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Cluster Headache Help and Support >> Cluster Headache Specific >> To pred or not to pred. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1265990944 Message started by krojo on Feb 12th, 2010 at 11:09am |
Title: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 11:09am
Greetings to you all. I hate the Beast and I love this site. Anybody with this disease, and especially those currently in cycle, have my sympathy.
I'm an episodic sufferer currently in what I think is my 5th ever cycle. It started about 5 days ago and has been getting pretty gnarly recently (3 attacks during last night). I'm using O2 but it seems a little less effective than in years past. My neurologist is out today and won't be back in the office until Tuesday. I told him that I have a bottle of Prednizone at the ready (from a scare last April). He advised me to start taking (100mg, 90mg...10mg) for 10 days. In my limited experience, Prednizone will keep the Beast at bay, but he comes back AS SOON as you stop taking it. This means that I can expect it to return about Monday 02/22. OK, here's my question... I have a sort of important trip booked 02/25 - 03/01. I'll be going out of town where I'll have no neurologist and no O2 - Just Imitrex which I'm not crazy about. Do you all think it's better to just suffer for a while and time my Prednizone to coincide with my trip or is that just crazy talk and you think I should take it now in the hope (like my doc' seems to think) that it could abort the whole cycle? Thanks, Rob |
Title: Re: To pred or not to pred. Post by Brew on Feb 12th, 2010 at 11:14am
You wanna delete one of these duplicate threads?
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Title: Re: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 11:39am
Not sure how I posted it twice, but I just removed the earlier one. Thanks for pointing out. I hope others have comments on my question.
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Title: Re: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 2:30pm
Thanks Bob. That is good advice and good information.
I called my doctor back and he agreed that it makes sense to start Verapamil at the same time as the Prednizone. He called me in a prescription for 240 mg. I didn't want to start with him on the phone about this short-release theory because he sounds quite impatient, but will talk to him about it when I visit him next week. -Rob |
Title: Re: To pred or not to pred. Post by seaworthy on Feb 12th, 2010 at 3:05pm
Personally I would wait until one day before the trip to start the pred.
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Title: Re: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 4:51pm
Thanks for your reply, Seaworthy.
Waiting could be a good option. So, my options now are: 1. Start with Verap and Pred. at the same time, today: Pros: May be cluster-free starting tonight, may cover the "lag time" of Verap, decreasing the overall number of headaches in my cycle. Cons: If Verap doesn't do it's job, I'll be exposed during my trip. 2. Start with ONLY Verap. today and wait until just before my trip (as you recommended) Pros: Good possibility that I'll be covered on my trip Cons: Will certainly continue headaches during Verap. "lag time" You advise #2. Is this because you don't have much faith in Verap? I sort of don't either. I've taken with my last few cycles, but never really thought I was sure of it's effectiveness. As we see in brief shared by Bob, this could be simply because of unsuitable dosing for me. I guess I'd like to hear you elaborate if you have more thoughts on the matter. Thanks, Rob |
Title: Re: To pred or not to pred. Post by Brew on Feb 12th, 2010 at 5:16pm
There is anecdotal evidence that verapamil may extend your cycle, thus increasing the overall number of headaches in your cycle.
240mg/day of verapamil is a relatively low dose for CH'ers. Most don't find relief until 360mg/day or higher (480mg/day is a common break point). That may explain seaworthy's lack of confidence in the verapamil - it's not the drug, it's the dosage. |
Title: Re: To pred or not to pred. Post by seaworthy on Feb 12th, 2010 at 6:55pm
Exactly. I dont go through a cycle without verap but thats at 720 mg per day.
I'd start your verap today and try to hold off on the pred until your ready to travel. Ask the Doc about an increase in the verap between now and the 25th. As for the lag time there are ways to manage. Bag of frozen peas, energy drinks, and good old strong coffee will help. |
Title: Re: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 9:32pm
Thanks guys for your comments. I've decided to start with the Verapamil and hold off on the Prednizone until my trip, but will be discussing with my neuro on Monday.
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Title: Re: To pred or not to pred. Post by krojo on Feb 12th, 2010 at 9:37pm
Beejeeper, yes I do have Imitrex injections and have been stock-piling for some time. Even so, I feel so uncomfortable taking a trip (away from O2) while in cycle, but maybe I need to just do it and rely on the Imitrex.
I have heard of the Imitrex trick, but never tried it. I think I will because I really dislike the feeling of a tight throat, flush face and so on that I get with a full 6mg injection. -Rob |
Title: Re: To pred or not to pred. Post by bejeeber on Feb 13th, 2010 at 1:43am krojo wrote on Feb 12th, 2010 at 9:37pm:
Now yer talkin! There are many Imitrex users here including myself who swear by this method. |
Title: Re: To pred or not to pred. Post by Tim Flanigan on Feb 13th, 2010 at 7:01am
;D ;DI had done the prednisone from 80mg then 75mg then 70mg down to 30 then the beast came back. I had a new procedure done called gamma knife surgery the day before thanksgiving it worked some how the neurologist used radiation to kill the nerve endings where the pain would be and also the nerve that made my nose drain. I still get a sense of a headache but without the pain. It is a good life now.
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Title: Re: To pred or not to pred. Post by seaworthy on Feb 13th, 2010 at 9:32am
Next time you get an RX for imitrex ask for the vials.
