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Topic: Cortisone (Read 210 times) |
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Summerbabe
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 Hello all I am new here been diagnosed with clusters for 8 years now. My neurologist has prescribed me cortisone . Has anyone tried this as a prevent ? Also on Verapamil, Immitrex and my handy dandy oxygen tank at 7 liters per minute. I am in my fourth week of cycle and they are bangers . Seems they are getting worse up to 3 a night now. Frustrated , exhausted, irritable due to lack of sleep and all the foods I cant eat as they may trigger. Drinking water . Anyone try cortisone? I have my docs scratching their heads. Help info needed.
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Racer1_NC
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Re: Cortisone
« Reply #1 on: Jul 6th, 2006, 2:19pm » |
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The flowrate on your O2 wouldn't help me.......it takes 15 lpm and a non rebreather mask to abort my hits.
Bill
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| « Last Edit: Jul 6th, 2006, 2:23pm by Racer1_NC » |
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Summerbabe
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Re: Cortisone
« Reply #2 on: Jul 6th, 2006, 2:22pm » |
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I asked my neuro to up it and he looked at me dumbfounded...I am gonna up it myself. how long do your attacks last?
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Racer1_NC
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Re: Cortisone
« Reply #3 on: Jul 6th, 2006, 2:25pm » |
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on Jul 6th, 2006, 2:22pm, Summerbabe wrote:| how long do your attacks last? |
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No abortives.....45-50 minutes. When O2 or Zomig nasal is used 10 tops............
Bill
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alchemy
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Re: Cortisone
« Reply #4 on: Jul 6th, 2006, 2:26pm » |
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Is your doc talking cortisone inj?
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Summerbabe
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Re: Cortisone
« Reply #5 on: Jul 6th, 2006, 2:29pm » |
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Hi Bill why zomig and not immitrex, have had zomig but know I cant mix triptans, its a no no..Doesnt seem like the Immitrex is working I have to ride the beast
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Summerbabe
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Re: Cortisone
« Reply #6 on: Jul 6th, 2006, 2:30pm » |
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Cortisone pills but has injection in my base of skull last week, it killed .
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LeLimey
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Re: Cortisone
« Reply #7 on: Jul 6th, 2006, 2:38pm » |
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Hello summerbabe its nice to meet you.
With o2 I use it at 15 LPM with a ClusterMasx which is a fancy kind of non rebreather. I can knock a hit dead within 5-7 minutes usually which is faster than anything else, triptans included that I have ever tried.
I hope that helps, contrary to how things may look we WILL do our best to help you - ALL of us 
Helen
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Summerbabe
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Re: Cortisone
« Reply #8 on: Jul 6th, 2006, 2:41pm » |
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Thannks for the info doll. I have a pedi mask, didnt know there is a mask for us cluster heads, do I notify my o2 company to get one?
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LeLimey
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Re: Cortisone
« Reply #9 on: Jul 6th, 2006, 3:06pm » |
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The clustermasx was invented by a cluster sufferer and is currently only available from his website. www.clustermasx.com
It costs $25 of which most is the cost of postage, he is in England, I can tell you that they are sold at cost though ie what it costs him to make them and post them and its the best investment you'll ever make.
Every clusterhead who uses O2 should have one - I can't tell you the difference it makes. When I first got mine I wanted to stop people in the street and tell them and even now, I am still in awe of just how bloody brilliant it is at aborting hits.
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Racer1_NC
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Re: Cortisone
« Reply #10 on: Jul 6th, 2006, 4:15pm » |
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on Jul 6th, 2006, 2:29pm, Summerbabe wrote:| Hi Bill why zomig and not immitrex, have had zomig but know I cant mix triptans, its a no no..Doesnt seem like the Immitrex is working I have to ride the beast |
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I tried Zomig first because of several reasons.....I really don't like some of the things I've heard about 'trex....most people that Zomig works for report you remain PF longer than if you use 'trex.
IMHO.....best abortive is O2.......even better is to find a prevent that works for you.
Bill
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Richr8
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Re: Cortisone
« Reply #11 on: Jul 7th, 2006, 12:19am » |
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on Jul 6th, 2006, 2:15pm, Summerbabe wrote:| My neurologist has prescribed me cortisone. |
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It's a member of the corticosteroid family of drugs. Prednisone, another family member, is a common script for breaking a CH cycle.
Pretty rough stuff, but effective for some, including me.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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FramCire
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Re: Cortisone
« Reply #12 on: Jul 7th, 2006, 1:02am » |
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WHo has the link to the article on treatment methods. I gave one to my doctor so he could read up on it. Dang, I forgot where I put the link.
Eric, can you copy it here. Great read for you and your doctor.
I never heard of cortizone for CH, but I am not a Doctor.... however i will be staying at a Holiday Inn Express tomorrow night.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Richr8
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Re: Cortisone
« Reply #13 on: Jul 7th, 2006, 4:10am » |
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Here you go Fram
http://www.brightok.net/~mnjday/chtherapy.pdf
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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E-Double
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Re: Cortisone
« Reply #14 on: Jul 7th, 2006, 12:30pm » |
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on Jul 7th, 2006, 1:02am, FramCire wrote:WHo has the link to the article on treatment methods. I gave one to my doctor so he could read up on it. Dang, I forgot where I put the link.
Eric, can you copy it here. Great read for you and your doctor.
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Here's my typical schpiel to newbies.......read on!
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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| « Last Edit: Jul 7th, 2006, 12:35pm by E-Double » |
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