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Peppermint
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Help for Chronic friend... PLEASE
« on: Jun 24th, 2003, 6:12am » |
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Lots of you know how I found my way to this website. My friend is a chronic clusterhead.
He is suffering a great deal right now, the damn doctor he's seeing put him on pred, and he's tapered off (while taking depatoke which is not working  ) and he is getting slammed but HARD. About two weeks now, nearing the end of that flaming rope and there's nothing I can do from here to help him except post here and try to figure out what to do next. He gets hit at least 10x a day, the 02 isn't really helping and he's taking a medley of abortives he's gotten haphazardly. .. maxalts, imitrex nasal sprays, amerge.
He does not sound good. 
A few questions:
1. I need to figure out a way to make him make his doc listen to him. Right now he's in transition to a better doc, but until then (about another week) its clear he needs to go back on the verap and at a much higher dose (it stopped working at 240- miracle it barely worked then). I think he's too timid to be really aggressive with his doctor and he's afraid also that it will alienate/anger him and stop him from getting what he needs. In his experience, that would be Verp at at least 480, and imitrex shots for those times he needs to abort when 02 doesn't work. The trex pills take too long to work.
2. He's considering a DHE treatment. I've seen people here do drip & I think the pill form if I'm not mistaken. Does one work better than the other?
3. Does anyone have any connection with Dr. Dodick? He's been recommended to him indirectly by a highly esteemed colleague, trying to get on the fast track for the stimulator procedure if possible. It just seems that everything has been dragged out over the past couple of months. At this point, I'm afraid of what will happen.
Right now, another clusterbud from here he finally met is helping him cope (thank you so much, hugs to you). But he is so fragile, its like walking on eggshells. Melatonin only worked for a short while for sleep. Besides the dramamine, is there anything else that might be helpful for sleep?
gosh, I hate to go on and on here, it just seems like such an desperate situation... I hate to know he's suffering so badly... he sounded ..
ok, i'll be back later, I am late for work now
p.s. Jax if you're out there, I'd like to ask you the how's... email peppermint2867@hotmail.com
My othe mailbox may be full. - love Goofy
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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don
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Re: Help for Chronic friend... PLEASE
« Reply #1 on: Jun 24th, 2003, 6:22am » |
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Quote:| I need to figure out a way to make him make his doc listen to him. |
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What he needs to do is get another Doc. Period.
Quote:| In his experience, that would be Verp at at least 480, and imitrex shots for those times he needs to abort when 02 doesn't work. |
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If he knows it, why doesn't his Doc know it?
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| « Last Edit: Jun 24th, 2003, 6:24am by don » |
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mazmatic
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Re: Help for Chronic friend... PLEASE
« Reply #2 on: Jun 24th, 2003, 6:40am » |
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I find the only way I can comminicate with the doctor when things are really bad is to write a diary, here is one of my days as an example - I just go into the doc and give them a print out, and with this one there were tears too for the poor locum GP to mop up:
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Mon 16 - Tuesday 17 June
Symptoms almost constant with very little relief from prescribed painkillers. All symptoms began 99.5% left side, tonight (Mon to Tues) more like 75/25 left/right.
· Burning and/or tingling sensation on face and ear skin, tingling on genital area.
· Visual disturbances (not usually coinciding with pain), several a day
· Very short, very sharp, stabbing electric-shock type pains mainly in and around eye but also (in order of prevalence):
- back and top of head
- nose
- angle of jaw
- back of throat (where left tonsil used to be)
- soles of feet
- palms of hands
- outer labia and genital area
- abdomen
· Similar types of stabbing pains but shorter and less intense all over body e.g. sides of neck, under arms.
· Nausea – releived by use of anti-nausea pills prescribed
· Occasional throbbing type headache in small areas of left head e.g. temple
· ‘Pinching’ type pains around head make me apply pressure to relieve but then it seems to pop up elsewhere
· Pain seems to crawl over surface of face, scalp, eyes, ears
· I can ‘feel’ my left eye under it’s lid like the surface is rough and it is bloodshot
Sleeping/lying down/closing eyes does not help. I feel better up and trying to take my mind off the pain. I am up all night and unable to sleep until Tuesday afternoon when the migraine spider finally moves it’s painful self off my left eyeball.
