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tanner
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ok, me in a nutshell
« on: Dec 9th, 2002, 10:05pm » |
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thanks again to all,
i'm a 49 yr old married man, if you won't hold it against me forever i will admit that i was a migraine sufferer in my late teens and into my twentys. i've had meningitis 4 times in my life, twice viral, twice bacterial. i don't think that has any tie to this hell but i did at first. i was varnishing a door in march of 85 when all of a sudden someone/thing shot, stabbed,exploded under my left eye high up behind the cheekbone. i thought something had popped and i was going to die. (literally) after getting home from the er filled up with demerol it didn't go away. it never went away. it ebbed and flowed from ice pick suicide to just bad but it never left completely. the first neurologist i saw said tumor, then not. at any rate i went to a number of idiots in the next few months including one eye/ear/throat guy who peeled my face back, cut a 'window" in my sinus cavity, pinched the trigeminal nerve and injected it with alcohol. the end result was a numb drooping face with horrible pain behind it. after a couple years of this kind of crap i wound up at rush hospital in chicago seeing a great doc. he still wasn't able to make a 100% diagnosis but at least he admited it. after sending me to mayo and consulting with a name guy in san francisco they finally agreed on chronic cluster migraine varient. hoo rah!
tried tegretol,clonopin,halcoyon,dhe, and a host of other things. finally in frustration i had myself INCARCERATED in the michigan headache clinic. (i apologize here to anyone that may have been there and had a good experience).
the witch doctors there tried beta blockers, verapamil,sansert, prednisone, god knows what all. i was a zombie with horrible facial pain. we looked for triggers found none, we talked to psycs endlessly, we went to group and sat with a bunch of seriously disturbed painpill junkies and a few actual migraine(genuine) victims. the only bright spot to that whole ordeal was being roomed with an older gentleman that had clusters but had just gone into remission and was leaving. this was the first person i had ever met that not only knew where i was coming from but assured me i wasn't alone and crazy. end result clinic 0 - tim 0
i guess at this point i should point out whats different (i think) about my pain .
i never have a day without it. (i now know this isn't diff)
the pain is always there it only varies in intensity.
i was never able to identify a single trigger
i don't have any pattern that i can find, not a sleep pattern, not a pain pattern. the ice pick, cheek grinding,eye pummeling jumping around like a bad break dancer periods come at any time but mostly during the day (afternoon-evening). my attacks rarely wake me because i only sleep after enough days/nights have gone by to pass out from exhaustion. after or during most bad attacks i feel like something shifts or splits between the right and left sides and i can't think right or focus on anything i start to write as if i was dyslexic. even though i can see through both eyes i feel like i can't, i feel like only part of me works.
i read a book called "beautiful swimmer" in 92 and decided to go visit the chesapeake bay to see where it was written and THE FREAKING PAIN STOPPED!!!!
it just stopped! i don't even think i caught on right away. i think i just assumed it couldn't be gone, but it was. i stayed in the bay region(eastern shore) afraid if i left it would come back. came up with all kinds of theories as to why. and after a time i am sorry to admit i forgot about clusters and cluster people. (well i'd really only met one other). a good reason and a good job came up and i left the east in 1998 to return to the midwest so i could spend my parents last years near them. after they both passed we packed it up and went west (all the way to cali) so we could do the same near my loves parents.
and then july 4th 2001, the fucking thing came back. i couldn't, still can't believe it i denied it could be the same thing . finally had to stop working this last july . i'm still a good guy, good employee, smart, just can't be depended on being able to stay with a time schedule.
during the remission (i now know thats what it was) i was diagnosed with hep c while going to an allergist. seems i may have had since 71 (vietnam).
all those meds, all those drinks, oh my god!
so now i don't take meds, i don't drink, i'm scared shitless and i don't know how to escape. even for awhile. tomorrow i have my first appointment with a neurologist in over 10 years and i have no idea why! i at least need to sleep. thats not asking for so very much is it?
well thats my nutshell, part of my whining and a piece of my mind for what its worth. after new years we are going back to the eastern shore of the chesapeake bay and hoping, praying for a miracle.
to anyone that made it this far; thanks for listening. i hope to repay the favor if i can.
tanner
aka Tim Rambow
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Azrael
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Re: ok, me in a nutshell
« Reply #1 on: Dec 9th, 2002, 10:28pm » |
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Could you have Hemicrania Continua? It's a TAC like CH, but it's unremitting for months or years at a time. Here's the criteria from the IHS:
3.4 Hemicrania continua
Description: These headaches are usually non-remitting (36, 37) but rare cases of remission are reported (3 . Whether this headache type can be further sub-divided according to length and persistence of history is yet to be determined (39, 40).
