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Title: Just new... Post by crazy_mj on Aug 13th, 2004, 10:35am I really don't know quite how to start, so here goes... I have suffered from "headaches" since I was about seven. I remember they were really bad for the first year or so. My doctor diagnosed me with migraines and placed me on codien to treat them. I didn't stay on the medication too long, because the hangover affect the next day seemed no better than dealing with the headache. Growing up I would maybe have one or two real bad ones a year. I would always swear I was going to get help when they were in full force, but after they were done, I would forget. I was dealing well until after the birth of my daughter in October of 2002. It was like a switch was turned on, and there was no way to stop it. I used whatever I could get my hands on to deal with the pain. I was living off of Tylenol, Ibuprofen, sinus medicine, allergy medicine, and stored up pain killers. I would not go a day without taking something all day. I was having "headaches" almost every day of the week. The first spell lasted about two to three months and all was forgotten. Then, this February things kicked in again, and it hasn't stopped this time. I went to my doctor begging for help, he ordered a CT scan and diagnosed me with sinus infection/headaches and sent me to an ENT specialist. They took one look at me and sent me on to a neurologist who in turn diagnosed me with clusters. So, finally I have an answer, but still no end! I guess I believed with diagnosis would come relief, but after looking around this website I realize there will never be an end to the headaches. My doctor is trying me on medication, Verapamil, Maxalt, and Butalbital. The Verapamil is reducing the number of them, but the other stuff I just don't know about. I really don't like the Maxalt at all, and I could see the Butalbital becoming a problems down the road. So, I guess that sums up things for me right now. It is a relief to have a place like this to go to. These headaches can make me feel so alone and out of it sometimes. Thanks.... |
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Title: Re: Just new... Post by E-Double on Aug 13th, 2004, 11:02am Welcome to the family!!! Sorry it has to be but ya definitely found the right place. Most of us can completely understand your journey. It sucks to say the least but being here WILL make life seem that much better :) Like many (including you), I too went misdiagnosed or undiagnosed for ever before finally seeking or getting help. Hang in there. I have no reference for Maxalt yet like many a triptan it depends on the person. At first I loved Zomig then it did nothing other than give me a fuzziness??go figure. Imitrex injections seem to do the trick for me although I get the "hangover" Verapamil seems to be doing the trick for me for the most part. Butalbitol did nothing for me. In fact it all depends on the individual's body chemistry. Sucks but I guess we have to "tinker" alot to find the right cocktail. Hang in there, get some Oxygen, keep a detailed jounal and charts and talk to us!!!! Best to ya & here for ya! Eric |
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Title: Re: Just new... Post by ex_pat_asia on Aug 13th, 2004, 12:40pm on 08/13/04 at 10:35:38, crazy_mj wrote:
Hi Crazy, (and aren't we all at one time or another) It isn't a foregone conclusion that you will never be rid of the headaches. They sometimes disappear late in life. I used to have two or three cluster cycles per year. I am in the midst of one that was preceded by three years without an episode. Based on what you have written you have only scratched the surface in terms of different drugs and combinations to try. Be sure to divide your approach into two phases, abortive and prophylactic. These will likely be drugs and only will be taken during the episodes so you will have (hopefully) a largely pain free and largely drug free life if managed well, and then, (hopefully) it gets better with the declining frequency. Now note the word "Hopefully" because it is certain that we wll have different experiences. There is also the sad existence of chronic cluster headache, the definition of which gets a lot of attention from us here. One of the more worrisome aspects of our malady has to do with it's status as a disease that is under-attended to by the medical community and the insurers. That means that as a sufferer you will need to think of fostering strategies to deal with those hurdles. In terms of insensitive or uniformed Drs. thats pretty easy...simply change docs. In terms of insurance rules (such as those that minimize the amount of Immitrex they will underwite -- or that will not authorize Oxygen --one may have to get a little more clever. I guess the point I would make is you must be proactive in your treatment. You have a good start being here, and though there isn't one of us that is not sorry you need to be here, we also know you have found the right place. E-double is quite right to bring up oxygen as it is not mentioned on your list and it is one of the cheapest, and most natural treatments to employ for aborting cluster headache. It's downside is that it is not very portable and it is sometimes ineffective. Be sure to read up on it however, as it is a major cornerstone of many of the strategies used by the various clusterheads here. I have a paricular interest in sleep disorder as an aggravator of cluster headache. If you suspect that sleep or lack of it plays a role in your headaches then be sure to read about melatonin, and be sure to ask yourself is there is any chance you have sleep apnea. You may also want to explore the various reports on the drugs like Xanax, as a possible replacement for the barbiturate Butabital which I think could throw more gas on your fire then it could help. You also want to explore the more natural tools such as cold or hot compresses, caffeine (like a slug of expresso, my favorite headache chaser). Here si a link to these and others: http://www.clusterheadaches.org/resources/non_script_treat.htm Be sure and check out all of that site's useful links. Your post doesn't mention the use of a steriod taper. This has been very succesful to many with the most popular being Prednisone (though I am using betamethasone presently with what appears to be good initial results.) By all means, as doubleE said...keep posting, tell us more about your attacks, and ask away. There is a wealth of experience here. Cheers and Best Wishes For PFDAN |
