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Title: Dr. Hates Me Post by DannyV on Sep 26th, 2007, 3:50am Verapamil used to make them go away. That stopped about 8 years ago. Since then I have tried MANY other possible prevents to no avail. For the last 6 years of seeing my last doc,[he retired] it was basically lots of verap still, Imitrex inj, O2, and [look out everybody] Oxycontin for pain. I know how a lot of you feel, but this doc was very sympathetic and I [after he introduced me to them] found them to be the only thing to give me a little peace in the world. No they did not eliminate the pain but they helped. After all the agony I go thru in my life, I feel I should have the option. He retired. New guy, who it took me a while to get in to. A Leading specialist in Boston,as was my old MD, took all my records and kept me on the pain mgmnt. He did try 2 other prevents with no luck. Now after one year, because there was marijuana in my urine, I admit to OCCASIONAL use for a stomach problem, he has put an immediate stop to the Oxycontin. I have been chronic for about 9 years now and I feel like Im being treated like a drug seeking junkie, when it was the doctors who put me on it in the first place. I have been on it for YEARS, OF COURSE I AM ADDICTED! Who's fault is that? I feel like I did in the bad old days of nothing but frozen peas to the skull while breaking my own nose as a distraction. He sent me to a pain clinic and they want no part of me. I feel like there has been some malpractice here because my life is worse than ever now. I feel discriminated against, just because my doc has no idea how to help me. They are labeling me an addict, and I have to spend the rest of my life with these CH's . If Im an addict, they made me one. Where is the justice for people like me? I know alot of you are going to slam me about the pain meds. Let me ask you this, if WE can't have access to them, that who the hell should? I've lived in agony long enough. Cold turkey for years before being properly diagnosed. My new doc now told me to either go to a detox, or find a new doc. I am being abandoned basically. Is this right with you folks? |
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Title: Re: Dr. Hates Me Post by chewy on Sep 26th, 2007, 7:50am Dont matter who its right with or who its not. Get another Doc. |
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Title: Re: Dr. Hates Me Post by vig on Sep 26th, 2007, 7:55am it was a mistake to go the Oxyconton route. Get off of it. you made yourself an addict, grow up and fix it. then get a new doctor. you're both wrong. |
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Title: Re: Dr. Hates Me Post by DannyV on Sep 26th, 2007, 8:20am Are you suggesting that my problem is that I am immature? I suppose I should resent that, but seeing as I know that all your comments come from places of care and concern, I will consider that option. Thanks. |
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Title: Re: Dr. Hates Me Post by chewy on Sep 26th, 2007, 8:21am on 09/26/07 at 07:55:58, vig wrote:
Exactly |
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Title: Re: Dr. Hates Me Post by ski2k on Sep 26th, 2007, 9:20am I personally can't bitch about the use of Oxy. I have always been hard to treat, and had never found any "prevent" that works for me. The only abortive I've found to work for me is O2, but that only works 60-70% of the time. The rest of the time it's either put up with the pain, or use Stadol nasal spray. Like you said, it doesn't take the pain away, just helps to mask it a little. I, too, have become dependant on it in the past, and had to detox after every cycle since I started using it. I feel bad you don't have that option to stop after each cycle, since you're chronic. I know it's rough, but detoxing from it might actually help some. Most of the narcotic pain killers (from what I've read) CAN cause rebounds. Having said all that, I now have found something to kick the beasts ass..... I've been using one of the clusterbuster treatments, RC seeds. I NEVER thought I would find anything to help prevent the CH's I was getting, but wow!!! This treatment has been amazing! If you haven't tried one of the "busters", I would highly reccommend trying one. What have you got to lose?!?! Sounds to me like your doc has already given up on you (which has laso happened to me). Whatever you decide to do, I sincerly hope you can find some relief. Hang in there, and keep us posted. Adam |
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Title: Re: Dr. Hates Me Post by Charlotte on Sep 26th, 2007, 9:25am When I came to the board, I also had a Dr who hated me. He wouldn't help me at all with ch and told me I had migraines and wouldn't have a problem if I did what he told me. First advice from the board was "Get a new doc". Best advice I ever took. Charlotte |
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Title: Re: Dr. Hates Me Post by nani on Sep 26th, 2007, 9:31am Yup, get a new doc. Yup, man up and get off the oxy, it's counterproductive. Yup, look at new meds or alternatives. Clusterbusters, kudzu, energy drinks... Good luck, Danny. pf wishes, nani |