Diagnostic criteria
A. Headache present for at least 2 months fulfilling criteria B-E
B. Unilateral headache without side shift
C. Pain has the following qualities
1. Daily and without painfree periods
2. moderate severity but with exacerbations when it becomes severe
D. Complete response to indomethacin
E. At least one of the following autonomic features in association with exacerbations of pain on the affected side. There must be automonic features otherwise it cannot be TAC
1. Conjunctival injection and/or lacrimation
2. Nasal congestion and/or rhinorrhoea
3. Ptosis and/or miosis
F. Not attributed to another disorder
Good luck!
PFDAN............................... Drk^Angel
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cootie
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Re: ok, me in a nutshell
« Reply #2 on: Dec 9th, 2002, 10:31pm » |
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Wow........wow....and wow a'gin.......so sorry about all yer pain and troubles.....that's a hell of a history !! I can only wish you the best....hope the nero can help ya....good luck !!!!
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paul_b
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Re: ok, me in a nutshell
« Reply #3 on: Dec 9th, 2002, 10:43pm » |
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Welcome aboard. Amazing you have been able to keep the "nutshell" from completely cracking. You are diffinitely a survivor and by doing so give strength to us all. If you haven't already downloaded the info which would be useful when you see the doc, it wouldn't hurt to bring it with you. Many of us have had some success with O2 and Imitrex. Know what you mean about needing sleep and the sudden attacks. I am 60, CH's started in late 30's, had 4 yr remission and now the Beasts back. I have used my history in dealing with it and it has been helpful with my doc. I wish you the same success.
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tanner
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Re: ok, me in a nutshell
« Reply #4 on: Dec 9th, 2002, 11:01pm » |
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drk^ angel,
i don't know what that hemicrania thing is but if it means i'm gonna get booted out of here already then no, i don't have that!
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it's just my head that sucks...http://www.centerforlit.com/
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cootie
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Re: ok, me in a nutshell
« Reply #5 on: Dec 9th, 2002, 11:05pm » |
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A one-sided headache..."hemicrania continua" (HC)
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Woobie
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Re: ok, me in a nutshell
« Reply #6 on: Dec 9th, 2002, 11:35pm » |
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either way Tanner..
use the information on the left for info for you and your Doc/s it has helped alot of us here. Sorry you have the pain but glad you came here for help.
let us know what happens next
Cerebus
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SommelierCH
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Re: ok, me in a nutshell
« Reply #7 on: Dec 10th, 2002, 12:49am » |
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Good God Tim,
You’ve earned your fucking wings! Your welcome to stay no matter what, as far as I’m concerned (of course that means nothing). If nothing else, you can become my “supporter”.  That kind of story is what helps me to cope, and show me how insignificant my pain is in the whole scheme of things.
Hell of a call Dark. Maybe/maybe not, but hell of a call. I had to look up 3.4.D
D. Complete response to indomethacin
Indomethacin is a nonsteroidal anti-inflammatory indole derivative designated chemically as 1-(4-chlorobenzoyl)-5-methoxy- 2-methyl-1-H-indole-3-acetic acid. Indomethacin is practically insoluble in water and sparingly soluble in alcohol. It has a pKa of 4.5 and is stable in neutral or slightly acidic media and decomposes in strong alkali.
