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Willly

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Worst cycle yet --gone chronic...
Mar 27^th, 2014 at 3:17pm

My wife insists that I continue to use only traditional methods... My O2 only goes up to 12 lpm. I'm on 400 mg of verapamil, and 400 mg of "dopamax," and I have plenty of ampules of 4% lidocaine to spray up my nose. My neurologist from Torrance Memorial is incredibly conservative. Does anyone recommend the USC Keck Headache Center or any other doc or headace center? I'm really willing to try anything.

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Bob Johnson

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Re: Worst cycle yet --gone chronic...
Reply #1 - Mar 27^th, 2014 at 6:14pm

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Bob Johnson

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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: Worst cycle yet --gone chronic... Reply #2 - Mar 27^th, 2014 at 6:16pm Your O2 dose is very low. Can you get a regulator that will deliver 15 to 25 lpm? Are you using a non-rebreather mask? How about going natural with the D3 vitamin treatment? I don't want to sound mean but who has the pain? You or your wife?
Back to top	« Last Edit: Mar 27^th, 2014 at 6:24pm by BobG » Stay stressed. Never relax. Never sleep. Ever. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Worst cycle yet --gone chronic... Reply #3 - Mar 29^th, 2014 at 10:38am I'll second the d3 regimen. It's had me pain free coming up on four years. And bobs right. The o2 level is way low. Lidocain ampules? I haven't seen that since the early 80s.....definitely time for a new doc. Joe
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Peter B CH.com Junior Offline I Love CH.com! Posts: 70 Boston, MA Gender:	Re: Worst cycle yet --gone chronic... Reply #4 - Mar 29^th, 2014 at 8:42pm for what its worth, last cycle my neuro had me go up to 1200mg (or so) of Verapamil. Finally worked. Of course, he watched me closely. But lower doses never worked for me.
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Imitrex4Breakfast

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Re: Worst cycle yet --gone chronic...
Reply #5 - Mar 29^th, 2014 at 9:39pm

You've had a lot of good responses already. I just wanted to add: Make sure you consult your doc before and if you decide to increase your dose of Verapamil because it can be a very dangerous medication. 240mg/day almost killed me. It slowed my heart rate down to 28 bpm.

Getting a high flow O2 regulator might make ALL THE DIFFERENCE.

Good Luck

I4B

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Worst cycle yet --gone chronic... Reply #6 - Mar 31^st, 2014 at 8:18am From another chronic: O2 25lpm+, chugging ice cold energy drink, Imitrex injectables...these are the preferred abortives. blessings. lance
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Worst cycle yet --gone chronic... Reply #7 - Apr 1^st, 2014 at 8:39am I forgot about the energy drink....as Lance mentioned, chugging an energy drink while breathing the 02...I use sugar free red bull......will speed up the abort for me and push back the come backer attack. Joe
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shoot

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Re: Worst cycle yet --gone chronic...
Reply #8 - Apr 4^th, 2014 at 5:03am

I found mine on the OUCH website in a PDF of recomended doctors,or you could try contacting someone that lives near you,there is a link on the left 'where we live'. If your wife isnt willing to support your willingness to try anything she clearly has no conception of the desperation of your situation,I go sleep in my truck when me and my wife are having trouble understanding each other. If your doctor was a true compassionate MD he would be more than willing to encourage you to try different treatments,to try anything that could help to end your suffering. I dont think he really understands what clusters are. I would think a neurologist who is familiar with treating cluster patients would be very aware of the highly unpredictable nature of these things,that what works today may not work tomorrow,they may go from a rightie to a leftie or change from episodic to chronic,or one cycle a year for 3 months to 3 cycles a year for 2 months.The only thing you know for sure is they hurt worse than anything you have ever encountered.You can rent an O2 tank from welders supply that will allow you all the o2 you can handle or buy one from craigslist.I know your desperation,if your wife doesnt or is tired of hearing about it sleep in your truck,if your doctor isnt helping you have to get another one,there are very good ones out there they are just hard to find.If you havent tried D3 go to walmart TODAY and get on the stuff,please. You just have to stop listening or worrying or even caring what anyone else says or thinks or feels about your situation,you have to get that monster beat down locked up or it will destroy you.

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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: Worst cycle yet --gone chronic... Reply #9 - Apr 27^th, 2014 at 3:51pm I am also a testament to the D3 regimen. I have been pain-free since January and started the D3 in December. Also, one alternative to the energy drinks to abort is a very strong cup of coffee, it worked for me. All the best wishes to you. -Andy
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Worst cycle yet --gone chronic... Reply #10 - May 18^th, 2014 at 8:58pm dont want to change course, but id like to hear a sound off on the amount of D3 you guys take in a day. Coach Bill
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Worst cycle yet --gone chronic... Reply #11 - May 18^th, 2014 at 9:23pm Hi Bill, I take 5000iu of vitamin D3 daily, together with the other cofactors.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Worst cycle yet --gone chronic... Reply #12 - May 18^th, 2014 at 9:55pm Same Bill, 5000 a day along with the rest of what Batch recommends. Joe
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CDog CH.com Veteran Offline Posts: 163 Rockies Gender:	Re: Worst cycle yet --gone chronic... Reply #13 - May 19^th, 2014 at 1:38pm !0,000 a day plus cofactors, but no help after 2 years...
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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: Worst cycle yet --gone chronic... Reply #14 - May 19^th, 2014 at 4:08pm 10,000 a day plus co-factors. Not completely pain free but sooooo much better.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Worst cycle yet --gone chronic... Reply #15 - May 19^th, 2014 at 6:03pm The vitamin D3 didn't work for me until I increased my dosage to 20,000 a day. For three weeks, I also did a loading dose of 50,000. After 5 months, I have now been able to decrease the amount down to 15,000 without starting to shadow. I had almost given up on the D3. I sure am glad I didn't.
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