New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> New (not that I'm thrilled about it. . .) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1286498006 Message started by Lieutenant2 on Oct 7th, 2010 at 8:33pm |
Title: New (not that I'm thrilled about it. . .) Post by Lieutenant2 on Oct 7th, 2010 at 8:33pm
Greetings all. I ran across this site after some Googling, and after several months of suffering with this nightmare and not knowing what it was. So, I plan to lurk and do some reading, but figured it's only fair to introduce myself.
Reader's-Digest version, I started getting the occasional "migraine" (or so I thought) about six months ago. It always seemed to have a trigger, like spending 30 minutes in the hot tub. I chalked it up to random headaches. Flash forward several months, and they came so frequently that I just accepted them. I think I was in denial, and I just sucked it up. Finally, on September 1st, I got hit so bad on a flight from Baltimore to Pittsburgh that I wanted to pull the emergency door and jump. That prompted my first call to a doctor. One misdiagnosis as sinusitis, a little Imitrex, a CT scan, an ENT specialist, and a nine-day course of Prednisone has led me here. I've had nine days of peace, but I know that it's coming back. Here's the odd thing. . .I read about all the triggers and risk factors. I'm 38, in very good shape, just climbed Mt. Rainier, I'm a non-drinker, vegetarian. No personal or family history of anything like this. I guess that's what I find so frustrating. I really have no idea when to expect my next bout with these things, but it keeps me awake at night thinking about it. So, I'll be checking in to share my experiences. . .my doc seems confident that he can help, so I'll gladly pass along anything that works! -Mitch |
Title: Re: New (not that I'm thrilled about it. . .) Post by vietvet2tours on Oct 7th, 2010 at 8:44pm |
Title: Re: New (not that I'm thrilled about it. . .) Post by mikstudie on Oct 7th, 2010 at 9:21pm
The good news is the preds seem to have worked. I get hit once a year or so and the times the preds worked I would go a good year or so before having to kick the beast in the A$$ again. 9 days no pain is awsome,enjoy it.Dont let it change your sleep patterns,Melatonin 10mg before bed really worked great for me. Does your doctor have any prevent ideas in mind??
Oh, WELCOME |
Title: Re: New (not that I'm thrilled about it. . .) Post by Guiseppi on Oct 8th, 2010 at 12:02am
Welcome to the board Lt. I've been dueling with the beast for 32 years and have found the best results from a 2 pronged approach. Many use variations of this to deal with their CH.
1: A good prevent. A med you take daily, while on cycle, to reduce the number and intensity of your attacks. I use Lithium at 1200 mg a day, blocks 60-70% of my attacks. Verapamil is a common first line prevent, but at doses higher then most docs are used to, some go as high as 960 mg a day. Topomax also has a loyal following, often referred to as "dopeymax" due to its potential side effect of making you loopy. 2: a good abortive routine. An attack starts, now what. As Potter mentioned, 02 should be your first line abort. Read the 02 link on the left as it must be used correctly or it won't work. I can abort an attack using 02 in 6-8 minutes. Beats the 90 minute rides I used to take. Imitrex injectables are expensive but stop an attack even faster then 02 for me. I only use them when I get caught away from 02. Imitrex nasal sprays are cheaper then injectors and work for many. Pills don't work for most as they take too long to get into your system. Energy drinks, chugged at the onset will abort or reduce attacks for many, look for those containing caffiene and taurine, the combo of those 2 is the trick. Prednisone is a tricky one. For a small percentage, a short burst of pred will actually abort a cycle. For the rest of us, it's a temporary block, as soon as we stop the pred, the CH is back with a vengeance. For us, we use it as a transitional med, a 2 week taper of pred while we wait for our prevent to kick in. Then check out clusterbusters.com alternative therapies. Joe |
Title: Re: New (not that I'm thrilled about it. . .) Post by black on Oct 8th, 2010 at 2:16am Quote:
topomax didn't work for me. i think it would be much better in this site for each one to stick with just saying his own personal experience instead of trying present a general picture so a real view of a collective knowledge can be done to the viewer's mind instead of something else which might be far from truth. i ve been reading here a lot and i didn't get the impression that topomax has a loyal folowing and moreover a succesful one. let's try i instead of we. just my opinion |
Title: Re: New (not that I'm thrilled about it. . .) Post by Lieutenant2 on Oct 8th, 2010 at 8:58am
Thanks for the welcome, folks. I definitely plan to take a systematic and aggressive approach to these things, so I really appreciate all the input and information.
I'm also encouraged to hear that the positive reaction to Prednisone is a good thing. When my doctor prescribed it, I had an attack on my way to the pharmacy to fill it. I had to pull off the road and deal with it for 30 minutes or so. I popped that first pred (it was 60mg-40mg-20mg over 9 days) and didn't have a single attack the entire time. Yesterday was my last day on the pred, and I'm sure I don't have to tell you that I'm just sitting around waiting for the next attack now. My doctor says he likes to "play around" with the Prednisone on a limited basis, and also likes to use some calcium-channel blockers, etc. He seems to have my best interests in mind, but I'll continue to press him for specifics if and when these things return. Oh, and the melatonin. . .I have taken it in the past just to help me sleep on occasion, but always in 3mg doses. I'm going to have to do some reading here to make sure a higher dose won't turn me into a zombie! |
Title: Re: New (not that I'm thrilled about it. . .) Post by Guiseppi on Oct 8th, 2010 at 9:16am
I did a survey a while back on how much melatonin people were taking to prevent night time attacks. 9-12 was kind of middle of the road, with some at lower levels, and only a few at higher. Some combined the slow release with the standard release tablets, to get them thru the night. AS with everything else, trial and error are the rule of thumb. ;)
Joe |
Title: Re: New (not that I'm thrilled about it. . .) Post by Guiseppi on Oct 8th, 2010 at 9:34am black wrote on Oct 8th, 2010 at 2:16am:
We'll have to agree to disagree on this one! There are several members I know personally who succesfully use Topomax as a prevent. I believe newbies should be presented with high percentage treatments to discuss with their doctor. If I limit my postings to only what "I" have used it would leave off many high percentage treatments including the following: Busting, Imitrex Nasal Spray, Topomax, Verapamil, and that's just a few!!! Joe |
Title: Re: New (not that I'm thrilled about it. . .) Post by wimsey1 on Oct 9th, 2010 at 8:18am Guiseppi wrote on Oct 8th, 2010 at 9:34am:
Part of the board's power is in its collective wisdom. Part of the board's effectiveness is the community of fellow sufferer's who have found a camaraderie in discovering solutions to a solution resistant power. "I" am extremely glad to be part of this board, and "we" do an incredible job assisting "others" who find CHs so vexing. "We" are doing a great job, and "I" thank you. Blessings. lance |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |