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i_hate_the_pain
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How long do cycles range?
« on: Jun 29th, 2004, 10:24am » |
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Hello everyone,
Well I did not start the TOPOMAX, just heard so many bad things about it.. My GP wanted me to start tapering down the Verapamil and get off it so she can put me onto something different as the Verap was not working. Well I went from 120 mg 3 times a day down to 80mg 3 times a day starting yesterday and I am alreayd noticing a difference. That does not seem right does it? To start a lower dose and the HAs start getting better. I am still getting them but not so intense.
Also I started getting these SOBs on April 23rd, so over 2 months of torture.. How long does your cycles run? Is there a some light ahead for me to have a PF day andtime in the future? Even if just for 2 days!
I go back to the Neuro on Tuesday 7/6, and I am going to tell him I WANT AN ABORTIVE! No more darn pills either!! I am sick of popping 1000mg Ibuprofins throughout the day just to try and eleviate the pain, Though it don't stop the pain it helps to make it a little more bearable..
I don't want to hear that he can't give me OXYGEN at home.. I don't want to hear he can't give me IMITREX OR ZOMIG. I called my lovely insurance company and they will approve the O2, they will even approve home delivery of refills and if needed they will have a nurse come out and show me how to use the darn thing! I had them FAX me a copy of everything they recommend for people with clusters and what they approve. Which is everything I have read from you lovely people. They are aware of the problems Clusters deal with. They are up to date on treatments.
O2 will cost me a Co pay of 25 dollars for the whole set up and tanks, then every fill up is 25 dollars. As for the IMITREX and the ZOMIG the co Pay is 15 dollars for a months supply.
So he is going to give me something to stop the pain and if he does not then I have another appointment on the 20th of July with a different Neuro as I don't like the approach and treatment I get from my current Neuro. Good thing I don't need referrals to see a DR.
I kind of can't understand the current Neuro. I am usually good at understanding people of different languages, my childrens Ped is from India and I understand him perfectly. But my Neuro I don't knwo what country he is from but I sometimes can't understand what he is saying, plus he is not current on treatments obviously if he doesn't not give O2 at home says you can only get it at the Hospital and says Verap & Imitrex is Junk and NEVER works. 
Anyway if anyone can just let me know what your cycles range that would be great. And sorry so long, no one else to talk to as they just don't understand CH, not even my hubby can understand what I am going through.. I think my kids understand more then my hubby. But thanks everyone..
PFDs to all..
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thomas
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Re: How long do cycles range?
« Reply #1 on: Jun 29th, 2004, 10:25am » |
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Mine are usually 3-4 months. However my last one was only 3 weeks. I have also skipped two cycles since I've had this crap.
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Superpain
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Re: How long do cycles range?
« Reply #2 on: Jun 29th, 2004, 3:58pm » |
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My shortest was 3-4 months, longets was over 2 yrs...
I cannot stress to you strongly enough how bad you need to get a new doc!
Do NOT even waste your time with one more appt!
Will not give you O2?
Imitrex and verap are junk and never work!?!?! 
FUUUUUUUUCK that guy!!!!
Don't walk, run!
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Chris
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Kris_in_SJ
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Re: How long do cycles range?
« Reply #3 on: Jun 29th, 2004, 4:10pm » |
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Ditto to Superpain's reply!
My cycles last from 6-8 weeks, depending on how fast the Verap kicks in.
Whoever you see next, do not leave that office without some kind of abortive!
Hang in there .... Kris
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Superpain
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Re: How long do cycles range?
« Reply #4 on: Jun 29th, 2004, 4:14pm » |
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Keep tabs on E DOUBLE and see how his new doc at the NY headache center is.
If he ends up being good, check him out.
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Chris
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miapet
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Re: How long do cycles range?
« Reply #5 on: Jun 29th, 2004, 5:07pm » |
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Is the Ibuprofin causing rebound headaches?
*positive light and energy*
miapet
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E-Double
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Re: How long do cycles range?
« Reply #6 on: Jun 29th, 2004, 5:22pm » |
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That sucks!!!!!!!!!
Where in NY are you??
and what is this docs name so I know not to go near him!!!
I thought my current one was a doll, just happens to be sick and unavailable and did a couple of things out of whack with what the research suggests. Blah blah...
I will let you all know how this NY headache center is. Can't hurt and I got in pretty quick and it is on the OUCH recommended list!!! 
Call and try to get an appointment with anyone else I would think!! I sure as hell have been!!
to answer your question: I've been going hard now for 5 1/2 weeks. Short to some but longest for me and now they're all Fucking DAY!!! I miss just having those sweet little wake me uppers.
Feel well!
Eric E-Double
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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
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Gonna take a breath and try again.
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don
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Re: How long do cycles range?
« Reply #7 on: Jun 29th, 2004, 6:05pm » |
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Quote:| Hospital and says Verap & Imitrex is Junk and NEVER works |
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If you return to this nitwit you are only prolonging your agony.
My longest cycle was 9 months but that wasa way out of the ordinary. Usually 3 - 6 months for me.
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i_hate_the_pain
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Re: How long do cycles range?
« Reply #8 on: Jun 29th, 2004, 6:23pm » |
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EDouble,
I am near Albany NY.. The Dr is Dr. Lotman out of Neurolgical associates in Schenectady. There are allot of Drs in the practice and one of them is suggested on the OUCH website, I am calling them in the morning and asking to see the other DR if they refuse I will be heading to another Group at Albany Medical Center.
Thanks everyone for the advice..
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E-Double
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Re: How long do cycles range?
« Reply #9 on: Jun 29th, 2004, 6:51pm » |
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Good luck!!!
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Giovanni
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Re: How long do cycles range?
« Reply #10 on: Jun 29th, 2004, 8:57pm » |
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My last two were 4.5 months and the year before 5.5 months. I've been basically pain free since June 14, 2003 because of the mushrooms. I had one rouge CH in October 2003 and some shadows in February 2004. The mushies knocked those out and eliminated a certain cycle.
Best of luck to you i_hate,
John
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