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jenrob2006
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On the edge...
« on: Jul 24th, 2006, 11:25am » |
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And ready to jump. I dont know how much more I can take. I went through an entire tank of O2 last night. I am getting hit non-stop. My cycle should be ending if not already over by now. Ever since the doc reduced the verapamil, it has been constant. I cant take it anymore. I am non-functunal and depressed. My doctor seems to be getting annoyed at me because I call him so often (you know once every other week).
Right now I am on 240mg of verapamil, 12 mg of melatonin, O2, and imitrex injections, which the past couple of times make me very sick when I take them, so I have been avoiding taking them. I dread each day and I am scared.
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nani
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Re: On the edge...
« Reply #1 on: Jul 24th, 2006, 11:50am » |
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Jen...no jumping allowed! 
I know you were thinking of trying kudzu, have you decided to try it? The verap won't help at 240 mgs, I'm afraid. The kudzu may do the trick, though. Try adding it very slowly, while you taper off verap. Watch your BP, you don't want it to get too low. Do you have a clustermasx yet? It will improve the oxygen delivery significantly. How about Red Bull?
Like the rest of us... remember... you are strong. We've all had moments when we felt we couldn't go on....but somehow (probably our stainless steel balls) we do just that. We're holding you by the elbows, OK?
Have a look at www.clusterbusters.com
It helped me, and many others. Hang on, girlfriend... it's going to be allright.
hugs and pain free wishes, nani
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Bob_Johnson
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Re: On the edge...
« Reply #2 on: Jul 24th, 2006, 11:51am » |
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Why was the Verap reduced? If this is a medical issue (other conditions which require the reduction)--then you have to negotiate with him. Print following and give to him.
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)
http://www.brightok.net/~mnjday/chtherapy.pdf
: 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;44:1013-101 .
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Bob Johnson
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jenrob2006
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AAAHHH! Make it stop!
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Re: On the edge...
« Reply #3 on: Jul 24th, 2006, 12:01pm » |
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on Jul 24th, 2006, 11:50am, nani wrote:
I know you were thinking of trying kudzu, have you decided to try it? The verap won't help at 240 mgs, I'm afraid. The kudzu may do the trick, though. Try adding it very slowly, while you taper off verap. Watch your BP, you don't want it to get too low. |
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I went to get the kudzu and the store was closed. 
I am not strong enough to drive right now, so I have to wait for my husband to get home to take me back. I had to reduce the verap because I have a minor heart condition and my ankles were swelling a lot and the doc was afraid of overloading my heart. I do have a clustermasx. It works awesome, but I ran out of O2 this morning, another thing we need to get. I've gone through two tanks since Friday.
I left a message for the doctor this morning, but no call back yet.
Thanks for the good thoughts guys, I really need them.
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Mattrf
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Re: On the edge...
« Reply #4 on: Jul 24th, 2006, 12:08pm » |
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Jen I know how you feel, I am in that same place right now.
All I can say is hang in there and do what you need to do to get through another day, there are people that need you in there lives so hang in there.
I know that it just seems like the monster is just too strong and you can’t beet him but you can, you just need to find that week spot on him and exploit it.
If you doctor is not helping and is not sensitive to your pain then fire his ass and find one who is, some one, not sure who it was but they said the best doctor is a doctor that suffers from headaches himself, a very wise statement, you may not find one of these but you can find a better one then you have. Somewhere on the board is a list of recommended doctors in each state, maybe someone can give you the link, I don’t remember where it was but the doctor I am going to I got off the list and he has been very good and understanding. Good luck and I hope you have some PF time soon.
Matt
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nani
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Re: On the edge...
« Reply #5 on: Jul 24th, 2006, 12:17pm » |
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Jen, check your messages.
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sandie99
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Re: On the edge...
« Reply #6 on: Jul 24th, 2006, 1:33pm » |
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Jen,
I'm so sorry that the beast is giving you hard time right now... 
I recall very well those moments when ch took me very down indeed. You did the right thing when you came online and told us. 
I see Nani has already mentioned Red Bull, which helped me on my last cycle. I once found the help from very unexpected source: I ate bit of ice cream and it actially killed that hit! Of course it worked only once, but still. Worth to try as anything else, I suppose.
I do hope that something works for your pain and soon. Lots of prayers and vibes are on their way from Finland!