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Title: Re: Just new... Post by synergy2120 on Aug 13th, 2004, 2:26pm Welcome to the family hun - sorry you have to be here though. Those two have basically sumed everything up that i was going to say expcept - STAY AWAY FROM PAINKILLERS - they dont do diddly squat for CH and can make it worse. Keep posting and let us know how everything goes Luv sarah xx |
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Title: Re: Just new... Post by crazy_mj on Aug 13th, 2004, 2:47pm I do have a question....I noticed that there is alot of mention of night attacks. I personally have only experienced one of those. Mine occur like clock work about 10:30 am and peak at around 3:00 pm. Is anyone else like this??? Or will mine develop into night attacks?? |
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Title: Re: Just new... Post by synergy2120 on Aug 13th, 2004, 3:26pm Most sufferers are woken from their sleep at night by the "beast" - some sufferers get the majority of their attacks in the night but i know this not so for all CH sufferers. luv sarah xx |
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Title: Re: Just new... Post by crazy_mj on Aug 13th, 2004, 3:52pm next question...is it possible for migraines to develop into clusters? Because I started out with migraines, and if so, what in the world causes the change??? I would have gladly stayed in migraine land...... |
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Title: Re: Just new... Post by E-Double on Aug 13th, 2004, 3:56pm on 08/13/04 at 15:52:56, crazy_mj wrote:
To my knowledge they don't change into CH. Migraines are migraines. Ch is Ch yet there are people who do have both: get them sepertely and some get CH with Migraine ontop of it. had that acouple times. Really bizarre feeling!! As far as the night time hits. those are pretty classic of the disorder yet none of us seem to be classic or classy for that matter ;;D Take care and hang in there. E |
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Title: Re: Just new... Post by synergy2120 on Aug 13th, 2004, 4:12pm Marc suffered with migranes from a young age and then got clusters - he now gets migranes on top of cluster but he laughs the migranes off! |
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Title: Re: Just new... Post by IndianaJohn on Aug 13th, 2004, 4:20pm Ditto to what everyone else has said. Stay away from the pain meds! |
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Title: Re: Just new... Post by crazy_mj on Aug 13th, 2004, 5:05pm That is exactly right about the migraines!! |
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Title: Re: Just new... Post by lionsound on Aug 13th, 2004, 6:13pm I have migraines and clusters(sometimes at the same time). Was diagnosed with clusters last year. Up until then I' didn't know what a CH was. had migraines as long as I can remember. Here's the thing.......Over the past four years I've kept pretty good journals and If I look back in them, now knowing the difference, I can pick out the Clusters vs. the migraines and I can remember other times in my life when I've had clusters, even back into high school and possibly before.(parts of my life I have mental blocks on) So although I thought CH was new to my menu of pain, it really wasn't. my headaches didn't change my knowledge did. Welcome! This place is great! ask lots of questions and read, read , read! |
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Title: Re: Just new... Post by thebbz on Aug 17th, 2004, 12:19am To answer simply yes, yes,yes. LOL Its impossible to out guess the beast, I've had daytime nighttime anytime. Sorry for your pain. Seems for me once in a cluster it's anytime all the time. BB |
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Title: Re: Just new... Post by BlueMeanie on Aug 17th, 2004, 12:01pm Welcome Crazy !!! Yes you can get CH's day or night. Have you tried 02? If Maxalt is not working, you should ask your doc about the choices of Triptons out there. Eveyone is different when it comes to meds. We all agree Narcotics will NOT work. Good luck to you. Sending PF Vibes your way !!!! |
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Title: Re: Just new... Post by crazy_mj on Aug 17th, 2004, 4:25pm I was just diagnosed about three weeks ago. So, no I have not tried to many of the meds out there. I did call my doctor yesterday because I just don't think the Maxalt is cutting it. The nurse told me to stick with it for awhile...part of me just wanted to strangle her, but I am too the point I will do whatever it takes just to have some relief. It seems that my cycles are on average five days long, with at the most five days in between. It is so hideous!!! I have been going strong like this since around February I think. Hell, can't keep track with my head being all messed up like it is. |
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Title: Re: Just new... Post by Superpain on Aug 17th, 2004, 5:46pm Crazy... you're cycle has been since Feburary. The breaks are just breaks, not the start and end of new cycles. I go on and off like that too. My cycles start out slowly and build over an extended period of time. The last one was 2yrs long. It sounds as if your cycle is behaving similarly. That means you could be in for a long haul. I'd suggest getting O2 if you don't already. See if your doc will let you have imitrex shots or maybe zomig NS, and perhaps try a prednisone taper. With any luck and the right meds you might be able to end the cycle. Good luck. |
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