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Topic: Back from Mayo Clinic (Read 543 times) |
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Bond007
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Back from Mayo Clinic
« on: Oct 30th, 2006, 6:56pm » |
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The neurologist I saw at Mayo basically confirmed my neuro's diagnosis of CH. Although, he did modify it slightly and let me know that I am now officially "chronic". ugh. Dr. "C" (Mayo neuro) basically agreed with the approach my GP and neuro had done which was to start me off with Depakote, then move on to Topamax, considering my age and health. Since the Topamax hasn't been providing me relief, Dr. C changed my meds. Tomorrow I start a 16-Day prednisone taper along with 240 mg of verapamil (80mg 3x daily). I had my EKG and it was normal so everything's a go for tomorrow.
The only thing Dr. C disagreed with was that Dr. B (my current neuro) didn't start off prescribing imitrex & O2 as abortives and he wouldn't have given me the Stadol nasal spray. But, oh well, that's in the past. Time to move forward.
Other than that, nothing new to report on CH even from Mayo. Dr. C did suggest that I immediately start taking 9mg of melatonin. He noted a study done by an Italian researcher or doctor, I can't remember which, that noted that CH sufferers melatonin levels remain more constant during our cluster periods. So he surmised that taking additional melatonin would help CH. Most of us are already aware of this, but I thought it interesting that my doc would mention it.
Another interesting item he noted was my eye color. During my neurological exam he stopped and asked what color my eyes were and I responded with "Hazel. Why?" He told me he wanted to see what my response would be. He pulled out a book and showed me the study results from Kudrow's 1979 study where 2/3's of his participants had "hazel eye color". That along with my long family history of primary headaches some of which may have been mis-diagnosed years ago, he surmised that the deck was stacked against me.
Anyway, here's hoping that the pred & verap work for me. The melatonin started working in about a day and a half and I was damn near headache free for almost 5 days, which almost always happens when I introduce something new. Then, they typically come back. And, yes, they did start hitting me again Saturday on the flight home as the captain began fiddling with the cabin pressure. Yesterday was rather light for me. Today, I've already had 4 full blown CH attacks. The first one started promptly @ 7:00 am. Right on schedule.
Dr. C warned me to be ready to be VERY hyper when I start the prednisone. I guess I'm gonna feel like I was 18 again?? Oh boy.........Is that a good thing???? 
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Sometimes life bites you in the ass -- that's what drugs are for!!
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Ozark_E
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Re: Back from Mayo Clinic
« Reply #1 on: Oct 30th, 2006, 7:13pm » |
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How long were you on topamax, and what dosage did you get up to before Doc C decided to remove it from your regiment? Just curious. It didnt really do much good for meuntil I got to 200mg per day.
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RichardN
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Re: Back from Mayo Clinic
« Reply #2 on: Oct 30th, 2006, 7:54pm » |
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Hi Bond
Did I understand that you DID'T get a script for 02 . . . and if not, WHY not?
Be Safe. PFDANs
Richard
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Stju1970
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Re: Back from Mayo Clinic
« Reply #3 on: Oct 30th, 2006, 8:44pm » |
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I hope you feel better. Let me share your pain, and as well as others who have CH.
FWIW, my doctor started me out with Depakote, and Predinsone.
Now, Depakote, and Verapamil.
Besh regards,
Steve
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| « Last Edit: Oct 30th, 2006, 8:46pm by Stju1970 » |
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nani
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Re: Back from Mayo Clinic
« Reply #4 on: Oct 31st, 2006, 1:21am » |
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Oxygen? Most of us have to use 480 mgs and up (of Verapamil) for full prevent effects.
I have to say I'm curious about the hazel eye color thing. Drs Sewell and Halpern were checking out our eye color at our last convention, and were surprised at how many of us don't have hazel eyes. I believe that hazel eyes, leonine appearance and orange peel skin are old stereotypes, that have changed as diagnosing gets better.