Uses: Not a simple analgesic; use only for the conditions listed. Moderate to severe rheumatoid arthritis, osteoarthritis, and ankylosing spondylitis (drug of choice). Acute gouty arthritis and acute painful shoulder (tendinitis, bursitis). IV: Pharmacologic closure of persistent patent ductus arteriosus in premature infants. Investigational: Topically to treat cystoid macular edema (0.5% and 1% drops), sunburn, primary dysmenorrhea, prophylaxis of migraine, cluster headache, polyhydramnios.
Indole is a component of the amino acid tryptophan. Some bacteria have the ability to break down tryptophan for nutritional needs using the enzyme tryptophanase.
One of the derivatives of Indole is Indole-3-carbinol
What does it do? Indole-3-carbinol is one of the major anticancer substances found in cruciferous (cabbage family) vegetables. It is a member of the class of sulfur-containing chemicals called glucosinolates.1 It is formed from parent compounds whenever cruciferous vegetables are crushed or cooked.2 3 Indole-3-carbinol and other glucosinolates (e.g., other indoles and isothiocyanates such as sulforaphane) are antioxidants and potent stimulators of natural detoxifying enzymes in the body.4 5 Indole-3-carbinol and other glucosinolates are believed to be responsible for the lowered risk of cancer in humans that is associated with the consumption of broccoli and other cruciferous vegetables like cauliflower, cabbage, and kale.
Tim, in the morning more of the chemistry people will show up on the board. I wish you the best with the new Neuro. Let us know how it goes.
PFDAN
David J.
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Re: ok, me in a nutshell
« Reply #8 on: Dec 10th, 2002, 1:12am » |
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I forgot to say, that if you have Hep C and don’t take any meds, please try oxygen (if you haven’t already). Do a search on this site about it and please give it a shot. It’s so benign and might be your best shot for some kind of relief.
David J.
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Re: ok, me in a nutshell
« Reply #9 on: Dec 10th, 2002, 1:13am » |
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Tanner,
Whoa! Some pretty heavy stuff, sorry to hear all this my friend, but welcome to the board.
Definitely cruise through the buttons on the left, particularly the OUCH website, which has an excellent research library, and the post archives. Hope we can help you out.
You said you visited Rush, are you from Chicago originally?
Peace,
-R
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Re: ok, me in a nutshell
« Reply #10 on: Dec 10th, 2002, 1:25am » |
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Timbow, here's some more:
Hemicrania Continua
Overview
Hemicrania continua (HC) is the (non-official) name initially given to a chronic, continuous, fluctuating, unilateral headache associated with subtle eye signs and rapidly eliminated by the daily intake of indomethacin.
In 1994, Newman, Lipton, and Solomon reported 10 new patients with HC and reviewed the previously reported 24 cases. Patients fit into one of three temporal profiles: (1) remitting form, (2) unremitting form evolved from remitting form, and (3) unremitting form. All patients had their headache eliminated by indomethacin, or else they would not have met the authors' criteria for HC. However, some needed doses as high as 150 to 200 mg daily in three divided doses. When the effective dose was prescribed, headache relief usually began in several hours and was complete within 1 to 2 days. Even in those whose headaches disappeared sometimes, the pain was continuous during the painful states. Its intensity was moderate, but the majority also had periods of more-intense pain lasting from 20 minutes to several days. During these, some patients had nausea, photophobia, and accompaniments similar to but milder than those of cluster headaches, namely ipsilateral conjunctival injection, lacrimation, ptosis, and nasal congestion. The great majority also had idiopathic stabbing headaches during their flare ups. Although other analgesics alleviated some patients' headaches partially, none had an effect close to that of indomethacin.
Current ideas on hemicrania continua
Workers agree that headaches with the characteristics of hemicrania continua may or may not respond to indomethacin (in adequate doses). Whether such responsiveness signifies a specific headache mechanism can't yet be known. Hence, their classification remains based on clincal preferences. Pareja and his co-workers (2001a, 2001b) are among those who prefer to keep the two varieties separate. The indomethacin-responsive type they call hemicrania continua vera (true variety), while the unresponsive type they call hemicrania generis incerti (undetermined-nature variety).