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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chewy
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If I were you I would begin a prednisone taper. May or may not break your cycle but at least will provide a few days of comfort to regain fighting strength.
Not sure about that with a heart condition though. Run it by your Doc.
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Richr8
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Re: On the edge...
« Reply #8 on: Jul 24th, 2006, 2:15pm » |
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Sorry you are having such a rough time. For me it's 480mg Verap and a pred taper. Not recoomending either, in fact I would avoid the pred if at all possible, but I've been where you are and my own personal weakness forces me over the line. I don't even know if that's an option for you , just sharing my experience.
I hope you find something that brings you relief soon.
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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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Jimi
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Re: On the edge...
« Reply #9 on: Jul 24th, 2006, 2:38pm » |
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One other thing. Try the imitrex tip on the left. Most can get relief with only 1/3, plus it is cheaper. And if you have a heart condition, safer as well. Mine always got almost unbearable right before the cycle ended. Good luck.
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jenrob2006
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Re: On the edge...
« Reply #10 on: Jul 24th, 2006, 4:18pm » |
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I did a prednisone taper at the very beginning of the cycle. Did not work at all this time. I am going to read the imitrex tip again, the first couple of times I read it I did not fully understand it. Maybe I will have my husband read it.
The doctor just called me in Topomax to take along with the Verap. I have been on the topomax before, but never with Verap.
Oh how I hope this is the worst coming out before the end.
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starlight
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Re: On the edge...
« Reply #11 on: Jul 24th, 2006, 6:29pm » |
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Jen,
Can you try Barry's tip--I read it last night here on the boards. He says he is taking, I believe it was
3X 500 mg magnesium per day along with 3 X 500 mg taurine a day--he said it had helped him tremendously--he said that it works best in the 500 mg capsules. It seems like it couldn't hurt--we are all deficient in the magnesium. I hope you get relief soon. I know that this beast can be living hell. We are all here for you anytime.
Love,
Starlight
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starlight
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Re: On the edge...
« Reply #12 on: Jul 24th, 2006, 6:33pm » |
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Jen,
There is another very hopeful post about magnesium that I just now read posted today by Spidey under medications.
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TimJohnson
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Re: On the edge...
« Reply #13 on: Jul 24th, 2006, 8:35pm » |
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Jen,
I take Verpamil and Topamax as well as Depakote. I take 360 of Verapamil ( 1 and 1/2 pills a day. You will have to taper up with Topamax. Start with 1 twice a day for a week, 1 1/2 twice a day for a week and then 2 pills twice a day for a week 400 mg is probably the max dose they will put you on until the cycle is broken. Then they will want you to taper back down to 1 pill a day (100mg) twice a day. It will help until your body figures it all out. I take 02 and Imitrex tablets and injections for abortives. Red Bull does not work for me. This may sound crazy and it took me a long time to learn it but breathing exercises sometime get me through it. PM me and we can talk more. The Depakote seems to get me through the night.
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| « Last Edit: Jul 25th, 2006, 8:17pm by TimJohnson » |
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kevinpix
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Re: On the edge...
« Reply #14 on: Jul 25th, 2006, 8:36am » |
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Before I was diagnosed as chronic cluster, I, too was on imitrex shots and nose spray. It seemed to work to lower my blood pressure, nothing more. I, at my worst, was on 480 mg verapamil, two pills of cafergot, two pills of topomax, one lithium, one rimeron to sleep. I think the doctors are as much in question as we are. Don't get me wrong, there are some really good ones out there, doctors that is. It's just really hard for them to find the perfect "cure" when every clusterhead is so different. Hang in there, we are here to support each other, no matter what!! See Ya! kevin.
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chopmyheadoff
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Re: On the edge...
« Reply #15 on: Jul 25th, 2006, 8:43am » |
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hang in there girl . . dont jump 
i completely understand what your going through and many a time iv been rolling around drippling and screaming and thinking that i just cant take it anymore.
somehow we get through it and im sure your cycle will end soon
pfnad 
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George_J
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Re: On the edge...
« Reply #16 on: Jul 25th, 2006, 9:24pm » |
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Hang in there, jenrob. You've been giving the Beast a hell of a fight this time.
I know you'll get the better of It.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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CHTom
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Get yourself to a good pain clinic! Just make sure that they have a doc on staff that has experience dealing with cluster headaches-I am thankful every day that I got hooked up with a good clinic back in '96, otherwise I think that I would have blown my brains out.
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