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Title: Help!!! I am new... Post by firecracker7481 on Jul 8th, 2005, 7:34pm I don't know whether to Laugh or cry now that I have found this website. I am a 24 yr. old Female and I was just recently diagnosed as having CH. I have been suffering with this dissability for nearly 8 years now. I am episodic with cycles averaging once yearly although I am happy to report that up until my last cycle that ended in May I had been PF for nearly two years. I really used to think I was crazy, and actually most everyone else in my life did as well. It actually has not been until the past two years that my parents even began to believe how serious my condition was. They have now become my biggest supporters and were so glad to know that I have found a competent Dr. I really did not know what to think when he told me that I was now on his priority/special patient list. He gave me his back line phone # and introduced me to his entire staff. I guess my real question is if anything about the Medrol Dose Packs and Topamax. He told me that since Imitrex in pill form works for me as an abortive already that he wanted to keep me on Imitrex but switch me the Nasal Spray and that I should keep that along with Medrol on me at all times to attack the Headaches before cycle gets ingrained. Once I have my next bout with this I am to see him within 24 hrs and we will discuss preventative meds but that he is pretty sure that he would like start me on Topamax. I have not heard of any of these meds and just curious as to your opinions. I feel very confident with him in the fact that he is the first Dr. to really take me seriously and sympathize with what I was going through. Thank you so much for your time and consideration |
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Title: Re: Help!!! I am new... Post by AussieBrian on Jul 8th, 2005, 8:13pm G'day Firecracker, And the good news is that you've already crossed the major hurdles. Firstly, you've got a competent doctor you're happy with - almost unheard of here. Secondly, you've got family who support you. Thirdly, you've got us. Welcome home. |
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Title: Re: Help!!! I am new... Post by unsolved1 on Jul 8th, 2005, 8:34pm on 07/08/05 at 19:34:10, firecracker7481 wrote:
Maybe I am reading this wrong ?? Medrol DosePak is not an abortive medication. It's to be taken as directed. Hopefully it'll prevent some headaches. Anyhow, Welcome to the board. PF Wishes, Unsolved |
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Title: Re: Help!!! I am new... Post by don on Jul 9th, 2005, 10:17am Quote:
Clinically that is true but can be thought of as an abortive because it will break the cycle. Semantics. |
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Title: Re: Help!!! I am new... Post by marlinsfan on Jul 9th, 2005, 7:33pm Welcome! My cycles were yearly, but I had a period of 3 years pain free before my current cycle. My doc tried Topomax on me, and made my headaches worse. I stopped after 3 or 4 days, then switched to Prednisone. It's not a preventive med, its transitional while the preventive kicks in. My neuro did not want to put me on a real preventive med because he thought my cycle was ending. He was wrong. I'm finishing my 10th week on Monday.... The prednisone did me good, and I also started taking melatonin every night, and aborting with oxygen. I have not taken any Imitrex in about 6 weeks, I abort 100% with O2. I kill the daytime shadows with coffee. PF wishes. Jose |
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Title: Re: Help!!! I am new... Post by unsolved1 on Jul 10th, 2005, 12:01am Quote:
Never broke my cycle Unsolved |
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Title: Re: Help!!! I am new... Post by burnt-toast on Jul 10th, 2005, 2:06am on 07/08/05 at 19:34:10, firecracker7481 wrote:
Everyon here can provide an opinion regarding treatment options and tell you their experiences but that probably isn't going to provide the answers you need. One consistent thing about CHs is that different people respond differently to different treatments. And there is always the factor of each sufferer being willing to try different treatment options. The following two links will help you better understand the treatment options being prescribed by your Doc. who you will need to work with to establish the best med./treatment mix for you. http://www.rxmed.com http://www.nlm.nih.gov/medlineplus/druginformation.html There's a lot of good treatment information on the site that will be helpful in working with your doc. and give you more information regarding alternative treatments. Welcome abord and good luck in your search for answers. Tom |
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Title: Re: Help!!! I am new... Post by sarsie on Jul 11th, 2005, 10:04am I'm new too. Welcome! |
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Title: Re: Help!!! I am new... Post by Bob_Johnson on Jul 11th, 2005, 12:31pm If there is any comfort in your experience, it's that you are not alone. Headache. 2000 Oct;40(9):730-5. Related Articles, Links The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey. Klapper JA, Klapper A, Voss T. Colorado Neurology and Headache Center, Denver 80218, USA. OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen. PMID: 11091291 [PubMed - indexed for MEDLINE] --- Many folks have tried Top. and don't like the side effects. I'd ask your doc about them but your trust in him is to be respected as the final point in making the decision. |
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Title: Re: Help!!! I am new... Post by firecracker7481 on Jul 11th, 2005, 1:18pm Thank you all for the wonderful information. I am truly greatful for the websites as I really am not a fan of taking large amounts of medications. I really am highly intolerant of meds. until I am in a cycle and then my tolerance seems to shoot sky high. I really just want to learn everything I can so that I can be prepared for the next cycle when it hits. |
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Title: Re: Help!!! I am new... Post by Sandy_C on Jul 11th, 2005, 1:47pm on 07/11/05 at 13:18:54, firecracker7481 wrote:
Well, you've come to the right place. Read, Read, Read, and you will learn The people on this board are awesome! They have great knowledge and experience with this nasty visitor we get, and they are oh so very willing to help you. I'm PF right now, but I'm still here about every couple of days just because I want to continue to learn, and because I really like these people. They've become my extended family. Sandy |
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Title: Re: Help!!! I am new... Post by Kris_in_SJ on Jul 11th, 2005, 8:35pm Welcome to the family. Medrol should help since it really does act as a preventative. Watch the length of time you take it, though. Be sure it's being tapered down slowly. Depending on the length of your cycles, your HA's could end totally, or come back with a vengance. Verapamil at high doses is my prevent of choice (and that of many others here). Bob gave you some good links. I would urge caution regarding the Topomax (often called "Dopamax" here. It can cause severe side effects like memory loss, the inability to add 2 +2, and generally turn you into a zombie). Some people have no trouble with it, but others can't remember their own names. There are other prevents out there with fewer side effects. Regardless - you are lucky to have found a doc who understands, listens and prescribes. And - you've found a family who understands. Many Hugs, Kris |
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Title: Re: Help!!! I am new... Post by RichardN on Jul 12th, 2005, 1:47am Welcome, . . . . .and PLEASE investigate 02 as abortive . . . it works for many of us. I can't take triptans and 02 is my only abortive. I go nowhere without it. Be Safe, PFDANS Richard |
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