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mike4nu
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Need some help
« on: Aug 9th, 2007, 5:31pm » |
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Just discovered the board and think it is just great. Wish I found it ten years ago.
I was finally diagnosed about 2.5 years ago and put on two weeks of steroid, 300mg of Verapamil 2x a day, and 300mg of lithium 3x a day. I had been about 6 weeks into my cycle when diagnosed and as soon as i started the meds the cycle stopped
I started my first cycle since then about 1.5 months ago. About 2 weeks ago my preventatives just quit working and now i'm getting hit all day and night. The immitrex works great (i'm going to start using the tip on prolonging).
I just moved to a small town and I'm going to see the Neuro tomorrow. I asked the lady if they had any CH patients and she didn't recall any.
My question is, what should I ask the Neuro. Should I ask him to raise my verapamil and lithium? Should I ask him to put me on some steroids? Should I ask for oxygen? Or is there something different I should be trying. I know this was wordy but I would appreciate any help.
Thanks,
Mike
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Guiseppi
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Re: Need some help
« Reply #1 on: Aug 9th, 2007, 5:53pm » |
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Not wordy at all, nicely put. My personal suggestion, definitely get the oxygen. Stops the majority of mine without the expense or side effects of the imitrex. I use the trex on occasion but only on the rare occasions when the 02 fails me.
Don't know what your weight is, you may wanna try kicking up the dosages on your meds. (But ONLY with the advice and assistance of your doctor as both have potentially serious...like dying....side effects if they're not used correctly and monitored by a professional). I weigh 190 pounds and use 1200 mg a day of lithium when I'm on cycle.
Good luck with the neuro!!!
Guiseppi
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mike4nu
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Re: Need some help
« Reply #2 on: Aug 9th, 2007, 6:04pm » |
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Thanks,
I weigh 200lbs so sounds like I should be able to increase the 900mg of Lithium.
Any idea on a daly max for Verelan? Like I said, I'm at 600mg a day right now.
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Guiseppi
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Re: Need some help
« Reply #3 on: Aug 9th, 2007, 6:31pm » |
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I'm really lucky because just the lithium alone has worked great for me. I know many people use that specific combo, I'm hoping some of them will chime in as I don't know how high you can go. Good luck!!!
Guiseppi
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Linda_Howell
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Re: Need some help
« Reply #4 on: Aug 9th, 2007, 6:53pm » |
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Mike,
Veralan is just another name for Verapamil. Most find relief in the 480-720mg range., but you should check with your doctor because you are unique and what works for some doesn't always work for everyone.
oh..........and GET A PRESCRITION FOR 02 WHILE YOU'RE THERE TOO. o. k. I'm done screaming. lolol
Linda
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mike4nu
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Re: Need some help
« Reply #5 on: Aug 9th, 2007, 6:56pm » |
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Thanks Linda.
Yeah, I knew what it was, but just wasn't sure what the top doses are. I have a feeling the Neuro will have no clue tomorrow, so I want to make sure he doesn't low ball me on a dose for no other reason than his ignorance.
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Guiseppi
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Re: Need some help
« Reply #6 on: Aug 9th, 2007, 7:06pm » |
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Smart man! You are going to be your own best advocate with these things. You'll find you spend a lot of time educating Neuros. Good luck, I hope you find an open minded one!!!!
Guiseppi
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E-Double
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Re: Need some help
« Reply #7 on: Aug 9th, 2007, 8:08pm » |
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You'll need to educate your docs so present them with literature and resources.
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
http://www.plainboard.com/ch/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"
[url]http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753[/url]
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.
I personally did better on standard release verses extended of verapamil and with lithium I finally gained stability for a while.
All the best and PF wishes.
Eric
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mike4nu
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Re: Need some help
« Reply #8 on: Aug 9th, 2007, 8:27pm » |
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Thanks, I appreciate it. I didn't realize how spoiled I was in a city with a headache clinic solely for migraine and CH patients.
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mike4nu
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Re: Need some help
« Reply #9 on: Aug 9th, 2007, 8:32pm » |
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Eric,
Do you have another link for the first site. It's not working for me. Thanks
MIke
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Jonny
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Re: Need some help
« Reply #10 on: Aug 9th, 2007, 8:36pm » |
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Way to go, E-dub!
I knew when I started reading this thread you would be in it with links. 
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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.
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E-Double
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Re: Need some help
« Reply #11 on: Aug 9th, 2007, 8:41pm » |
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on Aug 9th, 2007, 8:32pm, mike4nu wrote:Eric,
Do you have another link for the first site. It's not working for me. Thanks
MIke |
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Actually Mike it is the same as the 2nd link.
I guess the first one is no longer hosting the information.
If you were able to open the 2nd then you are set.
Be well!
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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mike4nu
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Re: Need some help
« Reply #12 on: Aug 10th, 2007, 12:39am » |
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Cool, thanks man.
mike
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mike4nu
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Re: Need some help
« Reply #13 on: Aug 10th, 2007, 1:12pm » |
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What a waiste. After an hour of questions probes and prods, the neuro stated that he agreed with my previous diagnosis of CH. Dynamite, thanks for that brilliant deduction. I informed him that the immitrex has continued to work wonders, but the preventatives no longer seem to work. I pushed very hard for Oxygen, however, he would not do it because he said he wouldn't know where to get it.
He left my verapamil and lithium levels the same, put me on steroids for 4 weeks, added amitriptyline at night, and added a lidocaine drop instead of immitrex despite my objections.
I am concerned because 1.) I am diabetic and 4 weeks of steroids will mess me up pretty bad, 2.)He got rid of the only thing that was working and left everything that wasn't, 3.) i'm getting hit pretty bad today and i've tried these lidocaine drops and I've felt zero relief.
