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Topic: first post/longtime supporter (Read 342 times) |
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LisaofMN
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first post/longtime supporter
« on: Sep 10th, 2004, 2:29pm » |
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Hi All
I have been visiting site almost daily since June when my husbands cycle returned after a 2yr. remission.
He has had clusters for 20yrs.(started at 18yrs.old) I have been with him all of those years .
I do most of the research and talking to Drs. He has a hard enough time just getting through work and helping raise 3 kids.
First off, this site and the links has been very helpful.
We can relate to EVERYTHING you guys experience. Except for those of you who are chronic. I can't even imagine!! And that is where my question comes in.
My husband has been in this cycle for 3mo. Longest ever. He's on Verapamil and Predisone. Imetrix injections. Don't leave home w/o them! Thank God his neuro. gives a ton of samples. (insurance sucks)
O.k I'll get to the question: At what point did you chronics know that your cycle wasn't going to stop?
The thought of this scares the crap out of me.
Also thanks to you guys and the links, I knew enough to tell Dr. that his Verapamil should be upped. Wish I would have found this site yrs. ago.
Thanks for letting me vent. I'm going to lose it soon!
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thomas
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Re: first post/longtime supporter
« Reply #1 on: Sep 10th, 2004, 3:44pm » |
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You won't know if he's chronic, untill he has less than 30 consecutive days pain free, in a 12 month period. Wish I could be of more help. Has he tried zomig or amerge to abort the ch's?
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don
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Re: first post/longtime supporter
« Reply #2 on: Sep 10th, 2004, 4:05pm » |
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And that is 30 consecutive days.
Oxygen also helps.
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Kevin_M
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Re: first post/longtime supporter
« Reply #3 on: Sep 10th, 2004, 4:37pm » |
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I've had episodes last longer, all of them, from first trex to last. Don't be worrying yourself about chronic yet, just keep sampling.
Welcome, good to hear from you Lisa.
Kevin M
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EvertBoer
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Re: first post/longtime supporter
« Reply #4 on: Sep 10th, 2004, 5:04pm » |
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Hi Lisa,
I wouldn't worry about going chronic. For me (age 55, started at age 19), as I've gotten older, the remission periods got longer (last remission 5 years), but with longer remission periods the cluster episode lasted longer also (last one 7 months). Everyone's different, but varying lengths of remission periods and cluster episodes seems to be normal.
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IndianaJohn
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Re: first post/longtime supporter
« Reply #5 on: Sep 10th, 2004, 5:31pm » |
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Hi Lisa, have to agree with whats been written so far. My cycles vary quite a bit. I'm usually fall/spring, but I've had a three month one this summer and will be due for another this winter. Don't worry about his going chronic, odds are he won't.
Hope you both get some peace.
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Did my brains fall out or is this headache over?
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Jonny
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Re: first post/longtime supporter
« Reply #6 on: Sep 10th, 2004, 7:29pm » |
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on Sep 10th, 2004, 4:05pm, don wrote:| And that is 30 consecutive days. |
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You forgot to add that those 30 consecutive days are med free or not.....What a fucked up thing that is if you ask me 
Hang in there, Lisa.....READ!
.....................................jonny
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unsolved1
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Re: first post/longtime supporter
« Reply #7 on: Sep 10th, 2004, 7:46pm » |
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Like the others said ... don't worry about becoming chronic. Only a small percentage turns chronic. Anxiety doesn't help anything either.
Goodluck and hope your husbands' cycle ends soon.
Unsolved
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miapet
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Re: first post/longtime supporter
« Reply #8 on: Sep 10th, 2004, 11:20pm » |
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When D had his first CH, 20 years ago (and some months), he continued having them daily, until 17 weeks ago .. . I don't know the odds on an episodic turning chronic . . .I know it happens, but it appears that more episodics stay episodic then those who turn chronic.
As everyone has stated, don't worry about turning chronic (I know, easier said than done), and focus on the now. I also would encourage the reading, and trying o2, as it is helpful for a lot of people, and doesn't have the short term or long term side effects of all the drugs. When D used o2 it cut his h/a time down from a 40 minute average to a 7 minute average . . .much more 'do-able' in D's words.
*positive light and energy*
miapet
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LisaofMN
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Re: first post/longtime supporter
« Reply #9 on: Sep 10th, 2004, 11:23pm » |
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I knew I would get a good response from johny! Always like to read his input. Thanks guys . I won't panick yet. I just wish we could find a neuro. that knew what they were talking about. yesterday, I had a Dr. tell me that the only option was narcotics. Hello, we tryiing to increase quality of life, not put him out for good!
How can they not know that narcotics do not work for clusters! (on call Dr. , Not our normal Dr.)
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alleyoop
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Re: first post/longtime supporter
« Reply #10 on: Sep 10th, 2004, 11:53pm » |
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I started out chronic and unfortunately am still chronic although not nearly as bad as some. I have recently started the alternative treatment that D took. So far, so good! I'll post about it as more time goes by.
How long has your hubby been on the pred and when is he supposed to start his taper?
Welcome to the site. Ask all the questions you want. Sounds like your husband has a good supporter.