Good luck and pf wishes, nani
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Stju1970
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Re: Back from Mayo Clinic
« Reply #5 on: Oct 31st, 2006, 8:19am » |
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on Oct 31st, 2006, 1:21am, nani wrote:Oxygen? Most of us have to use 480 mgs and up (of Verapamil) for full prevent effects.
I have to say I'm curious about the hazel eye color thing. Drs Sewell and Halpern were checking out our eye color at our last convention, and were surprised at how many of us don't have hazel eyes. I believe that hazel eyes, leonine appearance and orange peel skin are old stereotypes, that have changed as diagnosing gets better.
Good luck and pf wishes, nani |
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Why such a high dosage of Verapamil? Currently, I am using 120M, and will be increasing to 240M next month. Does this have to do with the severeity of the condition?
Why such a high dosage of Verapamil? Currently, I am using 120M, and will be increasing to 240M next month. Does this have to do with the severeity of the condition?
Should I disregard my doctor's advice? Because I don't want to continue increasing taking stronger medication. This is not a good habit. Also, I am not an advocate in this situation. JMO!
Thank you,
Steve
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| « Last Edit: Oct 31st, 2006, 8:29am by Stju1970 » |
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chewy
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Re: Back from Mayo Clinic
« Reply #6 on: Oct 31st, 2006, 8:22am » |
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Differant dosages of verap effect people in differant ways. Its not uncommon for a Doc to start you off low and increase the dosage until you reach an effective level.
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Bob P
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Re: Back from Mayo Clinic
« Reply #7 on: Oct 31st, 2006, 8:52am » |
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The info from the survey on this site shows that a larger % of clusterheads have hazel/blue eyes than the average population.
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drivin_blind
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Re: Back from Mayo Clinic
« Reply #8 on: Oct 31st, 2006, 10:22am » |
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Some how I missed or didn't see the eye color survey that had been done. That was the most interesting thing I noted. (I have hazel eyes) Dick
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Bond007
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Re: Back from Mayo Clinic
« Reply #9 on: Oct 31st, 2006, 10:53am » |
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on Oct 30th, 2006, 7:13pm, Ozark_E wrote:| How long were you on topamax, and what dosage did you get up to before Doc C decided to remove it from your regiment? Just curious. It didnt really do much good for meuntil I got to 200mg per day. |
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I'd gotten up to 300mg of Topamax a day when I started passing kidney stones and getting dizzy spells and falling down when standing from low seated or squating position. That's when I called my GP and asked how to come down off the Topamax. I knew I was going to Mayo in a little over a week anyway so I wasn't overly concerned about coming down off the drug. I expected my Mayo neuro to prescribe a new course of meds anyway.
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Bob P
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Re: Back from Mayo Clinic
« Reply #10 on: Oct 31st, 2006, 10:55am » |
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The info I can find says the national average for various eye colors is:
National CH
Brown 66% 33%
Blue 18% 32%
Hazel 10% 19%
Since blue/hazel eyes are predominantly a Northen European/Scandanavian trait, one would want to look into heritage and genetics in conjunction with CH.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Bond007
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Re: Back from Mayo Clinic
« Reply #11 on: Oct 31st, 2006, 11:19am » |
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on Oct 30th, 2006, 7:54pm, RichardN wrote:Hi Bond
Did I understand that you DID'T get a script for 02 . . . and if not, WHY not?
Be Safe. PFDANs
Richard |
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My neuro at home didn't prescribe O2 because he told me that many insurance companies still don't pay for the treatment because there are no scientific studies (to his knowledge) proving that it is effective in aborting CH. There is only anecdotal evidence to its efficacy. Even Dr. Goadsby concurred that there wasn't sufficient evidence to prove O2 was effective in aborting CH. My home neuro also said that it can be expensive and he's loathe to have his patients spend money on any treatments that may or may not work. Regardless, I ultimately got a script for O2 from my GP.
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Sometimes life bites you in the ass -- that's what drugs are for!!
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