I know you've all had similar experiences with doctors but this is very disheartening. I just move here to run a social services program, however, I fear I will need to move back to the city to get proper care for my CH.
Wishing PF for all
Mike
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phil_h
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Re: Need some help
« Reply #14 on: Aug 10th, 2007, 1:27pm » |
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doctor wouldn't know where to get oxygen??????????your whole experience scares me......i'd look elsewhere for competent care. phil h
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seasonalboomer
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Re: Need some help
« Reply #15 on: Aug 10th, 2007, 1:28pm » |
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on Aug 10th, 2007, 1:12pm, mike4nu wrote:What a waiste. After an hour of questions probes and prods, the neuro stated that he agreed with my previous diagnosis of CH. Dynamite, thanks for that brilliant deduction. I informed him that the immitrex has continued to work wonders, but the preventatives no longer seem to work. I pushed very hard for Oxygen, however, he would not do it because he said he wouldn't know where to get it.
He left my verapamil and lithium levels the same, put me on steroids for 4 weeks, added amitriptyline at night, and added a lidocaine drop instead of immitrex despite my objections.
I am concerned because 1.) I am diabetic and 4 weeks of steroids will mess me up pretty bad, 2.)He got rid of the only thing that was working and left everything that wasn't, 3.) i'm getting hit pretty bad today and i've tried these lidocaine drops and I've felt zero relief.
I know you've all had similar experiences with doctors but this is very disheartening. I just move here to run a social services program, however, I fear I will need to move back to the city to get proper care for my CH.
Wishing PF for all
Mike |
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Damn.... I'm not being flippant about this -- get rid of this lazy idiot and find a new doctor. What an ass.
1.)regarding the O2 -- you call your local medical O2 supplier - explain your situation -- ask them to write up what the doctor needs to supply them to give you the prescription for what you need. They can fax it to him and have him sign a scrip. gone is the excuse to not know where to get it.
2.) regarding dropping the imitrex in favor of lidocaine.....knowing what you know now about CH and say, for instance, it was your child instead of yourself that your doctor was treating as poorly, would you take this kind of ignorance as treatment. Many of us have experienced similar and posed with the same question would probably want to take the doc out to the woodshed -- but we take it if it is ourselves. Screw this doc! Find someone else.
3.) if you can have imitrex and O2 you may find that you can hlep manage the rest of the issues without prevents like the steroids.
I just lost my Dad this week -- they had done a photo DVD of him through his life and my sister and both were able to look at it and as it went by say, "yeah that we when he was back on the steroids for CH," for each photo that came up. That shit will wear you out.
Good luck - screw the doc.
Scott
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phil_h
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Re: Need some help
« Reply #16 on: Aug 10th, 2007, 1:41pm » |
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today print out the o2 info....take o2 info & dx with you to the er or to ems and seek o2........when i run out i go right to the local ems they always come thru...............coffe,ice packs/lidocane on a q- tip placed far into nostril head back 5 minutes , water,red bulls.......i do know when imitrex worked for me ...i would have gone elsewhere if removed........discouragement can fuel increased self advocacy,energizing your search for effective care...... phil h
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mike4nu
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Re: Need some help
« Reply #17 on: Aug 10th, 2007, 1:47pm » |
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I totally agree with you guys. Like I said, i'm in a small town with limited options. I am weighing them currently.
They told me to use a dropper for the lidocaine. Did you find it was effective when used on a Q-tip as you said?
I took all the printed info with me today but he wanted nothing to do with it. Apparently there is a doctor in the E.R. here in town who has CH. That is where this Neuro got the lidocaine idea from. Hopefully if I find him I can work through him.
If not I will need to go to another town or just move back to Omaha.
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phil_h
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Re: Need some help
« Reply #18 on: Aug 10th, 2007, 1:57pm » |
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i actually place two soaked q-tips up my nose as far back as i can without pushing thru anything...lie on my back for 5 minutes.....it numbs the pain somewhat....it never has aborted ch...good luck phil h
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phil_h
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Re: Need some help
« Reply #19 on: Aug 10th, 2007, 2:02pm » |
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you also can drive a distance to see neurologist or to obtain medical supplies............there is also welding tanks................but if md won't rx that he doesn't know enough about ch's....you can educate him or move on......i'd move on.... phil h
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phil_h
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Re: Need some help
« Reply #20 on: Aug 10th, 2007, 2:12pm » |
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moving back to a city is optional.....i won't i really can't get far away enough from noise,lights and over populated places....i lived in nyc at one time...seems like a lifetime ago....i had to go into nyc to the headache institute several x's,all the city motion and sounds triggered me..............i left there once i found a competent guy here....admittedly i'm on neuro #13....i actually fired 3 neuros in the practice where my current doc is....... i won't move location, just medical supports......phil h
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mike4nu
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Re: Need some help
« Reply #21 on: Aug 10th, 2007, 10:05pm » |
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Thanks for all the advice phil and others. I've located the Oxygen supply store and spoke with them. I now know exactly what I need from the doctor. They seemed really eager to help as soon as they get a Dr. order. If the neuro wont give me the script, i will go to the ER.
If it wasn't for this place, I never would have felt like I had enough knowledge to make this happen. Thanks again.
Mike
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rolo65
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on Aug 10th, 2007, 10:05pm, mike4nu wrote:| They seemed really eager to help as soon as they get a Dr. order. If the neuro wont give me the script, i will go to the ER. |
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What kind a neuro you got? Sounds like you found him at wallmart!
PF wishes to you and get a new neuroligist for your own good. Then leave a big a$$ bag of dog do on the old ones office entry with his name on it!  Rolo.
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