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Topic: new family member (Read 330 times) |
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renny3
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new family member
« on: Mar 26th, 2004, 11:14pm » |
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Well, it looks like my husband has joined the ranks. He went to the neuro (one referred on ouch) and he's got CH alright. The dr seems up on the stuff, he gave him literature on CH, most of which is on here and mentioned his other "clusterheads" Imitrex but no O2 for now, the dr thinks he's finished with a cycle. It shouldn't be a problem getting it if (or when) he starts up again.
Thanks for all the info everyone. We got a decent doc, the right meds and a quick diagnosis thanks to you.
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FZfan
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Re: new family member
« Reply #1 on: Mar 26th, 2004, 11:30pm » |
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I'm awfully sorry its official, but at least you have the advantage of knowing a lot about it.
Just curious, but why not get the script for o2 anyway? I keep a tank at all times during remission. That way, I'm ready for the next cycle.
Of course, if you're doing a co-pay or otherwise have to pay for a tank rental during remission, consider welder's o2, or do what I did and buy your own e-tank.
You know the boy scout motto, be prepared!
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Luke63
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Re: new family member
« Reply #2 on: Mar 27th, 2004, 6:09pm » |
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I agree...get the O2...and keep it handy!!! Did wonders for me...bout the only relief i've discovered in almost 25 years!!
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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renny3
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Re: new family member
« Reply #3 on: Mar 27th, 2004, 11:19pm » |
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You guys make a great point. I wasn't there at the appointment otherwise I would've pushed for getting the script for O2 to go. I'm assuming it's 'cause the insurance thing. He has a followup in a couple of weeks, I'll have him get the script then. If something happens before then (HOPE NOT), I can whip him over to the hospital (2minutes away) where I work and put him on O2 myself if I have to. Take care.
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t_h_b
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primary chronic since 1999
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Re: new family member
« Reply #4 on: Mar 28th, 2004, 8:57am » |
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Yes, go ahead and at least get a script and insurance approval. It took me several weeks to convince the insurance company that I needed oxygen and actually get it delivered.
And since your husband is episodic you should be probably be stockpiling abortives for the next go-round.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Charlie
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Re: new family member
« Reply #5 on: Mar 28th, 2004, 6:59pm » |
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Welcome to the fold and sorry you and yours have to deal with this horror.
I agree that you should stockpile all the abortives you can. HMOs and the like are not on our side and you need all the backup you can get.
Let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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renny3
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Re: new family member
« Reply #6 on: Apr 5th, 2004, 5:38pm » |
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Well, it's been about 2 maybe 3 weeks h/a free for my husband.  YIPPPEEEEE!!!!!  I feel like I have my best friend back. Anyway, he had an MRI, should have results in a few days (just to make sure he's not "lucky" and has a brain tumor instead) Next appt I'll have him get another script for imitrex to stockpile and the script for O2, I can't remember exactly when the appt is. Thanks for the advice on stockpiling, excellent suggestion!
Anyway, one question. In the literature he got at the dr's , the is a sheet on a tyramine restricted diet. Apparently when tyramine builds up symptoms of severe hypertension, h/a s and nausea may occur. The diet restricts caffeine to 2 cups a day, avoid MSG, processed meats, etc. Has anyone heard of this?
I can't even tell you for sure this is for CH, it is a packet with info on numerous h/a conditions. I'll have to ask my husband and see if he knows.
Thanks
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BobG
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Re: new family member
« Reply #7 on: Apr 5th, 2004, 7:55pm » |
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Tyramine is a substance that forms from the breakdown of protein in certain foods. The longer a food ages, the greater the tyramine content is. Many folks here try to stay away from aged food like cheeses, overly processed foods and food high in nitrates.
Tyramine…from webMD site: click this
http://my.webmd.com/content/article/83/97899.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}
About the caffeine restriction….??? Beats me. I drink about 2 pots a day and it has never triggered a headache of any kind. Some medicines used to fight clusters are high in caffeine such as brand names Ercaf, Cafatine, Cafergot, Cafetrate, Migergot, Wigraine (these are all caffeine and ergotamine).
Welcome to the board.
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Stay stressed. Never relax. Never sleep. Ever.
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renny3
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Re: new family member
« Reply #8 on: Apr 6th, 2004, 2:53pm » |
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Thanks for the site, I saved it and will copy the info for my husband. Regarding the caffeine, what I have assumed is it's the withdrawl from caffeine that can trigger some h/a s. Like if I am on a caffeine binge for a few days and one day I don't have any I'll get a migraine. Maybe that is the purpose of the reduction. I agree caffeine helps the h/a s. When my husband would have bad "shadows" (I think that's how you put it) He would down some coffee and Exedrin migraine. (I remember I tried cafergot once when I had a migraine, I thought I was gonna die!) Anyway, I'll have him ask the neuro about the caffeine deal when he sees him next week.
Thanks
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buckeyescooter
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Re: new family member
« Reply #9 on: Apr 7th, 2004, 12:37pm » |
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If you can afford it, consider buying your own regulator...you'll save money in the long run, and you can often find them used at medical supply places. I got mine for around $60.00 many years ago and it still works great. I echo everyones advice about having the o2 script at the ready. No sense in trying to have to track down a doc. to write it once it hits. Glad you found the site....great people here with a wealth of info.
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Clusterheads are a rare breed.
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