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Topic: New Old Member (Read 415 times) |
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GaWd
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New Old Member
« on: Sep 27th, 2007, 6:42pm » |
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Hello everybody. I'm in week 3 of my CH cycle. Last time I had a bout of these was in 2001. I'm not sure how long it will last this time. This time, it feels worse than last time.
I've been awakened in the wee hours of the morning 3 times so far. Last night was the worst ever, ever, ever.
I saw the Dr. on Monday. She prescribed a Pred countback, Atenolol for my barely borderline BP(131/85), and MaxAlt.
I started taking the Maxalt that night when I felt my first CH coming on. It abated in about 15 minutes. The next time, at work the next day, it took about 30 minutes. It also seemed that I was getting refractory headaches after these headaches abated-about 4-5 hours after a dose of MaxAlt.
Last night I came home from work with a CH coming on. It got pretty intense and I took my MaxAlt and it went away. Come 4:30AM, I sat bolt upright in bed with a stabbing pain in my left eye. My lord this was intense.
I was up for about 1 hour crying on my wife's shoulder. I don't think she's ever seen me cry (sobbing, even!) from pain in the 7 years we've known each other. Well, last night she got it.  I'm a 290 pound muscly toughguy for god's sake!
I'm not sure where I'm going with this. I'm not certain I'm happy withthe MaxAlt, and I have to wait to see a neurologist on 10/8 for anything further.
I hope it tones down a bit. I have 2 jobs and I have an active 1 year old and I'm the sole provider for my family. I can't be down long.
Sam
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Rosybabe
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Re: New Old Member
« Reply #1 on: Sep 27th, 2007, 7:16pm » |
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Welcome HOME Sam!!
Sorry to hear the beast is giving you a hard time.
Have you ever tried Oxygen?
It is a very good abortive and does not give rebounds headaches as some meds can give.
You can print this information out and take it to your Doctor:
http://www.ouch-us.org/medications/oxygen/o2links.htm
There is also, melatonin (9-12mg) at night is good to keep the nights hits from coming,
Red Bull works pretty good for some.
There are meds working better as abortives (imitrex injections and Zomig nasal spray).
You have to be your best advocate and tell your Doctor what you need. Some Docs need a little more education about CH.
Hope you get to feel better soon and remember you are not alone.
Clusterville nevers closes!!!
Wishing you lots and lots of pain free time!!!
Rosy.
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GaWd
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I love YaBB 1G - SP1!
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Re: New Old Member
« Reply #2 on: Sep 27th, 2007, 7:34pm » |
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Well, as far as alternative drugs, I did forget to mention that I am also an epileptic, so my treatment options are more limited than most.
The Doctor that I spoke with today mentioned O2, and I'm all over it, but she told me that it was "impractical". We'll have to see what the Neuro says.
Thanks for your words.
Sam
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Rosybabe
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Re: New Old Member
« Reply #3 on: Sep 27th, 2007, 9:39pm » |
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on Sep 27th, 2007, 7:34pm, GaWd wrote:Well, as far as alternative drugs, I did forget to mention that I am also an epileptic, so my treatment options are more limited than most.
Topamax is also used for epilepsy and it has been effective as a preventative for CH.The Doctor that I spoke with today mentioned O2, and I'm all over it, but she told me that it was "impractical". We'll have to see what the Neuro says.
Impractical?, why? because you can't carry a big tank with you?..according to your post, the majority of your hits are at night, you are home, what would be impractical then?...Talk to your Neuro. and show him the information about Oxygen Therapy from O.U.C.H.
Good Luck!!
Rosy.
Thanks for your words.
Sam |
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Guiseppi
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Re: New Old Member
« Reply #4 on: Sep 27th, 2007, 11:06pm » |
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After almost 30 years of locking horns with the beast, too many meds to count, oxygen is still my number one abort. If there is any way you can get it, do so. I can abort in less then 10 minutes, often times in as little as 6 minutes.
To make it work, you must breathe pure oxygen, using a non re breather mask...(nasal canulas are totally worthless)...at a high flow rate, preferably 15 lpm or greater. You can't rebreathe your air and you can't breathe outside air or ir just won't work.
Welcome to the board, I hope that you get the oxygen and it works as well for you as it has for me!
Guiseppi
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soulroach
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Re: New Old Member
« Reply #5 on: Sep 28th, 2007, 6:35am » |
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I fully agree with those here who are pointing you toward 02. I just started trying the 02 thing about a month or so ago and it is a miracle! The melatonin tip is a good one too.
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bassman
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Re: New Old Member
« Reply #6 on: Sep 28th, 2007, 5:18pm » |
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o2 "impractical" i heard that myself but now it is my only abortive, well lets not for get the redbull. like you most of my hit come at night and melatonin helps keep most of them at bay but my dreams have gotten really weird. good luck to you and do all you can to get on o2
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it's all right now...but later?....forget it
thats later. now is now are you going to be here now
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Jonny
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Re: New Old Member
« Reply #7 on: Sep 28th, 2007, 5:31pm » |
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You have TWO jobs, a one year old chilld AND CH?
God Bless you, Sam!
Try the oxygen, its my best friend!
Good luck!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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DennisM1045
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Re: New Old Member
« Reply #8 on: Sep 30th, 2007, 12:02pm » |
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Hi Sam,
I have two jobs and several kids running around. O2 is my primary abort. I have an M sized tank in my bedroom for fighting the beast at home and I carry e-tanks to work to fight the beast there. I use a backpack to carry my emergency kit:
o O2 regulator
o non-rebreather mask with tubing
o one energy drink
o Imitrex Injector kit (if all else fails)
I never stop moving except when working. Chasing these kids around doesn't let me stay in one place too long  O2 does require some minimal planning but it is not inconvenient. Don't let them put you off what might be your best weapon with the least side effects.
Welcome back and good luck...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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sheep2blue
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Re: New Old Member
« Reply #9 on: Sep 30th, 2007, 10:33pm » |
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Hi Sam
Good Grief! O2 is not impractical! It's the darn CH that's "impractical"! Waking up at 4:30am with a hot poker sticking in your eye isn't very practical!
I take my O2 and Imitrex with me Everywhere!
And you are NOT a wimp when a CH reduces you to tears either! And don't let anyone tell you that you are!!
Glad you have a wife you can lean on. Hope she's reading here too. These folks, and my Neuro are the only folks who have a clue. It helps to have someone understand!
hope you can get some O2 soon!
Tabitha
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Beastfodder
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O2 and clusterbusters - naturally
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Re: New Old Member
« Reply #10 on: Oct 1st, 2007, 6:23pm » |
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Sam,
Huge sympathy to you it's a shitty place to be in.
Like many others my jaw hit the floor at the 'impractical' line. If CH isn't impractical I'd like to know what is, Hi Flow O2 should be your first port of call backed up with Red Bull.
I'm sorry I don't know more about epilepsy and the alternatives - might be worth speaking to someone at Clusterbusters for advice. The LSA based seeds (RC/HBW) are low intensity and all the active ingredients be it alternative or Triptan based (like Maxalt) have an awful lot in common seeing as they're both indole ring structures.
Can't hurt to ask.
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O2 and clusterbusters - naturally
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