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Need advice (Read 2427 times)
lorac
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Need advice
Aug 5th, 2009 at 8:49am
 
OK....Just when you think you've got it down.....

 I am confused, so bare with me.

Sunday night...1 bad attack...O2 did not work...I waited too long i think     Took zomig and oxycodone.  Can't remember after that!

monday night.... got hit every 2 hours  O2 did work. No meds taken


Tues....last night Got hit bad at 9:30 pm  O2 did not work. Took Zomig.  Hit 3 more times O2 did work for these.
 ( and at 9:pm I took melatonin. 3mg.)

OK so what should I try tonight?

I have Zomig, O2, melatonin, and Oxycodone 5mg.

  My cycle just started sunday night....just lots of warnings before that.    I Can't remember what worked for me 2 years ago.
I read about melatonin working for some here,and had it so tried it last night....My husband said I did sleep better. Just can't figure out what to take and when.   Can some one advise me.

  I don't know what to do next.  

Also, what can I take during the day, for the all day whipped out crappy mild hangover type headache?

Thanks    lorac
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Bob Johnson
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Re: Need advice
Reply #1 - Aug 5th, 2009 at 9:28am
 
You don't mention use of preventive meds, e.g., Verapamil...
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Bob Johnson
 
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lorac
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Re: Need advice
Reply #2 - Aug 5th, 2009 at 10:21am
 
Bob Johnson wrote on Aug 5th, 2009 at 9:28am:
You don't mention use of preventive meds, e.g., Verapamil...


I don't have them....I have been reading here, And trying to figure out what ones are best for that, so I can ask my doctor about it.

What are the best preventives?   I try not to take anything, but I know it sure would have helped me 2 weeks ago.

Can you direct me to a thread, that will be the most informative, I have seen mention of this and that all over the place, sooo confusing.

Thanks
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Bob Johnson
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Re: Need advice
Reply #3 - Aug 5th, 2009 at 11:09am
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Print following for your doc. He will recognize the source. It's a widely used treatment protocol.

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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FramCire
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Re: Need advice
Reply #4 - Aug 5th, 2009 at 11:26am
 
Id read the post above but here are some short thoughts:

1. Oxycodone would not be my choice.  I guess it worked for you since you don't remember which is better than being in pain, but for me all that kind of stuff will do is make me groggy and in pain.

2.  Make sure you are using O2 correctly and effectively.  That does include reacting quickly to the attack to abort it.

3.  Get to the DR right away and get on a prevent.  Use post above from Bob Johnson to help.

4.  Melatonin, for me was a prevent not abortive..... I can;t speak for others.  I had to take it for 3-4 days before it helped and the first few nights it was worse. 

5.  I would also suggest energy drinks.... yeah they might keep you awake longer, but they work well for me.

Just6a few random thoughts.  Good luck and keep asking questions until you have a regimen that is working for you.
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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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lorac
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Re: Need advice
Reply #5 - Aug 5th, 2009 at 4:14pm
 
Man...I can't thank you guys enough for helping me out.

I read that whole thing...But am having trouble printing it out for the doctor.  So working on that.

He may even know it...But shall talk to him about it soon. 

  I took melatonin on and off for the last couple months...just for better sleep...Like 3mg once in a while...Had I known, I would have been on it a lot more.  go figure!
    Thanks a bunch....I shall let you know how it goes next week. lorac
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BarbaraD
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Re: Need advice
Reply #6 - Aug 6th, 2009 at 5:59am
 
Have you read HOW to use the O2?  Just a thought -- you may NOT be using it at the right flow rate or with the right mask. It needs to be at least 15-25 liters per minute with a NONrebreather mask to work.

Melatonin has been working for me for years (I take 12-18mg a night).

Energy drinks work pretty good as an abort if you get to them as soon as the hit begins.

A good prevent will usually stop a lot of the hits, but we're all different and sometimes it takes a while to hit on the right one - don't get upset if the first try doesn't do it. Verap seems to be the one around here that works for MOST.

