' for a loonngg time] and I did in denting our sheet-rocked bedroom walls from head-bangig [sometimes in STEREO!]; but, hey, it kept my dad busy, he's a real DIY guy who lives for building, repairing and adding additions to additions..[he too was a long time Migraine sufferer, but grew out of it in his late 20s].
Frank: Thanks for the 'link', yeah, this forum may not be the best place to discuss those issues; they are real though and [I believe] are some how connected with humans evolving and learning to tap the infinite reserves our brain/mind has in store....many 'famous' Migraine sufferers and/or epilepsy sufferers [Hildegard, Swedenborg, etc.] had some very interesting experiences..anyways; there's a link there somewhere..maybe fueled or made possible by serotonin pathways and possible neuronal 'anomalies'. oR THE EVER CHANGING 'PLASTIC' BRAIN.
I am curious as to how many other people [like Charlie and BarbD] have other, or concurrent/concommitant disorders, like Migraine AND CH, or some form of epilepsy AND CH.
BarbD: As I noted in my first posting; I too had a severe accident [age 15, 3 years after I was diagnosed as Migrainous] involving brain/facial/nerve trauma [which also affects one psychologically, as in PTSD and anxiety issues];thats how/why I went into the Psych field..
a. I wanted to be able to converse with the ten thousand doctors I was seeing/have seen, in 'their' lingo.
b. I felt very strongly that being a sufferer of, originally Migraines, and then Post-Head trauma with definite 'classic' cycles of CH [Ive noticed alot of 'eyeball' nicknames..nothing like having one huge glaring, red, throbbing eyeball looking back at you in the mirror, huh?]..and then having one or two 'specialists' investigating if I ALSO had some form of temporal Lobe Ep, or Complex Partial Seizure DO, etc..
that I might be 'make' a better therapist [or, if Im successful re med-school] a better doctor...having been through the mill, and encountered alot of brilliant doctors [but who had terrible 'bed-side manners', etc.] I wanted one of US out there who could offer patients/clients some authentic empathy and understanding.
And be involved in research re CH, Migraines, and other brain disorders.
I dont know how many doctors, in a dismissive [likely because they couldnt pin down a definite diagnosis, or I didnt fit into a little box out of a text book] tell me [or my folks]:
"Its all in his head."
I dont think they [the docs] understood why I'd laugh so hard when they'd say that. Yeah, it CERTAINLY IS 'all in my head', does that make it 'not real'?
Which brings me to another observation: You all seem to have a great sense of humour; and as one person's 'footnote' said [quoting Nietzsche]:
'What doesn't kill me, makes me stronger'
I'd agree 100%...
RevDeFords 'quote' re: 'if the neighbours know you're in pain..' etc, made me laugh too.
Back to some questions: How many people have identified triggers and/or patterns [whether seasonal, like the unusual increase in CH cycles around Spring and Autumn..mine, whether straight CH cycles, or weird variants on Migraine and/or Post-Head trauma related, usually occur in September, my birth month, but also the month I had my accident in..which suggests to me that there's a possible/likely PTSD issue there; also, my cycles got incredibly intense after 9/11...]
Do any/most of you have triggers/patterns that you can identify [time of year/day, stress, etc.]?
I know 'auras' are NOT a hallmark of CH, but are Migraine and Epilspsy trademarks..
BUT, do any/many of you know, or sense, that you're gonna be getting a CH, or do they just come out of the blue without warning?
Thank you everyone for your support, emails and replies. I'll be checking in when I can to offer my support and observations and may pester alot of you with questions.
We ARE the best source of information re CH and other brain-pain issues. The more we know, maybe the more we can export to the doctors, researchers, scientists, etc. out there working on these issues.
Space aint the Final Frontier! The brain/mind is. Its amazing [to me] that science knows more about the Universe outside us than the universe Inside us.
If they're ten years a head of schedule re the Human Genome Project, lets hope that they're soon ten years 'a head' of the human Head Project!
Abiding, as always,
The Dude.
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O/ pointy bird/ pointy pointy/
anoint my head/ anointy-nointy.
[mantra by world eminent neurologist/surgeon].
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EmpressJMB
New Board Veteran
No Brain, No Headache
Posts: 114
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Re: New Dude..not 100% if Im in the right place
« Reply #20 on: Sep 28th, 2004, 2:47pm » |
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Hi Dude! Alot of the stuff you said, I don't understand. However, your last post was more my speed. Yes, I can feel a CH coming on. I can feel it "in there". We call those "shadows". My shadows have been becoming more frequent the last couple of days, which in turn is turning up the anxiety that I will be banging my head one of these days/nights soon. My pattern seems to be seasonal but they can occur any time. Late August on is the worst. Just FYI, I also have alot of psychic ability which quite often freaks my friends out. Good Luck!
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...sometimes at night I think I understand. Brother to brother, man to man, face to face, hand to hand, the shadow dance that never ends. Shadow boxing the silent war within...yet again. Weir/Barlow
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Jeepgun
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Re: New Dude..not 100% if Im in the right place
« Reply #21 on: Sep 28th, 2004, 2:48pm » |
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My cluster headaches used to hit every autumn, right around the end of August, however, last year, I didn't get hit with a cycle until February. This year looks as though it will be the same.