They advocate the following features as obligatory for the diagnosis of the "vera" variety:
1. Unilaterality without side shift
2. Absolute and protracted indomethacin effect
3. long-lasting repetitive attacks--hours/days/weeks, with a tendency to a fluctuating chronic pattern over time
4. Intensity of pain: mild, moderate, or severe (not excruciatingly severe
Dodick (2001) is among those who do not see the effect of indomethacin as signifying two basic types of hemicrania continua. He prefers the following diagnostic criteria:
A. Unilateral headache
B. Pain has all 3 of the following:
1. Continuous but fluctuating severity
2. Painful exacerbations of at least moderate severity
3. Lack of precipitating mechanisms
C. Absolute response to indomethacin or one of the following features with severe pain exacerbation:
1. Conjunctival injection
2. Lacrimation
3. Nasal congestion
4. Rhinorrhea (runny nose)
5. Ptosis (droopy eyelid)
6. Eyelid edema
7. idiopathic stabbing headache
Drugs besides indomethacin
Celecoxib (trade name "Celebrex" in the U.S.) seems to be an adequate substitute for indomethacin in some patients with hemicrania continua of the type responsive to indomethacin (see case report in box above). So, this drug should be tried when indomethacin can't be tolerated because of side effects. Moreover, it could also be tried even when indomethacin doesn't produce side effects, because it is less likely than indomethacin to induce ulceration of the stomach during chronic administration. If it doesn't work as well, then indomethacin could be re-started.
In a paper in 2002, da Silva et al. reported a 40-year-old man whose unilateral headache had the features of hemicrania continua but was unresponsive to 200 mg of indomethacin daily for 7 days. Yet one day after starting to take gabapentin (trade name "Neurontin" in the U.S.) at 1200 mg daily, he had complete pain relief, which persisted during the 6-month follow-up period.
David J.
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tanner
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Re: ok, me in a nutshell
« Reply #11 on: Dec 10th, 2002, 1:35am » |
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wow, david j you are way over my head but i'm gonna keep trying to learn. im positively going to talk to the doc,s about o2 tomorrow er today. as to the chemistry talk is that the same or is it found in L- trytophan? i was at one time on mass quantities of that but i thought at the time it was supposed to help with the no-sleep issue.
yes rick, from 99th and prospect. (beverly hills)
thanks all !!!
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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Ted
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Re: ok, me in a nutshell
« Reply #12 on: Dec 10th, 2002, 1:57am » |
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You may or may not belong here. Hopefully for you you don't. I suspect if you won't read things up for yourself and you allow what Wonderful Wino said as a way for you to determine that you don't want to read up on it, that it's not much pain and you're all good with it?
One thing is telling to all those who wonder if there are wannabes and groupies. Whether he's a clusterhead or not his answer to the question of if he is was something like "If it means I'd have to leave here, I am one." Do you all get it now a little better? Whether he is one or not?
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| « Last Edit: Dec 10th, 2002, 2:00am by Ted » |
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SommelierCH
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Re: ok, me in a nutshell
« Reply #13 on: Dec 10th, 2002, 2:25am » |
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Sorry Tim,
I meant to add that you should print it out and have it available for your Neuro visit tomorrow (of course without TELLING the Neuro what you have, just letting it flow into their brain). Because of the time crunch to get it to you, I didn’t synthesize it down.
The main points are:
1. You might have "hemicrania continua"
2. If you do, there are 3 drugs shown to help
a. indomethacin
b. celecoxib
c. gabapentin
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Re: ok, me in a nutshell
« Reply #14 on: Dec 10th, 2002, 2:57am » |
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Welcome aboard and sorry for whatever is clobbering you. The thing about CH is that it hits fast and hard and while it may not entirely leave, it's something one can usually handle. CH is strange in that when it subsides, it seems to suddenly disappear. Others here can tell you more.
That's quite a story and let us know how you make out.