Patience is the best thing you can develop (easy to say - hard to do). Sometimes it takes a while to find your magic cocktail.

Hugs BD Kiss
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Brew
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Re: Need advice
Reply #7 - Aug 6th, 2009 at 7:32am
 
lorac wrote on Aug 5th, 2009 at 4:14pm:
I read that whole thing...But am having trouble printing it out for the doctor.  So working on that.

Highlight the text you want with your cursor, right click and <copy> with the mouse, then open a blank word processing document, right click and <paste> with the mouse. Then print. Easy.
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lorac
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Re: Need advice
Reply #8 - Aug 6th, 2009 at 8:23am
 
BarbaraD wrote on Aug 6th, 2009 at 5:59am:
Have you read HOW to use the O2?  Just a thought -- you may NOT be using it at the right flow rate or with the right mask. It needs to be at least 15-25 liters per minute with a NONrebreather mask to work.

Melatonin has been working for me for years (I take 12-18mg a night).

Energy drinks work pretty good as an abort if you get to them as soon as the hit begins.

A good prevent will usually stop a lot of the hits, but we're all different and sometimes it takes a while to hit on the right one - don't get upset if the first try doesn't do it. Verap seems to be the one around here that works for MOST.

Patience is the best thing you can develop (easy to say - hard to do). Sometimes it takes a while to find your magic cocktail.

Hugs BD Kiss


YIKES    I am taking 15 liters per minute, BUT...I checked my mask (cheap one they give ya)...and the little thingys on the sides were gone..found one on the floor...NO wonder...I shall try some tape on them....and look into the good masks here.
12 to 18 ml of Melatonin sounds like a lot...Do you gradually get there, or just dive in...what I have is only 3 mg...can you buy it in larger mg or do you just take many.?
    Thanks so much for the info.         lorac
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lorac
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Re: Need advice
Reply #9 - Aug 6th, 2009 at 8:24am
 
[size=14][/size]Thanks BREW  Smiley
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Re: Need advice
Reply #10 - Aug 6th, 2009 at 1:19pm
 
If I might offer one more piece of advice (you asked for it by virtue of the title of this thread  Grin ), go to the ch.com store at the left of the screen and get yourself an O2ptimask. Soooooo much better than the crap ones the oxygen supply house gives you.
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Re: Need advice
Reply #11 - Aug 6th, 2009 at 8:27pm
 
You need a proper mask, just what Brew said.
100% o2 with at least a 15 LPM regulator and a non-rebreather mask, preferably the o2ptimask. Get on it at the very first sign of a on-coming attack. Works wonders for me and so many here.

You should be looking into a prevent, I use Verapamil at 480mg daily, with the o2 is my cocktail.

 Barry

edited because I put my name in twice. LOL
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« Last Edit: Aug 6th, 2009 at 8:29pm by barry_sword »  

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lorac
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Re: Need advice
Reply #12 - Aug 7th, 2009 at 8:42am
 
OK.   I just now ordered my new mask!

Thanks so much barry and brew,,,and all others Smiley  and BJ  you are so informative. Smiley
You are so right those cheapie masks really are bad.

Cant wait till it gets here.

Last night I took 6 mg of melatonin, instead of the usuall 3, and did much better.  only 2 hits.!    May do 9 mg tonight..

have a doctors appt on wed......I shall ask him for verapimil.

   Thank you    Thank you   Thank you.    You guys are the GREATEST!!!!


What do you think about all this hormone (testosterone etc ) stuff I read on other posts???  wonder if I should ask about that stuff too.?
   
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Bob Johnson
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Re: Need advice
Reply #13 - Aug 7th, 2009 at 9:04am
 
Start with standard treatments and dosing and give it a chance before making changes. Too much experimentation blocks the ability to see what is working, or not.