..............................alley
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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thomas
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Re: first post/longtime supporter
« Reply #11 on: Sep 11th, 2004, 12:08am » |
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on Sep 10th, 2004, 11:23pm, LisaofMN wrote: I knew I would get a good response from johny!
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Better drop that "h". It's Jonny, not Johny. 
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LisaofMN
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Re: first post/longtime supporter
« Reply #12 on: Sep 11th, 2004, 1:00am » |
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sorry jonny. My husband has gone through two tapers.
whenever he starts to taper down he starts getting the ch's back. He is so sick of being on 'roids. He always says he feels like a stuffed wood- tick, ready to bite someones head off (not good with 3 kids).
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ex_pat_asia
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Re: first post/longtime supporter
« Reply #13 on: Sep 12th, 2004, 2:36am » |
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on Sep 11th, 2004, 1:00am, LisaofMN wrote:
He always says he feels like a stuffed wood- tick, ready to bite someones head off (not good with 3 kids). |
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Lisa - bless you for your obviously supportive role. Not all CHr's have that. Also: your husband's metaphor for being pumped on steriods " A stuffed wood tick, ready to bite someone's head off" is really funny.
My personal view of steriods for cluster is that they are a two-edged sword. I am convinced they have have had a major role in helping me to manage my present cycle. Like your husband I am on a second taper after being off of the steriods for a week during which frequency began to increase again. However, steriods have significant risks associated with them in long term use that need to be well understood by any patient using them. This link has a good summary (though it dates to 2002) including a good paragraph on steriods.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Incidentally, I am into my fourth month of a cycle that started after four years of remission. I have had cluster for thirty years. So I agree with the general consesus herethat 3 months after a period of pain free years is not uncommon and not cause for alarm about becoming chronic.
I wanted to add an underscore to Don's post in which he mentions that Oxygen helps. I am a big believer in Oxygen since it works for me so well and since I have read that in some studies it was effective in excess of 80% of patients. Other studies mention 50 - 60 %. I like Oxygen better still when I realize that is cheaper (by far) then Imitrex, and it is entirely wholesome, with few side effects. The only downside documented in a study is that rebound headache can occur in up to 25% of patients using oxygen to abort headache. I have experienced these rebounds whereby the attack comes back after aborting with oxygen. This can happen in as short a period as 30 minutes, leaving me to feel that I am still fending off the same, original attack, and that the Oxygen simply deferred the attack. However, I have started a useful application of Cafergot to prevent that rebound. It has been very effective to take a cafergot (assuming that no triptan has been used in the previous 24 hours) after initially aborting an attack with Oxygen. I usually wait 10 minutes before I take it, simply to let my blood pressure and heart rate settle. This has all but prevented all rebound headaches. I consider an attack a rebound if it happens within a couple of hours of the last attack, but that is arbitrary.
I urge you and your husband to consider trying Oxygen.
Here is the OUCH link to the various medications used in cluster, including quotes on various studies of Oxygen.
http://www.clusterheadaches.org/library/medications/index.htm
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| « Last Edit: Sep 12th, 2004, 2:45am by ex_pat_asia » |
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ex_pat_asia
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Jonny
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Re: first post/longtime supporter
« Reply #14 on: Sep 12th, 2004, 3:01am » |
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Lisa,
Add some Lithium to the Verapamil and thank me later.
..........................................jonny
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synergy
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Re: first post/longtime supporter
« Reply #15 on: Sep 12th, 2004, 4:24am » |
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Hi Lisa and welcome to the board - im a surporter to marc (and i cant spell!) who has been chronic for 3 years. He has always been chronic so i cant help you with your question im afraid. Try not to worry about it hun, i know its hard.
But let me put it this way - it is not likely that your husband will turn chronic, BUT if he does you will be able to cope, you can cope with a lot more then you think you can.
You sound like a wonderful surporter lisa, keep strong and get him some O2!
luv sarah xx
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LisaofMN
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Re: first post/longtime supporter
« Reply #16 on: Sep 12th, 2004, 4:57pm » |
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Thanks to all for your advice. This is the first cycle that Tom hasn't gotten an O2 tank. He should have! he didn't want to spend the $300. Which looking back , was really stupid when he was doing $200 per day in imetrix. I saw on the board somewhere that welders O2 is the samething. true?? I'm sure we still have his mask and stuff from last cycle. He can get a tank from work. He's going to check it out. Otherwise, I'm just going to order it. I could have used a little this AM. It works great for hangovers, too. I'm a supporter, but haven't gone so far as to give up a cocktail on a Sat. night.
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BobG
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Re: first post/longtime supporter
« Reply #17 on: Sep 12th, 2004, 5:16pm » |
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Quote:| I saw on the board somewhere that welders O2 is the samething. true?? |
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True. Medical and welders 02 come out of the same tank.
No reputable gas supplier would sell contaminated welder 02. They would very quickly lose all their business.
The mask that Tom still has....it is a NON-rebreather type, right? And the regulator can deliver 10 to 15 lpm, right?
Go for it!
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LisaofMN
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Re: first post/longtime supporter
« Reply #18 on: Sep 12th, 2004, 11:03pm » |
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ex pat asia... Thanks for the link you provided. I went to it a few weeks ago and it was very helpful when talking to neuro. last week. she knew exactly which article I was talking about and adjusted Tom's meds. after I read part of it to her.
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