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Title: Re: To pred or not to pred. Post by hansfranz on Feb 25th, 2010 at 2:51pm
Hi i have just been diagnosed with CH after having them since 1993 :'( , the so called speacilists told me my back was the problem? i have almost killed myself over these :'( it all makes sense now. i am in New Zealand and am unsure about the 02 thing, my mum has a 02 concentrater, i have tried it and it works, is there something smaller? and where do you get them from? many thanks for youe help
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Title: Re: To pred or not to pred. Post by bejeeber on Feb 25th, 2010 at 3:10pm
Wow, Hansfranz, 17 years of being misdiagnosed. That's a crime, and I'm afraid an all too common one. The medical profession has just been blowing it big time in general when it comes to CH.
If an O2 concentrator works for you at all, well then I think that sounds like a very good sign that you are very responsive to O2, because the concentrator is less effective than breathing from an O2 cylinder, and doesn't even work for many CH'ers. Heck, when you graduate to using a cylinder, you may not even need a special hi flow regulator (for awhile at least??) In the US, and I imagine in New Zealand, O2 is obtained form medical supply places with a prescription from a doctor. A work around here when not in possession of a prescription is to just get the O2 cylinder from a welding supply place. If that concentrator continues to work for you, but you need one of your own, I wonder if you could buy a used one form someone? You might even want to start a new topic with this question, because you may get the attention of more responders that way. |
Title: Re: To pred or not to pred. Post by hansfranz on Feb 26th, 2010 at 3:18pm
Hi bejeeber, i think you may be right about the concentrator, the beast arrived 2:15am this morning so i did 15mins on the machine and all good, i decided to sleep in my lazy boy chair just in case it arrived back, my poor wife has seen me in such agony i try not to wake her any more, well 4:45am it arrived back so i took 10mg Maxalt Melt, this stuff works real quick 15mins and its eased. im in my third week of this now :'( going back to Drs monday to work out a plan. with this )2 do you sleep with it or just use it during an attack? thanks for your reply, i look forward to another. regards hans
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Title: Re: To pred or not to pred. Post by krojo on Mar 2nd, 2010 at 5:03pm
This is an old thread, but I just wanted to follow up since I'd gotten such good advice from you guys.
After 5 days of Verapamil (2 days at just 240mg, then 480 mg ever since) the headaches mostly subsided. I've had two really bad nights in the past two weeks, but other days have been almost pain-free. So, I never took the Prednisone and went on my trip. I was never a huge believer in Verapamil, but boy am I now. I guess I'd never taken a strong enough dose so early in the cycle. I hope it will continue to work this well in future cycles. Thanks, Rob |
Title: Re: To pred or not to pred. Post by Guiseppi on Mar 2nd, 2010 at 6:04pm
That's awesome news Rob, here's hoping it keeps the block up for ya!
Joe |
Title: Re: To pred or not to pred. Post by bejeeber on Mar 2nd, 2010 at 6:29pm hansfranz wrote on Feb 26th, 2010 at 3:18pm:
Hey Hanz, sorry, didn't notice your question til just now. I've never used a concenrator, but those of us using O2 cylinders just use them during an attack - hopefully catching it right at the onset for the best chance of aborting it. |
Title: Re: To pred or not to pred. Post by hansfranz on Mar 4th, 2010 at 2:36pm
hi i have ditched the concentrater and have been put on verapamil 40mg 3 times aday + sumatriptan once aday. only started yesterday, but looks like my dose may be low compared to the above comments. 3 weeks ago i was having 4 episodes aday this week its dropped to 1 a day but its just after i go to sleep. its nice to know i'm not alone with this. do you think smoking is the cause? i had a head injury when i was nine which left me with epilepsy, but all i have read indicates smoking, 1 article suggested and link between smoking and testostrone. thanks for your reply :)
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Title: Re: To pred or not to pred. Post by NancyB on Mar 4th, 2010 at 2:47pm
Unfortunately it could be one, all or none of the above. No one really knows. Blows hunh?
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Title: Re: To pred or not to pred. Post by hansfranz on Mar 4th, 2010 at 2:52pm
i suspected that dam means i have to eliminate everthing. excuse me but what does this mean? :)Blows hunh?
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Title: Re: To pred or not to pred. Post by hansfranz on Mar 4th, 2010 at 3:24pm
i have just two more questions, melatonin has any body tried this? and Verapamil - is it something you take for the rest of your life? my dr was unsure of this
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Title: Re: To pred or not to pred. Post by Brew on Mar 4th, 2010 at 3:34pm
Yes, many use melatonin around here, both in and out of cycle, but mostly in.
No, you don't have to take verapamil for the rest of your life. Only while in cycle. Sounds to me like your doc couldn't find his a$$ with both hands. Dump him. |
Title: Re: To pred or not to pred. Post by NancyB on Mar 4th, 2010 at 8:17pm
A lot of people here have tried melatonin and had good success, didn't much like it myself, that doesn't mean it won't work for you though. As for the other- I don't use it, but I think you only take it during yor cycle. There other here that can tell you a bunch more about it. You might want to start a new thread so you get your answers quicker.
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Title: Re: To pred or not to pred. Post by hansfranz on Mar 5th, 2010 at 12:42am
what dump the only Dr in new zealand who has heard of CH ;D i have leanrt so much from just talking here, i have actully in the past cycles tried to kill myself, that makes me mad at the med profession here, the only good thing about all this is that here my meds are susidised by the govt, eg i got a script today that cost $183, the real cost to me was $3
thanks guys |
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