Especially with the preventive meds, it takes several weeks, perhaps with dosing adjustments, to see how your body responds. Patience!!!
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lorac
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Re: Need advice
Reply #14 - Aug 7th, 2009 at 9:12am
 
Bob Johnson wrote on Aug 7th, 2009 at 9:04am:
Start with standard treatments and dosing and give it a chance before making changes. Too much experimentation blocks the ability to see what is working, or not.

Especially with the preventive meds, it takes several weeks, perhaps with dosing adjustments, to see how your body responds. Patience!!!


Once again you are so correct....I tend to want it all right NOW.

are you sure you are from this planet.??? You are sooo inteligent!
Grin Grin
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Re: Need advice
Reply #15 - Aug 7th, 2009 at 3:39pm
 
lorac wrote on Aug 7th, 2009 at 9:12am:
Bob Johnson wrote on Aug 7th, 2009 at 9:04am:
Start with standard treatments and dosing and give it a chance before making changes. Too much experimentation blocks the ability to see what is working, or not.

Especially with the preventive meds, it takes several weeks, perhaps with dosing adjustments, to see how your body responds. Patience!!!


Once again you are so correct....I tend to want it all right NOW.

are you sure you are from this planet.??? You are sooo inteligent!
Grin Grin



I have a theory that he is a robot that auto replies to certain phrases and questions.... but if that were true, the programmer would probably have to be even more intelligent than he is.

Anyway, make sure you tell your docs that you are taking melatonin..... not that there are any problems, but always make sure your doc knows all the over the counter stuff you are taking.
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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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Re: Need advice
Reply #16 - Aug 7th, 2009 at 11:02pm
 
You might want to read up on Kudzu on the old m-board button to the left.  Look under the Meds adn Treatments section.  I prefer it to Verap, fewer side effects and seems to work a bit better.  They all work differently for each of us.

One thing I would stress, STAY OFF THE OXYCODONE!  Was that subtle enough?  Opiates and opiate derivatives dont' work for CH.  What you will end up doing if not careful is becoming dependent on it and then addicted.  There are more than a few here who can attest to that.  I know the pain is bad, but you are strong, and it will not kill you.  It won't even cause any permanent damage, hard as that is to believe.

Keep reading.  There is a world of info available to make your life livable.

All the best,
Jerry
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lorac
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Re: Need advice
Reply #17 - Aug 10th, 2009 at 8:20am
 
Jerry....got it! no worries mate. The oxy is out.    I hate that feeling it gives me of being sooooo far off. Cheesy

and fram....good advice. I will tell my doctor about the melatonin, Which is great stuff (by the way) .  

Had a pretty good weekend, My Attacks are being so random now I just don't understand it.   Usually can set my watch to a hit.  But now????   Last night I had one at 6pm...and 0 NONE nada at night.!
    NOT complaining mind you.  Sure was great to sleep all night for a change.                                  thanks all      lorac

OH yeah.....I tried those drinks (used Hit Man )  It has 1000 mg of taurine. and it does work great!   wow.
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Re: Need advice
Reply #18 - Aug 10th, 2009 at 8:54pm
 
Hi Lorac,

I've ben using 9mgs of melatonin ov Smileyer my last two cycles and it has worked great. When I first tried it somebody on the board recommended that I cut out everything else as they felt the Mel was more effective that way. Don;t know if that's true but that's the way I went and it worked for me.
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lorac
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Re: Need advice
Reply #19 - Aug 11th, 2009 at 7:33am
 
Melvyn wrote on Aug 10th, 2009 at 8:54pm:
Hi Lorac,

I've bean using 9mgs of melatonin over my last two cycles and it has worked great. When I first tried it somebody on the board recommended that I cut out everything else as they felt the Mel was more effective that way. Don;t know if that's true but that's the way I went and it worked for me.


Good advise Melvyn.... I was wondering about that!
  Seems like it works really good for me, although I think it has knocked me out of any rhythm at all.  Don't know when I'll get hit...I am hoping It is on the way to none at all. Smiley   But I have also been doing the energy drinks.

Bob was right....one thing at a time!    Lorac
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