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Title: Help for Chronic friend... PLEASE Post by Peppermint on Jun 24th, 2003, 6:12am :-[ 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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Title: Re: Help for Chronic friend... PLEASE Post by don on Jun 24th, 2003, 6:22am Quote:
What he needs to do is get another Doc. Period. Quote:
If he knows it, why doesn't his Doc know it? |
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Title: Re: Help for Chronic friend... PLEASE Post by mazmatic on Jun 24th, 2003, 6:40am 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: ------------------------------------- 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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Title: Re: Help for Chronic friend... PLEASE Post by cbolony on Jun 24th, 2003, 7:44am Check your email |
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Title: Re: Help for Chronic friend... PLEASE Post by Bob_Johnson on Jun 24th, 2003, 7:44am 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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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 24th, 2003, 7:48am 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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Title: Re: Help for Chronic friend... PLEASE Post by Jackie on Jun 24th, 2003, 7:52am Pep... If I'm the Jax you were talking to you have mail and an IM... Jacks 8) |
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Title: Re: Help for Chronic friend... PLEASE Post by don on Jun 24th, 2003, 8:00am Quote:
Who is this guy, a Haitian VOOdoo Doc? Post his name as a warning. |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 24th, 2003, 8:36am on 06/24/03 at 07:52:32, Jackie wrote:
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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Title: Re: Help for Chronic friend... PLEASE Post by Jackie on Jun 24th, 2003, 8:54am 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 8) |
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Title: Re: Help for Chronic friend... PLEASE Post by Big_Dan on Jun 24th, 2003, 9:02am ... 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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Title: Re: Help for Chronic friend... PLEASE Post by Roxy on Jun 24th, 2003, 10:25am 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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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 24th, 2003, 10:33am 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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Title: Re: Help for Chronic friend... PLEASE Post by oringkid on Jun 24th, 2003, 10:41am 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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Title: Re: Help for Chronic friend... PLEASE Post by Mastifflvr28 on Jun 24th, 2003, 12:09pm 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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Title: Re: Help for Chronic friend... PLEASE Post by cootie on Jun 24th, 2003, 12:29pm 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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Title: Re: Help for Chronic friend... PLEASE Post by suzy617 on Jun 24th, 2003, 7:42pm 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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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 24th, 2003, 8:09pm 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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Title: Re: Help for Chronic friend... PLEASE Post by Ree on Jun 24th, 2003, 10:32pm 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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Title: Re: Help for Chronic friend... PLEASE Post by andy on Jun 24th, 2003, 10:44pm 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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Title: Re: Help for Chronic friend... PLEASE Post by Marc on Jun 25th, 2003, 1:13am 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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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 25th, 2003, 7:26am 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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Title: Re: Help for Chronic friend... PLEASE Post by mazmatic on Jun 25th, 2003, 8:07am 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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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 25th, 2003, 9:09am 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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Title: Re: Help for Chronic friend... PLEASE Post by Roxy on Jun 25th, 2003, 9:11am I'm here Peppi......just now reread the thread.....phone call coming!!! |
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Title: Re: Help for Chronic friend... PLEASE Post by mazmatic on Jun 25th, 2003, 9:28am Hi Peppermint, I am a very new cluster head and only just found this site. I am on day 20 of my first ever episode and it has been scary. None of the drugs I have tried yet work but tomorrow I go on Verapamil so here's hoping. My email is mary@web-thing.co.uk and I live in Edinburgh, Scotland. I'll fill out more on my profile just haven't got to it yet - not trying to be mysterious! Offer to post you Maxalt is sincere, just email your address and I'll send it. Its 10mg btw, is that enough does for your friend? Maz (Mary Jamieson) |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 25th, 2003, 9:35am Maz... thank you for the response. But read your IM. |
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Title: Re: Help for Chronic friend... PLEASE Post by mazmatic on Jun 25th, 2003, 9:36am IM ? |
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Title: Re: Help for Chronic friend... PLEASE Post by mazmatic on Jun 25th, 2003, 9:38am sorry - i got it.. |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 25th, 2003, 8:40pm Ok... checking in. You guys don't just ROCK, you are a rock. THanks. Got lots of good pointers and I have given every single one... its amazing everything I can remember for other people, but in the middle of this all, I feel like I've got what Cat calls some-heimer's- Only remember some of the time. I've written it all down now.. ::) My Angel, as I refer to him on this board, is still not great, but he's surviving. Imitrex nasal seems to have worked great for him, tho he only had 1 left. He missed his appt. today because... he was getting hit. That sucks big ones. :( Dramamine will hopefully give some rest tonight, cold a/c air, cool-ified 02, strong blast of black coffee, hot bath, propped up sleeping - he asked if he should put on a three-piece suit while he's at it...it was a JOKE. :o but he scared the crap outta me for a sec until I heard a snicker. ??? duhhhhhhhhhhh You'd like to hear this.... he says, he feels giddy, cuz he feels like a survivor, so that is a good thing. One hit at a time. I told him all that everyone has done and said, and he Thanks you truly. The attacks are now still strong but longer. They basically took up the whole day, with breaks in between (about four during the day up till this early this evening). The beast Cannot take down a clusterhead, especially with his brothers and sisters coming to arms..... thanks for rowing so mightily, from the bottom of my heart. :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* Love, Pepper |
