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Title: New to the site Post by Curley on Jul 22nd, 2004, 7:24pm Hello Folks, I am new to this site and to the message board "world" in general. This is the first post I have ever done to any site so I hope I am doing this correctly. I finally got myself a home computer and I knew this would be the first place I would come. Anyway....My name is Mark, I am 35 years old, and I live in Boston. I have been suffering with these cluster headaches for almost 20 years. In retrospect, I don't know how I survived my early twenties when my cycles were almost every three months, but after reading some of your stories I almost feel blessed. My God...my heart breaks for you. Althou the last couple of years have been wonderful, in that I have only had to endure one cycle per year(generally 3 months late summer into fall), I am currently in one of the worst cycles I can ever remember. It has been going strong, 3x daily, for two months now. I am walking around like a zombie and am ready to check myself into a hospital. I feel helpless, afraid, anxious, exhausted. I am so thrilled to be able to do this and talk to some people who "get it". I could go on for days about my history and the drugs I have tried, but I do have a couple of quick questions I was hoping to get some of your thoughts on. Generally I have been fortunate in that I could abort some of my headaches with excedrin, but as always, the excedrin stops working after a few weeks and I'm left to ride them out or try a new abortive drug. I have tried just about everything with some luck but not for long. Currently I am taking Maxalt with some success(which they tell me can only be used a couple times a week) for abortive treatment and my Neurologist wants me to try Lithium for preventative. I was hesitant at first because I am so nervous about side effects but I'm desperate for help and have started the Lithium this morning. Looks like I will work my way up to 900 mg a day. I have read that Lithium has showed some real success in treating chronic cluster but I don't know about episodic. Any thoughts would be appreciated. Secondly..as if this torturous syndrome was'nt bad enough, I was recently diagnosed with MS. I lost vision in my right eye and I'm walking around like I have fifty pound weights on my legs. I am injecting Rebif to slow the progression. Althou my Neurologist tells me that there is no connection, I was curious if anyone knew of some statistics on this. Does anyone out there suffer from both like I do? Any information or thoughts would be appreciated. I look forward to your replys . My sincere thanks in advance. Mark |
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Title: Re: New to the site Post by don on Jul 22nd, 2004, 8:01pm Quote:
No comment. I see a great neuro down in Norwood if you are interested. |
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Title: Re: New to the site Post by Kris_in_SJ on Jul 22nd, 2004, 8:23pm Hi Mark, Wow! I'm sure sorry you have to be here, and that you have been give a double whammy, or curse, or whatever you want to call it. You'll find alot of support here, though I certainly can't answer your questions. I'm sure someone will come along who can. As far as abortives, I've never heard of Excedrin aborting anything! O2, Imitrex, Zomig, etc. are usually choice for most. You might want to take Don up on his offer ... a second or third opinion can't hurt. Keep us informed. Hugs and best wishes, Kris |
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Title: Re: New to the site Post by Tim_Z on Jul 22nd, 2004, 11:54pm Welcome Curley, I have never used a preventive that did anything for me, still looking for the right combination. So I feel unqualified to recommend meds to you. Trex is my abortive, works every time. Anyway look around and ask some people around here what they think. Lots of info. Hang in there, Tim |
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Title: Re: New to the site Post by Gator on Jul 23rd, 2004, 3:05am Quote:
Okay Don, if you won't do it... Mark, to put it oh so much more mildly than a lot of others would - excedrin don't do shit for ch. For the most part, pain killers do not make a dent in CH pain, let alone abort it. Personally, I have taken Percocet, Demerol and Oxycontin along with various combinations of the otc stuff with no relief. There is also the problem with rebound pain associated with pain killers. In general, people with ch stay away from them. Many people find relief with Topamax, Lithium, Verapamil, Depakote and others. There are a few people for whom the preventatives just do not work. I took Lithium up tp 1200mg - did nothing for me, but then none of the regular preventatives did anything for me. I am currently on a 480mg verapamil/900mg lithium combo, but so far, that isn't working either. As far as abortives, 100% Oxygen @10 - 15 lpm via a non-rebreathing mask for 10-20 minutes works about 70% of the time for a lot of people. When O2 does not work, Imitrex Injections and to a lesser extent, Imitrex Nasal Spray work for a lot of people. Zomig Nasal Spray works about 95+% withing 5 - 7 minutes for me. Pills of any kind are not really an effective abortive, because of the time they take to get into the system and start working. There are several people here that have MS-like symptoms, but have not been diagnosed and maybe some that actually have MS. If they see this, they might be able to answer your questions there. Just for gee golly whiz, why don't you run down your general symptoms, pain locations, pain levels, duration of pain along with some of the prescription meds you have tried. One of the best things you can do for yourself is to read all that is available in the links to the left and on the OUCH website. With the lack of knowledge in the medical community about ch, you really need to be well read and take an active role in your treatment. Also, read the following about different abortive, transitional, preventative and surgical treatment options: http://www.future-drugs.com/admin/articlefile/ERN020304.pdf Gator |
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Title: Re: New to the site Post by floridian on Jul 23rd, 2004, 10:28am Hey, Mark, welcome to clusterville. There is some evidence of a possible (indirect) link between clusters and MS - both involve particular types of inflammation, increased nitric oxide, and increased inflammitory cytokines (interleukins, tnf, etc). Some people here have reported improvement in their clusters from taking cox2 inhibitors (like vioxx, celebrex). There is a thread somewhere here started by Athos - he might have MS and is going for a MRI soon. I discussed some of this, and some nutritional therapies for MS there (bromelain, curcumin, low fat diet, etc). Also look for a thread about VIOXX. |
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Title: Re: New to the site Post by Curley on Jul 23rd, 2004, 4:37pm I have read your replies to my original posting and immediately felt a need to write back and clarify a few things. I get the impression that I have offended a few of you when I mentioned that I have had some success with excedrin, and I apologize if that is the case. I know it seems highly unlikely, but, in fact, I have. Please keep in mind that it only works for the first couple weeks of a cycle and then becomes useless. I guess for all intent and purposes it is useless but I was just trying to give you an idea as to my history. At any rate, as I mentioned I have been suffering from CH for almost 20 years. I have episodic CH and I have worked with 8 different Neuro's over the years. I am fortunate in that my employer provides excellent health care insurance and my current Neuro and Primary Care physician are excellent and have been wonderfully supportive. They are compassionate, patient, knowledgeable and most importantly, are willing to prescribe just about anything. They also do an excellent job in my monitoring and follow-up when I'm on new drugs and actually have checked in with me even during my pain free months. As far as general symptoms, pain locations & levels, and drugs that I have taken to treat ch, I did not think it was necessary to give you all the full run down in my first post because I had two specific concerns. However, I get the feeling it would have been helpful for you to verify the authenticity of my claim that I suffer from CH. I assure you I do. Again, after reading some of your stories, I feel blessed in that my cycles are still episodic and that the past couple of years have been mild, in that I have only had to endure one cycle each year for three months. Don't' get me wrong....those months have been shear HELL... (I think this post is to long so I will start a new thread to finish. ) Mark |
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Title: Re: New to the site Post by Prense on Jul 23rd, 2004, 4:40pm on 07/22/04 at 19:24:30, Curley wrote:
So far, I know of no one diagnosed with CH and MS. I have a friend, however, who was diagnosed with CH and a short while later, diagnosed with MS. The second neuro said the original CH diagnosis was incorrect. Anyway, I know of one other person like this. So, two instances of "incorrect" CH diagnosis, then MS diagnosis, but not both. There are a few folks here who complain of symptoms similar to those experienced with MS, but not diagnosed with it. Hang in there! Chris |
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