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Title: Re: Dr. Hates Me Post by Ray on Sep 26th, 2007, 1:00pm Danny: In the days before Triptans and effective use of O2, in one year, I went for over 200 visits to my family practice MD for Nubaine or Demerol injections. This was AFTER the stadol, oxycontin, mscontin, roxinol, dilaudid, etc did not work. Then the Dr's office changed their policy, after a break in where narcs were stolen, and I could no longer receive narcs. I did NOT go through withdrawl, and the CH decreased in number, but did not go away. It sucks, but it's true. You need to get off of that narcotic, and find a new doctor. I feel for you, been there and done that, and come out the other side. Best wishes for a PF life, Ray |
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Title: Re: Dr. Hates Me Post by DannyV on Sep 26th, 2007, 1:46pm It is unfortunate that my quality of life has turned out worse after almost 20 years of following strict medical advice basically to the tee. What is all this I am hearing about Imitrex and verapamil being a long term no-no? I take [prescribed] 60 injections a month and verap 240 3x aday. For 10years almost. I'm in agony. I think it is because the docs ,even though they say they understand, could not possibly believe how UNBARABLE the attacks really are. I mean, my right eye, at the peak, looks like someone stuck a pool cue in there about 6 inches. BLOOD RED. What else causes that kind of eye trauma? Severe head trauma. Head caved in maybe. But then thet see us get up and walk away when it's over and figure, "You seem fine now' 'CANT BE THAT BAD". I dream of a court case one day where we can fight for rights. |
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Title: Re: Dr. Hates Me Post by nani on Sep 26th, 2007, 1:58pm on 09/26/07 at 13:46:28, DannyV wrote:
Then maybe it's time to look at something altogether different. Both kudzu and psilocybin have been used in addiction recovery studies, and have shown to be helpful. Kinda ironic in a way. Read all this: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 Then, read all this: www.clusterbusters.com I kid you not, bro...they are both worth considering. hugs, nani |
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Title: Re: Dr. Hates Me Post by chewy on Sep 26th, 2007, 2:03pm Quote:
You just answered your own question. |
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Title: Re: Dr. Hates Me Post by Guiseppi on Sep 26th, 2007, 2:27pm Most of us have been at or close to where you are now. It hurts, it sucks, nothing is working. You don't sound like the "I can't take it so I'm gonna end it" type, which, considering what you're currently going thru, is a credit to you. You'll get a lot of fast/negative reaction to the narcotic route because they really don't work. By "work" I mean give you back any kind of quality of life. Please take the time to read the links Nani gave you. I haven't personally gone either of those routes as my current regimen works, but many have and post of their successes. Good luck to you, bottom line is we DO understand how bad it hurts, we all go there too, stick with us, try our routes, you certainly have nothing to lose at this point. Really hoping you get some relief soon. Guiseppi |
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Title: Re: Dr. Hates Me Post by Linda_Howell on Sep 26th, 2007, 2:33pm Starting with this that you said: Quote:
I hope that what I will now say will be taken in that spirit. The narcotics that you've taken have done no good and from what you say, it is obvious to anyone that this is a huge part of the problem in getting help. I am known around these parts for my anti-narcotic stance in regards to CH and this is exactly why. Addiction. Narcotics have their place for pain in a limited capacity and for short term use such as after major surgery...they have no place in treating on-going, chronic CH Linda, who is saying this with care and concern. |
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Title: Re: Dr. Hates Me Post by DannyV on Sep 26th, 2007, 5:21pm I guess this is a long term debate in some parts of this site. However Linda, for you to say matter of factly, that narcotics have no place in treating ongoing chronic Ch, I would then ask you, what is the patients option[besides surgery][which I have considered] when currently, all else seems to be failing. The argument that the pain is so severe that strong pain killers do not do enough so why bother giving them is, to me, preposterous. Here we have what is known as the most painful condition known to man. This person has not responded well to many treatments. Until,he finds something that helps, should he not have the option? It's MY life. I am a fully grown 300 pound man. I am not a criminal. I am in absolute misery . Medicine is supposed to at least try to prevent suffering if it has the means. I feel that as long as the diagnosis is agreed upon by one or more specialists and the person is TRULY Chronic Intractable CH, than until you fix him, you are responsible to try and treat his or her pain. |