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Title: Re: Help for Chronic friend... PLEASE Post by Charlie on Jun 25th, 2003, 8:59pm Sorry for you and friend. Have him tell this doctor that he understands that he may be reluctant to diagnose this horror and that you know it’s likely to be frustrating for him. Also, have him ask the doctor to sign off on trying some of the ideas and meds here. It's important to coddle these doctors. They need to feel that they are in charge. They hate it when patients come in with more info than the sawbones. Let the doc help if possible. They really hate this disease as they know they there isn't a magic bullet. Simon's letter would probably help too. Charlie |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 26th, 2003, 10:32am Thanks for the reminder Charlie. I forgot to send that to him ::) Since he missed his appt. he'll have another opportunity. |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 27th, 2003, 10:49am Update - Jacks... he's back on the Pred... damn doc gave him generic SR verap. >:( Cross your fingers, hopefully he's in with the new doc by Monday. I of course am nagging at him to call him back and push the doc for IR. I think I'm getting obnoxious now. ::) At least he's got a few maxalts for now though and the 02 seems to be working a little better. The dramamine didn't work though. Maybe he didn't take enough? Charlie, is this Simon's letter? http://www.clusterheadaches.org/resources/employer_form.doc I tried looking it up on my own because I lost the link you gave me; if anyone knows please post it, I think this is not the right one. Its been a hectic week so I am having trouble keeping track of things. Sorry Charlie. (hey, that's kinda funny) Also, questions about the non-rebreather mask & 02... If you are using that, and then breathing back into it, aren't you filling the bag again with your own C02 because it has nowhere else to go? I don't know how it works, but that is the question. Also, is it ok to put ice in a bubbler (well is there enough room for it? ) That's all for now.. sorry I feel like a pain already. |
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Title: Re: Help for Chronic friend... PLEASE Post by Brian_Y on Jun 27th, 2003, 11:04am My understading was that the "bag" was like a staging area for the O2 as it came into the mask. The holes in the mask are for exhalation. At least that is how mine appear to work if I recall corectly. Can anyone verify this? |
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Title: Re: Help for Chronic friend... PLEASE Post by Jackie on Jun 27th, 2003, 11:14am Sounds good, Pep.... At least he's on the prednisone and maybe the verapamil (if the dose is high enough) will kick in before the next taper. Did he give him anything else to comb with the verapamil...like maybe some lithium. Don't worry about the generic...should be fine and the SR might just work too. Was he able to get a script for Zomig? As to the mask...it's fine to put ice in the bubbler. We have put Blake's line in a tub of ice water...seems the "cooled 02" has a little better kick for him and it's also soothing. The non-rebreather mask is right...it's just very important that he gets on it at the first sign of trouble....don't wait to long!! Jacks 8) |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 27th, 2003, 11:57am Brian, thank you, that's what I think too, but don't you rebreath your own exhaled air? I don't quite understand.... :-[ Jackie, no Zomig, only some Maxalts for now. I think he was out of it and forgot to pound the doc or didn't have the energy... I dunno. I forgot to ask him myself if he got a new Lith script but I did drill him with the info you gave me. The Verap he was told to take 240 (way too low) but he will increase it if it doesn't work well enough. Hard to tell while on Prednisone. Can anyone please post the link for Simon's letter??? |
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Title: Re: Help for Chronic friend... PLEASE Post by Marc on Jun 27th, 2003, 12:38pm Pep - The link I sent you was for the MSWord version, I've also got it in pdf format if you would like..... Marc |
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Title: Re: Help for Chronic friend... PLEASE Post by Not4Hire on Jun 27th, 2003, 1:31pm Pep.... the NONrebreather mask is designed with *valves* --in the form of One-Way diaphragms or *little flappers* (technical term) that allow 100% o2 to enter the mask from the tank --the mask over the face concentrates the o2 for breathing-- then, the *LF's* on the sides of the mask open when you exhale, allowing the CO2 and ClusterBreath(tm) to escape-- the Happy o2 then fills the mask again for the next breath, and the cycle goes on until the MOFO gags and takes a hike..... Bryan is correct: the bag is just to keep a volume of o2 ready to fill your lungs for the next breath... the intake *LF* closes when you exhale, keeping the bag charged with 100% o2... OR.... it's Just Magic.....i dunno.... ;) |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 27th, 2003, 2:43pm on 06/27/03 at 13:31:08, Not4Hire wrote:
to use one of your lines.... HELLIFINO... I've never used one before. ;) Thanks broki. Something is amiss in his use of 02 here... I will have to 'splain to Loosi. Marc - Word format is just fine, thanks for sending it. You guys are great ! (Does it sound like I'm sucking up cuz I'm really not :) ) |
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Title: Re: Help for Chronic friend... PLEASE Post by Jackie on Jun 27th, 2003, 3:18pm Pep.... One more thing.... Tell him to EAT even if he has to force himself. Blake seems to get hit harder when he's "off feed". Jacks 8) |
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Title: Re: Help for Chronic friend... PLEASE Post by Peppermint on Jun 27th, 2003, 3:23pm Yup Jacks!!! I remember you saying this once... yes you... and Margi (thank you Margi - you have helped more than you know) and he's at least having bran flakes.. bleaggghh. :P But at least that's something healthy. |
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