When I am in cycle, my headaches seem to be triggered by barometric pressure, but I can't say for certain. When I get hit at night, they are VERY punctual. I am guaranteed to get hit at exactly 12:32 a.m. every single night. When I get hit, I sit up and look at the clock.
If I'm awake and about to get hit, I usually know it. It comes on as a vague sense of... apprehension, with a faint pressure around my right eye.
That's all I can tell you of my own personal experience. Next cycle, I'm going to keep a headache journal and start keeping track of the times. I suspect that the other hits are just as punctual....
-Frank
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BlueMeanie
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Re: New Dude..not 100% if Im in the right place
« Reply #22 on: Sep 28th, 2004, 3:21pm » |
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Welcome Lebowski Dude.
No psychic ability here. No head trauma here. Nothing abnormal (that I know of) here. Just a regular guy (lol)with Cluster Headaches (26th year).
Yes my CH's are seasonal. Every fall and about once every 4 years in the Spring. They usually start with shadows for a couple of weeks, then WHAM !! Last about 12 weeks then disappear.
When in cycle they hit about the same time day after day. The one that's the most regular is the 2:15 A.M. like clockwork.
Food has no effect on my CH's. Lots of people here swear that diet is the answer, but for me it makes no difference. My triggers are aromas & Alcohol. I can't drink during a cycle. Hair spray, plug in air freshners and perfumes are a no no when in cycle.
That's my story and i'm stickin' to it. LOL
Again, WELCOME TO CLUSTERVILLE. Take care. PFDAN
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Lebowski_Dude
New Board Newbie
"Cool Marmet"
Gender:
Posts: 13
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Re: New Dude..not 100% if Im in the right place
« Reply #23 on: Sep 28th, 2004, 3:27pm » |
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Empress: Sorry, I tend to go off on alot of tangents, just the way my brain works; and after 14 years of working in the Psych field and hospitals/etc, Im still in the habit of speaking 'medicalese'
Thats really intersting re: 'shadows'. First time Ive come aross that description, but I am a 'newbie' to this site and you all do have your own 'lingo' and shorthand that I'll have to learn/pick up on.
So these 'shadows' are just a 'feeling' or a sensing? And, yes, I am very interested in the [it seems alot! of people that have replied/shared/described] psychic and other paranormal experiences...I cant help but wonder if CH and Migraine and epilepsy sufferers on the one hand: Have these terrible attacks, yet, on the other there's a positive side to it all?
What I mean is: Maybe its the 'price of admission' [the pain that is] for tapping deeper parts of our mind/being/brain?
Frank: Talk about synchronicity! Just as my computer alerted me to your message I was on the phone with my mom [checking up on my status] and I was wondering aloud, to her and myself [and its some pattern Ive noticed myself over the years] if all the low pressure systems we've been getting [kick-offs from the last 3 hurricanes that hit you folkson the south n east coasts; and, yeah, it does RAIN alot in Ireland, esp where I'm living; but its been NON-STOP the past few months, enough so even the locals are complaining! and its been esp bad the last 3 weeks..the beginning of my current cycle]...hmmmm.
And keeping a Headache Journal [or even a general one] is the best advice I can give to ANYONE who suffers from CH, or any type of chronic pain issue, or any condition [including Life in general]!
So you too [like Empress] get a foreshadowing of whats a coming.
And re the 'punctuality' 12:32 exactly; I dont mean to pry, but is there anything in your personal history that happened [that was traumatic/intense/life changing] at that EXACT time? Maybe years ago?
Just wondering.
But I'll take the fact that you replied with your observation at the exact time I was discussing 'barometric' pressure as a possible reason with my mom [who thinks so too] as a 'meaningful coincidence'. IE: It wasnt a 'coincidence'!
Strange thing is: I love sky-diving and scuba-diving..[when I have the time and cash and means,] I have to keep track, now, the next time I 'jump' or scuba, if anything happens after my jumps.
I do recall one visit to Death valley with my girlfriend, few years back, where she had to do 90 mph outta there to a hospital, as I was almost passing out from the pain I was in; yet, Ive been to Death valley and the Grand Canyon couple times before and nothing 'happened', at least not right away..I have to ask my girlfriend about those road trips; she's got a steel-trap for a memory.
Thanks to both of you. More 'data' for me to put serious question marks next to..both in terms of learning about my own cycles and interms of giving back my observations/opinions to this forum..and maybe even one day, getting into some serious research about CH and other headache/chronic pain issues.
Out of curiosity [yes, I know I still have to go through the Archives and Site History, etc.] but has any Serious Research Group come on board to this site and started asking all you folk very specific questions?
Donna has put me on track to some answers re this question; which Im gonna check out.
I'll be back later.
Empress: Hang in there.
Frank: Thanks.
everyone else:
Wishing you pain free Time.
I'm gonna go lay down for awhile and try and rest.
This site is awesome, but the computer screen is burning a hole in my right eyeball right now, right back to the rear of my head.
Ow. [To put it extremelyyy mildly].
The Dude
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O/ pointy bird/ pointy pointy/
anoint my head/ anointy-nointy.
[mantra by world eminent neurologist/surgeon].
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Jeepgun
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Re: New Dude..not 100% if Im in the right place
« Reply #24 on: Sep 28th, 2004, 3:34pm » |
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Dude, I'm taking a scuba course right now. I went snorkeling in Bermuda last June and got hooked.
-Frank
(Erin go bragh!)
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