.. This earned me my recent cluster diagnosis, along with diaries of the other days and pains. The doctors are now taking me seriously and trying to help in whatever way they can.
Hope it helps..
All the best
Maz
PS I find if I cannot describe my pains then typing them into google can give me better words for them - imagine my delight to discover that I could call my stabbing pains Tic Douloureux..
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cbolony
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Re: Help for Chronic friend... PLEASE
« Reply #3 on: Jun 24th, 2003, 7:44am » |
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Check your email
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Bob_Johnson
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Re: Help for Chronic friend... PLEASE
« Reply #4 on: Jun 24th, 2003, 7:44am » |
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He needs a systematic approach to treatment. High recommend this book which, because it's aimed at physicians, should help with the communication problem.
--------------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...." [In archives.]
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Bob Johnson
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #5 on: Jun 24th, 2003, 7:48am » |
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Don
I SAID that he is in the process of moving on to another doc - there is an insurance situation/delay so that is the problem.
He is 95% sure that what I said will work (verap and imitrex shots), however seeing that his doctor is a FUCKING ASSWIPE MORON who was okay with recommending him for gamma knife surgery but not the above, I don't think the doctor will KNOW that either.
I personally think the doc needs a kick in the ass, in the least, I'm just trying to figure out how do that without making things worse for him, until he is able to get to the new doc. 
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Jackie
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Re: Help for Chronic friend... PLEASE
« Reply #6 on: Jun 24th, 2003, 7:52am » |
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Pep...
If I'm the Jax you were talking to you have mail and an IM...
Jacks 
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don
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Re: Help for Chronic friend... PLEASE
« Reply #7 on: Jun 24th, 2003, 8:00am » |
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Quote:| was okay with recommending him for gamma knife surgery |
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Who is this guy, a Haitian VOOdoo Doc?
Post his name as a warning.
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #8 on: Jun 24th, 2003, 8:36am » |
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on Jun 24th, 2003, 7:52am, Jackie wrote:Pep...
If I'm the Jax you were talking to you have mail and an IM...
Jacks |
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What OTHER Jax IS there ??? 
Thanks for the phone call - I'm gonna 'go for it' now. And thanks pulling me up too.
Hugs, Pepp
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Jackie
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Re: Help for Chronic friend... PLEASE
« Reply #9 on: Jun 24th, 2003, 8:54am » |
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Hey 'Goofy'...
Happy to help.....let me know if I can do anything else for you.
Now...you better stay "pulled up"......or the next phase is a kick in the ass... ;D
Hugs,
Jacks
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Big Dan
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Re: Help for Chronic friend... PLEASE
« Reply #10 on: Jun 24th, 2003, 9:02am » |
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... wish there was some insider information I could supply you with, Mint, but I don't have any....
... I just know they fuckin' hurt, and I pray you're friend has PFDAN's as soon as possible...
-Big Dan
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Not going anywhere for a while?...
... Grab a Snickers, Fatass.
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Roxy
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Re: Help for Chronic friend... PLEASE
« Reply #11 on: Jun 24th, 2003, 10:25am » |
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Pep,
Does he still have a script for the verap? He can up it himself until he gets in with the new Dr. That's what I did, and I know other people have done the same. If he can't get the verap......let me know.
Tracey
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #12 on: Jun 24th, 2003, 10:33am » |
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Rox, thanks.
I don't think he has a verap script left over, I will double check with him, if he ever picks up the phone.. 
God, I think he could use some of that b*tchcraft on that doc right about now. ...Patience is NOT a virtue in this case.
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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oringkid
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Re: Help for Chronic friend... PLEASE
« Reply #13 on: Jun 24th, 2003, 10:41am » |
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Pep, you say he has at least 10 a day? Has he ever tried Indomethiacin? Could it be CPH? Are they shorter duration than most? Might be worth checking into?