Charlie
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tanner
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Re: ok, me in a nutshell
« Reply #15 on: Dec 10th, 2002, 3:05am » |
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david j.,
thanks for all the work you are putting into this! if the first drug is l-tryptophan i tried that one the first go round without effect. celebrex i only recently tried in california. it didn't help with the face but did make some joint problems temporarily better. unfortunately my liver doc hates the stuff and says no way! a friend in chicago just mentioned neurontin to me yesterday. actually she called her friend, a dr. young, head of rehab at rush pres-st lukes hospital and he told her about it. btw he's supposed to be a pretty good neurology guy if anyone is in that area.
tim
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OneEyeBlind
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Re: ok, me in a nutshell
« Reply #16 on: Dec 10th, 2002, 4:38am » |
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Tanner, wow, what a story !!! You are a survivor regarless of whether its clusters or not. Just an FYI - O2 and Imitrex are allowable even with end-stage liver disease and while being treated for HepC. The Imitrex is actually prescribed for the headaches that are a side effect of the meds for HepC. Good luck and keep us posted on how you make out !
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Mark C
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Re: ok, me in a nutshell
« Reply #17 on: Dec 10th, 2002, 7:20am » |
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Welcome Tim,
Thank you for sharing your story with us. I am sorry you need us, but glad you are here. Good luck with your treatment and let us know how it goes.
Mark
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Re: ok, me in a nutshell
« Reply #18 on: Dec 10th, 2002, 5:57pm » |
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Hi Tanner. Wow  , you've been through quite a mess. If you have hemicrania continua, what it does mean is that there may be highly effective and quite inexpensive meds that help you. I once remember Bob P posting something to the effect that more people here should give indomethacin (Indocin) a try (especially those who have CPH-like symptoms). Indomethacin is dirt cheap (I've tried it) and has fewer side effects than neurotonin, topomax, prednisone, etc for many people. There is nothing good about CH, it absolutely sucks. I wish I didn't have any reason to be here, but I do... and so I am.
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Azrael
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Re: ok, me in a nutshell
« Reply #19 on: Dec 11th, 2002, 11:25am » |
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tanner... HC and CH are kissing cousins... They are both TACs, and both have similar type of pain and symptoms. The primary differences are the length of the attacks. I'd say that if you were to be diagnosed with HC that you'd still belong, but that's just my opinion.
PFDAN...................................... Drk^Angel
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Re: ok, me in a nutshell
« Reply #20 on: Dec 11th, 2002, 11:36am » |
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on Dec 10th, 2002, 1:57am, Ted wrote:
One thing is telling to all those who wonder if there are wannabes and groupies. Whether he's a clusterhead or not his answer to the question of if he is was something like "If it means I'd have to leave here, I am one." Do you all get it now a little better? Whether he is one or not? |
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Did everyone SEE these words of Ted's? They speak volumes. Way to go, Mr. M. 
I, for one, sure hope he doesn't have clusters. I will never understand why anyone would WANT to have to deal with clusters in their lives -- is it so they can say they belong to a message board?
What did the neuro say?
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| « Last Edit: Dec 11th, 2002, 11:40am by Margi » |
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Re: ok, me in a nutshell
« Reply #21 on: Dec 11th, 2002, 12:11pm » |
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I interpreted it so that he doesn't want to "belong to a board", but has finally found a place among people who understand what he has to go trough. Kind of like finding a "home".
Nobody wants to be here, but (almost?) everyone is glad this place exists.
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| « Last Edit: Dec 11th, 2002, 12:12pm by Lapsi_Harmaahapsi » |
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Re: ok, me in a nutshell
« Reply #22 on: Dec 11th, 2002, 2:23pm » |
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thanks lapsi, my tounge in cheek comment had exactly that intent!!
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Re: ok, me in a nutshell
« Reply #23 on: Dec 13th, 2002, 9:04pm » |
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Hey Tanner we have 3 things in common... First the Migraine... I have those then the Meningitis I suffered from a case of Viral Meningitis that caused severe inflamation of my brain hence making my Migraine a different animal all together... It took me 6 months to walk straight... and feel as normal as I feel now. (not too normal) I am now a chronic sufferer of Excruciating Migraine... but a supporter of a ClusterHead (my hubby Dave) Third thing the Chesapeake bay I used to live on a peninsula on the Bay called Bowleys Quarters... Really beautiful there hot as Hell but beautiful... interesting story ya got there... longggggggg post I had to take intermission in the middle... welcome ree
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