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Title: Re: Dr. Hates Me Post by mollybo on Sep 26th, 2007, 7:11pm I am on 10 mg Oxycontin and have been for three or four years, predating the cluster headaches by years. I am fairly sure it's what has kept them bearable - I've had ONE at a kip7 and the worst are usually a kip6. Now the Oxycontin is for an unrelated condition. The condition at times goes into remission and I stop taking the oxy with no withdrawal whatsoever. Now, I see people's point. I have a chronic pain condition that is a relatively fixed level of pain 24 hours a day; that's a condition oxy is made for. I am unsure if the addiction potential is higher for non-constant pain such as in cluster headaches. However, I get a little tired of reading over and over that narcotics don't work. I'm proof that they probably do. |
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Title: Re: Dr. Hates Me Post by assaultme on Sep 26th, 2007, 8:09pm Danny: I guarantee you the opiates did not help me when I first got CH. At the time, neither me or my family Doc. were sure it was CH. So we tried some baby aspirin (vicodin) and because of the nature of how Ch works, it did not help. I certainly understand your anguish. Even though I got lucky and my Ch is under control, the first few weeks were so bad, I thought I would die. You gotta do what you gotta do, no one can fault you for that. CH is scary, extremely painful and can make a guy think he is going crazy. I will, however, share with you my experience with opiates. I got badly addicted to them. It too started out innocently with back pain. Vicodin, then oxycontin, then morphine. I wont lie, before I quit, I was getting them like Rush Limbaugh...on my own accord. Quitting can be SOOOO difficult. You get sick to your stomach, depressed and I wont go into the un-pleasentrys of how it WILL mess with your digestive tract. The danger is how different people have different abilities to quit opiates. What I mean is, some people like myself CAN and DO quit by themselves without ever letting the addiction destroy their lives. Bad news is, because of differing physiologies or people, some cannot quit. This is fact, not a cop-out !! Some people just have lesser ability to resist the drugs alure. Now, that doesn't mean they get a pass...NO!!! In the end it is still the individuals responsibility to quit. No one can do it for them. But I'm just trying to give warning. Telling you to man-up or quit being a cry baby is not my style. People have problems and life is not that easy to solve problems with pithy little phrases. But I will warn you that opiates can be very addictive and cause more problems on top of what you already have. I damn sure sympathize with your problem. After having met some of the fine people here who are chronic with little relief, I have become both saddened and frustrated that I can do absolutely nothing to help them. I just hope you understand how opiates can affect you adversly. I just thought of a few more things. The estimate I got was that some 2 million Americans are addicted to Doctor-prescribed opiates. I believe most all Docs. have good intentions. When they cant find a solution to peoples pain, they are often forced to prescribe opiates. I know people personally who have severe back problems that apparently cant be fixed with surgery. So, they are on pain pills. You ask: "Whose fault is it" Truthfully, you share blame for staying addicted. The Docs. can only do what they can do, but you have to quit on your own if things are out of control. Nothing I have told you will help your pain or solve your problem. But I hope my experience will help you to better understand the perils of opiate addiction. Here is something else...Nani gives good advise. There are other things to try that have worked for others. One thing I can guarantee you is that the good people here will always try their best to help you out. Cheers, Dave |
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Title: Re: Dr. Hates Me Post by DannyV on Sep 26th, 2007, 8:35pm Thanks alot for your thoughtfully put forth ideas. And sharing your intimate story. I pose a question: If 10 million americans are being perscribed oxycontin for long term pain? How many of you think that 90 percent of them probably could not even imagine the level of pain that is CH? This is a very widely perscribed pain killer. Helpful to many. Next for me looks like Suboxone. To replace the Oxy and prevent sickness. I hear that it does nothing for real pain. Im gonna look into the seeds too. Thanks everyone.-Danny |
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Title: Re: Dr. Hates Me Post by chewy on Sep 26th, 2007, 10:13pm on 09/26/07 at 20:35:08, DannyV wrote:
Good choice and very wise decision |
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Title: Re: Dr. Hates Me Post by phil_h on Sep 27th, 2007, 12:40am Fire the doc ! I've had 6 or 7 mds that hated me and my incurable condition........... fire the doc ... find a new doc and educate him the materials from this site.........after 2 tries I found a doc still teachable................... Siboxin would be a correct therapuetic recommendation for oxy withdrawal ... the only pain it will help with , is the pain of opiate withdrawal................. You need a doc certified in siboxin protocal.......... Good luck... Don't give up.... phil h |
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