Sherry
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Mastifflvr28
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Re: Help for Chronic friend... PLEASE
« Reply #14 on: Jun 24th, 2003, 12:09pm » |
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My thoughts exactly Sherry,
A script of indo is fairly benign (except for your guts) to at least see if it'll work.
Good luck Peppi, and to your Angel
Besides shrooms, it's the only thing I can suggest.
Mast
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Mastifflvr28 (aka Michelle A.)
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cootie
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Re: Help for Chronic friend... PLEASE
« Reply #15 on: Jun 24th, 2003, 12:29pm » |
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Sorry to hear sumone is hurting so bad.....sounds like he's in good hands....keep up the good work girls ! Hope things get better fast....I'll send some 'get a better doc' vibe.....Pam that hates dealin with dick head docs
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suzy617
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Re: Help for Chronic friend... PLEASE
« Reply #16 on: Jun 24th, 2003, 7:42pm » |
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Wish I could offer some help Pep but I am far from an expert on meds. Just would like to wish him luck and WTG girl for being right there for him.
Suzy
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #17 on: Jun 24th, 2003, 8:09pm » |
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Hey thanks everybody.
Jackie, feel free to kick me in the ass as needed.
Sherry & Mast, I know what you are getting at and I knew someone would say that. However, this has only been the case for since about last Thursday. There is just clearly a difference, from his normal hits - usually its not this many hits. Its just like right now, coming off the prednisone with NO meds that work, the attacks are back in double time.
I did just speak with him.
KOP - please get in touch with me if you are around.
Tracey - I need to speak with you asap.
One last thing. Maxalt will work but HE IS OUT OF THEM NOW. Also...He does not have any more verapimil scripts left.
Thank you all who responded in every way, I love you guys, you don't have any idea the lifeline you all are.
See you later.
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Ree
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Re: Help for Chronic friend... PLEASE
« Reply #18 on: Jun 24th, 2003, 10:32pm » |
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Hang in there Pepperdoodle you are doing a great job... and you are a great supporter to your friend...
Prayers for you guys tonight I'm off like a prom dress... did I say that............night love ya ree
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andy
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Re: Help for Chronic friend... PLEASE
« Reply #19 on: Jun 24th, 2003, 10:44pm » |
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Hey Patty, tell your friend that we are all rowing extra hard for him. Vibes being sent now. All you supporters are the greatest!! ...........andy
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Marc
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Re: Help for Chronic friend... PLEASE
« Reply #20 on: Jun 25th, 2003, 1:13am » |
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Patty,
I'd still suggest that he try Indocin. Yes, I saw your response to Sherry and Mast, but I agree with them.
Even if the big increase in hits/day is only recent, it's worth a try. What's he got to lose?
Marc
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #21 on: Jun 25th, 2003, 7:26am » |
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Marc, Mast, Sherry - yes,you're right what's he got to lose ???
I'll suggest that to him today (the Indocin), hopefully before he gets in to see the doc, IF he is able to push his way in.
You know what? Before last night, he didn't know what CPH was. I was pretty shocked to find that out. If you hadn't mentioned it, he still wouldn't know.
I hope I gave him enough attitude to go in there and be agressive with his doc.
Tracey & KOP... where are you??? 
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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mazmatic
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Re: Help for Chronic friend... PLEASE
« Reply #22 on: Jun 25th, 2003, 8:07am » |
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You say Maxalt works for your friend - I have maxalt that does nothing for me x 4 sachets that I would post to you but I'm in Scotland and you may be too far away for this to be of any real help..
truly,
maz
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Peppermint
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Re: Help for Chronic friend... PLEASE
« Reply #23 on: Jun 25th, 2003, 9:09am » |
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Mazmatic,
That's a generous offer on your part. What's your email? And are you a clusterhead? I only see 2 posts of yours and the first one is a little vague. Not being nasty, just ... wondering.....???
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Roxy
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Re: Help for Chronic friend... PLEASE
« Reply #24 on: Jun 25th, 2003, 9:11am » |
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I'm here Peppi......just now reread the thread.....phone call coming!!!
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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